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Department of Families, Housing, Community, Services and Indigenous Affairs

Evaluation of the MyTime Peer Support Groups for Parents and Carers of Children with a Disability or Chronic Medical Condition

15 February 2013

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Table of Contents

EXECUTIVE SUMMARY..............................................................................................................I

Background and research methodology.................................................................................................i

Conclusions........................................................................................................................................... iv

Recommendations.................................................................................................................................v

1. INTRODUCTION..............................................................................................................1

1.1 Background..................................................................................................................................1

1.2 Evaluation objectives...................................................................................................................2

1.3 Methodology...............................................................................................................................3

1.4 Presentation of findings...............................................................................................................5

1.5 Profile of participants/respondents.............................................................................................6

1.6 Quality assurance.........................................................................................................................8

2. LITERATURE REVIEW.......................................................................................................9

2.1 Introduction.................................................................................................................................9

2.2 Health and psychosocial functioning of parents and carers.......................................................11

2.3 Parent-to-parent mentorship....................................................................................................12

2.4 Peer support groups..................................................................................................................14

2.5 Conclusions................................................................................................................................17

3. ADMINISTRATIVE DATA REVIEW...................................................................................18

3.1 Introduction...............................................................................................................................18

3.2 Number of MyTime support groups operating..........................................................................18

3.3 Number of registered MyTime participants...............................................................................20

3.4 Average participation levels.......................................................................................................21

3.5 Costs..........................................................................................................................................22

4. OVERALL IMPRESSIONS OF PROGRAM..........................................................................23

4.1 Chapter summary......................................................................................................................23

4.2 Overall impressions and experiences.........................................................................................23

4.3 Program awareness and drivers for involvement......................................................................29

4.4 Understanding...........................................................................................................................31

4.5 Expectations...............................................................................................................................31

4.6 Achievements............................................................................................................................32

4.7 Challenges..................................................................................................................................33

5. PROGRAM IMPLEMENTATION......................................................................................37

5.1 Chapter summary......................................................................................................................37

5.2 Effectiveness of program implementation.................................................................................37

6. ENABLERS AND BARRIERS TO PARTICIPATION...............................................................48

6.1 Chapter summary......................................................................................................................48

6.2 Enablers to participation............................................................................................................48

6.3 Barriers to participation.............................................................................................................50

6.4 Managing non-attendance.........................................................................................................52

7. PARTICIPANT OUTCOMES.............................................................................................55

7.1 Chapter summary......................................................................................................................55

7.2 Benefits of participation to parents and carers..........................................................................55

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8. STRENGTHENING THE PROGRAM MODEL.....................................................................69

8.1 Chapter summary......................................................................................................................69

8.2 Suggestions for improvement....................................................................................................69

9. CONCLUSIONS AND RECOMMENDATIONS....................................................................75

9.1 Conclusions................................................................................................................................75

9.2 Recommendations.....................................................................................................................79

10. REFERENCES.................................................................................................................82

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Executive Summary

Background and research methodology

Background

The Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA) funds the Parenting Research Centre (PRC) to deliver the MyTime Peer Support Groups for Parents and Carers of Children with Disability or Chronic Medical Condition Program (MyTime).

MyTime commenced in April 2007 and provides peer support groups for parents and carers of children with disability or chronic medical condition up to and including 16 years of age. In 2011–12, over 3,031 parents and carers attended a MyTime group.

The PRC coordinates the program nationally and sub-contracts 15 Coalition Lead Agencies (CLAs) that variously have expertise in the areas of disability, family support, parenting and children with additional needs. CLAs are responsible for the localised implementation and management of groups within their coalition. Each group is supported by two workers – a Facilitator for parents and a Play Helper for children

In May 2012, ORIMA Research was commissioned to evaluate the effectiveness of the MyTime Peer Support Program service delivery model. The following evaluation questions were developed to guide the evaluation:

How effective has the MyTime program been in delivering its intended outcomes?

How can MyTime be modified to better achieve its expected outcomes?

Do differences in implementation of MyTime affect outcomes?

Are there differences in service delivery in metropolitan, rural and remote regions?

Are there any unintended consequences of the MyTime program (positive or negative)?

What are the barriers to the success of the MyTime program?

What benefits has MyTime had on parents and carers who attend MyTime peer support groups?

How beneficial are peer support groups?

Methodology

Fieldwork for the evaluation of the MyTime Peer Support program comprised the following qualitative and quantitative research activities:

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Qualitative research activities

1. 12 in-depth interviews with 12 program stakeholders, which comprised 10 interviews with Coalition Coordinators, and separate interviews with the PRC National Coordinator and relevant FaHCSIA staff, including the Program Manager.

2. 4 mini groups with parents and carers who are registered members of a MyTime group;

3. 3 in-depth interviews with Indigenous parents and carers;

4. 3 in-depth interviews with parents and carers from a Culturally and Linguistically Diverse (CALD) background; and

5. 5 post-survey follow-up telephone interviews with Facilitators and Play Helpers.

Quantitative research activities

1. An online survey of 139 Facilitators and Play Helpers; and

2. An online survey of 410 parents and carers who are registered members of a MyTime group.

Key findings

Overall impressions of MyTime Peer Support program

Overall, the impressions and experiences of the program from parents/carers, Coalition Coordinators, Facilitators and Play Helpers were very positive. The findings from both the qualitative and quantitative research from all three groups indicated that the MyTime Peer Support Program is delivering key benefits to parents and carers of children with disabilities. These benefits include providing parents/carers with a peer support network and giving them more information about how to care for their children. Consistent with its objectives, the program is also being successfully implemented in regional areas and for all sectors of the community.

For parents and carers, a key success factor for the peer support groups was the quality of the Facilitator and the Play Helpers. When the Facilitator was seen by parents as being empathic and skilled in facilitating discussions, parents reported productive group discussions and positive outcomes. In contrast, when Facilitators were seen to be too controlling, or were unable to manage the groups effectively, parents found the groups to be unproductive. Also, if Play Helpers did not effectively manage the children, this disrupted parent group sessions. Coalition Coordinators identified that lack of funding could pose a challenge to the success of the groups (as well as recruiting and keeping Facilitators), and Facilitators themselves reported that recruiting parents to participate was a key challenge.

Program implementation

Implementation of the MyTime Peer Support Program was generally considered to be successful by each of the stakeholder groups, although some groups were more positive than others. Perceptions of program implementation amongst stakeholders from FaHCSIA and the PRC were overwhelmingly positive, with both groups agreeing that the program was running smoothly and meeting its objectives. Parents and carers were also highly satisfied (90%) with how the groups had been run, and many cited the Facilitators and Play Helpers as key factors in the effectiveness of the program’s

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implementation. The majority of Facilitators and Play Helpers themselves (64% and 76%, respectively) also agreed that the program had been either highly or extremely effective.

In contrast, there were mixed perceptions among Coalition Coordinators about the effectiveness of the program’s implementation. A possible explanation for the variety of views held by Coalition Coordinators was the differences in processes used to manage the operation of peer support groups. For example, Coalition Coordinators that recruited staff through one large subcontracted agency were more effective at recruiting staff than those that recruited staff directly. In metropolitan and regional areas, Coalition Coordinators were positive about the location and accessibility of groups, but those in remote areas found this more of an issue for their groups. There was also substantial variety in how parents and carers were referred or introduced to the support groups.

There were two issues that most Coalition Coordinators agreed upon: that the reporting requirements, while seen as effective, could be made more efficient; and that the funding for the program was insufficient. In relation to funding, coordinators reported that the funding model did not fully cover delivery costs due to some groups meeting for more hours than they were funded for and, more generally, higher-than-funded costs associated with the establishment and administration of groups.

Enablers and barriers to participation

There was a high degree of consistency across different stakeholder groups regarding which factors were perceived to be enabling program participation by parents and carers, and which factors were seen as barriers to participation. All stakeholder groups agreed that the opportunity to gain a peer support network was an important participation motivator for parents and carers. Also, the provision of Play Helpers during these sessions was considered to be an important factor in ensuring the group sessions were productive, and in giving respite to parents and carers. The popularity of this service among parents and carers illustrates that the design of the program is sound, and is effective at meeting the needs of parents and carers in the support groups.

In order to achieve the program objectives of making the service accessible to all sectors of the community, it is important to overcome the access barriers identified in the research. There were three types of access barriers identified by stakeholder groups: physical access barriers (with some low-income or regional parents and carers not having their own transport to the groups); cultural barriers for CALD parents (due to the high cost of providing translators and translating written materials); and parents not being able to attend groups due to work or medical commitments. In overcoming these barriers, the key success factor that was identified was flexibility (of offering transport, translated materials, or session times) which will ensure that parents and carers across the community can receive the benefits of this program.

Participant outcomes

In both the qualitative and quantitative research with parents and carers, Coalition Coordinators, and Facilitators and Play Helpers, there was a general consensus that the MyTime Peer Support Program

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was delivering its intended benefits for participants. Across all groups, the main program benefit was consistently identified as giving parents and carers the opportunity to meet and share experiences with other parents and carers, and this was also seen to facilitate the other program objectives. For example, parents and carers increased their knowledge of caring for a child with a disability or chronic medical condition through suggestions and recommendations from other group participants (as well as from guest speakers). Often, parents and carers informed each other about government and community services available, and met outside scheduled sessions, increasing their linkages with the community. All stakeholder groups reported that parents and carers also felt more supported in their caring role, by the government, and by each other.

A key strength of a group support model is that once the group is established, the group can become self-sustaining, and the benefits of the group to members can exceed those originally intended. For example, group members can become involved in marketing the group via word of mouth to other parents and carers, and indeed all parents and carers who responded to the survey said either that they would recommend the group to others, or that they already had recommended it. Also, Play Helpers reported an important potentially unintended program benefit for the children of the parents and carers who did not have a disability or chronic medical condition. For these children (often siblings), the opportunity to socialise and play with children similar to their sibling reportedly brought increased understanding of their sibling’s condition, and potentially greater acceptance of them.

Strengthening the program model

The main suggestions for improvement concerned the implementation of management of the program, rather than the program’s design or purpose; reflecting the high satisfaction levels of stakeholder groups with the MyTime Peer Support Program. The main suggestion from Coalition Coordinators was a review of the funding model, to address the time they spent on out of session activities such as preparation or following up group members. Coalition Coordinators and FaHCSIA staff also agreed that the processes for establishing new groups and targeting resources could be improved. The focus of parents and carers (as well as Facilitators and Play Helpers) was on improving the organisation and frequency of groups, as well as providing more resources (staff and materials) for the group sessions.

Conclusions

The results from the qualitative and quantitative research conducted with all stakeholder groups indicated that the MyTime Peer Support Program has generally been successful in meeting its objectives. A detailed discussion of how the program performed against the key evaluation questions is contained in the Conclusions chapter. Overall, parents and carers were very satisfied with the peer support networks they had gained through the program, reported feeling more supported in their caring role, and more informed about caring for their children. The program aimed to make this

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service accessible to all sectors of the community, and although good progress has been made in this area, there is scope to improve on this initial success.

Recommendations

Findings from this evaluation point to several areas in which the MyTime Peer Support Program could be improved. Recommendations are listed below:

Promotion and marketing

Provide Coalition Coordinators and Facilitators with guidance and resources to more effectively promote and market the program to potential participants and referral sources.

Rationale: Awareness of the program among eligible parents and carers and potential referrals sources (such as health professionals) was often reported to be low by both Coalition Coordinators and parents and carers. Several parents and carers commented that they would have benefited from joining the group at an earlier stage had they been aware that the group was available. Coalition Coordinators perceived that existing resources had a generic focus and they believed that tailored promotional materials would promote and attract participants to the program more effectively. Coalition Coordinators would benefit from guidance from the PRC around ways they can market the program to potential participants and referral sources.

Funding issues

Revise the funding model to better account for higher costs associated with implementing and sustaining groups in regional/remote locations compared to metropolitan locations. Options for a revised funding model include introducing a two- or three-tiered approach (with higher payments allocated to groups in regional and remote locations compared to metropolitan locations). Funding levels reflecting the actual costs associated with service development and delivery would need to be developed. Alternatively, a flexible funding model could be developed. Under this model, the PRC would specify the outputs for service delivery and ask CLAs to respond with their own pricing structures. CLAs could be asked to demonstrate how they would propose to deliver groups within a set budget, or they could be asked to quote on the cost to deliver a certain number of groups, or groups in a certain location. This approach would provide a means of assessing CLAs’ value-for-money, and could lead to cost-efficiencies associated with service delivery innovation.

Rationale: Coalition Coordinators reported that costs were higher when establishing and delivering groups in regional and remote locations due to challenges such as remote management of staff, travel times associated with selecting venues and Facilitator travel times to and from groups.

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Revise the funding model to better account for higher costs associated with implementing and sustaining groups with CALD and Indigenous audiences. Options for a revised funding model could involve introducing a two- or three-tiered approach (with higher payments allocated to groups targeting CALD and Indigenous participants than other groups) or a flexible funding model could be developed, as outlined above.

Rationale: Coalition Coordinators advised that costs associated with running groups with CALD parents and carers are higher due to the need for interpreters (and need for interpreted materials) while groups for Indigenous parents and carers took longer to establish (due to cultural protocols and generally remote location).

Recruitment and retention strategies

Conduct future research to explore whether specific employment-related factors in CLAs contribute to challenges in the recruitment of Facilitators and Play Helpers.

Rationale: Coalition Coordinators identified recruitment and retention of Facilitators and Play Helpers as a key program delivery challenge.

Foster retention of Facilitators and Play Helpers by ensuring they have regular access to PRC news, information about PRC professional development resources and access to ongoing professional development opportunities to maintain their level of skills and motivation.

Rationale: Awareness and usage of the range of PRC professional development resources appeared to be limited. Access to professional development opportunities varied according to the CLA under which Facilitators and Play Helpers were employed.

Promote increased attendance and retention of program participants through the formal sharing of better-practice case studies between CLAs and Facilitators and Play Helpers.

Rationale: Maintaining solid attendance levels at groups among program participants was one of the key program delivery challenges identified by Coalition Coordinators and Facilitators. There was evidence that Coalition Coordinators, Facilitators and Play Helpers valued informal opportunities to share information and learnings about their groups, including factors which have sustained participation in groups.

Consistency issues

Develop minimum content/curriculum standards to minimise a narrow range of activities in the implementation of groups, and to ensure that groups provide a broad range of learning opportunities for program participants.

Rationale: There was significant variation in the implementation of MyTime groups. Whilst most groups appeared to have achieved a balance in meeting parents’ and carers’ needs for information with their needs for respite, other groups were more firmly rooted either in the information/educational model or the ‘pampering’/playgroup/respite model.

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1. Introduction

1.1 Background

The Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA) funds the Parenting Research Centre (PRC) to deliver the MyTime Peer Support Groups for Parents and Carers of Children with Disability or Chronic Medical Condition Program (MyTime).

MyTime commenced in April 2007 and provides peer support groups for parents and carers of children with disability or chronic medical condition up to and including 16 years of age. In 2011–12, over 3,031 parents and carers attended a MyTime group.

The PRC coordinates the program nationally and sub-contracts 15 Coalition Lead Agencies (CLAs) that have expertise in the areas of disability, family support, parenting and children with additional needs. CLAs are responsible for the localised implementation and management of groups within their coalition. CLAs may deliver groups themselves or arrange for other organisations to host one or more groups.

The current three year funding agreement will expire on 30 June 2013. FaHCSIA has allocated $10.5 million over three years to this program from 2010–13, with over $3.5 million allocated for 2011–12.

MyTime Peer Support Groups

Groups are provided across 262 locations in the community and just over a third of the groups are in rural/remote locations. To be eligible to attend a group, parents and carers must be eligible for Carer Allowance (Child).

MyTime Peer Support Groups are supported by two workers – a Facilitator for parents and a Play Helper for children.

Facilitators work with participants to help them get to know each other and to provide information about services, supports and resources in their area.

Play Helpers organise play activities, such as singing, drawing, playing with toys, for children under school age while the parents participate in activities and discussions.

MyTime aims and objectives

Parents of children with disability are at significant risk of isolation and are often socially disconnected from family and friends due to the intensity of their caring role.

The objective of the MyTime Peer Support Groups is to establish and maintain peer support groups that ensure:

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parents and carers who participate in MyTime Peer Support Groups develop relationships with other parents of children with disability or chronic medical condition;

parents and carers participating in the MyTime Peer Support Groups have an increased knowledge of caring for a child with disability or chronic medical condition;

strong linkages exist between MyTime Peer Support Group participants and the broader community, including relevant partnerships, and appropriate networks; and

parents and carers who participate in MyTime Peer Support Groups feel supported in their caring role.

MyTime Peer Support Groups aim to achieve the following:

being open and accessible to parents from all sectors of the community, including mothers and fathers, carers, culturally and linguistically diverse groups, Indigenous families, families in non-metropolitan areas and single parent families;

support early childhood development and provide culturally and developmentally appropriate activities;

support parenting education and skills development;

support the development of social networks for families of children with disability or chronic medical condition; and

foster social capital and build local capacity, community connectedness and partnerships.

1.2 Evaluation objectives

The overarching evaluation question was:

Is the MyTime service delivery model an effective model?

Specific evaluation questions included:

How effective has the MyTime program been in delivering its intended outcomes?

How can MyTime be modified to better achieve its expected outcomes?



Are there any unintended consequences of the MyTime program (positive or negative)?

What are the barriers to the success of the MyTime program?

What benefits has MyTime had on parents and carers who attend MyTime peer support groups?


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1.3 Methodology

Data collection for the evaluation of the MyTime Peer Support program comprised the following qualitative and quantitative research activities:

Qualitative research activities1. in-depth interviews with 12 program stakeholders; which comprised 10 interviews with

Coalition Coordinators, and separate interviews with the PRC National Coordinator and relevant FaHCSIA staff, including the Program Manager.

2. mini focus groups with parents and carers who are registered members of a MyTime group;

3. in-depth interviews with Indigenous parents and carers;

4. in-depth interviews with parents and carers from a Culturally and Linguistically Diverse (CALD) background; and

5. post-survey follow-up telephone interviews with Facilitators and Play Helpers.

Quantitative research activities1. An online survey of 139 Facilitators and Play Helpers; and

2. An online survey of 410 parents and carers who are registered members of a MyTime group.

Program stakeholder interviews

Twelve in-depth interviews were conducted with a total of 14 program stakeholders. The purpose of these interviews was to explore stakeholders’ perspectives on the effectiveness of the MyTime Peer Support Program service model.

Of these twelve interviews, eleven were conducted over the telephone while one was conducted face-to-face. Interviews were conducted between 10 September and 12 November 2012, and took between 30 to 60 minutes to complete.

A copy of the program stakeholders’ interview discussion guide is located in Appendix A.

Parent and carer mini focus groups and interviews

Qualitative research with parents and carers registered as members of the MyTime program took place via a combination of mini focus groups and in-depth interviews. The purpose of these sessions was to explore parents’ and carers’ perceptions and experiences of attending MyTime groups.

Face-to-face interviews were conducted with three Indigenous parents and one CALD parent, whilst the other two CALD parent interviews were conducted over the telephone, using an interpreter from the Telephone Interpreting Service. Mini focus groups and in-depth interviews were conducted between 17 and 29 October 2012; mini groups went for 1.5 hours whilst interviews took between 45 and 60 minutes.

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A copy of the focus group/in-depth interview discussion guide is located in Appendix B.

Facilitator and Play Helper interviews

Five follow-up interviews were conducted with Facilitators (n=4) and Play Helpers (n=1) at the conclusion of the online survey for this group. The aim of these interviews was to explore more fully issues identified through the online survey.

All interviews took place via telephone and were conducted between 8 and 21 November 2012, and took approximately 20 minutes to conduct.

A copy of the Facilitators’ and Play Helpers’ follow-up interview discussion guide is located in Appendix C.

Online surveys

ORIMA Research designed two 15 minute online surveys: the first survey explored Facilitators’ and Play Helpers’ perceptions and experiences of the MyTime program, whilst the second survey canvassed parents’ and carers’ perspectives of the program.

The Facilitators’ and Play Helpers’ survey was in field between 18 September and 3 October 2012, while the parents’ and carers’ survey was in field between 10 and 29 October 2012.

Please note that parents and carers for whom we did not have email addresses had a letter containing survey details – including a unique username password – mailed to their home address. In this way, all program participants were given the opportunity to provide feedback, not only program participants who had chosen to provide an email address to the PRC.

Copies of the Facilitators’ and Play Helpers’ survey questionnaire and the parents and carers’ survey questionnaire are presented in Appendix D and Appendix E respectively.

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1.4 Presentation of findings

The research design incorporated both qualitative and quantitative data collection.

Qualitative research

Qualitative findings from the in-depth interviews and focus groups are presented in a qualitative manner. This research approach does not allow for the exact number of participants holding a particular view on individual issues to be measured. This approach therefore provides an indication of themes and reactions among research participants rather than exact proportions of participants who felt a certain way.

In this report, qualitative research refers collectively to data collected during the in-depth interviews and focus groups. When data has been collected through a single data collection method, this approach will be stated.

The most common findings are reported except in certain situations where only a minority has raised particular issues, but these are nevertheless considered to be important and to have potentially wide-ranging implications/applications. Quotes have been provided throughout the report to support the main results or findings under discussion.

Quantitative research

Percentages presented in the report are based on the total number of valid responses made to the question being reported on. In most cases, results reflect those respondents who had a view and for whom the questions were applicable. ‘Don’t know’, ‘can’t recall’, and ‘not sure’ responses have only been presented where this aids in the interpretation of the results.

Overall percentage results for questions to the Facilitators’ and Play Helpers’ survey (answered by 139 respondents) have a degree of sampling error (i.e. confidence interval) at the 95% level of statistical confidence of +/- 7 percentage points (pp). That is, there is a 95% probability (abstracting from non-sampling error) that the percentage results will be within +/- 7pp of the results that would have been obtained if the entire population had responded. Higher degrees of sampling error apply to questions answered by fewer respondents.

Overall percentage results for questions to the parents’ and carers’ survey (answered by 410 respondents) have a degree of sampling error (i.e. confidence interval) at the 95% level of statistical confidence of +/- 4 percentage points (pp). That is, there is a 95% probability (abstracting from non-sampling error) that the percentage results will be within +/- 4pp of the results that would have been obtained if the entire population had responded. Also note that higher degrees of sampling error apply to questions answered by fewer respondents.

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Percentage results throughout the report may not sum to 100% due to rounding or due to the acceptance of multiple responses for some questions.

Overall frequency distributions of the final results for the Facilitators’ and Play Helpers’ survey and the parents’ and carers’ survey are presented in Appendix F and Appendix G respectively. Split frequency distributions of the final results for the Facilitators’ and Play Helpers’ survey and the parents’ and carers’ survey are presented in Appendix H and Appendix I respectively.

Coded responses to open ended questions in the Facilitators’ and Play Helpers’ and the parents’ and carers’ survey are provided in Appendix J and Appendix K respectively.

In this report, quantitative research refers to data collected via the two online surveys.

1.5 Profile of participants/respondents

A total of 43 participants took part in the in-depth interviews and mini focus groups components of this research. Key characteristics of participants are outlined below.

Table 1. Profile of participants by state

State Program stakeholders Parents and Carers Facilitators and Play

Helpers

NSW 2 12 -

VIC 4 12 2

QLD 1 - -

SA 1 - 1

WA 1 - 1

TAS 1 - 1

ACT 3 - -

NT 1 - -

TOTAL 14 24 5

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Table 2. Profile of participants by region

RegionProgram stakeholders Parents and Carers Facilitators and Play

Helpers

Metropolitan 14 16 2

Regional - 8 3

TOTAL 14 24 5

Key characteristics of survey respondents are presented below. More detailed information regarding the demographic profile of Facilitators and Play Helpers and Parents and Carers who participated in the online survey is located in Appendix L and Appendix M respectively.

Table 3. Profile of participants by state

State Parents and Carers Facilitators and Play Helpers

NSW 101 34

VIC 110 44

QLD 101 28

SA 51 12

WA 12 11

TAS 4 8

ACT 6 1

NT 2 -

Not specified 23 1

TOTAL 410 139

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Table 4. Profile of participants by Region

Region Parents and Carers Facilitators and Play Helpers

Metropolitan 251 68

Regional 136 69

Not specified 23 2

TOTAL 410 139

1.6 Quality assurance

The project was conducted in accordance with international quality standard ISO 20252.

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2. Literature review

2.1 Introduction

Over the past fifty years, there has been a substantial worldwide increase in the number of children and young people living with disabilities or other chronic medical conditions. Recent estimates suggest that 6.3% of US children between 5 and 15 years of age have one or more disabilities, and 1% (or nearly half a million) are unable to care for themselves (Erickson & Lee, 2008). In addition, while the overall number of Australian children decreased by 1.4% between 1998 and 2003, the proportion of children with a disability increased from 7.6% (296,400 children) in 1998 to 8.3% (317,900 children) in 2003. The proportion of Australian children with severe or profound core activity limitations also increased from 3.7% (144,300 children) in 1998 to 4.3% (165,300 children) in 2003. These increases have generally been attributed to health care advances that have allowed for the survival of children with conditions that were traditionally incompatible with life (Perrin, 2002).

Caregivers play a central role in the lives of children – especially children with a disability or chronic medical condition – and evidence suggests that the wellbeing of caregivers is inextricably linked to the wellbeing of the children for whom they care (see for example Schor, 2003; see also Section 2.2, below). Evidence also suggests that when parents of children with a disability experience poor health, they may be less able to care for their children, setting up a continuous cycle of negative outcomes for all family members (Lacavalier, Leone, & Wiltz, 2006; Bromley, Hare, Davison, & Emerson, 2004; see also Section 2.2, below).

Two recent social trends – both of which place greater emphasis on caregiver voice and involvement – have increased the consideration given to the health of parents and carers of children with disabilities in the literature. First, there has been a marked shift toward community-based rehabilitation (CBR) of children with disabilities. Second, the principles of family-centred care (FCC) have become increasingly embedded in the health policy of developed countries. FCC and CBR are discussed briefly, in turn, below.

Community-based rehabilitation

Historically, hospital-based or institutional care was the only option for most children with complex medical conditions, technology dependence, or significant behavioural or emotional needs. More recently, however, social policy has promoted community-based rehabilitation programs that provide care for children with disabilities (and their family and carers) in their homes and in the community.

The World Health Organisation (WHO), in collaboration with other United Nations organisations, has promoted CBR for well over three decades. CBR is the primary means by which people with disability

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(including children) in most countries of the world have any access to rehabilitation or disability services (Evans, Zinkin, Harpham, & Chaudry, 2001).

The most broadly used definition of CBR is as follows:

…a strategy within general community development for rehabilitation, equalization of opportunities, and social inclusion of all people with disabilities...implemented through the combined efforts of people with disabilities themselves, their families and communities, and the appropriate health, education, vocational, and social services (ILO, UNESCO, & WHO, 2004).

CBR was first promoted by the WHO in the mid-1970s to address the limited nature of the rehabilitation workforce in developing countries. As such, there is currently only a small amount of research examining the effectiveness of CBR in economically developed countries. Reviews and meta-analyses of outcome studies have, however, generally indicated that efforts to care for children with disabilities in their homes and communities, rather than in congregate care centres, have benefited many children and their families (see for example McPherson et al, 2004).

Nevertheless, a number of authors have noted that community-based care has brought new and unanticipated challenges for some children with disabilities, their families, communities, and health care systems (Murphy & Carbone, 2011). Most notably, it is generally acknowledged that CBR is most effective when parents of children with disabilities are given opportunities to promote their own health and well-being (see Section 2.3 and Section 2.4, below).

Family-centred care

FCC is a philosophical approach to service delivery for children with special health care needs and their families. FCC aims to support the health and psycho-social well-being of the child while simultaneously attending to the needs of surrounding family members, including siblings (Bellin et al., 2011). The literature reveals some variability in the terms used to describe this approach to service provision; however, there is a general consensus that the underlying principles and practice values anchoring FCC consist of the following: strength-based and culturally sensitive assessment and interventions, family-driven service choices, empowerment-focused services, and parent-provider collaboration.

FCC is widely acknowledged to be the ‘gold standard’ in care for children with special health care needs and their families (see Dunst et al., 2007 for meta-analysis and review), with research suggesting positive outcomes for both the child and family members. For example, studies of health care delivery indicate that FCC practices may enhance a child’s health and developmental outcomes (see for example Beatson, 2008). Most notably, FCC has been shown to be positively associated with psychological adaptation, behavioural functioning, and improved quality of life, even when condition severity is included as a covariate (see Bellin et al., 2011 for an overview of this research).

Interdisciplinary research has provided evidence supporting the view that FCC also benefits other family members. Specifically, FCC has been associated with enhanced parent psychosocial

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adjustment, decreased parenting stress, and successful adjustment to the child’s health condition. It should, however, be noted that the positive outcomes of FCC are dependent on the provision of targeted resources, support, and assistance which enables caregivers to participate actively in care (see for example Nethercott, 1993; see also Section 2.3 and Section 2.4, below).

2.2 Health and psychosocial functioning of parents and carers

While recent trends toward CBR and FCC have been associated with positive outcomes for children and other family members, they also, as outlined above, represent a marked increase in parental responsibility. Indeed, Murphy, Chrisitian, Caplin, and Young (2006) suggest that almost all current systems of care for children with a disability depend crucially on parents being willing and able to adopt unexpected ‘informal caregiving careers’ that typically span the course of a child’s life. Similarly, Murphy et al. (2011, p.98) propose: ‘Current systems of care for children with disabilities depend on parents being not only willing but also physically and emotionally able to meet the challenges of providing care for their children’ (see also Raina et al., 2004). As informal caregivers, parents and carers may be required to perform tasks that require extraordinary physical, emotional, social, and financial resources.

Evidence suggests that life-long informal caregiving for a child with a disability can be associated with poor emotional and physical health for caregivers. For example:

More than 70% of mothers of children with a disability report lower back pain (Tong et al., 2003).

When compared with other parents, parents of children with Cerebral Palsy report greater distress and higher rates of back problems, migraine headaches, stomach/intestinal ulcers, and chronic pain (Brehaut et al., 2004).

Parental caregivers of children who are technology dependent report more anxiety, anger, guilt, frustration, sorrow, social isolation, sleep deprivation, and depression compared with parents of able-bodied children (Wang & Barnard, 2004).

Behavioural problems in children with autism spectrum disorder are strongly associated with increased parental distress (Lecavalier, Leone, & Wiltz, 2006; Bromley, Hare, Davidsome, & Emerson, 2004).

Conversely, some studies have found that caregivers do not differ to non-caregivers in terms of physical health or psychological distress (see for example Seltzer, Greenberg, Floyd & Hong, 2004). This discrepancy in findings may be due to differences in age cut-offs, with some studies including the parents of children aged up to 25 years (see for example Seltzer, Greenberg, Floyd, & Hong, 2004). Another factor that may account for such discrepant results is the presence of child behaviour problems. Studies showing that behaviour problems make an independent contribution to the physical and psychological health of caregivers have provided evidence in support of this view (Lach et al., 2009).

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If a parent is unable to meet the challenges of providing care for a child with a disability because of poor physical or emotional health, their child may not achieve as high a level of functioning as she/he is capable. A recent study by Murphy and colleagues (2011) has provided evidence in support of this view. This study reported positive correlations between (a) parental physical health and the physical function of their child with Cerebral Palsy, and (b) parental mental health and the emotional function, psychosocial function, and total health-related quality of life of their child with Cerebral Palsy. It should, however, be noted that the direction of the relationship was not established in this study (i.e. parent to child or child to parent). Comparable results have also been reported by Brehaut et al (2004).

2.3 Parent-to-parent mentorship

Taken together, the evidence outlined above suggests that if community-based and family-centred care initiatives for children with disabilities are to be successful, they need to include interventions that support and sustain parents in their role as long-term caregivers.

Recent research examining potential interventions and strategies has tended to focus on the relationship between parents (or other family caregivers) and professionals, with a number of authors concluding that the success of these relationships is paramount both in terms of service quality and family outcomes (see for example Dunst & Dempsey, 2007; Summers et al., 2007). Indeed, several studies have indicated that parents view the establishment of a positive parent/professional alliance as the cornerstone of caring, and a key variable in their adaptation (Konrad, 2007). Qualities viewed as supportive to families within the parent/professional alliance include trust, respect, commitment, care, compassion, continuity and community, information sharing, recognition of the emotional impact on families, and collaboration and partnership (see Konrad, 2007 for an overview of this literature).

Less attention has been devoted to understanding the qualities and types of supportive relationships that parents in comparable situations can provide each other. Nevertheless, evaluations of parent-to-parent support programs have generally found that they serve as a positive and preferred information resource for families of children with disabilities and chronic illnesses (see Konrad, 2007 for an overview of this research). Parent-to-parent connection has also been shown to positively affect the physical and emotional wellbeing of both parents and children (see for example Turnball, Blue-Banning, Turbiville, & Park, 1999). Moreover, evidence suggests that peer-facilitated support groups offer a viable and acceptable outlet for parents to confide feelings and fears that otherwise would have remained silent (Foreman, Willis, & Goodenough, 2005). Positive outcomes have been observed when parents are in a paid position to provide support (e.g. Klein & McCabe, 2007), but peer-facilitated support most often occurs through volunteer or other informal arrangements.

Two large studies examined the effectiveness of parent-to-parent support across five US states in the late 1990s (Ainbinder et al., 1998; Singer et al., 1999). Singer and colleagues (1999) used quantitative and qualitative methods to examine the impact of parent-to-parent support programs on parents’

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perceptions of their coping efficacy, empowerment, progress in meeting important needs, and their attitudes and acceptance of their family and situation. The quantitative and qualitative results suggested that parents who participated in such programs made gains in acceptance of family and disability, progress in getting help with their stated needs, and gains in coping skills, especially when coping skills were at low levels pre-intervention.

Using qualitative methods on the same sample of parents, Ainbinder et al. (1998) concluded that availability of parent ‘mentors’ leads to a decrease in feelings of isolation in the parents of newly diagnosed children. This result has been replicated more recently in Kerr and McIntosh (2000).

Linking parents of children with disabilities or other medical conditions to other parents has also been shown to positively affect paediatric outcomes. Most notably, Chernoff and colleagues (2002) used a randomised control trial to demonstrate modest positive effects of a family support intervention – which included telephone contact, face-to-face visits, and group events with experienced mothers – in promoting the adjustment of children with selected chronic health conditions.

Parent-to-parent mentorship can take many forms, including: One-on-one mentorship, community-based parent networks, technology-enabled parent networks, and peer support groups. Each of these approaches – with a particular focus on support groups – is critically discussed below.

One-on-one mentorship

Konrad (2007) proposes that access to a confiding and nurturing relationship through a one-on-one connection can be a bridging experience for parents with a newly diagnosed child. These one-on-one relationships can be formed formally – for example, by way of professional introduction – or informally – for example, when waiting for a medical appointment. Evidence suggests that the potential for positive adaptation to a child’s disability or illness is increased when parents have a confidant who understands the private aspects of their experience (Jessop, Reissman, & Stein, 1988). Jessop et al. (1988) also found that having someone who can share tested resources increases the likelihood that parents will successfully manage the practical aspects of their child’s special needs.

Community-based parent networks

Community-based parent-to-parent networks (PTPN) offer another form of mentorship to parents and families. PTPN generally utilise the services of non-professional lay counsellors who act as in-home mentors to parents who have had experiences similar to their own. Outcome evaluations, both at a local and country-wide level, have found that the perceived ‘earned wisdom’ of veteran parents underpins positive mentoring alliances. Indeed, both constructive attitudinal changes as well as acceptance of the child’s disability or illness appear to be strengthened through the relational connectedness provided by PTPN resources (Santelli et al., 1996; Silver et al., 1997). These studies also suggest that factors critical to the success of PTPN programs include the following: early referral, timeliness of the initial contact, and fit between new and veteran parents.

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Technology-enabled parent networks

Technology-enabled formats such as internet chat rooms and computer-mediated support groups are increasingly being used as ‘virtual mentorship’. Konrad (2007) suggests that benefits associated with online support groups include 24-hour availability, access for those living in rural or remote locations, cost-effectiveness, and diminution of barriers resulting from socio-demographic factors (see also Bragadottir, 2006).

2.4 Peer support groups

Increasingly, parents of children with disabilities are choosing to participate in some form of support group, usually in addition to seeking continual, one-on-one assistance from health professionals (Solomon, Pistrang, & Barker, 2001). Peer support groups can be led by a professional or by the participants themselves. In some instances, professionals may assist in the formation of a group, and facilitate until a clear ‘lead participant’ emerges (Solomon, 2004). Groups led by participants include two distinct types: Social support groups that provide some form of service to individual participants, such as support and information; and social advocacy groups that are more oriented toward fund-raising, public or professional education, or legislative or lobbying activities (Law et al., 1991).

The literature consistently refers to three basic functions of support groups for parents of children with disabilities or other medical conditions: parent-to-parent support (resulting, for example, in reduced isolation and distress, and increased physical and psychological functioning), information giving, and advocacy for better services (see for example Law et al., 2001).

Literature examining the effectiveness of peer support groups for parents of children with disabilities and other medical conditions has been critically analysed in the following section. The majority of available literature focuses on the development, delivery, and outcomes associated with groups led by participants; however, efforts have been made to compare between models where possible. Related literature has also been included, where directly relevant.

Effectiveness of peer support groups: Parents and carers

Randomised control trials

Randomised control trials, also known as ‘true experiments’ or ‘intervention studies’, are considered to represent the gold standard in research design for demonstrating a cause-and-effect relationship between an intervention and an outcome (Salmond, 2008).

As with most non-clinical interventions, the number of randomised control trials examining the efficacy of peer support groups for parents of children with disabilities is limited. Indeed, despite extensive documentation of heightened mental and physical risk for caregivers, few theory-driven interventions to reduce this risk have been evaluated with methodologically strong designs. That being said, several relevant control trials have been conducted over the past two decades.

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Most recently, Day and colleagues (2012) evaluated the clinical effectiveness and acceptability of the Empowering Communities Program, a peer-led parenting intervention for parents of children with significant behavioural problems. This multi-list randomised control trial compared an intervention group with a wait-list control condition with a 1:1 allocation ratio. Significantly greater improvements in positive parenting practices were observed in the experimental condition; however, no differences were observed for parental stress levels. The researchers hypothesised that the study may have been underpowered to detect differences in parental stress levels. The observation that parental adjustment scores tend to produce relatively small effect sizes provides evidence in support of this view.

Randomised control trials have been performed to evaluate interventions that include support groups or group activities as one element of a larger program. For example, Chernoff et al (2002; see also Ireys et al., 2001) evaluated a support intervention – the Family-to-Family Network – for families of children with selected chronic illnesses using a randomised controlled clinical trial design with repeated measures one year apart.

The Family-to-Family network was designed to enhance mothers’ mental health by linking mothers of school-aged children with selected chronic illnesses with mothers of older children with the same condition. The program included telephone contact, face-to-face visits, and, most importantly, three group events that allowed program parents to meet collectively in a non-stressful venue. Maternal anxiety scores for participants in the experimental group decreased during the intervention period for all diagnostic groups while scores for the control groups increased. The researchers concluded: ‘Our results demonstrate the effectiveness of family support intervention in reducing symptoms of anxiety in mothers of children with selected chronic health conditions’ (Ireys et al., 2001., p. 776). It should, however, be noted that the researchers did not measure the differential effects of program elements, and therefore it is not possible to determine the extent to which the group events contributed to the decrease in maternal stress.

Ireys, Sills, Kolonder, and Walsh (1996) – who used a randomised control trial to evaluate the A-PLUS program for parents of children with Rheumatoid Arthritis – obtained comparable results to Chernoff et al (2001). This program also included telephone contact, face-to-face visits, and group events. The results indicated that the total number of reported mental health symptoms decreased in the experimental group and remained the same in the control group. The experimental group also showed greater improvement on all indices of support relative to the control group; however, differences between the groups were statistically significant for very few outcomes measures. The researchers concluded that the results provide only ‘tentative’ evidence for the positive effects of mentoring interventions for parents of children with Rheumatoid Arthritis.

Program evaluations (excluding randomised control trials)

The positive effects of parent- and professional-led support groups for parents of children with disabilities and other medical conditions have been demonstrated through a limited number of

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program evaluations that have not been based on randomised control trials, both in Australia and in other jurisdictions.

Most notably, the Signposts for Building Better Behaviour program – which was implemented across the State of Victoria via Commonwealth and State Government funding – was recently evaluated for both efficiency (Hudson et al., 2003) and effectiveness (Hudson, Cameron, & Matthews, 2008). The Signposts program was developed by Hudson et al. (2001), and is based on a number of parent and practitioner materials aimed at assisting parents of children with an intellectual disability to deal with difficult behaviour. The program can be delivered via the following modes: group, telephone, and face-to-face.

The Signposts evaluation reported positive outcomes for all modes of delivery, with evidence suggesting that participants were less depressed, less anxious, and less stressed post-program compared to pre-program. Participants also indicated that they were more confident and satisfied with managing their child, and were less hassled by their child’s behaviour. Importantly, the program drop-out rate was much lower for group delivery mode when compared to the other modes of delivery; most notably the drop-out rate was 58% for the ‘self-directed delivery’ mode compared to just 20% for the group delivery mode.

Other studies

There are a significant number of qualitative and quantitative studies that have considered the potential benefits of support groups for parents of children with disabilities and other medical conditions.

Allen et al. (1992 cited in Lo, 2008) reviewed over 20 family support groups to determine the effectiveness of these groups on supporting parents of children with disabilities. The researchers concluded that support groups can have many positive benefits, such as allowing parents to gain knowledge and skills in coping with their child’s special needs, improving parental attitudes and skills at parenting, increasing use of communication resources, and developing positive relationships between homes and schools.

Comparable results were more recently reported in a qualitative study performed by Solomon, Pistrang, and Baker (2001). Based on the results of focus groups with 43 parents, the researchers concluded that:

Study participants generally found that the groups were helpful, and that they were satisfied with the level of support that they received.

On the whole, study participants felt that participation in the groups allowed them to gain knowledge and skills in coping with their child’s special needs, to improve their parenting skills, and to increase use of communication resources.

Maton et al. (1988) concluded that two variables are associated with participants’ well-being and perceived benefits of support groups: social support (giving and receiving support, and the

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development of friendships) and organisational characteristics of the group (role of differentiation, order and organisation, and leader capability). Specifically, positive participant outcomes were associated with a high level of social support and a productive organisational structure. It is therefore not surprising that participant-facilitated groups – which aim to establish a safe, comfortable environment of unspoken understanding that increases the likelihood of candid, mutual exchange – have been shown to be particularly beneficial to the parents of children with disabilities and other medical conditions (see for example Singer et al, 1999). This point is aptly summed up by Konrad 2007, p. 119): ‘They [other parents] offer credible and informed emotional support because unlike most of the professionals parents encounter, they can be confident that seasoned parents have walked in their shoes’.

Research also suggests that both the parents who receive support and those who give support may experience positive effects through interactions with each other, including group interactions. Specifically, evidence suggests that effective coping is promoted, and both new and experienced families feel less isolated and sad (Hartman, Radin, & McConnell, 1992). This is referred to as ‘coming full circle’ for parents who are providing support – in that they are no longer simply recipients but are also now benefiting by being the helper (Kerr & McIntosh, 2000).

2.5 Conclusions

The effectiveness of peer support groups has been directly examined in only a limited number of methodologically robust, comprehensive studies. Nevertheless, the available evidence consistently suggests that participation in peer support groups by parents of children with disabilities and other medical conditions is associated with the following positive outcomes:

acquisition of relevant knowledge and skills by parents receiving support;

improved physical and psychological health in parents receiving support; and

increased coping and decreased isolation in parents giving and receiving support.

These positive outcomes of peer support groups appear to be driven both by the level of social support provided in the group, and the quality of the organisational structure.

More broadly, the parental and paediatric benefits of parent-to-parent support – which includes peer support groups – have been demonstrated in numerous studies, including a number of large program evaluations and clinical trials. Overall, these studies suggest that parent-to-parent connection can positively affect the physical and emotional wellbeing of both parents and children.

Given that the MyTime Peer Support groups are facilitated by professionals, it is worth also noting that the importance of the parent/professional alliance has been repeatedly demonstrated in a wide variety of studies. Qualities viewed as supportive to families within the parent/professional alliance include trust, respect, commitment, care, compassion, continuity and community, information sharing, recognition of the emotional impact on families, and collaboration and partnership.

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3. Administrative data review

3.1 Introduction

This Chapter presents the key findings of a review of MyTime program performance information provided to FaHCSIA by the PRC as part of regular program performance reporting. The review examined the following reports:

Status Report, July to December 2010;

Status Report, January to June 2011;

Six Month Progress Report, 1 July to 31 December 2011; and

Twelve Month Progress Report, 1 July 2011 to 30 June 2012.

3.2 Number of MyTime support groups operating

FaHCSIA’s funding agreement with the PRC for the delivery of the MyTime program from 2010–11 to 2012–13 stipulated a target of 262 groups to be operational throughout this funding period, with the distribution of groups across States/ Territories to be in line with the overall population of people with a disability. Tables 5-8 below show the targeted number of groups for each State/Territory and the number operating as at each six-monthly reporting date.

Table 5. Number of MyTime Groups operating: Target vs. Actual 31 December 2010

State/ Territory Target

Achieved % target achieved

ACT 3 3 100%NSW 77 75 97%NT 5 5 100%QLD 48 46 96%SA 28 28 100%TAS 9 9 100%VIC 64 64 100%WA 28 27 96%Total 262 257 98%

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Table 6. Number of MyTime Groups operating: Target vs. Actual 30 June 2011




Table 7. Number of MyTime Groups operating: Target vs. Actual 31 December 2011




Table 8. Number of MyTime Groups operating: Target vs. Actual 30 June 2012




Tables 5-8 above indicate a generally high level of achievement in terms of performance against the operational targets. On average across the four reporting periods covered, 95% of the total number of targeted groups was achieved. These tables also highlight relative underperformance in relation to

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targets for Western Australia (average achievement level of 88% across the four reporting periods) and the Northern Territory (average achievement level of 80%).

3.3 Number of registered MyTime participants

Table 9 below shows the total number of registered MyTime participants in each financial year covered by the current funding agreement who attended at least one MyTime group session. The funding agreement specified a target of ‘around 3,000 participants’. As is evident from Table 9, this target was achieved in each financial year. In its performance reports to FaHCSIA, the PRC indicated that actual participation numbers were higher than those presented in Table 9 due to the participation in MyTime groups of parents and carers who were not registered. It was not possible to establish the level of this additional participation.

Table 9. Number of registered MyTime participants

State/ Territory 2010–11 2011–12

ACT 31 46NSW 839 887NT 14 12QLD 620 662SA 286 282TAS 68 62VIC 1202 855WA 263 97Not specified - 128Total 3323 3031

CALD and Indigenous program participants

Table 10 overleaf shows the percentage of registered MyTime participants who attended at least one MyTime group session in each half financial year covered by the current funding agreement who identified themselves as being from a CALD background or as an Indigenous Australian.

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Table 10. Percentage of registered MyTime Participants from CALD or Indigenous background

Period CALD IndigenousJul-Dec 2010 15.0% 4.9%Jan-Jun 2011 10.8% 3.6%Jul-Dec 2011 8.7% 2.6%Jan-Jun 2012 9.2% 2.7%Average 10.9% 3.4%

Notes1. CALD: Participant identified a language other than English

as their primary language2. Indigenous: Participant identified as being Aboriginal

or Torres Strait Islander

The average participation share over 2010–12 for Indigenous Australians (3.4%) was greater than the proportion of Indigenous Australians aged 20-64 in the overall Australian population (2.8%) (Source: Australian Bureau of Statistics, Cat. No. 3101, September 2012 – estimate as at 30 June 2011). This indicates that the program has been effective in reaching Indigenous parents and carers.

The average participation share over 2010–12 for Australians from a CALD background (10.9%) was greater than the comparable population proportion: the percentage of Australians who are from a non-Indigenous background and who self-assess as not speaking English very well (8.2%) (Source: Australian Bureau of Statistics, 2011 Census of Population and Housing, Custom Table). This indicates that the program has been effective in reaching parents and carers from a CALD background.

3.4 Average participation levels

Table 11 below shows average participation levels per MyTime group reported by PRC to FaHCSIA for the 2010–11 financial year (PRC Status Report, January to June 2011). Average participation data was not reported by PRC in its performance reports for the 2011–12 financial year. Table 11 indicates that, on average across the 2010–11 financial year, 40% of registered members were in attendance at each group session. The reasons for the low average attendance rate are discussed in Chapter 6.

Table 11. Average number of registered MyTime participants per MyTime Peer Support Groups

Period Members AttendanceJul-Sep 2010 8 4Oct-Dec 2010 9 5Jan-Mar 2011 11 3Apr-Jun 2011 12 3Year Average 10 4

Based on the data presented in Tables 5-11 above, it is estimated that in 2011–12, the average number of registered members per MyTime group was 12.

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3.5 Costs

Table 12 below presents the total funding (exclusive of GST) provided by FaHCSIA to PRC to deliver the MyTime program in the first 2 years of the current funding agreement. It also presents estimates of average costs:

per group (based on data presented in Tables 5-8);

per hour of face-to-face service delivery (based on the assumption that operating groups delivered an average of 64 hours of face-to-face service per annum, in line with their undertakings);

per registered participant (based on data presented in Table 5); and

per hour of participation by parents/ carers in face-to-face group support activity (based on data presented in Table 11).

It should be noted that the cost estimates presented in Table 12 do not include any allowance for costs incurred by FaHCSIA in program delivery (primarily staff costs associated with program management) other than the funding provided to the PRC.

Table 12. Costs of MyTime Peer Support Groups (exclusive of GST)

($) 2010–11 2011–12Total cost 3,468,00

0 3,520,000

Cost per group 13,928 14,080Cost per hour of service 218 220Cost per participant 1,044 1,161Cost per participation hour 41 45

The average cost data presented in Table 12 indicates that the MyTime groups were cost effective, notwithstanding the low average attendance rate in groups. In particular, the average cost per hour of participation by parents/ carers in face-to-face group support activity was broadly in line with the cost benchmark used for the evaluation (Australian Psychological Society 2012–13 recommended fees per client for group counselling by a registered psychologist of $41.50 per hour (exclusive of GST) for a group of 5 or more clients of 2 hours duration). Comparisons against this cost benchmark should be made with caution due to differences in the nature of the service delivered (e.g. MyTime groups provide Play Helpers to engage and play with participants’ children whereas this is not part of the standard psychological service) and the fact that the estimates of the average cost per participation hour for MyTime include the cost of cancellations/ non-attendance (which would be charged an additional amount by a registered psychologist above the session fee set out above).

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4. Overall impressions of program

4.1 Chapter summary

Overall, the impressions and reported experiences of the program of parents/carers, program stakeholders (Coalition Coordinators, the PRC and FaHCSIA) and Facilitators/Play Helpers were very positive. The findings from both the qualitative and quantitative research from all three groups indicated that the MyTime Peer Support Program is delivering key benefits to parents and carers of children with disabilities. These benefits include providing parents/carers with a peer support network and giving them more information about how to care for their children. Consistent with its objectives, the program is also being successfully implemented in regional areas and for all sectors of the community.

For parents and carers, a key success factor for the peer support groups was the quality of the Facilitator and the Play Helpers. When the Facilitator was seen by parents as being empathic and skilled in facilitating discussions, parents reported productive group discussions and positive outcomes. In contrast, when Facilitators were seen to be too controlling, or were unable to manage the groups effectively, parents found the groups to be unproductive. Also, if Play Helpers did not effectively manage the children, this disrupted parent group sessions. Coalition Coordinators identified that lack of funding could pose a challenge to the success of the groups (as well as recruiting and keeping Facilitators), and Facilitators themselves reported that recruiting parents to participate was a key challenge.

4.2 Overall impressions and experiences

Program stakeholders

Qualitative research findings

When asked about their impressions and experiences of the program, Coalition Coordinators tended to initially focus on positive participant outcomes, with most stating that, in their view, the program had been consistently beneficial for parents/carers and, to a lesser extent, children (including siblings of children with a disability or chronic medical condition). Specific benefits that were mentioned without prompting included increased knowledge, reduced social isolation and distress, and increased psychological functioning. Coalition Coordinators also tended to agree that the program was providing a unique and necessary service to a group of community members sometimes overlooked by government programs.

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It’s a great program for families, particularly new families. It’s invaluable, learning from other people, sharing their stories, feeling like they’re not alone. I’ve found it to be quite valuable for them. It’s also an opportunity for families to learn about the service system, which is quite complex.

Coalition Coordinator

A minority of Coalition Coordinators made unprompted mention of program implementation challenges, especially unnecessary administrative burden, when outlining their impressions and experiences. It should, however, be noted that these Coordinators were quick to reiterate the program benefits after discussion of these challenges, with most directly stating that the program outcomes made the required effort worthwhile.

It’s an amazing program, though it’s time consuming and there’s lots of admin… The target market is in need of services.


Facilitators and Play Helpers

Quantitative research findings

Facilitators and Play Helpers were asked to rate their overall experience of the MyTime Peer Support Program on the following scale: Very positive, Somewhat positive, Neither positive nor negative, Somewhat negative, and Very negative. The results for (a) Facilitators, (b) Play Helpers, and (c) all respondents are shown in Figure 1, below. Please note that here and elsewhere in the report, overall results include data from respondents who indicated that they were both Facilitators and Play Helpers (n=5).

Both respondent groups overwhelmingly reported a positive program experience, with 87% of Facilitators and 82% of Play Helpers indicating that their overall experience was ‘Very positive’. None of the Facilitators and only one Play Helper reported a negative overall experience of the program.

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Figure 1: Overall experience (Facilitators and Play Helpers)

87

82

85

10

15

12

3

3

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Facilitator (n=99)

Play Helper (n=33)

Overall (n=137)

Very positive Somewhat positive Neither positive nor negative

Somewhat negative Very negative

Base: n=99 (Facilitator); n=33 (Play Helper); n=137 (Overall)Q. Thinking about your experience as a [facilitator/play helper] with the MyTime Peer Support Program, how would you rate your overall experience?

Program participants


Consistent with the results for Facilitators and Play Helpers, parents and carers overwhelmingly reported having a positive program experience: 73% of respondents indicated that their experience was ‘Very positive’ and 21% indicated that their experience was ‘Positive’ (see Figure 2, below). Please note that here and elsewhere in the report, overall results include data from respondents who failed to provide their location (i.e. postcodes) in the online questionnaire (n=11).

Program experience did not differ depending on location: more than nine out of ten respondents in both metropolitan (94%) and non-metropolitan locations (93%) indicated that their overall experience of the MyTime Peer Support Program was either ‘Very positive’ or ‘Positive’.

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Figure 2: Overall experience (Parents and Carers)

75

72

73

19

22

21

4

3

4

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Metro (n=247)

Non-metro (n=134)

Overall (n=392)

Very positive Somewhat positive Neither positive nor negative

Somewhat negative Very negative

Base: n=247 (Metro); n=134 (Non-metro); n=392 (Overall)Q. Thinking about your experience as a parent or carer participating in the MyTime Peer Support Program, how would you rate your overall experience?

As part of the online questionnaire, parents and carers were also asked to list which aspects of the program they found most useful, and which they found least useful. The coded responses to these questions are shown in Figure 3 (Most useful), below, and Figure 4 (Least useful), overleaf.

More than 8 out of 10 program participants (84%) felt that the establishment of a support network (including peer-to-peer information sharing) was the most useful aspect of the MyTime Peer Support Program.

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Figure 3: Most useful aspects of the program (Parents and Carers)

84%

16%

10%

6%

6%

1%

1%

1%

0% 10% 20% 30% 40% 50% 60% 70% 80% 90%100%

Support network and sharing of information

Respite and relaxation

Benefits to children with/without disability

Aspects related to Facilitator and or Play Helper

Guest speakers

Other Positive

Negative Comments

None/ Nil/ NA

Base: n=410Q. What aspects of the MyTime Peer Support Program have been MOST useful to you and your family?

Forty per cent of respondents reported either that all program elements had been useful, or that they had no issues. In addition, reported issues tended to be related to group specific issues such as group dynamics, the number of sessions, or the frequency/location/timing of the groups, rather than to aspects such as the effectiveness of the service model or the competence of the Play Helpers/ Facilitators.

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Figure 4: Least useful aspects of the program (Parents and Carers)

12%

10%

8%

4%

4%

3%

4%

40%

0% 10% 20% 30% 40% 50%

Group dynamics, numbers, and disabilitiesrepresented

Organisation of groups e.g., frequency, location etc…

Relevancy of information provided by group

Facilitators and Play Helpers e.g., conduct, inexperience etc…

Program structure, governance and auspicing ofprogram

Lack of child-care/ lack of resources for children

Other

No negative comments/ all useful

Base: n=410Q. What aspects of the MyTime Peer Support Program have been LEAST useful to you and your family?


In line with the quantitative research findings, the vast majority of focus group and in-depth interview participants reported having an extremely positive overall experience of the program, with several stating, unprompted, that MyTime Peer Support sessions were the ‘highlight of their week’. While specific sources of satisfaction varied across participants, most felt that the presence of a skilled, empathic Facilitator was crucial to group, and consequently program, success. Other elements considered to be important to a positive program experience included the presence of Play Helpers – which allowed parents to both relax and concentrate – and productive group dynamics.

Fantastic, the Facilitator is so perfectly right for that group, there’s no judgement, no rules, everyone’s equal.

Regional Parent/Carer

It should be noted that when negative experiences were reported by parents/carers, they tended to be related to group-specific issues, rather than to the program as a whole. For example, one participant felt that that the Facilitator of her MyTime Peer Support Group was too dictatorial in approach, while another participant felt that the Play Helper was not capable of controlling the children, and that this led to an unnecessarily disruptive environment.

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I’m totally dissatisfied. The lady told us that during MyTime, we’re not allowed to talk and interrupt the guest speaker, we need to keep our questions till later, but then she’ll come in and interrupt the group to tell us about her son.


Parents and carers were also asked to outline which aspects of the program had been most useful to them and their families, and why. Consistent with the quantitative research findings, around a half of the qualitative research participants reported that peer support was the most useful aspect of the program.

Someone to talk to. I have friends that really want to understand and are sympathetic, but they can’t relate. The MyTime group was my saviour.

Metro Parent/Carer

Other popular responses included provision of information – especially information related to government programs and funding – and respite, or ‘time out’ from the physical and emotional challenges of caring for a child with a disability.

I got a $4800 carer adjustment payment though Centrelink. I didn’t know that it existed until the Facilitator mentioned it. One lady in our group got the full $10,000.

Metro Parent/Carer

4.3 Program awareness and drivers for involvement


Qualitative research finding

Most Coalition Coordinators reported that they became aware of the MyTime Peer Support Program when they first applied for their position, or when they commenced in their current role. A minority of Coordinators were familiar with the program prior to job application/ commencement – these Coordinators relayed that they were attracted to the role specifically because they wanted to work on the MyTime Peer Support Program.

I was personally interested in the MyTime program. The previous Coordinator was very passionate about it. I’d seen flyers about MyTime, I wanted to know more about it.


When asked about their reason for becoming involved in the program, the majority reported that the coordinator role had simply been amalgamated into their current position, and therefore they did not make a conscious decision to become involved. Coordinators who had chosen to apply for the role mostly indicated that their involvement was motivated by an interest in the program, or more generally in the early childhood or disability sectors.

I saw an ad for the Coordinator position. I was attracted to the position because it had a community development and early childhood component.


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Coalition Coordinators generally reported that marketing and promotion of the program took place through distribution of MyTime materials such as brochures to early intervention service providers, other health professionals and special education schools, and to a lesser extent, direct promotion of the program to these professionals as part of networking activities. Some reported placing advertisements in the local paper.

Many Coalition Coordinators felt that there was scope to improve the marketing of the MyTime program. Some commented that they felt their ability to more effectively market the program was constrained due to their lack of marketing expertise, the generic nature of PRC-developed promotional materials (including the lack of resources targeting CALD communities) and costs associated with advertising.



There was no dominant program referral source reported by the research participants, with parents and carers variously indicating that they had first become aware of the MyTime Peer Support Program through community organisations, healthcare professionals or service providers, pamphlets or brochures, or family members/friends. A minority of program participants mentioned, unprompted, that promotion of the program could be improved, as, in their view, program awareness amongst the target audience was relatively low.

It would be lovely for more people to know about it… The popularity isn’t massive for what it offers.


When asked about their reasons for becoming involved in the program, most parents and carers reported that their participation was jointly motivated by the prospect of having ‘time out’ from caring for their child, and spending time with, and being supported by, parents in a similar situation to their own. A minority of parents and carers stated that they were motivated by the possibility of obtaining relevant information – especially information related to government funding and programs – from the Facilitator and other parents.

Just because I wasn’t coping with some of the things with Megan… But I didn’t want to bombard friends with those sorts of things; I didn’t want them to not be my friends because of what I was going through.

Metro Parent/Carer

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4.4 Understanding



Level of understanding amongst parents and carers was assessed by asking research participants to describe the MyTime Peer Support Program. Participant descriptions were closely aligned with the program objectives, with most labelling the program as an information and support network for parents and carers of children with a disability or serious medical condition. Indeed, specific mention of both information provision and peer support was included in the majority of descriptions.

There are probably three things: the facilitator, the peer support, and the information.Regional Parent/Carer

It should, however, be noted that a number of participants failed to mention information provision, focussing instead on respite, relaxation, and peer support. This suggests variance in program delivery, with some programs including a focus on knowledge sharing, especially via the Facilitator and guest speakers, and others not including this focus. As outlined in Chapter 5, feedback from Coalition Coordinators and other stakeholders provides further evidence in support of this view.

It’s like a support group for mums and a safe playgroup for Dylan that’s stress free; I don’t have to freak out if he does something inappropriate.


4.5 Expectations



In the focus groups and in-depth interviews, the majority of parents and carers reported that they expected both support and information from the MyTime Peer Support Program. A minority of parents and carers reported that they had no expectations, and a few indicated that they were excited about the prospect of interacting with parents in a similar situation to their own.

I was excited… I never used to interact with anyone. I didn’t speak to anyone for the first six months [after diagnosis] and was really eager to talk to people.

Metro Parent/Carer

A small number of parents and carers reported that, prior to group attendance, they were concerned that the group discussions would be depressing and/or upsetting. Parents and carers who expressed these concerns all indicated that they were unfounded, and that the groups had, in reality, been uplifting.

I thought it was going to be depressing initially, but I’ve never looked back.

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Metro Parent/Carer

The vast majority of parents and carers reported that the program had exceeded their expectations and that group attendance had become a priority for them. These parents and carers, not surprisingly, had no substantial suggestions for how the program could be improved to better meet their expectations.

It’s exceeded everything because it’s helped me so much mentally; the friendship and feeling normal. The kids love it too.


I go in [to work] late or take leave – that’s how important it is to me.Metro Parent/Carer

Parents and carers who indicated that the program had not met all of their expectations requested more expert speakers and the inclusion of sessions during the school holidays. One participant, who had attended multiple groups, also felt that that there was too much variance in the way the groups were run, and that a more systematic approach was preferable.

It seems to me, that middle body that applies for the funding and then hires the Facilitator, maybe they have too much say in how the program gets run.


4.6 Achievements



The key achievements mentioned by Coalition Coordinators can be grouped into three broad categories: Provision of peer support to parents/carers, establishment of targeted groups, and increasing program participation by fathers (and working mothers). Each of these categories is briefly discussed, in turn, below.

Provision of peer support to parents/carers

Most Coalition Coordinators felt that the provision of peer support was the key achievement of the MyTime Peer Support Program, with most noting that the peer support had led to a reduction in isolation, an increase in social and community involvement, and improved psychological functioning among program participants.

‘Lifeline’ and ‘It saved my life’ are regularly used by participants to describe the program.Coalition Coordinator

Establishment of targeted groups

All stakeholder groups reported difficulties in the establishment of specialist groups – including groups in remote locations, and groups targeted at Indigenous and Culturally and Linguistically

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Diverse (CALD) Australians. It is, therefore, not surprising that a number of Coalition Coordinators felt that the successful implementation – including consistently positive feedback from participants – of such groups was a key achievement of the program. Specific mention was made of an Indigenous group and a Horn of Africa Down Syndrome group in Victoria.

Increasing participation by fathers (and working mothers)

Two Coalition Coordinators were pleased that the flexibility of the program model had, over time, allowed them to develop groups – and continued support via alternative methods – for parents/carers who could not attend groups during the day. Indeed, both of these Coordinators felt the provision of support to parents who may not care for the child/children with a disability full-time should be considered a key achievement of the program. Therefore, while evidence suggests variance in program delivery can lead to differential outcomes (see Chapter 6, below), this variance has also allowed for the program to be flexibly implemented so that the needs of part-time parents/carers can be addressed.

A lot of groups traditionally meet during the day. It’s mainly mothers. We were getting feedback that more dads would like to come, so we’re now offering more evening and weekend activities. Working women also lose the capacity to connect with other people when they go back to work. The flexible model has helped them to stay in touch.


4.7 Challenges



Coalition Coordinators were far more likely than other stakeholder groups to mention program challenges, suggesting that there can be significant difficulties associated with the establishment and maintenance of groups. Specific challenges cited by Coordinators are briefly discussed, below.

Funding issues

The majority of Coalition Coordinators felt that there were problems with the program funding model, with several stating that the number of hours (16) funded per term was insufficient to cover costs associated with preparation and follow-up.

We’re funded to provide 16 hours of sessions per term. This includes contact time and group work, bur doesn’t take into account preparation and follow-up.


Coordinators responsible for the establishment and maintenance of specialist groups (such as groups catering for Indigenous participants and participants from a CALD background) – including groups in regional/remote locations – were especially critical of the funding model.These Coordinators felt that specialist groups should receive funding to cover additional costs such as travel and translation of

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program materials. Feedback on the program funding model – including suggestions for improvement – is discussed in detail in Chapter 5, Program Implementation.

CALD groups are difficult. We don’t have translated material, there’s not funding.Coalition Coordinator

There are lots of challenges associated with establishing and managing groups for Indigenous families… To go to Alice Springs from Darwin [in order to select a venue] costs around $2000 when you add up flights, accommodation, and meals.


Several Coalition Coordinators reported that they provided specialist groups for Indigenous and CALD program participants, and that these groups were generally effective in meeting the needs of participants from these communities. This was particularly apparent with participants from CALD backgrounds whose English language skills were limited, as an inability to provide an interpreter often meant that these participants attended the group once but did not come back.

Management and retention of staff

Several Coalition Coordinators reported that efforts to recruit, retain, and manage Facilitators and Play Helpers could be costly, time-consuming, and sometimes ultimately unsuccessful. There was general agreement that high financial and time costs could be attributed to general difficulties associated with (often remotely) managing a highly casualised workforce. A few Coordinators felt that the continued resignation of Facilitators could be especially problematic.

Mostly they [Facilitators and Play Helpers] resign because it’s too hard, or because they have childcare or personal issues.


Participant issues

A minority of Coalition Coordinators made mention of challenges related to program participants, with some stating that they found the recruitment and retention of participants to be a continual problem, and others stating that they have, on numerous occasions, experienced difficulty dealing with unsatisfied participants or unproductive group dynamics (e.g. ‘dominating’ group members). It should be noted that all Coordinators who cited unproductive group dynamics as a challenge were quick to point out that that these dynamics could be attributed solely to the personalities of participants, rather than to the program.

Getting people to groups is one of our key challenges. Most people would attend if they had time, and knew about the groups. Advertising of the program is lacking.


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Facilitators/Play Helpers


Facilitators and Play Helpers were asked, in a completely open-ended fashion, to list what have been the main challenges of the program to date. The coded responses to this question are shown in Figure 5, below. Almost a third of respondents (32%) indicated that one of their main challenges has been the establishment/maintenance of groups, suggesting that this may be more of an issue for Facilitators/Play Helpers than it is for Coalition Coordinators.

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Figure 5: Main challenges to date (Facilitators and Play Helpers)

32%

22%

14%

14%

12%

10%

7%

5%

5%

0% 5% 10% 15% 20% 25% 30% 35% 40%

Establishment and maintenance of groups e.g., lownumbers, poor attendence

Managing group dynamics/ responding to variety ofparents needs

Staffing issues: recruiting more staff, improving skills/knowledge of staff

Appropriateness of venue, accessibility of grouplocation, and timing of group

Providing adequate resources e.g., guest speakers,discussion topics, toys for children

Providing care for children with varied diagnoses

Administration, reporting, governance & auspicing ofservices

Not aware of any challenges

Other

Base: n=100 (Facilitator); n=34 (Play Helper); n=139 (Overall)Q. What have been the main challenges you have encountered in delivering the MyTime Peer Support Program?

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5. Program implementation

5.1 Chapter summary

Implementation of the MyTime Peer support program was generally considered to be successful by each of the stakeholder groups, although some groups were more positive than others. Stakeholders from FaHCSIA and the PRC had overwhelmingly positive perceptions around how the program was operating and the extent to which it was meeting its objectives. Parents and carers were also highly satisfied (90%) with how the groups had been run, and many cited the Facilitators and Play Helpers as key factors in the effectiveness of the program’s implementation. The majority of Facilitators and Play Helpers themselves (64% and 76%, respectively) also agreed that the program had been either highly or extremely effective.

In contrast, there were mixed perceptions among Coalition Coordinators about the effectiveness of the program’s implementation. This appeared to reflect differences in processes used to manage the operation of peer support groups. For example, Coalition Coordinators that recruited staff through one large subcontracted agency were more effective at recruiting staff than those that recruited staff directly. In metropolitan and regional areas, Coalition Coordinators were positive about the location and accessibility of groups, but those in remote areas found this more of an issue for their groups. There was also substantial variety in how parents and carers were referred or introduced to the support groups.

There were, however, two issues that most Coalition Coordinators agreed upon: that the reporting requirements, while effective, could be made more efficient; and that the funding for the program was insufficient.

5.2 Effectiveness of program implementation



When asked about the effectiveness of program implementation, Coalition Coordinators, not surprisingly, tended to focus on the processes associated with the establishment and maintenance of peer support groups. On this topic, there was a general consensus that over time it had become easier to establish and maintain groups as the program procedures/policies had been improved and finessed. It was suggested that as more information becomes available on the PRC’s website, the process of establishing and maintaining groups would become easier still.

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Each of the following implementation issues was cited by a minority of Coalition Coordinators: lack of guidance for the recruitment and retention of staff, confusion regarding the role and function of the PRC and FaHCSIA, a fixed cost funding model which did not reflect higher costs associated with developing and delivering groups outside metropolitan areas as well as specialist groups such as those for Indigenous and CALD participants, and lack of policies/procedures/materials to support the development and maintenance of groups targeted at Indigenous and Culturally and Linguistically Diverse Australians.

I’m not clear about which guidelines come from FaHCSIA and which come from the PRC, it’s all very confusing.


Perceptions of program implementation amongst stakeholders from FaHCSIA and the PRC were overwhelmingly positive, with both groups agreeing that the program was running smoothly and meeting its objectives.

Coalition Coordinators were also asked to specifically comment on the following program implementation elements: role and function of the service, governance/auspicing of service, funding arrangements, reporting arrangements, recruitment and training of Facilitators and Play Helpers, referral and intake processes (including managing demand), and the location and accessibility of the service. Research findings relating to each of these elements are outlined in turn, below.

Role and function of service

All Coalition Coordinators clearly understood the role and function of the service, with most making direct reference to the program objectives. A few Coordinators, however, noted that there was some inconsistency in role and function between groups. Some groups favoured an interventionist/therapeutic model, in which the emphasis was on providing information and support to parents and carers. Other groups favoured a playgroup/respite model, in which the emphasis was on fostering a positive relationship between the parent/carer and child by providing respite, the opportunity to engage in bonding exercises, or by normalising parents’ experience. Regardless of which approach was adopted, the provision of Play Helpers was viewed as crucial to the success of groups.

The title “MyTime” implies it’s about time for parents, but how do you get time if your kids are there?


Governance/auspicing of service

Around half of Coalition Coordinators described the governance and auspicing of service as working well – these Coordinators were in general agreement that the PRC was performing a solid job considering the limited resources available.

The paperwork is very simple, it’s just quarterly reports, attendance sheets and registering clients.

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The other half of Coalition Coordinators expressed some concern about the role of the PRC in service delivery, with several stating that the numerous organisations involved in delivery made some processes overly bureaucratic. This bureaucracy was seen by some to partially inhibit the PRC’s ability to engage in effective and timely communication with Coalition Coordinators. For example, a few Coalition Coordinators noted that they had not received timely responses from PRC, in one case waiting up to 3 years for an answer relating to a funding regulation issue.

A lot of time has been wasted by the PRC trying to get a database started from scratch. And you still can’t extract data due to ‘IT issues’. That’s not good enough, the PRC are not accountable enough.


A number of the more critical Coalition Coordinators were also of the view that the PRC’s strength was in research and evaluation, rather than program implementation. A few Coalition Coordinators directly stated that, in their view, the PRC placed too much emphasis on research, which had the unintended consequence of creating unnecessary ‘paperwork’ for parents and carers. It was, however, noted that the change from 3 to 6 monthly reporting had somewhat reduced the burden of paperwork for parents and carers.

I do not see the distribution of funding from the PRC to groups as fair and reasonable. I don’t get what’s in it for the PRC. They are not doing any research on the program, only the mental health of parents. I would expect the auspicing agency to have an understanding of delivering groups which the PRC doesn’t have.


The Coalition Coordinator model of administration was described by stakeholders from FaHCSIA and the PRC as effective. The ‘multiple layers’ were seen to allow program participants to benefit from local expertise, as each Coalition Coordinator had a greater appreciation for the needs of the parents and carers in their community. It was reported that removing this layer of administration would increase the remaining load on other agencies.

Funding arrangements

Under the current funding model, MyTime is funded by FaHCSIA and coordinated nationally by the Parenting Research Centre (PRC). The PRC allocates the following two types of payment to each of the 15 Coalition Lead Agencies (CLAs):

A payment of $2,577 per year per group for administrative and other duties s (64 hours per face-to-face group time per year) for each of the Coalition’s groups; and

A Coalition coordination payment of $271 for a single 2 hour MyTime session (with associated duties).

Both types of payment are flat rates per group; that is, a Coalition delivering 20 groups will receive twice the amount of funds allocated to a Coalition delivering 10 groups.

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MyTime is funded in three year blocks. Most Coalition Coordinators were of the view that the current level of funding was insufficient to meet the objectives of the program. Indeed, several Coordinators reported that the designated funds often covered only a portion of the total expenditure on the program by CLAs. This often occurred when groups chose to deliver sessions over and above the 64 hours for which they received funding each year. Indeed, there were reports of some groups choosing to meet for a total of up to 106 hours per annum. (It is worth noting that neither FaHCSIA nor the PRC expect groups to deliver more than 64 hours’ worth of programs per year.)

80-90% of groups run for more than the 64 hours they are funded to run per term. Some [run] for 106 hours. These additional hours are costly, and the organisations are funding them out of their back pockets.


The cost of hiring venues, employing additional Play Helpers, catering, and social activities were also listed as expenses that CLAs and local providers were regularly required to partially or fully cover.

According to the PRC, ad-hoc funding is available to groups on a case-by-case basis to assist with activities such as group set up. Groups need to demonstrate their need for funds, and how they propose to use such funds; groups are not automatically entitled to receive funding. However, awareness that CLAs could access ad-hoc funding was virtually non-existent among Coalition Coordinators. For instance, several Coalition Coordinators reported that they were currently engaged in administration and support services for the MyTime Peer Support Program in excess of budget. They reported that much of this additional work was tied to the establishment of new groups, which required advertising, catering, venue sourcing, recruitment of support staff, and contacting of potential participants.

It’s totally inadequate. The cost in setting up a group is quite significant [yet] there is no funding to support set up. I’ve raised this with the PRC, there are costs involved in locating venues, advertising, contacting families…


There’s no funding for facilitator follow up, paperwork. Facilitators can spend a lot of time on the phone, supporting people beyond meeting times in the group, making referrals for people. These activities are not funded or acknowledged.


Stakeholders from PRC also stated that there was flexibility within the budget to reallocate funds designated for running groups to offset other costs such as professional development. This approach was not, however, generally viewed positively by Coalition Coordinators (or Facilitators), with most reluctant to cut back on the number of sessions.

The PRC’s response was that we should cut back the facilitator’s number of sessions to offset other costs, but we’re not happy to cut back sessions.


These findings demonstrate that there is a need for the PRC to make CLAs aware that they can access ad-hoc funding under certain circumstances, and that they can use their budgets more flexibly.

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Some Coalition Coordinators also perceived the current funding model to be ‘unfair’ and ‘inequitable’ as groups were funded at a flat rate, irrespective of the costs associated with establishing and delivering the group. They noted that costs associated with running groups in regional and remote locations were significantly higher than groups held in metropolitan areas (where the Coalition Coordinators were based). Accordingly, they felt that the ‘one-size-fits-all’ funding model should be revised to more accurately reflect the degree of difficulty involved in running groups.

These Coalition Coordinators also commented that costs associated with running groups for specific population groups (such as Indigenous and CALD parents and carers) who often had additional needs were considerably higher than for ‘mainstream’ groups. Additional costs associated with Indigenous groups reflected the increased time involved in establishing groups, and in adhering to cultural protocols around engaging Indigenous community leaders who would act as conduits for the recruitment of program participants. These costs were further increased when Coalitions sought to establish and manage groups in rural and remote locations, due to factors such as the Facilitators’ travel time to and from groups. Additional costs associated with establishing and running CALD groups was largely due to the need for interpreters.

It was reported that in a few cases program participants had undertaken their own fundraising initiatives to make up for perceived funding shortfalls, including instances where groups delivered more programs than they were funded to provide. Mention was also made of ‘creative’ agreements between local service providers and vendors to keep service delivery costs down: for example, in one instance the group venue was provided for free in exchange for access to Play Helpers.

Options for a revised funding model could include a two- or three-‘tiered’ approach (with higher payments allocated to groups in regional and remote locations compared to metropolitan locations, and specific groups such as those tailoring to Indigenous and CALD parents and carers). Under this model, funding levels which more accurately reflect the actual costs associated with service development and delivery would need to be developed.

Alternatively, a ‘flexible’ funding model could be developed. Under this model, the PRC would specify the outputs for service delivery and ask CLAs to respond with their own pricing structures. CLAs could be asked to demonstrate how they would propose to deliver groups within a set budget, or they could be asked to quote on the cost to deliver a certain number of groups, or groups in a certain location. This approach would potentially enable PRC to evaluate CLAs based on their ability to provide value-for-money. It could lead to cost-efficiencies associated with service delivery innovation.

Reporting arrangements

Coalition Coordinators had mixed opinions about the program reporting arrangements: some were positive, describing reporting as simple and suggesting the requisite feedback added value to the program; others noted that while effective, the efficiency of reporting could be improved as it was currently a somewhat time intensive process.

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It’s [the reporting] painful, time intensive, effective but not efficient.Coalition Coordinator

Stakeholders from FaHCSIA and PRC were generally positive in their assessment of the current reporting arrangements, but noted that it could be somewhat difficult for Coalition Coordinators to obtain data from Facilitators. In addition to current reporting requirements, these stakeholders felt they would benefit from gaining greater understanding of the type of weekly challenges faced by Coalition Coordinators, as this was not currently reported.

Program resources and guidelines

Coalition Coordinators were all familiar with the MyTime program guidelines as well as the resources available through the MyTime online portal. In general, they expressed positive attitudes towards the program resources, which they found helpful and useful, although most felt unable to comment on the extent to which facilitators were using the guidelines in the planning and delivery of groups. Some considered the lack of overly prescriptive guidelines, structural flexibility and the capacity of each group to determine the operation of each group to be key strengths of the program.

While Coalition Coordinators were not asked specifically about their use of and attitudes towards the online MyTime facilities, many discussed these facilities at interview in response to more general questions. Most who had used these resources indicated that they found them useful and informative, while a few considered that they added little value. Furthermore, some felt that awareness of these resources among Facilitators was low and felt that there was scope for better promotion of these resources.

Recruitment and training of Facilitators and Play Helpers

As noted above, most Coalition Coordinators reported that they had experienced difficulties in the recruitment and retention of Facilitators and Play Helpers. These difficulties were, however, less likely to be reported among Coalition Coordinators who subcontracted to a single organisation with an existing workforce. It should also be noted that the difficulties were more likely to be reported among Coordinators located in regional or rural areas, and the recruitment/retention of Play Helpers was reportedly more difficult than Facilitators.

Because we go through organisations that have their own staff in place, we tend use their people. We have no problem getting Facilitators, but some organisations struggle to get Play Helpers because they’re so casual.


Opportunities for professional development for Facilitators and Play Helpers were largely dependent upon the CLA or local provider with whom they were employed. In instances where the CLA or local provider had a clearly defined professional development program, Facilitators and Play Helpers did not rely on the PRC to provide training. Instead, the PRC conferences were viewed as an opportunity to network with, and learn from, other MyTime Peer Support Program providers. Awareness and usage of the range of PRC professional development resources appeared to be limited.

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Stakeholders from the PRC were committed to providing on-going professional development through face-to-face meetings and conferences and web-based forums such as HQ (the internal collaboration site for MyTime Peer Support staff). Some concern was expressed about low attendance rates amongst Facilitators and Play Helpers at some state-based MyTime Peer Support conferences.

Referral and intake processes (including managing demand)

Based on feedback from Coalition Coordinators, it appears that participant referral and intake processes vary across the different CLAs. Some Coordinators reported that they recruit mainly through self-referral and word-of-mouth, while others reported that they predominantly use health professionals, early intervention services, and disability specific organisations. One Coordinator stated that their approach entailed attempting to ‘convert’ pre-existing peer support groups by outlining the benefits of the MyTime Peer Support Program. In contrast, regional groups were generally built up ‘from scratch’, with Coordinators most often adhering the following process: (a) identify areas with a need for groups by assessing Centrelink and PRC data, (b) Recruit Facilitators and Play Helpers, and (c) Consult with local agencies to generate demand.

Whether or not the MyTime Peer Support Program should support the implementation of condition-specific groups was a point of contention among stakeholders, including different Coalition Coordinators. A minority of stakeholders reported that participants had occasionally expressed dissatisfaction at the program’s broad target audience, and therefore that condition-specific groups may be appropriate in some instances. Other stakeholders, however, suggested that limiting groups in this manner was not in line with the general principles of social inclusion and peer support. Furthermore, some felt that the current model did not lend itself to disability specific groups, which may not be practical, particularly in regional and remote areas.

PRC are very particular that groups have to open to all people, but disability-specific groups can be valuable because there are common themes.


While most Coalition Coordinators reported no current waiting lists, they were also keen to point out that they wanted to establish additional groups to cater to unmet needs. For instance, several Coalition Coordinators indicated that they were keen to establish new groups in areas with minimal community services (such as growth corridors) and, to a lesser extent, with specific groups (such as CALD and Indigenous communities), but felt that they had no scope due to funding constraints. Inconsistent attendance was seen to be an issue by some Coordinators, as it made planning groups difficult. In addition, anticipating whether more than one Play Helper was required to attend a group could be difficult, with the number of children fluctuating greatly between and within groups.

One week we’ll have two play helpers and two kids, the next time we’ll have nineteen kids.Coalition Coordinator

Location and accessibility of service

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Among Coalition Coordinators, location and accessibility of services were mostly described as excellent in metropolitan areas, reasonable in regional areas, and poor in remote areas. One method of managing isolated groups that emerged in a few cases was the use of ‘private’ Facebook groups moderated by the Facilitator. Online forums were seen to be a good method of maintaining group cohesiveness and support during those periods when MyTime Peer Support Groups were not available. In some cases these Facebook groups linked multiple MyTime groups across the state, increasing the support network of program participants and providing access to information about services outside of their area.

Mostly groups will decide how they want to run. Most groups function very casually. Parents turn up on the day and say what’s been happening. If a consistent issue comes up, for example, toilet training, respite services, then we’ll get a speaker in.


Facilitators/Play Helpers


Facilitators and Play Helpers were asked to rate how effective they thought the implementation of the MyTime Peer Support program had been on the following scale: Extremely effective, Very effective, Somewhat effective, Slightly effective, Not at all effective. A result for (a) Facilitators (b) Play Helpers and (c) all respondents is shown in Figure 6, below.

More than two thirds of Facilitators (64%) and three-quarters of Play Helpers (76%) indicated that, in their view, the implementation of the MyTime Peer Support Program had been ‘Very effective’ or ‘Extremely effective’. It should be noted that 35% of Facilitators thought that program implementation had been ‘Slightly effective’ or ‘Somewhat effective’, proving further evidence that there may be some room to improve program implementation.

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Figure 6: Implementation effectiveness (Facilitators and Play Helpers)

11

18

13

53

58

54

32

18

28

3

6

4

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Facilitator (n=96)

Play Helper (n=33)

Overall (n=134)

Extremely effective Very effective Somewhat effective

Slightly effective Not at all effective

Base: n=96 (Facilitator); n=33 (Play Helper); n=134 (Overall)Q. Thinking about all the aspects associated with the implementation of the MyTime Peer Support Program (such as program administration, staffing and resources, recruitment of participants), how effective has the implementation of the program been?



Parents and carers were asked to rate how satisfied they were with the way the MyTime Peer Support Groups had been run on the following scale: Very satisfied, Somewhat satisfied, Neither satisfied nor dissatisfied, Somewhat dissatisfied, Very dissatisfied.

The results for (a) parents and carers located in metropolitan locations, (b) parents and carers located in non-metropolitan locations, and all respondents are shown in Figure 7, below.

A large majority (90%) of respondents indicated that they were ‘Somewhat satisfied’ or ‘Very satisfied’ with the way the MyTime Peer Support Groups were run. There was little difference in satisfaction between Metro and Non-metro sites (both 90%, ‘Very’ to ‘Somewhat satisfied’). Metro groups had a slightly higher proportion of program participants who indicated they were ‘Very satisfied’ (73%) relative to Non-metro participants (66%), but this difference was not statistically significant.

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Figure 7: Overall satisfaction with groups (Parents and Carers)

73

66

70

17

24

20

5

4

3

6

4

4

3

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Metro (n=243)

Non-metro (n=136)

Overall (n=389)

Very satisfied Somewhat satisfied

Neither satisfied nor dissatisfied Somewhat dissatisfied

Very dissatisfiedBase: n=243 (Metro); n=136 (Non-metro); n=389 (Overall)Q. How satisfied are you with the way the MyTime Peer Support Groups were run?


When asked about program implementation, most parents and carers, not surprisingly, tended to focus on the role of Facilitators and Play Helpers. Facilitators were variously described by program participants as ‘brilliant’, ‘outstanding’, ‘knowledgeable’, and ‘empathetic’. Parents felt that it was important for the Facilitator to not only empathise with them, but also clearly understand the nature of their situation, and be able to provide clear and correct information and emotional support.

They have to be understanding and be able to empathise. There’s nothing worse than if you’re standing there with someone in charge, your kid is going ballistic, and they’re looking at you like…


Variation in the ways in which the groups had been implemented was evident during the mini groups with parents and carers: when one participant volunteered information about the way their group operated, it was common for another participant to remark that their group operated in a different fashion.

Differences observed in the implementation of groups spanned the focus of groups (such as whether the group was more focused on pampering and relaxation or learning and information), the extent to which the learning environment was structured, frequency of meetings, the extent to which groups accommodated working parents (such as whether they scheduled groups in the evening and on

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weekends), the extent to which activities were structured and the extent to which Facilitators sought input from program participants in the design of program activities.

Despite these differences, program participants generally expressed a high degree of satisfaction with their group.

Most participants described Play Helpers as fulfilling a vital role within the groups: they allowed parents and carers to relax, concentrate, and, consequently, receive the most benefit from the program. Play Helpers were also praised for their patience and understanding when dealing with particularly difficult behaviour.

They are that good. If it was me I’d get upset with him but they don’t.Metro Parent/Carer

As was reported earlier, it should be noted that when negative experiences were reported in the qualitative research, they tended to be related to group-specific issues, rather than to the program as a whole. One participant had a less positive experience with a Facilitator who was described as having ‘limited knowledge of available supports and resources’. Another described the Facilitator of their first group as ‘overly negative’, but had since found another group that she ‘loved’.

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6. Enablers and barriers to participation

6.1 Chapter summary

There was a high degree of consistency across different stakeholder groups regarding which factors were perceived to be enabling program participation by parents and carers, and which factors were seen as barriers to participation. All stakeholder groups agreed that the opportunity to gain a peer support network was the biggest ‘drawcard’ of the program for parents and carers. Also, the provision of Play Helpers during these sessions was considered to be an important factor in ensuring the group sessions were productive, and in giving respite to parents and carers. The popularity of this service among parents and carers illustrates that the design of the program is sound, and is effective at meeting the needs of parents and carers in the support groups.

In order to achieve the program objectives of making the service accessible to all sectors of the community, it is important to overcome the access barriers identified in the research. There were three types of access barriers identified by stakeholder groups: physical access barriers (with some low-income or regional parents and carers not having their own transport to the groups); cultural barriers for CALD parents (due to the high cost of providing translators and translating written materials); and parents not being able to attend groups due to work or medical commitments. In overcoming these barriers, the key success factor that was identified was flexibility (of offering transport, translated materials, or session times) which will ensure that parents and carers across the community can receive the benefits of this program.

6.2 Enablers to participation



Stakeholders identified a wide range of factors which they believed were enabling parents and carers to participate in the MyTime Peer Support Program. Most factors reported by Coalition Coordinators related to the program model, and were as follows:

The ability to receive support from peers;

The biggest drawcard is peer support. They can see that others are in the same boat, same with their kids.


The provision of Play Helpers, and the ability to bring siblings as well as the child with a disability or medical condition;

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Flexibility in the content, structure, and timing of the groups (such as holding the groups in the morning), as the focus was foremost on meeting the needs of parents and carers;

Selection of appropriate and geographically accessible venues;

The quality of Facilitators – as discussed above, having Facilitators who are empathic, knowledgeable, resourceful and encouraged participation;

Having an ‘open-door’ policy, and not placing expectations on parents to attend every group; and

There being no cost to attend the program, which was thought to make the groups accessible to parents and carers from low income families.



Parents and carers identified an almost identical range of factors which enabled them to attend the MyTime groups. These factors are primarily related to the program model, and included:

The ability to receive peer support, and information from the Facilitator, guest speakers and peers alike;

The provision of Play Helpers, and the ability to bring children to the group. Whilst parents and carers frequently referred to Play Helpers ‘providing childcare’, it was widely understood that their role was to engage and play with children but not to provide a childcare service;

The childcare… the physical separation is great. I wouldn’t be able to relax without it.Regional Parent/Carer

The location and timing of the groups, with most groups held in the mornings; and

The morning group works well. I have a younger one and she can then nap in the afternoon.Regional Parent/Carer

The quality of Facilitators.

Parents from Indigenous and CALD backgrounds were also more likely to mention the provision of transport as an enabling factor. For example, parents attending a group for families from the Horn of Africa mentioned that they had no transport but were able to attend the group as transport was provided.

If there was no bus, I couldn’t get to the group.Metro Parent/Carer – CALD

Parents from these groups were also more likely to mention the lack of cost as being an important enabler for them to participate in the group.

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6.3 Barriers to participation



Stakeholders generally recognised that there were some aspects central to the program model which discouraged participation among certain community members. Accessibility was a key barrier. Other barriers related to factors such as group dynamics, and challenges involved in meeting the needs of groups with specific needs. These barriers are discussed below.

Access barriers

Geographical and transport barriers were noted by many Coalition Coordinators, particularly for parents and carers living in regional areas (where some participants reportedly travelled up to 1.5 hours to attend a group), and those on low incomes who do not have their own transport. Some Coalition Coordinators also reported that while most groups were held in the morning on weekdays (to maximise attendance), this arrangement did not meet the needs of many working parents. To address this barrier, some groups were held in the evenings and on weekends to enable the participation of a wider group of parents and carers.

Group dynamics, including the behaviour of both parents/carers and children

Issues relating to group dynamics, as reported by Coalition Coordinators, included ‘dominating parents’, ‘whingeing parents’, and children with challenging behaviours (such as aggression towards other children).

Coming to a group where people can be a bit ‘navel gazing’ can be a challenge. Some people can be quite intense and can take over. It takes a really skilled Facilitator to be able to manage that, especially dominating parents and parents who constantly whinge about their issues. This can be really off-putting for new families.


Some children have high support needs and challenging behaviours. A lot of parents find that quite difficult. Some parents use HACC [Home and Community Care] funding to care for a child with a disability so that they can come to the group [without their child]. Some children do pose a risk to other children.


They noted that these situations could only be successfully negotiated by a skilled Facilitator.

Cultural and language barriers

Some Coalition Coordinators commented that they found it difficult to make the groups accessible to parents and carers from CALD backgrounds. They noted that there were high costs associated with bringing an interpreter along to a group, and that their agencies generally lacked resources for translating program materials into community languages. As a consequence, some remarked that parents and carers from CALD backgrounds ‘tend to come once but not come back again’.

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The nature of peer support

Some Coalition Coordinators observed that some participants, mainly fathers, were ‘uncomfortable’ with the concept of peer support. They felt that such participants preferred to ‘do things’ rather than ‘sit around and talk’.

Big strong men like to do it on their own … they just want to get away from it, not talk about their children or disability issues.


As a consequence, some Coalition Coordinators reported running activities such as ‘golf days’ to engage this group of participants. Coalition Coordinators, however, were quick to emphasise that this discomfort with peer support was not a concern for the vast majority of fathers.



When asked if they had encountered any barriers to attending MyTime Peer Support Groups, most parents and carers reported that they had not encountered any barriers apart from factors over which they had limited control, such as children being sick and having therapist or specialist appointments which clashed with the group. Several parents and carers reported that despite these barriers, they still made a concerted effort to attend the groups, even if they attended only a small part of the group; such was the perceived value of the groups. Several others commented that they appreciated that members could ‘drift in and drift out’, and therefore did not feel compelled to attend every session.

Some terms, it’ll be where you’re going for therapy. Other things we have going on can be so inflexible. The fact that we can come and go and then come back means a lot.


I’ve got a sleep specialist, a neurosurgeon, an OT, [my son’s] on the waiting list for speech, he’s got a paediatrician, some things are just inflexible.


When asked if they were aware of any barriers that other program participants may have encountered, most parents and carers identified a similar range of barriers to those articulated by the Coalition Coordinators. These barriers are outlined below.

Access barriers

Lack of transport was raised as a potential barrier by some parents and carers, however, it was not reported to be an actual barrier for any of the research participants. Two CALD participants attended a group which provided a bus service, whilst two Indigenous participants attended a group in which car-pooling was arranged on their behalf. In regional areas, lack of transport, and travel times to and from groups, were identified as barriers to participation.

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If you didn’t have a car you wouldn’t be able to get there.Regional Parent/Carer

It should, however, be noted that some parents from regional areas reported that they were accustomed to the ‘tyranny of distance’, and were prepared to travel for an hour to attend a group as they spent several hours a week travelling to other therapist and specialist appointments.

Group dynamics

A small number of program participants reported that they had encountered ‘difficult’ and ‘negative’ people at their groups, and had consequently begun attending another group.

I wouldn’t have gone back to the first group I attended because they were so negative… That group was closed down and I can see why.


The nature of peer support

Some parents and carers observed that program participants occasionally found the groups ‘too confronting’. They perceived that this discomfort was due to the person feeling ‘overwhelmed’ with their personal circumstances, rather than arising from the dynamics within the groups.

I had someone in my group who didn’t come back. For one it was too emotional.Metro Parent/Carer

6.4 Managing non-attendance



Coalition Coordinators reported that there was significant fluctuation in attendance within groups. They attributed this variation to a range of factors, such as:

Children being unwell,

Parents having other appointments,

Parents not ‘needing’ the groups at a particular time, and

To a lesser extent, the content and format of groups and the Facilitator’s engagement skills.

Most Coalition Coordinators reported that they were aware of Facilitators who had managed to build groups with a relatively strong and stable membership. Some strategies which they felt helped to promote attendance included telephoning new members before they attended their first group, and providing follow-up support to members outside the groups. They recognised that Facilitators were generally not funded, and not expected, to provide this level of service. However, they had observed that such practices often translated into improved attendance.

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Quantitative and qualitative research findings

As previously noted, in the online survey, almost a third (32%) of Facilitators and Play Helpers reported that one of their main challenges has been the establishment and maintenance of groups (See Figure 5: Main challenges to date).

In follow-up qualitative research, Facilitators concurred that managing attendance was one of their main challenges, and that the most effective strategies to engage program participants involved the provision of one-on-one support and follow-up. Some Facilitators observed that certain types of activities generally attracted higher numbers of program participants; however, there was still some variation in attendance (for example, an activity which attracted a high rate of participation may result in low participation the next time it was run).


Qualitative and quantitative research findings

Around a quarter of respondents indicated that they were not currently attending a MyTime group (see Figure 8, overleaf). The main reason why parents and carers were not currently attending a group was due to the timing of the meeting/their children being engaged in other activities or at school (53%). This was followed by the belief that the group did not meet their or their child’s needs, was not effective or another program better met their needs (17%) and issues related to program governance and auspicing (14%).

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Figure 8: Reasons for non-attendance (Parents and Carers)

53%

17%

14%

10%

8%

4%

0% 10% 20% 30% 40% 50% 60%

Timing of meeting

MyTime does not meet my/my child's needs

Program governance and auspicing

Location of MyTime group

Group dynamics or low attendance

Other

Base: n=103 (Parents/Carers); Asked of those who said they were not currently attending a groupQ. Why are you not currently attending a group?

In the qualitative research, few program participants reported that they were aware of non-attendance being an issue in groups that they attend, apart from some parents and carers who may turn up once and not return, which they assumed was because the group did not meet their needs.

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7. Participant outcomes

7.1 Chapter summary

In both the qualitative and quantitative research with parents and carers, Coalition Coordinators, and Facilitators and Play Helpers, there was a general consensus that the MyTime Peer Support Program was delivering its intended benefits for participants. Across all groups, the main program benefit was consistently identified as giving parents and carers the opportunity to meet and share experiences with other parents and carers, and this was also seen to facilitate the other program objectives. For example, parents and carers increased their knowledge of caring for a child with a disability or chronic medical condition through suggestions and recommendations from other group participants (as well as from guest speakers). Often, parents and carers informed each other about government and community services available, and met outside scheduled sessions, increasing their linkages with the community. All stakeholder groups reported that parents and carers also felt more supported in their caring role, by the government, and by each other.

A key strength of a group support model is that once the group is established, the group can become self-sustaining, and the benefits of the group to members can exceed those originally intended. For example, group members can become involved in marketing the group via word of mouth to other parents and carers, and indeed all parents and carers surveyed said either that they would recommend the group to others, or that they already had recommended it. Also, Play Helpers reported an important potentially unintended program benefit for the children of the parents and carers who did not have a disability or chronic medical condition. For these children (often siblings), the opportunity to socialise and play with children similar to their sibling reportedly brought increased understanding of their sibling’s condition, and potentially greater acceptance of them.

7.2 Benefits of participation to parents and carers



Coalition Coordinators reported that they have used both formal (e.g. Annual Satisfaction Survey; site visit) and informal (telephone and email feedback from Facilitators) mechanisms to assess the benefits of program participation to parents and carers. Consistent benefits were generally cited across all Coalition Coordinators, with most agreeing that parents/carers receive one or more of the following benefits via program participation: reduced social isolation, respite, acquisition of relevant information (especially related to government programs and policies), and improved psychological wellbeing. One Coordinator also suggested that the program could result in improved physical health among program participants due to a link between psychological and physical wellbeing.

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We want parents to not be overwhelmed by their journey. We offer them information, and help them to process what is coming next


Coalition Coordinators were also directly asked to comment on whether they thought the program objectives, all of which relate to participant benefits, were being met. A summary of responses to each program objective has been provided, below.

Parents and carers who participate in MyTime Peer Support Groups develop relationships with other parents of children with a disability or chronic medical condition.

There was a general consensus that this objective was met by the largest number of program participants, with formal and informal feedback suggesting that most parents and carers develop peer-to-peer relationships, regardless of how many peer support sessions they attend. Importantly, a number of Coordinators observed that these relationships often extend beyond the group setting, promoting a general social connectedness.

A lot of groups meet outside of MyTime. They’ve set up private Facebook groups to network with each other, they babysit each other’s children. It’s [the program] that is extending social connectedness.


Parents and carers participating in the MyTime Peer Support Groups have an increased knowledge of caring for a child with disability or chronic medical condition.

Coalition Coordinators felt that the exchange of information and ideas between parents/carers – especially between experienced and inexperienced parents/carers – occurred in almost every group session. Information provision via Facilitators and guest speakers was, in contrast, reported to occur more often in some groups than in others. This variance was not, however, generally viewed negatively by Coalition Coordinators, with most stating that the flexibility of program delivery (i.e. tailoring groups to the context and the needs of members) was a key strength of the model.

It’s doing a job that isn’t being done in other areas. It’s a great way for parents to get together, share where they can help, which doctor they’d recommend, how to get things done.


Strong linkages exist between MyTime Peer Support Group participants and the broader community, including relevant partnerships, and appropriate networks.

On the whole, Coalition Coordinators were unwilling to comment in depth on this objective, stating that formal and informal feedback from parents/carers and Facilitators/Play Helpers had tended to focus on the fostering of relationships and peer support.

Parents and carers who participate in MyTime Peer Support Groups feel supported in their caring role.

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There was a general consensus that program participants were appreciative of the efforts government had made to assist them in their caring role. Two Coalition Coordinators were of the view that parents and carers felt especially supported when groups were tailored to meet their specific needs (e.g. translation of material for CALD groups, evening groups for working parents).

Not surprisingly, Coalition Coordinators generally agreed that the MyTime Peer Support Program is a valuable resource for parents and carers of children with a disability or chronic medical condition. Mostly, Coordinators felt that the value of the program lay in the fact that it provides a unique service in a group of community members sometimes overlooked by government services and programs. Coordinators also spoke highly of the consistent program outcomes, with several stating that it was unusual for a government program to benefit such a large proportion of participants.

It’s fantastic, it’s a very unique program. We’re very lucky to have it. I have not heard of people who don’t like it, every participant values the program so much.


Coordinators reported that formal and informal feedback from Play Helpers suggests that the program is also valuable to the children with a disability or chronic medical condition: key benefits cited included an improved ability to socialise and play with other children. It is worth noting that a number of Coalition Coordinators reported, unprompted, that the program was equally, if not more, beneficial for the siblings of children with a disability or chronic medical condition, as it helped them to understand and accept their brother or sister’s disability or condition.

It’s more beneficial for the other siblings, especially the pre-schoolers, who can say ‘that person is a bit like my brother’. The needs of siblings are often overlooked.




Facilitators and Play Helpers were asked to rate how beneficial they thought the MyTime Peer Support Program was to parents and carers of children with a disability or chronic medical condition on the following scale: Not at all beneficial, Slightly beneficial, Somewhat beneficial, Very beneficial, Extremely beneficial. The results for (a) Facilitators, (b) Play Helpers, and (c) all respondents are shown in Figure 9, overleaf.

More than half of the Facilitators and Play Helpers indicated that they thought the program was ‘Extremely beneficial’, with 63% of Facilitators and 52% of Play Helpers selecting this option. It is possible that more Facilitators selected this option because they have a better sense of the program outcomes that relate to parents and carers. Play Helpers, in contrast, are more likely to be attuned to outcomes for children with a disability or a chronic medical condition, and their siblings.

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Figure 9: Perceived program benefit (Facilitators and Play Helpers)

63

52

61

31

39

32

5

9

6

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Facilitator (n=98)

Play Helper (n=33)

Overall (n=136)

Extremely beneficial Very beneficial Somewhat beneficial

Slightly beneficial Not at all beneficial

Base: n=98 (Facilitator); n=33 (Play Helper); n=136 (Overall)Q. How beneficial do you think the MyTime Peer Support Program has been to parents and carers?

When asked, in a completely open-ended fashion, to list the main program benefits to parents and carers, more than eight out of 10 respondents included support networks/supportive environment in their list (see Figure 10, below).

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Figure 10: Main program benefits (Facilitators and Play Helpers)

85%

47%

21%

4%

2%

1%

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Building support networks and access to asupportive environment

Provision of information about mental and physicaldifficulties and the opportunity to discuss

childrens' needs

Relaxation and respite

Benefits for children

Benefits - General

Other

Base: n=100 (Facilitator); n=34 (Play Helper); n=139 (Overall)Q. What do you think are the main benefits to parents and carers of participating in the MyTime Peer Support Program?

Given that most Facilitators and Play Helpers felt that the program was ‘Extremely beneficial’, it is not surprising that all of the Facilitators and Play Helpers indicated that they either would or already had recommended the program to parents or carers of children with a disability or chronic medical condition (see Figure 11, overleaf). Indeed, the majority of Facilitators (87%) indicated that they had already recommended the program.

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Figure 11: Recommendation of program (Facilitators and Play Helpers)

87

58

80

13

42

20

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Facilitator (n=97)

Play Helper (n=33)

Overall (n=135)

Yes, I have Yes, I would No, I wouldn't

Base: n=97 (Facilitator); n=33 (Play Helper); n=135 (Overall)Q. Would you recommend the MyTime Peer Support Program to someone caring for a child with a disability or chronic medical condition?

As part of the online survey, Facilitators and Play Helpers were also asked to indicate the extent to which they agreed or disagreed that each of the program objectives had been met using a scale from 1 to 10, where 1 is ‘Strongly disagree’ and 10 is ‘Strongly agree’. As shown in Figure 12, there was a very high level of agreement with each objective:

93% agreed that program participants develop relationships with other parents/carers as a result of participation;

93% agreed that program participants feel supported in their caring role as a result of participation;

90% agreed that program participation increased the knowledge of participants; and

87% agreed that program participants developed strong linkages with the broader community through program participation.

Taken together, these results – which are consistent with the findings from the qualitative research with program stakeholders – provide further evidence that the program objectives (i.e. key participant outcomes) are being met.

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Figure 12: Program objectives (Facilitators and Play Helpers)

93

93

90

87

3

6

7

4

4

4

7

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Develop relationships with other parents and carersof children with disability or chronic medical

condition (n=137)

Feel supported in their caring role (n=136)

An increased knowledge of caring for a child withdisability or chornic medical condition (n=135)

Develop strong linkages with the broadercommunity, including relevant partnerships and

appropriate networks (n=135)

7 - 10 Agree 5 - 6 Neither agree nor disagree 1 - 4 Disagree

Base: n= 135-137 (Facilitator and Play Helper Overall)Q. For each one, please indicate the extent to which you agree or disagree that the program is meeting this objective.

Given the general consensus that the MyTime Peer Support Program is meeting all objectives, it is interesting to consider which program elements Facilitators and Play Helpers felt contributed the most to the meeting of these objectives (see Figure 13) and which they felt contributed the least (see Figure 14, overleaf). More than half of respondents (55%) included ‘Peer Support’ in the list of program elements that they felt contributed the most to the program meeting its objectives. This was followed by dissemination of information, which was mentioned by 35% of respondents, and respite/relaxation (including the provision of Play Helpers), which was mentioned by 14% of respondents.

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Figure 13: Elements that contributed most to the program meeting its objectives (Facilitators and Play Helpers)

55%

35%

14%

12%

11%

4%

4%

6%

0% 10% 20% 30% 40% 50% 60%

Peer-support e.g., networking, making friends andsharing problems in a non-judgemental environment

Dissemination of information from guest speakers,parents/carers, and MyTime Staff

Respite/ Relaxation/ Provision of child-care

Program flexibility

Staffing e.g., Facilitator/ Play Helper skill/ knowledge/dedication

Benefits for children e.g., socialising, learning newskills

Regularity of meetings

Other

Base: n=100 (Facilitator); n=34 (Play Helper); n=139 (Overall)Q. Which aspects of the program contribute MOST to achieving the program’s outcomes?

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As can be seen below in Figure 14, program elements which respondents felt were contributing the least to the program meeting its objectives included the restriction placed on the organisation of groups (e.g. size, structure), which was mentioned by 15% of respondents, and inadequate resources, which was mentioned by 11% of respondents. It should be noted that 23% of respondents were unable to name a program element, or stated that there were no weak program elements.

Figure 14: Elements that contributed least to the program meeting its objectives (Facilitators and Play Helpers)

15%

11%

7%

6%

4%

4%

3%

4%

0% 5% 10% 15% 20%

Aspects related to organisation of groups e.g., size,restrictrions, times, structure

Inadequate resources to use in groups to meet needsof parents

Aspects related to interaction within groups e.g.,conflict, dyanmic, atmosphere

Aspects related to budget or funding

Insufficient Facilitators/moderators

Reporting and administration

Insufficient links with wider community

Other

Base: n=100 (Facilitator); n=34 (Play Helper); n=139 (Overall)Q. Which aspects of the program contribute LEAST to achieving the program’s outcomes?

Parents and carers


As with the Facilitators and Play Helpers, parents and carers were asked to rate how beneficial they thought the MyTime Peer Support Program was to parents and carers of children with a disability on the following scale: Not at all beneficial, Slightly beneficial, Somewhat beneficial, Very beneficial, Extremely beneficial. The results for (a) respondents in metropolitan locations, (b) respondents in non-metropolitan locations, and (c) all respondents are shown in Figure 15, overleaf.

More than 8 out of 10 respondents overall indicated that they thought the program was either ‘Extremely beneficial’ (59%) or ‘Very beneficial’ (29%) to parents and carers of children with a disability or chronic medical condition.

The perceived benefit from the program did not differ across different locations, with near identical results being obtained among respondents located in metropolitan and non-metropolitan locations

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(see Figure 15, below). This suggests that while program implementation and execution may need to be tailored to different locations, this tailoring does not affect participant perceptions of the overall benefit of the program.

Figure 15: Perceived program benefit (Parents and Carers)

59

59

59

29

29

29

9

11

10

3

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Metro (n=243)

Non-metro (n=133)

Overall (n=383)

Extremely beneficial Very beneficial Somewhat beneficial

Slightly beneficial Not at all beneficial

Base: n=243 (Metro); n=133 (Non-metro); n=383 (Overall)Q. How beneficial do you think the MyTime Peer Support Program is to parents and carers of a child with a disability or chronic medical condition?

It is possible that location does not affect perceived benefit because, when asked to list the main benefits of participating in the program, 86% of participants cited peer support (including provision of information from fellow parents/carers), a program element that appears consistent across different approaches (see Figure 16, below).

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Figure 16: Main program benefits (Parents and Carers)

86%

15%

5%

5%

2%

1%

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Support network and sharing of information

Relaxation and respite

Access to specialist resources

Benefits to children with/ without disability

Benefits associated with Facilitator

No specific positive benefits achieved

Base: n=410Q. What do you think are the main benefits to parents and carers of participating in the MyTime Peer Support

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Not surprisingly, the vast majority of program participants indicated that they either had recommended (62%) or would recommend (36%) the program to a parent or carer of a child with a disability or chronic medical condition, regardless of whether they were located in a metropolitan or non-metropolitan location (see Figure 17, below).

Figure 17: Recommendation of program (Parents and Carers)

61

65

62

38

31

36

4

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Metro (n=234)

Non-metro (n=129)

Overall (n=369)

Yes, I have Yes, I would No, I wouldn't

Base: n=243 (Metro); n=129 (Non-metro); n=369 (Overall)Q. Would you recommend the MyTime Peer Support Program to someone caring for a child with a disability or chronic medical condition?

As part of the online survey, parents and carers were also asked to indicate the extent to which they agreed or disagreed with a series of statements about the MyTime Peer Support Program – all of which related directly to the program objectives – using a scale from 1 to 10, where 1 is ‘Strongly disagree’ and 10 is ‘Strongly agree’. As shown in Figure 18, there was a very high level of agreement with each statement:

84% of respondents agreed that their child/children enjoyed their time with the Play Helper;

80% of respondents agreed that the resources provided during support groups were useful;

79% of respondents agreed that the groups had helped them to feel supported in their caring role;

78% of respondents agreed that the facilitator/facilitators had been able to answer all of their questions; and

77% of respondents agreed that they had developed relationships with other parents of children with a disability or chronic medical condition respondents.

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Figure 18: Program objectives (Parents and Carers)

84

80

79

78

77

6

10

11

11

12

10

9

9

11

11

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

My child/children enjoyed their time with the PlayHelpers (n=325)

The resources provided to me during the MyTimePeer Support Groups were useful (n=383)

Participating in MyTime Peer Support Groups hashelped me to feel supported in my caring role

(n=389)

The MyTime Peer Support Program Facilitator hasbeen able to answer all of my questions (n=386)

I've developed relationships with other parents ofchildren with a disability or chronic medical

condition (n=389)

7-10 Agree 5-6 Neither agree nor disagree 1-4 Disagree

Base: n=325-389 (Overall)Q. Below are some statements about the MyTime Peer Support Program. For each one, please indicate the extent to which you agree or disagree.


Taken together, the results from the quantitative research with parents and carers provide strong evidence that the MyTime Peer Support Program is meeting its objectives, and benefiting parents/carers of children with a disability or chronic medical condition. The qualitative research phase provided further evidence in support of this view, with parents/carers consistently reporting that they had benefited from the following program elements: peer support, provision of information (via guest speakers, the Facilitator, and other parents), and respite.

I love the support… It’s about feeling that I’m normalRegional Parent/Carer

MyTime is my time, it’s time out for us. She [the Facilitator] will ask us what we want.Regional Parent/Carer

The talks are really good, but just as useful for us has been people like Melinda turning up and saying ‘have you heard about this, have you heard about that’, the cross-information between parents has been great.


As part of the qualitative research, parents and carers were also asked to list the lessons they have learned since starting the MyTime Peer Support Program. Almost all participants reported that they had developed an increased sense of social connectedness after learning that ‘they are not alone’.

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You learn that you’re not on your own, there’s always someone else going through the same thing.


It connects you to the community in other ways, you start talking about schooling around the area, and other community-based events.


There was also a general consensus that program participation results in an increase in knowledge relating to government policies/programs, funding, and service provision.

A lot of us at MyTime [Peer Support Groups] get services because we’ve given each other the information… Other parents who don’t come to MyTime [Peer Support Groups] are quite isolated and don’t have access to these.


A number of parents and carers reported that, prior to group attendance, they had felt that they were to blame for their child’s condition. This outlook was especially prevalent amongst CALD participants, with several directly stating that this was the dominant view among their family and friends. Condition-specific medical knowledge and peer support acquired during the MyTime Peer Support Groups was consistently reported to have led to a decrease in self-blaming.

In Sudanese culture we believe people have disabilities because of ‘bad blood’. My husband ran away and said I was not a healthy woman. My husband’s family blamed me for my son’s condition. The group said to me ‘take care of your kids, take care of yourself’. It’s good for me.

CALD Parent/Carer

Finally, a minority of parents and carers reported that the most important lesson that they had learnt through the MyTime Peer Support Groups was that it is acceptable to ask for help, or obtain assistance through government and non-government services and programs. These parents generally reported that, prior to group attendance, they felt that they needed to be able to cope by themselves, and that asking for help, relying on others or accessing services was not necessary. Several parents and carers also reported that they had felt guilty for wanting to ‘take a break’ from caring for their child, but that fellow parents and carers and the Facilitator had helped them to understand that respite was vital for their mental and physical health, and that it would enable them to be a better parent to their children (including children without a disability or chronic medical condition).

You feel guilty because it’s your child and you should be able to look after them.Regional Parent/Carer

It took me a long time to get my respite worker to come every fortnight… My facilitator is always pushing me to access more respite.


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8. Strengthening the program model

8.1 Chapter summary

Reflecting the high satisfaction levels of stakeholder groups with the MyTime Peer Support Program, the main suggestions for improvement concerned the implementation and management of the program, rather than the program’s design or purpose. The main suggestion from Coalition Coordinators was a review of the funding system, to address the time they spent on out-of-session activities such as preparation or following up group members. Coalition Coordinators and FaHCSIA staff also agreed that the processes for establishing new groups and targeting resources could be improved. The focus of parents and carers (as well as Facilitators and Play Helpers) was on improving the organisation and frequency of groups, as well as providing more resources (staff and materials) for the group sessions.

8.2 Suggestions for improvement



Most stakeholders had few suggestions for improvement. To a large extent, their lack of suggestions reflected a high degree of satisfaction with the current program model.

The main suggestions proposed by Coalition Coordinators related to:

Reviewing the current funding model, for example, to better reflect time spent on non-program delivery activities such as group preparation, following up group members, and higher costs associated with delivering groups in remote locations; and

Improved processes for managing and responding to demand, including undertaking greater consultation with communities to establish whether there is demand for groups before establishing new groups. Some Coalition Coordinators reported that they no longer had access to Centrelink data showing the locations of families in their catchment areas who received eligible payments. Other Coalition Coordinators reported that they currently received this information through the PRC.

The issue of managing demand was also raised by stakeholders from FaHCSIA, who expressed a view that there was scope for improvement in how groups were targeted, and how they could become more effective and responsive to the needs of parents and carers.

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The PRC made the following suggestions to funding arrangements:

Review the approach of having only one Play Helper per group – groups which attract a high number of children would benefit from having two Play Helpers consistently available. Groups may be able to negotiate a supply of Play Helpers by establishing linkages with local TAFES offering childcare courses; and

Review arrangements by which Coalitions can currently split payments for one group (i.e. 64 hours of face-to-face service delivery) across two groups. Under the current arrangements, when a group is unable to deliver the number of hours for which it has been funded, Coalitions can divert funding to another group. Whilst this is an uncommon practice, it can be time-consuming to administer as the groups cannot be listed as separate groups.



The perspectives of Facilitators’ and Play Helpers’ regarding how the MyTime Peer Support Program could be better implemented were examined in the online survey (see Figure 19, below). 22% of Facilitators and Play Helpers thought that the program had been implemented well and therefore did not or could not be improved. Where Facilitators and Play Helpers thought there was some room for improvement, the main suggestions proposed were by Facilitators and Play Helpers related to improvements to reporting and administration processes (12%).

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Figure 19: Suggestions for improving program implementation (Facilitators and Play Helpers)

22%

12%

9%

9%

9%

8%

6%

4%

4%

2%

0% 5% 10% 15% 20% 25% 30%

No/ None

Improvements to reporting and administrationprocesses

Improvements to marketing, advertising, and media

Improvements to MyTime groups e.g., facilitation,structure, and timing

Improvements to resources available to groups e.g.,relationships to community/ service providers

Improvements to governance and auspicing ofprogram

Increased funding e.g., more Facilitators/ PlayHelpers, wages

Training/ supervision of Facilitators and Play Helpers

Other improvements

Don't know/ Not sure

Base: n=100 (Facilitator); n=34 (Play Helper); n=139 (Overall)Q. Can you think of any ways in which the MyTime Peer Support Program could have been implemented better?

The perspectives of Facilitators’ and Play Helpers’ regarding how MyTime could be improved to better meet its objectives were assessed through the online survey (see Figure 20, below). The main suggestions proposed by Facilitators and Play Helpers related to having greater capacity to make the groups flexible (for example, the timing, frequency and location of groups and decreased restrictions on participation) (15%), increased resources and funding (such as funding for websites and guest speakers) (14%), and additional groups and facilitators (13%).

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Figure 20: Suggestions for improvement (Facilitators and Play Helpers)

15%

14%

13%

9%

9%

7%

4%

4%

1%

8%

0% 5% 10% 15% 20%

Group flexibility e.g., timing and frequency etc...

Increased resources and funding for resources

Additional groups and Facilitators

Does not need improving

Increased marketing and awareness

Improvements for Facilitators and Play Helpers

Role and responsibility of group to parents

Increased program evaluation

Other

Not Sure/ Don't know

Base: n=100 (Facilitator); n=34 (Play Helper); n=139 (Overall)Q. How do you think the MyTime Peer Support Program could be improved so that it better meets its objectives?

In the qualitative research with Facilitators and Play Helpers, most reported that they felt the program model would be strengthened if there was increased marketing of the groups to both eligible parents and carers and potential referral sources such as service providers (for example, maternal and child health nurses), as well as additional resources with which to run the groups.



In the survey questionnaire, the main suggestions for improvement proposed by parents and carers concerned factors specific to the groups (such as the frequency, size and number of groups, and the location and venue) (21%) and access to activities and resources (such as guest speakers, day trips and applying for grants) (14%). Just over two in ten (22%) parents and carers were unable to identify any suggestions for improvement (see Figure 21, below).

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Figure 21: Suggestions for improvement (Parents and Carers)

22%

21%

14%

6%

3%

3%

3%

2%

2%

2%

1%

1%

3%

1%

0% 5% 10% 15% 20% 25% 30%

None/ Unsure what improvements could be made

Organisation of groups e.g., frequency, size etc…

Access to activities and resources

Staffing and professional development

Increase or maintain flexibility of program

Increase or maintain focus on children

Increase marketing and advertising

Increase or maintain structured nature of programs

Increase or maintain flexibility of recruiting criteria

Creation of disability specific/ criteria specific groups

Group forums for MyTime members

Governance and auspicing of MyTime program

Other

Non-response

Base: n=410 Q. How do you think the program could be improved so that it better meets the needs of your family?


In the qualitative research, most parents and carers were unable to identify any ways in which the MyTime groups could be improved. Among the few participants who proposed changes, most related to increasing the number of group contact hours. For example, a CALD parent with no family living in Australia who attended a group which met for two hours every week suggested that the group could meet two days a week for two hours. Another CALD parent who attended a group which was jointly coordinated by a Migrant Resource Centre made the following suggestion concerning weekends away:

Increase the days going away, it is good for the children, they are enjoying it – every fortnight or every month.

CALD Metro Parent/Carer

Some parents and carers felt that there was scope to improve the marketing of MyTime Peer Support groups to both potential referral sources (such as Maternal and Child Health Nurses) and eligible parents. Several stated that they were often struck by the lack of awareness of the program among professionals working in the early childhood and disability sector, as well as parents and carers who were heavy users of other services and who they felt would benefit greatly from attending the groups.

A small number of parents who attended groups that focussed primarily on social activities for parents (such as morning teas) and which seldom featured guest speakers suggested that their

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groups could hold regular events with guest speakers to help increase parents’ and carers’ knowledge of parenting information and services available. Conversely, none of the parents and carers who reported attending groups which had a strong emphasis on guest speakers suggested reducing the frequency of the guest speakers.

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9. Conclusions and Recommendations

9.1 Conclusions

Overall, this evaluation has found that the MyTime service delivery model is an effective model. In particular, it has been very effective in delivering against three of its four intended outcomes and moderately effective in relation to the fourth intended outcome.

The remainder of this Chapter contains a response to each of the key evaluation questions, including recommendations for how the MyTime Peer Support Program could be improved for future phases. These responses were developed using the qualitative and quantitative research findings from (a) program stakeholders, (b) Facilitators and Play Helpers, and (c) program participants. Key findings from the literature review (see Chapter 2) and administrative data review (see Chapter 3) have also been considered in the development of conclusions and recommendations.


The effectiveness of peer support groups has been directly examined in only a limited number of methodologically robust, comprehensive studies. Nevertheless, the available evidence consistently suggests that participation in peer support groups by parents and carers of children with disabilities and other medical conditions is associated with the following positive outcomes:

acquisition of relevant knowledge and skills by parents receiving support;

improved physical and psychological health in parents receiving support; and

increased coping and decreased isolation in parents giving and receiving support.

These positive outcomes of peer support groups appear to be driven both by the level of social support provided in the group, and the quality of the organisational structure.

More broadly, the parental and paediatric benefits of parent-to-parent support – which includes peer support groups – have been demonstrated in numerous studies, including a number of large program evaluations and clinical trials. Overall, these studies suggest that parent-to-parent connection can positively affect the physical and emotional wellbeing of both parents and children.

Given that the MyTime Peer Support groups are delivered by skilled facilitators, it is worth also noting that the importance of the parent/professional alliance has been repeatedly demonstrated in a wide variety of studies. Qualities viewed as supportive to families within the parent/professional alliance include trust, respect, commitment, care, compassion, continuity and community, information sharing, recognition of the emotional impact on families, and collaboration and partnership.

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How effective has the MyTime Peer Support Program been in delivering its intended outcomes?

Findings from this evaluation suggest that, on the whole, the MyTime Peer Support Program has been very effective in delivering three of four intended outcomes:

Outcome 1:

Parents and carers who participate in MyTime Peer Support Groups develop relationships with other parents of children with disability or chronic medical condition.

There was a general consensus among program stakeholders and Facilitators and Play Helpers that this objective was being met. Most notably, 85% of Facilitators and Play Helpers – the participant group with the most direct contact with parents and carers – reported that the development of peer-to-peer support networks was a main benefit of the program. Direct quantitative and qualitative research with parents and carers provided further evidence that this objective is being met: 86% of survey respondents felt that the development of support networks was a key program benefit, and focus group and in-depth interview participants were in general agreement that they had received considerable assistance through the provision of peer support.

Outcome 2:

Parents and carers participating in the MyTime Peer Support Groups have an increased knowledge of caring for a child with disability or chronic medical condition.

In both the qualitative and quantitative research phases, parents and carers consistently indicated that their knowledge of caring for a child with a disability or chronic medical condition had increased as a result of interactions with other parents and carers (especially more experienced parents/carers) and with the group Facilitator. Increases in knowledge related to government services/programs/ payments were reported to be particularly pronounced. Evidence of knowledge increases via other parents and the Facilitator was also cited by Facilitators, Play Helpers and Coalition Coordinators. It should, however, be noted that whilst the provision of information via guest speakers was highly valued by parents and carers, there was wide variation in the frequency with which groups arranged for guest speakers to visit.

Outcome 3:

Parents and carers who participate in MyTime Peer Support Groups feel supported in their caring role.

It was strongly evident from both the qualitative and quantitative research phases that participation in groups enabled parents and carers to feel supported and indeed validated in their caring role. Many parents and carers reported that unlike ‘mainstream’ parents, parents and carers of children with special needs were able to understand the challenges they faced and support them to a much greater extent. Others acknowledged the high degree of support they had received from Facilitators.

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Facilitators, Play Helpers and Coalition Coordinators also considered that the program was effective in helping parents and carers to feel supported in their caring role.

Outcome 4:

Strong linkages exist between MyTime Peer Support Group participants and the broader community, including relevant partnerships, and appropriate networks.

The evaluation found moderate evidence that participation in MyTime was successful in fostering strong linkages between program participants and the broader community, including relevant partnerships and appropriate networks. Linkages observed to have been fostered through participation in groups were generally confined to early intervention and health services. In a small number of cases, parents and carers reported that participation had enabled them to establish linkages with community groups (such as Rotary).


One of the main objectives of the MyTime Peer Support Groups Program was to ensure that this service was open and accessible to parents and carers from all sectors of the community, including those in non-metropolitan areas. Consistent with this objective, there has been a substantial effort by program stakeholders to establish support groups in regional and remote areas. This has been met with some success, at least in regard to the quality of participant experience. Regional and remote parents who are attending these support groups reported having very similar positive experiences to metropolitan parents and carers. Importantly, both groups reported experiencing the same level of benefits from the program, indicating the quality of service delivery in the groups is similar across locations.

The challenge with service delivery in regional and remote areas, however, is often not the quality of services, but their accessibility. There have been notable achievements in making these groups accessible, such as the establishment of Indigenous groups in the Northern Territory. Such achievements have been facilitated by providing transport to parents and carers that might otherwise not be able to attend. Despite these efforts, Coalition Coordinators described the location and accessibility of services as excellent in metropolitan areas, reasonable in regional areas, and poor in remote areas, indicating that there is scope for improvement in making the groups more accessible.

Innovations that have been adopted by some groups to deal with these issues include: having a private Facebook group for participants who are unable to physically attend meetings (although this does not offer the respite benefits associated with the provision of Play Helpers in groups); and being flexible in meeting times to accommodate parents with limited time or transport options.

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Are there any unintended consequences of the MyTime Peer Support Program (positive or negative)?

Program stakeholders, Facilitators, Play Helpers and parents and carers were unable to identify any ways in which participation in the MyTime Peer Support Program had resulted in any unintended negative consequences for program participants. The general consensus was that consequences of participation in the program were strongly aligned with the program’s intended outcomes.

Play Helpers reported an important unintended program benefit for the children of the parents and carers who did not have a disability or chronic medical condition. For these children (often siblings), the opportunity to socialise and play with children similar to their sibling reportedly brought increased understanding of their sibling’s condition, and potentially greater acceptance of them.

What are the barriers to the success of the MyTime Peer Support Program?

The qualitative and quantitative research conducted with all stakeholder groups indicates that the fundamental concept and design of the peer support program is sound, and highly successful: by all reports, parents and carers have responded enthusiastically to the opportunity to have a peer support network, and have reported numerous benefits arising from group sessions. Also, providing Play Helpers during this time has allowed parents to get the most out of these groups, and to have respite from their caring duties.

The barriers to success in this program largely concern aspects of the implementation of the Program, particularly low average attendance rates at groups (among registered participants) and ensuring that all eligible parents and carers are aware of and have access to this valued service. The barriers to access that are specific to parents and carers located in regional and remote areas have been discussed above.

Coalition Coordinators also reported difficulties in recruiting and retaining Facilitators and Play Helpers. A lack of skilled and experienced Facilitators and Play Helpers is potentially a concern for the ongoing success of the program, as frequently parents and carers identified Facilitators as being a key success factor in the quality of their group support experience.

What benefits has the MyTime Peer Support provided to parents and carers?

In both the qualitative and quantitative research with parents and carers, Coalition Coordinators, and Facilitators and Play Helpers, there was a general consensus that the MyTime Peer Support Program was delivering its intended benefits for participants. Across all groups, the main program benefit was consistently identified as giving parents and carers the opportunity to meet and share experiences with other parents and carers, and this was also seen to facilitate the other program objectives. For example, parents and carers increased their knowledge of caring for a child with a disability or chronic medical condition through suggestions and recommendations from other group participants

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(as well as from guest speakers). Often, parents and carers informed each other about government and community services available, and met outside scheduled sessions, increasing their linkages with the community. All stakeholder groups reported that parents and carers also felt more supported in their caring role, by the government, and by each other. All parents and carers surveyed said either that they would recommend the group to others, or that they already had recommended it.

How can MyTime Peer Support be modified to better achieve its expected outcomes?

Program participants’ capacity to acquire new information and knowledge would be enhanced if the MyTime Peer Support Program were to develop and implement a core curriculum to ensure consistency of outcomes between groups.

In addition, a review of the current MyTime funding model to more accurately reflect costs associated with the delivery of groups according to their location and/or groups with additional needs would ensure greater congruency between allocated and actual expenditure of group funds.


There was evidence that differences in the implementation of MyTime groups affected outcomes among program participants. To a large extent, these variations stemmed from differences in the focus of the groups, including the degree to which the groups fostered structured and formal learning. As a consequence, this variation determined how program participants acquired information and knowledge.

These differences were apparent during the qualitative research with Coalition Coordinators, Facilitators, and Play Helpers, and parents and carers. Indeed, on occasions there appeared to be so little commonality across some groups in terms of activities that it gave the impression that some research participants were describing a different program. For example, some groups were almost wholly focused on pampering and relaxation, others on bringing guest speakers in to provide groups with specialist education, and others on outings to cafes for morning teas and lunches. Most groups however included a mixture of these types of activities but with a greater focus on one activity type.

Common to all groups were opportunities for participants to gain and provide peer support, and to acquire and share information and knowledge, although the transmission and nature of information differed according to the implementation of groups.

9.2 Recommendations

How can MyTime Peer Support be modified to better achieve its expected outcomes?

Findings from this evaluation point to several areas in which the MyTime Peer Support Program could be improved. Recommendations are listed below:

Promotion and marketing

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Provide Coalition Coordinators and Facilitators with guidance and resources to more effectively promote and market the program to potential participants and referral sources.

Rationale: Awareness of the program among eligible parents and carers and potential referrals sources (such as health professionals) was often reported to be low by both Coalition Coordinators and parents and carers. Several parents and carers commented that they would have benefited from joining the group at an earlier stage had they been aware that the group was available. Coalition Coordinators perceived that existing resources had a generic focus and they believed that tailored promotional materials would promote and attract participants to the program more effectively. Coalition Coordinators would benefit from guidance from the PRC around ways they can market the program to potential participants and referral sources.

Funding issues

Revise the funding model to better account for higher costs associated with implementing and sustaining groups in regional/remote locations compared to metropolitan locations. Options for a revised funding model include introducing a two- or three-tiered approach (with higher payments allocated to groups in regional and remote locations compared to metropolitan locations). Funding levels reflecting the actual costs associated with service development and delivery would need to be developed. Alternatively, a flexible funding model could be developed. Under this model, the PRC would specify the outputs for service delivery and ask CLAs to respond with their own pricing structures. CLAs could be asked to demonstrate how they would propose to deliver groups within a set budget, or they could be asked to quote on the cost to deliver a certain number of groups, or groups in a certain location. This approach would provide a means of assessing CLAs’ value-for-money, and could lead to cost-efficiencies associated with service delivery innovation.

Rationale: Coalition Coordinators reported that costs were higher when establishing and delivering groups in regional and remote locations due to challenges such as remote management of staff, travel times associated with selecting venues and Facilitator travel times to and from groups.

Revise the funding model to better account for higher costs associated with implementing and sustaining groups with CALD and Indigenous audiences. Options for a revised funding model could involve introducing a two- or three-tiered approach (with higher payments allocated to groups targeting CALD and Indigenous participants than other groups) or a flexible funding model could be developed, as outlined above.

Rationale: Coalition Coordinators advised that costs associated with running groups with CALD parents and carers are higher due to the need for interpreters (and need for interpreted materials) while groups for Indigenous parents and carers took longer to establish (due to cultural protocols and generally remote location).

Recruitment and retention strategies

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Conduct future research to explore whether specific employment-related factors in CLAs contribute to challenges in the recruitment of Facilitators and Play Helpers.

Rationale: Coalition Coordinators identified recruitment and retention of Facilitators and Play Helpers as a key program delivery challenge.

Foster retention of Facilitators and Play Helpers by ensuring they have regular access to PRC news, information about PRC professional development resources and access to ongoing professional development opportunities to maintain their level of skills and motivation.

Rationale: Awareness and usage of the range of PRC professional development resources appeared to be limited. Access to professional development opportunities varied according to the CLA under which Facilitators and Play Helpers were employed.

Promote increased attendance and retention of program participants through the formal sharing of better-practice case studies between CLAs and Facilitators and Play Helpers.

Rationale: Maintaining solid attendance levels at groups among program participants was one of the key program delivery challenges identified by Coalition Coordinators and Facilitators. There was evidence that Coalition Coordinators, Facilitators and Play Helpers valued informal opportunities to share information and learnings about their groups, including factors which have sustained participation in groups.

Consistency issues

Develop minimum content/curriculum standards to minimise a narrow range of activities in the implementation of groups, and to ensure that groups provide a broad range of learning opportunities for program participants.

Rationale: There was significant variation in the implementation of MyTime groups. Whilst most groups appeared to have achieved a balance in meeting parents’ and carers’ needs for information with their needs for respite, other groups were more firmly rooted either in the information/educational model or the ‘pampering’/playgroup/respite model.

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