what makes a successful peer-led aphasia support group?

This article was downloaded by: [Northeastern University]On: 06 November 2014, At: 14:09Publisher: RoutledgeInforma Ltd Registered in England and Wales Registered Number: 1072954Registered office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK

AphasiologyPublication details, including instructions for authors andsubscription information:http://www.tandfonline.com/loi/paph20

What makes a successful peer-ledaphasia support group?Shelley Tregea a & Kyla Brown aa Centre for Clinical Research Excellence in AphasiaRehabilitation and Communication Disability Centre , Schoolof Health and Rehabilitation Sciences, The University ofQueensland , Brisbane , Queensland , AustraliaPublished online: 28 May 2013.

To cite this article: Shelley Tregea & Kyla Brown (2013) What makes a successful peer-ledaphasia support group?, Aphasiology, 27:5, 581-598, DOI: 10.1080/02687038.2013.796506

To link to this article: http://dx.doi.org/10.1080/02687038.2013.796506

PLEASE SCROLL DOWN FOR ARTICLE

Taylor & Francis makes every effort to ensure the accuracy of all the information (the“Content”) contained in the publications on our platform. However, Taylor & Francis,our agents, and our licensors make no representations or warranties whatsoeveras to the accuracy, completeness, or suitability for any purpose of the Content. Anyopinions and views expressed in this publication are the opinions and views of theauthors, and are not the views of or endorsed by Taylor & Francis. The accuracyof the Content should not be relied upon and should be independently verifiedwith primary sources of information. Taylor and Francis shall not be liable for anylosses, actions, claims, proceedings, demands, costs, expenses, damages, and otherliabilities whatsoever or howsoever caused arising directly or indirectly in connectionwith, in relation to or arising out of the use of the Content.

This article may be used for research, teaching, and private study purposes. Anysubstantial or systematic reproduction, redistribution, reselling, loan, sub-licensing,systematic supply, or distribution in any form to anyone is expressly forbidden. Terms& Conditions of access and use can be found at http://www.tandfonline.com/page/terms-and-conditions

http://www.tandfonline.com/loi/paph20

http://www.tandfonline.com/action/showCitFormats?doi=10.1080/02687038.2013.796506

http://dx.doi.org/10.1080/02687038.2013.796506

http://www.tandfonline.com/page/terms-and-conditions

http://www.tandfonline.com/page/terms-and-conditions

Aphasiology, 2013Vol. 27, No. 5, 581–598, http://dx.doi.org/10.1080/02687038.2013.796506

What makes a successful peer-led aphasia support group?

Shelley Tregea and Kyla Brown

Centre for Clinical Research Excellence in Aphasia Rehabilitation andCommunication Disability Centre, School of Health and Rehabilitation Sciences,The University of Queensland, Brisbane, Queensland, Australia

Background: People with aphasia frequently report reduced social networks as well asa desire for increased social interaction. Individuals with aphasia and speech-languagepathologists have identified peer support as an important component of adjusting topost-stroke changes and learning to live successfully with aphasia. Peer-led aphasiasupport groups can provide greater, long-term access to peer support and social commu-nication opportunities for people with aphasia and their families. However, more researchis needed to facilitate their development and sustainability in local communities.Aims: The primary aim of this study was to identify the core components of a success-ful peer-led aphasia support group from the perspective of people with aphasia and theirfamily members. A second aim of the study was to explore the information and supportneeds of peer leaders in starting and running a group.Methods & Procedures: The qualitative research approach of focused ethnography wasused to understand and interpret the functioning of peer-led aphasia support groupsin the community. Twenty-six people, who were attending a peer-led aphasia supportgroup, participated in the study. Participants comprised 19 people with aphasia (meanage 64.8 ± 12.9) and seven family members (mean age 58.3 ± 9.0), including three peerleaders. Data were collected from the following sources: participant observation; focusgroup discussion; individual interview; and written artefacts. Thematic analysis of thefocus group and interview transcripts was conducted, while field notes and written arte-facts were used in triangulation of the identified themes.Outcomes & Results: The findings indicate that a number of themes are important forthe successful functioning of a peer-led aphasia support group, including friendship,informality, a supportive communication environment, providing support and practicalconsiderations for the timing and location of meetings. Factors that facilitated peer lead-ers to start and run groups included informational support, practical support, attractingnew members, time and organisation, and particular personal qualities.Conclusions: The findings confirm the positive and empowering nature of peer-led apha-sia support groups that provide opportunities for developing genuine friendships andauthentic communicative interactions in a supportive environment. Results of the studyprovide useful guidelines to assist people with aphasia in developing and sustainingpeer-led aphasia support groups in the community.

Keywords: Aphasia; Peer support; Peer-led; Groups; Qualitative; Focused ethnography.

Address correspondence to: Dr. Kyla Brown, Speech Pathology, School of Health & RehabilitationSciences, The University of Queensland, St Lucia, QLD 4072, Australia. E-mail: [email protected]

The authors would like to acknowledge the support of the National Stroke Foundation for an HonoursGrant provided to assist in this research. The authors would also like to thank the people with aphasia andtheir family members who generously participated in the study.

© 2013 Taylor & Francis

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

14:

09 0

6 N

ovem

ber

2014

mailto:[email protected]

582 TREGEA AND BROWN

Following the onset of communication disability after stroke, people with aphasiafrequently report reduced social networks as well as a desire for increased socialinteraction (Cruice, Worrall, & Hickson, 2006; Davidson, Howe, Worrall, Hickson,& Togher 2008; Hilari & Northcott, 2006; Vickers, 2010). The need for the greaterprovision of support services for people with aphasia at all stages of recovery, but par-ticularly after discharge from hospital, is well documented (Code et al., 2003; Goldfarb& Pietro, 2004; Grohn, Worrall, Simmons-Mackie, & Brown, 2012; Kong, 2011; Lawet al., 2010; National Stroke Foundation, 2010). Individuals with aphasia and speech-language pathologists have identified peer support as an important component oflearning to live successfully with aphasia (Brown, Worrall, Davidson, & Howe, 2010,2011; Pound, 2011). Peer support refers to the emotional, affirmational, practical andinformational support provided on the basis of shared personal experience (Morris &Morris, 2012).

SUPPORT GROUPS

Support groups provide a forum for accessing peer support and are typically facilitatedby a professional leader, with the aim of increasing the coping abilities of people whoshare a common experience (Rosenberg, 1984). Although there are support groups formany chronic health problems, use is often most widespread in people with conditionsthat are particularly stigmatising or socially isolating (Hogan, Linden, & Najarian,2002). The Royal College of Speech and Language Therapists Clinical Guidelinesrecognise the need for ongoing support for people with aphasia, and recommendthat speech-language pathologists provide information regarding support groups andopportunities for people with aphasia to meet with their peers (Royal College ofSpeech and Language Therapists, 2005).

Globally, there are many types of conversation, community and social aphasiagroups that fall under the umbrella term of “aphasia support groups”, where theyimprove the ability of members to “cope” with the impacts of aphasia by facilitatingcommunication, social interaction, participation and well-being (Sherratt & Hersh,2010). Non-profit organisations such as the National Aphasia Association (USA),Speakability (UK), and the Australian Aphasia Association (AAA) provide links tohelp people with aphasia and their families access such groups in the community.There are also similar groups based in community aphasia centres, such as Connect(UK), the Aphasia Institute (Canada) and the MossRehab Aphasia Centre (USA).

A number of studies have reported the benefits of such aphasia support groups thatare facilitated by speech-language pathologists, students or trained volunteers (Hersh,1998; Hoen, Thelander, & Worsley, 1997; Legg, Stott, Ellis, & Sellars, 2007; Morris& Morris, 2012; Shadden & Agan, 2004). These benefits reflect four key features of“living successfully with aphasia” identified in the literature, namely: establishing arenewed identity; developing and maintaining meaningful relationships; participationin society; and communication (both verbal and social) (Brown et al., 2010, 2011;Davidson, Worrall, & Hickson, 2008; Hinckley, 2006). Members of aphasia supportgroups help each other to make sense of, accept and embrace life with aphasia, aidingthe development of a new and empowered social identity (Code et al., 2003; Coles &Eales, 1999; Hersh, 1998; Legg et al., 2007; Shadden & Agan, 2004). Members feel asense of belonging, through mutual understanding and acknowledgement of sharedexperience, fostering the development of new friendships and social networks (Brownet al., 2010; Legg et al., 2007; Pound, 2011; Shadden & Agan, 2004). Aphasia support

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

14:

09 0

6 N

ovem

ber

2014

PEER-LED APHASIA SUPPORT GROUPS 583

groups also provide members with a sense of purpose and productivity, communityengagement, and the opportunity to help others (Code et al., 2003; Goldfarb & Pietro,2004; Legg et al., 2007; Pound, 2011), in addition to building confidence and strength-ening communication skills in a natural, social-interactional context (Goldfarb &Pietro, 2004; Hersh, 1998; Kong, 2011).

However, such groups necessitate the use of professional resources. Acknowledgingthe resource constraints within which speech-language pathologists must function(Code & Petheram, 2011), the capacity to facilitate aphasia support groups maybe increasingly limited. Furthermore, it has been recognised that the involvementof professional leaders in aphasia support groups may risk prolonging the role ofpeople with aphasia as passive recipients of care (Code et al., 2003; Coles & Eales,1999). Shadden and Agan (2004) recommend a speech-language pathologist’s involve-ment to facilitate the participation of members with more severe communicationdifficulties, but also stipulate that group facilitators must not perpetuate members’identities of communicative incompetence by assuming the role of expert leader.An alternative, peer-led model of support group delivery can provide access topeer support and may address some of the limitations of professionally led supportgroups.

Peer-led support groups

Peer-led support groups for people with aphasia are unique in that they are run bya person with aphasia or family member, with aims similar to professionally led sup-port groups such as providing social interaction and peer support. Studies in otherchronic conditions such as cancer have found a greater existence of peer-led supportgroups (72.1%) than professionally led support groups (27.9%) (Stevinson, Lydon, &Amir, 2010), and a greater preference for peer leaders than health professional lead-ers (Butow et al., 2007). This may be indicative of the two key benefits of peer-ledsupport groups for people with aphasia. First, by reducing the burden on profes-sional resources, peer-led support groups can provide greater, long-term access to peersupport and social communication opportunities for people with aphasia and theirfamilies (Coles & Eales, 1999). For example, Connect has successfully expanded therange and capacity of services available at aphasia centres in the UK by utilising peo-ple with aphasia as service providers as well as receivers (Pound, Duchan, Penman,Hewitt, & Parr, 2007). Second, there may be a greater sense of empowerment andshared ownership for members of peer-led support groups, as the reciprocal naturein which members both provide and receive support far exceeds the benefits of eitheralone (Coles and Eales, 1999; Pound, 2011; Pound et al., 2007).

Despite the potential for increasing access to peer support and enhancing psy-chosocial benefits, there is little research defining how peer-led aphasia support groupsfunction most effectively, or what the needs of peer leaders are in developing and sus-taining such groups. At Connect, people with aphasia receive training and ongoingsupport from speech-language pathologists and trained volunteers in order to co-facilitate conversation groups or support drop-in groups (Pound, 2011; Pound et al.,2007). Within Speakability, professionally qualified facilitators support the initialdevelopment of self-help groups for people with aphasia and can provide additionalassistance upon request from group members (Code et al., 2003). Speech-languagepathologists facilitate initial communication and provide practical support, such asassisting in opening a bank account and providing resources for promoting the group

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

14:

09 0

6 N

ovem

ber

2014


(Coles & Eales, 1999). However, the challenges faced by peer leaders without access tosources of organised professional support are currently unknown.

The present study aimed to identify the core components of a successful peer-ledaphasia support group, from the perspective of people with aphasia and their familymembers who were currently attending peer-led aphasia support groups. A second aimof the study was to investigate the information and support needs of peer-leaders.

METHODS

Research design

The qualitative research approach of focused ethnography was used to understandand interpret the successful functioning of peer-led aphasia support groups, from theperspective of people with aphasia and their family members. Focused ethnographyenables the exploration of specific or complex cultural issues with greater efficiencythan traditional forms of ethnography (Simmons-Mackie & Damico, 1999), drawingfrom a variety of data sources, including participant observation, artefact analysis,and interview (McElroy et al., 2011; Patton, 2002). In the present study, data were col-lected from participant observation, focus group discussion, individual interview, andwritten artefacts. The triangulation of multiple data sources allowed the researchersto explore the “insider’s” perspective of peer-led aphasia support group members, incombination with the more naturalistic forms of enquiry that were participant obser-vation and artefact analysis (Patton, 2002). Participant observations and individualinterviews were conducted by a final-year speech-language pathology student, whilefocus groups were facilitated by an experienced speech-language pathologist. Ethicalapproval was obtained from the Behavioural and Social Sciences Ethical ReviewCommittee at The University of Queensland.

Participants

Convenience sampling was used to recruit participants from four peer-led aphasia sup-port groups across South East Queensland. A total of 26 people, comprising 19 peoplewith aphasia (mean age 64.8 ± 12.9) and seven family members (mean age 58.3 ±9.0), who were attending a peer-led aphasia support group, participated in the study(see Figure 1). Similar to Parr (2007), it was inappropriate to request participants withaphasia to complete formal language assessment, and therefore self-reported diagnosisof aphasia was deemed sufficient for inclusion. Clinical judgements regarding aphasiatype and severity were based on informal observation of participants in conversation.Family members were mostly spouses of people with aphasia, but also included oneparticipant’s daughter.

There were 35 people in attendance at two peer-led aphasia support groups duringparticipant observations, 24 of whom gave consent to participate in the study. Twoadditional participants were not present during observations, but gave consent to beinvolved in a focus group discussion or interview. Informed consent included bothverbal and written explanations of the study. Written information adhered to aphasia-friendly text formatting principles outlined by Rose, Worrall, Hickson, and Hoffmann(2012). No observations were recorded about group members who did not consent tobe part of the study. Participants included three peer leaders (two people with apha-sia and one family member); one participated in a focus group discussion and two

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

14:

09 0

6 N

ovem

ber

2014


Peer-led aphasia group 1

Peer-led aphasiagroup 2



Participant observation 1

Participant observation 2

Focus group 1

Focus group 2

Interview 1

Interview 2

Figure 1. Participant involvement in the study.

participated in interviews. Tables 1 and 2 describe the breakdown of the numbers ofparticipants included in each data collection method.

Each of the four participating peer-led aphasia support groups met once per monthfor a duration of 2 hours. Reported attendance ranged from four to 28 members acrossthe groups.

Procedure

Participant observations

Two peer-led aphasia support groups were observed on one occasion each, for theduration of their meeting (approximately 2 hours). The observations took place at thelocal cafés which served as the usual meeting location of each group. Observationswere discovery-oriented and exploratory, framed by the following reference points:setting (physical and social environment); activities; participants; communication;and meaning (Patton, 2002). The researcher made descriptive field notes, separatelyrecording interpretational and personal notes in order to enhance objectivity andreflexivity (Parr, 2007). Due to the nature of participant interactions, the researcherfrequently became involved in conversations with participants. Both observation andparticipation are appropriate strategies for data collection in fieldwork and may eluci-date different kinds of information (Patton, 2002). The researcher’s interactions withparticipants were also recorded as separate field notes.

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

14:

09 0

6 N

ovem

ber

2014


TABLE 1Characteristics of participants with aphasia

Field observations Focus groups Interviews(n = 18)a (n = 7)b (n = 1)b

GenderMale 10 6 −Female 8 1 1Age (range 44–93 years, mean ± SD = 64.8 ± 12.9)≤60 years 8 2 1>60 years 10 5 −Time post-onset of aphasia (range 0.6–11.8 years, mean ± SD = 4.8 ± 3.5)0–≤2 years 6 2 −>2–≤5 years 5 − −>5 years 7 5 1Aphasia typeNon-fluent 7 1 −Fluent 11 6 1Aphasia severityMild 7 5 1Moderate 6 2 −Severe 5 − −Length of support group membership0–≤2 years 13 3 −>2–≤5 years 3 3 −>5 years 2 1 1Living situationLiving alone 4 1 −Living with spouse/family 13 6 1Living in residential facility 1 − −Number of aphasia support groups currently attendingAttending one group 12 4 1Attending more than one group 6 3 −aIncludes two peer leaders.bIncludes one peer leader.

Focus groups

Ten individuals, based on their availability and interest in the study, also partici-pated in one of the two focus group discussions about the functioning of their peer-ledaphasia support group. Each focus group comprised members primarily of a singlepeer-led aphasia support group, which served not only to facilitate discussion throughshared experiences of the phenomenon under investigation (Kerr, Hilari, & Litosseliti,2010), but also provided insight into styles of interaction between members, creatinga more “natural” source of data (Kitzinger, 1994). Focus groups had five participantsper group, and included seven people with aphasia and three family members acrossthe two groups. Family members were involved principally as informants, but alsoprovided communicative assistance to their partners with aphasia as needed.

The focus groups followed a semi-structured format, with open-ended questionsbased on a topic guide for discussion that included: how the group normally runs;what makes a successful group; what participants like about the group, and what theywould like to change; and the logistics of starting and running a similar group. Basedon the recommendations made by Luck and Rose (2007), the facilitator summarised

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

14:

09 0

6 N

ovem

ber

2014


TABLE 2Characteristics of family member participants

Field observations Focus groups Interviews(n = 6) (n = 3) (n = 1)a

GenderMale 2 1 −Female 4 2 1Age (range 47–71 years, mean ± SD = 50.8 ± 9.1)≤60 years 3 1 1>60 years 3 2 −Length of support group membership0–2 years 4 1 12–5 years 1 1 −5+ years 1 1 −Number of aphasia support groups currently attendingAttending one group 3 − 1Attending more than one group 3 3 −aIncludes one peer leader.

participants’ statements throughout the focus groups in order to verify meaning andprovide opportunities for participants to add to or revise responses. Some participantswere also known to the facilitator through previous research.

Focus groups were conducted in a quiet environment, one at The University ofQueensland and the other in a participant’s home, for a maximum duration of2 hours. Focus groups were audio and video recorded to enable verbatim transcription,including transcription of nonverbal communication attempts, such as gesture. Thefacilitating speech-language pathologist also provided verbal clarification when ges-tures were used in place of a verbal utterance.

Semi-structured interviews

Individual interviews were held with two peer leaders, both female; one personwith mild aphasia (44 years of age, 11.8 years post-onset) and one spouse of a per-son with moderate-severe aphasia (51 years of age, 2.2 years post-onset of spouse’saphasia). The interviews were conducted in a similar format to the focus groups,with open-ended questioning and frequent verification of the responses. One inter-view was conducted at the participant’s home and the other was conducted over thephone. Both interviews were audio recorded and transcribed verbatim. Interview top-ics included: how the group was started; the role of the group leader; barriers andfacilitators to leading the group; qualities of a successful leader; and what it meant tobe a group leader. Relevant questions posed to the focus groups were also discussedduring interviews.

Written artefacts

As in Parr (2007), written documents were collected throughout the study to con-tribute to a richer understanding of the topic under investigation. Documents suchas information pamphlets and email communications between group leaders andmembers were requested from peer leaders after interview. A total of eight documentswere collected, representing three of the participating groups.

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

14:

09 0

6 N

ovem

ber

2014


Data analysis

Qualitative thematic analysis was performed using the approach outlined by Braunand Clarke (2006). Focus group and interview transcripts became the primary datasource for thematic analysis, with field notes and written artefacts used to verifyand create fuller descriptions of the identified themes (Simmons-Mackie et al., 2007).Data analysis began with familiarisation of transcripts, and generation of initial codesthrough systematic identification of explicit meanings within the data. Codes wereorganised semantically before the identification and labelling of potential themes.Each transcript was reviewed for verification of coding before subsequent transcriptsunderwent the same process. Codes from successive transcripts were added to exist-ing themes, allowing the themes to be further refined or new themes to be generated.Analysis was an iterative process, moving back and forth throughout the multiple datasources (Braun & Clarke, 2006). Field notes and written artefacts were frequentlyreviewed and transcripts re-read to ensure the identified themes were accuratelyreflected in the data. In addition to cross-checking themes within the data sources,rigour was achieved by a process of “peer-debriefing”, in which the themes and thesupporting data were reviewed with the second author for further verification.

RESULTS

Research question 1: What are the core components of a successfulpeer-led aphasia support group?

Thematic analysis across the four data sources (field notes, artefacts, and focus groupand interview transcripts) revealed five themes related to the success of peer-led apha-sia support groups: friendship; informality; a supportive communication environment;providing support; and practical considerations for meeting timing and location.In keeping with the terminology used by participants, peer-led aphasia support groupswill be referred to simply as “groups” throughout this section. Quotations from par-ticipants with aphasia are labelled as “PWA” and quotations from carers as “carer”.

Friendship: “I think that’s 99% of a successful group. It’s thefriendships.” (PWA)

A clear theme of friendship resonated throughout the data sources as central tothe success of a group. Participants described the instant bonds, feelings of belongingand close friendships that were formed on the basis of shared experience and mutualunderstanding: “You become friends for life. . . They’re a deeper kind of friendship. . . Everyone’s been through the same problems.” (PWA)

Meeting new people and sharing life experiences were identified as important andpositive aspects of the group. Participants described enjoying social interactions withinthe group, where members could talk about “anything and everything”: “Just normal,just chitchat” (PWA); “Not about anybody’s problem.” (PWA) During field obser-vations, the researcher noted the highly social nature of both groups, with humourevident throughout many of the exchanges between group members:

Group members joked amongst themselves that the blueberry muffin someone had orderedlooked suspiciously mouldy. This led to one member telling a story about how they hadaccidentally cooked and eaten food that was indeed mouldy! [Field notes, Group 1]

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

14:

09 0

6 N

ovem

ber

2014


For many participants, friendships formed through the group extended beyondgroup meetings to other social events. Occasionally, some groups also held barbequesor picnics, and celebrated special events at their group meeting.

Participants also valued the opportunity to form friendships with a diverse groupof people: “Just meeting people. . . It’s a different sort of group from what I’ve beenused to” (PWA). Initial impressions of the variety of people in attendance at one groupwere interpreted by the researcher during field observations:

The group meeting presented much like a large family gathering, with a wide range of agesand individuals. Members greeted each other with close familiarity, some embraced like oldfriends while others laughed and chatted away. [Field notes, Group 2]

Informality: “We’re just a group of people here to have coffee andchat and muck up.” (PWA)

Participants emphasised that the key to a successful group was informality. Thegroups maintained a sense of casualness, where there was no obligation for members toattend, nor pressure to communicate: “If you don’t want to go, you don’t have to go”(Carer); “Just sit there. Listen, and enjoy the company.” (PWA) Participants stressedthat there was no formal agenda or set structure for group meetings: “Keeping themopen and friendly not structured” (PWA); “It’s all very free and easy. . . People cancome and go as they like.” (Carer) Importantly, the open format enabled more naturalcommunication between members: “People get up and move around and talk” (PWA);“The conversation rolls where it’s not focused on anything.” (Carer) The researcheralso observed how the informal nature of the groups promoted genuine conversationamongst members:

There was no official start time, and introductions were made informally as people arrived.Once most people were present, the group leader briefly introduced new members to thegroup as a whole; members were then left to continue chatting to those around them. Mostexchanges occurred in small groups of 3 to 4 people, with some one-on-one interactions.Conversation groups evolved as some members moved throughout the wider group. [Fieldnotes, Group 2]

Although some members still attended individual speech therapy, participantscontrasted the relaxed nature of the groups with the controlled environments of pro-fessionally run groups. As one peer leader with aphasia remarked, “They didn’t wantthat structure; they wanted somewhere to relax and have a coffee”.

The informality of the groups was also evident in the terminology used by partic-ipants when describing their group to the researcher, in promotional material, and ingroup emails. For example, participants did not refer to their groups as a “supportgroup” or “meeting”, but instead used “coffee group”, “morning tea”, “social andfriendship group”, or “social club”. A flyer developed by one peer leader advertisedthe group as “A group of friendly, caring people meeting for a chat over coffee andsome good food,” while an extract from another peer leader’s email simply stated,“Next Thursday is morning tea at 10 am.”

A supportive communication environment: “People take the timeto listen.” (PWA)

A third theme and fundamental feature of the groups was that mutual support andunderstanding fostered communication between members. Participants commented

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

14:

09 0

6 N

ovem

ber

2014


that group members inherently understood the value of communication and the needfor patience. As one participant with aphasia described, “That is. . . the essence of anaphasia group. You let people talk” (PWA). The mutual understanding of communi-cation difficulties provided the basis for more supportive interactions, where membersaided and encouraged each other to talk. The researcher observed how group membershelped each other to communicate:

One man with aphasia experienced significant difficulty communicating his order to thewaitress. Several surrounding group members with aphasia attempted to assist by suggestingvarious food and drink orders for him to confirm or deny. Eventually, the man with aphasiawas able to indicate his preference using the café menu. [Field Notes, Group 1]

Importantly, communicating in the supportive environment of the group was seento build members’ confidence in communication. One peer leader remarked on thechange observed in a young female member with aphasia: “She has gone from thisperson who said nothing to this one who doesn’t shut up.” (PWA) Other participantsdescribed feeling more comfortable when speaking in the accepting environment ofthe group, where members understood what it’s like to communicate with aphasia: “IfI stuff up it doesn’t matter.” (PWA)

Some participants acknowledged the value of the group particularly for peoplewith more severe communication impairments, and that they could still have posi-tive social interactions despite difficulties in verbal communication: “It doesn’t matterif you can’t, um, talk properly or anything like that or – we still relate to each other”(PWA); “He can’t speak. . . But he and I get on like a house on fire too. You know inour other funny form of communications.” (PWA)

For some participants, the group provided a regular form of contact through whichto maintain or to improve their speech: “[If] I don’t talk to anybody. . . my speechgoes” (PWA); “It’s good to sit down and you talk to people.” (PWA) Group membersalso provided a supportive communication environment by encouraging and celebrat-ing the achievements of other group members, demonstrating how the whole groupcould share in a member’s success: “That man has improved out of sight” (PWA);“Everybody just feels over the moon for him.” (PWA)

Participants also explained how being with other people with aphasia enabled themto take on greater responsibility in communicative interactions. In two of the fourparticipating groups, people with aphasia were intentionally seated together in orderto promote communication: “[It] makes us communicate” (PWA); “There’s a lot ofpeople. . . [that] get their carer, partner, or whatever to answer for them, or they’lldo it automatically. And this way, they’re [people with aphasia are] talking.” (PWA)Although the separation of people with aphasia and their family members was initiallyinstigated by group leaders, it had become routine in one particular group:

Both spouses sat together at one end of the table conversing with each other, away from theirrespective partners with aphasia. Towards the end of the meeting, one spouse made her wayaround the table, chatting briefly with each of the group members. [Field notes, Group 1]

Providing support: “The group. . . is able to reach out to everybody– a huge range of people.” (Carer)

Reaching out to people with aphasia and their families was viewed as an importantfunction of the groups. One participant stated: “So that people are finding that . . .

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

14:

09 0

6 N

ovem

ber

2014


when they’ve had the stroke, they’ve got aphasia, they’re not just alone. There is some-where they can actually go.” (Carer) Providing a support base for people with aphasiawas particularly motivating for some participants, having encountered little informa-tion and support at the time of their stroke: “Since I had me [my] stroke and I probablywent – probably two and a half to three years before I even talked to anyone aboutaphasia” (PWA); “You’re dismissed from the hospital, you sit there and you go, whatnow?” (Carer)

Providing group members with resources and information about aphasia eventswas viewed as important: “I say, well this is – this is happening. . . I want to make sureeverybody knows about it [aphasia conference]” (PWA); “Giving out information topeople. . . getting resources to people.” (Carer) Many participants also discussed theirinvolvement in advocating for aphasia awareness through activities external to thegroup: “I want people to be aware of it. . . I want to go out and talk to people aboutthe aphasia.” (PWA)

The value of the group for family members of people with aphasia was also high-lighted. The benefits of group attendance for people with aphasia, such as friendshipand mutual support, were also afforded to family members: “Also gives the carers . . .

a break and a chance to have a whinge about us” (PWA); “Having someone else tochat with who’s in a similar situation, and you get tips from each other.” (Carer) Theresearcher observed a range of different conversations and functions that the groupprovided for family members:

Some conversations between family members involved providing advice for hospital appoint-ments, such as sharing information about parking and transport. There was little specificmention of aphasia or any associated difficulties. Other family members were mingling andchatting with a purely social-interactional purpose in small groups of family members andpeople with aphasia. [Field notes, Group 2]

The right time and place

Practical considerations and meeting logistics were identified as integral to the suc-cess of groups. Participants discussed meeting at a consistent day and time that waseasy to remember: “The second Wednesday of the month at 10 o’clock.” (Carer) Theimportance of meeting in a practical and accessible location was also highlighted:“Having a good place to do it” (PWA); “We’ve basically gone around different cafés[to find a suitable location].” (Carer)

Three of the participating groups met in a café, often located close to a shop-ping centre, while one group met in the Botanical gardens within their community.Participants discussed the following features of an ideal meeting location, which werealso documented by the researcher during participant observations:

� Close to home: “In your area.” (PWA)� Accessibility—including ample parking, public transport options, and wheelchair

access: “[Not] too busy for parking” (Carer); “The transport situation is fantas-tic . . . with the trains.” (Carer)

� Facilities—including adequate seating, covered or closed-in areas, and disabledtoilets nearby: “The toilets have been miles away.” (Carer)

� Capacity—including room for growth: “Lots of space” (Carer); “Plenty of chairs.”(PWA)

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

14:

09 0

6 N

ovem

ber

2014


� Quiet environment: “It was quiet. . . there weren’t many people . . . we could gothere and. . . we wouldn’t be disturbed.” (PWA)

� No or low cost: “Not costing anything. . . It’s going to cost you to pay for tea,coffee” (PWA); “They bring a plate to share; there’s tea and coffee facilities.”(Carer)

� Friendly, accommodating staff: “They’re lovely—they take their time and theylisten.” (Carer)

Research question 2: What are the information and support needs ofgroup leaders?

Both leaders and group members perceived the role of peer leaders in aphasia groupswas more that of a co-ordinator or facilitator: “It’s the consensus of the people, notanyone saying, ‘right well this is going to be how it’s done’” (PWA); “It’s very muchgetting everybody’s ideas about what they want to do.” (Carer) One peer leader did notreadily identify as the group “leader”, while one long-standing group no longer hada designated leader. Consequently, peer leaders recognised more subtle informationand support needs. The factors identified as facilitating peer leaders to start and rungroups included informational support, practical support, attracting new members,time and organisation, as well as particular personal qualities.

Informational support

Peer leaders received guidance from speech-language pathologists, members ofexisting aphasia groups, and the AAA, a national support organisation for peoplewith aphasia and their families, in setting up their group and finding a suitable meet-ing location: “I had a chat with them to see what they did. . . and how they set it upand everything.” (Carer)

All three peer leaders were the previous or current members of an aphasia or strokesupport group prior to starting their own group. One peer leader started a new groupin her area after it was suggested to her by a speech-language pathologist at an aphasiaconference. The other two peer leaders identified a need to start one in their areas,after having contact with other people with aphasia at a stroke group, another peer-ledaphasia group, and the AAA.

Practical support

Peer leaders reported receiving initial practical support from others when startingup the group, such as assistance in creating advertisements for the group: “I was abit flustered – I was – can you do it for me ‘cause I’d – I’d probably stuff it up butanyway, [he did it a] lot better.” (PWA) Ongoing practical support from family mem-bers or speech-language pathologists was also identified as important in providingorganisational assistance (arranging the meeting location and contacting members)or relief from duties: “She will help out as well, she’ll make telephone calls” (Carer);“It’s mainly, um, if I’m going on holidays. . . to send them the email.” (PWA)

Attracting new members

Participants discussed the importance of promoting their group to local strokegroups and health professionals, particularly speech-language pathologists, but also

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

14:

09 0

6 N

ovem

ber

2014


general practitioners, physiotherapists, occupational therapists, social workers andleisure therapists, who could refer new members: “I, ah, printed them out and I wentaround to doctors’ surgeries and that” (PWA). “Word of mouth” and advertising inlocal newspapers or on community notice boards were also common methods forincreasing awareness of new groups and attracting members; “The hardest thing toget people to come along is because they don’t know—it’s awareness.” (PWA)

The AAA was recognised as an invaluable resource for identifying and contactingpotential members, as well as advertising groups: “Getting the [AAA] members in thearea to start with” (PWA); “People have been contacting AAA, how to get in touchwith such and such a group. It’s also on the website now.” (PWA)

Time and organisation

Peer leaders were responsible for organising group meetings, which involved con-tacting members via phone or email one week in advance to remind them about themeeting and confirm the location, as well as contacting the café to arrange a book-ing: “There’s either going to be 10 people or there’s going to be 30 - which makes adifference to who they put on staff wise.” (Carer)

In addition to organising and promoting the group, peer leaders served as a pointof contact for both new and existing members: “They [new members] ring up orthey email me or something or speech pathologists will ring me” (Carer); “She [onemember] rings me all the time. . . so I just, you know, I sit down and chat.” (PWA)

Personal qualities

Peer leaders did not identify training requirements per se, however discussed per-sonal qualities such as having the confidence and motivation to interact and negotiatewith people in the community, as well as being warm and friendly, organised, and flex-ible: “You’ve got to be a people person and I think you’ve got to be a warm person. .. not necessarily outgoing.” (Carer)

Peer leaders also commented on their role in facilitating equal inclusion of membersduring meetings: “I’ve always tried to mingle in between so – and so everybody’s not[nobody’s] left out” (PWA); “You’ve got to try and get that balance [so] that everybodyhas input. . . be a bit diplomatic at times.” (Carer)

DISCUSSION

The primary aim of this research was to identify the core components of a success-ful peer-led aphasia support group, from the perspective of people with aphasia andtheir family members who currently attend peer-led aphasia support groups in thecommunity. A second aim was to explore the information and support needs of peerleaders. The findings indicate that a number of themes are important for the success-ful functioning of peer-led aphasia support groups, including friendship, informality,a supportive communication environment, providing support and practical consider-ations for the timing and location of meetings. Factors that facilitated peer leadersto start and run groups included informational support, practical support, attractingnew members, time and organisation, as well as particular personal qualities.

Results of the current study confirmed the previous findings that aphasia supportgroups play an important role in developing genuine friendships and feeling under-stood (Legg et al., 2007; Pound et al., 2007). In this way, peer-led support groups

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

14:

09 0

6 N

ovem

ber

2014


can help people with aphasia to adjust to loss of friendships and address the needfor increased social contact (Brown, Davidson, Worrall, & Howe, 2013; Cruice et al.,2006). The positive, social-interactive nature of the groups was emphasised by partici-pants in this study. While group members provided each other with peer support in thetraditional sense, the predominance of positivity and humour was also evident, consis-tent with the previous studies in aphasia that document the value of humour in socialinteractions and the importance of staying positive (Brown et al., 2010; Davidsonet al., 2008).

Informality was also identified as a key feature of successful peer-led aphasia sup-port groups, as it preserved a natural environment where members could interactfreely. Shadden and Agan (2004) argue that a more formal structure can impose onthe natural development of social processes, while people with aphasia have previouslyreported that peer-led groups enable more natural conversation (Pound et al., 2007).Participants in the present study also echoed the sense of liberation felt by a personwith aphasia attending a peer-led group, described in contrast to professionally ledgroups (Lindsay, Penman, & Pound, 2000 in Pound et al., 2007). In a study by Hoenet al. (1997) that sought feedback from people with aphasia about their experiencesof a group communication programme, participants identified the value of going to aplace where people genuinely wanted to talk to them. By providing opportunities toparticipate in natural and genuine social interactions, peer-led aphasia support groupscan address the goals of a social approach that aim to increase successful participationin authentic communicative contexts at the level of conversation (Simmons-Mackie,1998).

In the present study, mutual understanding of communication difficulties providedthe basis for more supportive interactions, where members inherently knew to giveeach other time to communicate, as well as aiding and encouraging each other tospeak. This has also been identified as a benefit in social aphasia and support groupsinvolving trained volunteers and speech-language pathologists (Hersh, 1998; Hoenet al., 1997). The additional time and patience provided by peer leaders with aphasiahas also been identified as a specific benefit of peer-led groups (Pound et al., 2007).

As a result of the unique understanding and acceptance of communication dif-ficulties from shared personal experience, participants in the present study reportedfeeling more comfortable speaking within the peer-led aphasia support group setting,than amongst those without knowledge of or experience with aphasia. Participantsalso explained how communicating with other people with aphasia, motivated them totake on greater responsibility in communicative interactions. This demonstrates howadditional goals of social approaches, such as increasing communicative confidenceand empowering speakers with aphasia (Simmons-Mackie, 1998), can be met throughpeer-led support group participation. Similar gains in confidence and self-esteem havebeen reported in volunteer-facilitated aphasia support groups (Hersh, 1998).

Within the aphasia support group literature, opinions vary regarding the inclu-sion of family members of people with aphasia (Coles & Eales, 1999). “Speaking for”behaviours have been observed by spouses of people with aphasia, and are associ-ated with reduced participation in an interaction by the person with aphasia (Croteau& Le Dorze, 2006). This was raised as a concern by some participants with apha-sia, and managed in two of the groups by ensuring people with aphasia were seatedtogether. Similarly, Goldfarb and Pietro (2004) reported an increase in the controlof group discussions by people with aphasia, once family members were moved intoa separate group. Although advocates for the inclusion of family members, Shadden

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

14:

09 0

6 N

ovem

ber

2014


and Agan (2004) suggest the use of group rules that stipulate people with aphasiaspeak first, helping to ensure that conversations are not dominated by family mem-bers. The argument to maintain open membership is underpinned by the fact that theimpact of aphasia is felt by the whole family, and thus they too should be affordedthe opportunity to renegotiate positive social identities alongside their family memberwith aphasia (Kong, 2011; Shadden & Agan, 2004). In the present study, both peo-ple with aphasia and family members identified the value of peer support for familymembers.

Providing a support base for people with aphasia in the community was anotherprominent theme identified in the current study, by group members and peer lead-ers alike. The positive and valued function of the group in reaching out to peoplewith aphasia and their families might be an important indication of the increasedsense of empowerment and self-efficacy that peer-led aphasia support groups can pro-vide (Code et al., 2003; Pound, 2011). Other studies of peer support for people withstroke and aphasia have reported similar findings, such as feeling a sense of purposeand achievement (Legg et al., 2007), and feeling rewarded by the opportunity to helpothers, associated with increased feelings of self-worth (Morris & Morris, 2012).

Due to the informal nature of the peer-led aphasia support groups in the presentstudy, peer leaders were able to maintain the role of group organiser, and as such,identified little need for training. Although peer-led aphasia groups that are based inaphasia centres provide training for peer leaders (Pound, 2011), studies of supportgroups in other populations have shown that peer leaders identify a need for trainingless often than professional leaders (Stevinson et al., 2010). In the present study, peerleaders gained informational and practical support from members of both existingand new aphasia groups as well as speech-language pathologists and members of theAAA, in order to start new groups. Issues affecting the development of new peer-ledaphasia support groups are often practical in nature, such as finding a suitable meetinglocation, arranging transport and publicising the group, which generally necessitateclinician involvement for up to 1 year (Code et al., 2003; Coles & Eales, 1999). Peerleaders in the current study also identified the need for ongoing practical support fromfamily members or speech-language pathologists.

Finally, participants identified the importance of the meeting location. The partic-ipating peer-led aphasia support groups mostly met in a café, which minimised costsand maintained a sense of naturalness and informality. Code et al. (2003) observedthat self-help aphasia groups tend to meet outside health service premises, such asin community halls, schools and members’ homes or local pubs. A community-based location further creates positive group and social identities, in contrast to thedis-empowered patient roles associated with hospital or rehabilitation-based settings(Hoen et al., 1997; Simmons-Mackie, 1998).

Clinical implications

Findings from this study identify the key features of successful peer-led aphasiasupport groups, and demonstrate their potential to extend services to people withaphasia and their family members seeking access to supportive social and con-versational opportunities. The results highlight the importance of maintaining aninformal structure, allowing for the mutual understanding of aphasia to enable sup-portive communication, positive social experiences and the development of genuinefriendships.

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

14:

09 0

6 N

ovem

ber

2014


The information and support needs of peer leaders identified in this study mightprovide useful guidelines to assist people with aphasia to start new peer-led supportgroups. For example, new leaders may benefit from using the practical considerationsto guide decisions regarding meeting locations and group promotion. One way to facil-itate this would be for an aphasia-friendly version of the findings to be made availablein an online format. New peer leaders may also benefit from attending an existingpeer-led aphasia group or talking to members of an existing peer-led aphasia groupfor additional informational support and encouragement. The findings also suggestthat speech pathologists might play a role in providing ongoing practical support topeer leaders and as a referral source for new members.

Future research

While this study has provided evidence of a range of themes contributing to the suc-cessful functioning of peer-led aphasia support groups, further research is required toextend these findings. A limitation of the current study was that it included only asmall number of local peer-led aphasia support groups obtained via convenience sam-pling, therefore the results obtained may not be reflective of peer-led aphasia groupsmore generally. Furthermore, the self-selected focus group participants all had mild tomoderate communication difficulties. Although people with more severe communica-tion difficulties were included in participant observations, further research is neededto investigate whether they perceive similar levels of psychosocial and communicativebenefits. Future studies may also expand on the current methodology by obtaininga greater number of written artefacts for triangulation and by employing memberchecking of results to enhance rigour.

A wider scale study investigating the challenges and benefits associated withdifferent types of aphasia support groups (including peer-led, volunteer-led and pro-fessionally led groups), from the perspective of both members and leaders, is needed.For the value of peer-led aphasia support groups to be better recognised in thewider professional community, quantitative measures that substantiate the benefits forpeople with aphasia, such as changes in communication confidence, communicativeeffectiveness and social network size, should be considered. More general measuresof perceived social support and coping might also be useful to capture the benefitsfor both people with aphasia and their family members. Additionally, it is importantto define the resources required to start and run different types of aphasia supportgroups, to enable more accurate comparison of the cost-effectiveness of each.

CONCLUSION

The present study identified themes that people with aphasia and their family mem-bers perceived to influence the success of peer-led aphasia support groups. Findingsconfirm the positive and empowering nature of peer support for people with aphasia,as well as the importance of developing genuine friendships and having the opportu-nity for authentic communicative interactions in an accepting environment. Peer-ledaphasia support groups, requiring few professional resources, provide an accessibleand sustainable service delivery option for supporting people with aphasia and theirfamilies to live more successfully, at all stages of recovery. Speech-language patholo-gists can play an important role in facilitating the community reintegration of peoplewith aphasia, by providing information about the benefits of peer-led aphasia support

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

14:

09 0

6 N

ovem

ber

2014


groups, as well as assisting people with aphasia to development and sustain morepeer-led aphasia support groups in the community.

Manuscript received 8 January 2013Manuscript accepted 13 April 2013First published online 26 May 2013

REFERENCESBraun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology,

3, 77–101.Brown, K., Davidson, B., Worrall, L., & Howe, T. (2013). “Making a good time”: The role of friendship

in living successfully with aphasia. International Journal of Speech-Language Pathology, 15(2), 165–175.doi:10.3109/17549507.2012.692814

Brown, K., Worrall, L., Davidson, B., & Howe, T. (2010). Snapshots of success: An insider perspective onliving successfully with aphasia. Aphasiology, 24(10), 1267–1295. doi:10.1080/02687031003755429

Brown, K., Worrall, L., Davidson, B., & Howe, T. (2011). Exploring speech-language pathologists’ per-spectives about living successfully with aphasia. International Journal of Language & CommunicationDisorders, 46(3), 300–311. doi:10.3109/13682822.2010.496762

Butow, P. N., Kirsten, L. T., Ussher, J. M., Wain, G. V., Sandoval, M., Hobbs, K. M., . . . Stenlake, A.(2007). What is the ideal support group? Views of Australian people with cancer and their carers. Psycho-Oncology, 16, 1039–1045. doi:10.1002/pon.1172

Code, C., Eales, C., Pearl, G., Conan, M., Cowin, K., & Hickin, J. (2003). Supported self-help groups foraphasic people: Development and research. In I. Papathanasiou & R. De Bleser (Eds.), The sciences ofaphasia: From therapy to theory (pp. 188–200). Boston, MA: Pergamon.

Code, C., & Petheram, B. (2011). Delivering for aphasia. International Journal of Speech-LanguagePathology, 13(1), 3–10. doi:10.3109/17549507.2010.520090

Coles, R., & Eales, C. (1999). The aphasia self-help movement in Britain: A challenge and an opportu-nity. In R. J. Elman (Ed.), Group treatment of neurogenic communication disorders: The expert clinician’sapproach (pp. 107–114). Boston, MA: Butterworth-Heinemann.

Croteau, C., & Le Dorze, G. (2006). Overprotection, “speaking for”, and conversational participation: Astudy of couples with aphasia. Aphasiology, 20(02–04), 327–336. doi:10.1080/02687030500475051

Cruice, M., Worrall, L., & Hickson, L. (2006). Quantifying aphasic people’s social lives in the context ofnon-aphasic peers. Aphasiology, 20(12), 1210–1225. doi:10.1080/02687030600790136

Davidson, B., Howe, T., Worrall, L., Hickson, L., & Togher, L. (2008). Social participation for older peoplewith aphasia: The impact of communication disability on friendships. Topics in Stroke Rehabilitation,15(4), 325–340.

Davidson, B., Worrall, L., & Hickson, L. (2008). Exploring the interactional dimension of social com-munication: A collective case study of older people with aphasia. Aphasiology, 22(3), 235–257.doi:10.1080/02687030701268024

Goldfarb, R., & Pietro, M. J. S. (2004). Support systems: Older adults with neurogenic communicationdisorders. Journal of Ambulatory Care Management, 24(4), 356–365.

Grohn, B., Worrall, L. E., Simmons-Mackie, N., & Brown, K. (2012). The first 3-months post-stroke: Whatfacilitates successfully living with aphasia? International Journal of Speech-Language Pathology, 14(4),390–400.

Hersh, D. (1998). Beyond the “plateau”: Discharge dilemmas in chronic aphasia. Aphasiology, 12(3),207–218.

Hilari, K., & Northcott, S. (2006). Social support in people with chronic aphasia. Aphasiology, 20(1), 17–36.doi:10.1080/02687030500279982

Hinckley, J. J. (2006). Finding messages in bottles: Living successfully with stroke and aphasia. Topics inStroke Rehabilitation, 13(1), 25.

Hoen, B., Thelander, M., & Worsley, J. (1997). Improvement in psychological well-being of people withaphasia and their families: Evaluation of a community-based programme. Aphasiology, 11(7), 681–691.

Hogan, B. E., Linden, W., & Najarian, B. (2002). Social support interventions—Do they work? ClinicalPsychology Review, 22, 381–440.

Kerr, J., Hilari, K., & Litosseliti, L. (2010). Information needs after stroke: What to include and how tostructure it on a website. A qualitative study using focus groups and card sorting. Aphasiology, 24(10),1170–1196. doi:10.1080/02687030903383738

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

14:

09 0

6 N

ovem

ber

2014


Kitzinger, J. (1994). The methodology of focus groups: The importance of interactions between researchparticipants. Sociology of Health and Illness, 16, 103–121.

Kong, A. P. H. (2011). Family members’ report on speech-language pathology and community services forpersons with aphasia in Hong Kong. Disability and Rehabilitation, 33(25–26), 2633–2645.

Law, J., Huby, G., Irving, A., Pringle, A., Conochie, D., Haworth, C., & Burston, A. (2010). Reconciling theperspective of practitioner and service user: Findings from The Aphasia in Scotland study. InternationalJournal of Language and Communication Disorders, 45(5), 551–560.

Legg, L., Stott, D., Ellis, G., & Sellars C., (2007). Volunteer Stroke Service (VSS) groups for patients withcommunication difficulties after stroke: A qualitative analysis of the value of groups to their users.Clinical Rehabilitation, 21, 794–804. doi:10.1177/0269215507077301

Luck, A. M., & Rose, M. L. (2007). Interviewing people with aphasia: Insights into method adjustmentsfrom a pilot study. Aphasiology, 21(2), 208–224. doi:10.1080/02687030601065470

McElroy, T. A., Davis, A., Hunt, C., Dadul, J., Stanba, T., & Larson, C. (2011). Navigating a way for-ward: Using focused ethnography and community readiness to study disability issues in Ladakh, India.Disability and Rehabilitation, 33(1), 17–27. doi:10.3109/09638288.2010.485670

Morris, R., & Morris, P. (2012). Participants’ experience of hospital-based peer support groups for strokepatients and carers. Disability and Rehabilitation, 34(4), 347–354.

National Stroke Foundation. (2010). Clinical guidelines for stroke management. Melbourne, VI: Author.Parr, S. (2007). Living with severe aphasia: Tracking social exclusion. Aphasiology, 21(1), 98–123.

doi:10.1080/02687030600798337Patton, M. Q. (2002). Qualitative research and evaluation methods (3rd ed.). Thousand Oaks, CA: Sage.Pound, C. (2011). Reciprocity, resources, and relationships: New discourses in healthcare, personal,

and social relationships. International Journal of Speech-Language Pathology, 13(3), 197–206.doi:10.3109/17549507.2011.530692

Pound, C., Duchan, J., Penman, T., Hewitt, A., & Parr, S. (2007). Communication access to organisations:Inclusionary practices for people with aphasia, Aphasiology, 21(1), 23–38.

Rose, T. A., Worrall, L. E., Hickson, L. M., & Hoffmann, T. C. (2012). Guiding principles for printed edu-cation materials: Design preferences of people with aphasia. International Journal of Speech-LanguagePathology, 14(1), 11–23. doi:10.3109/17549507.2011.631583

Rosenberg, P. P. (1984). Support groups: A special therapeutic entity. Small Group Research, 15(2), 173–186.doi:10.1177/104649648401500202

Royal College of Speech and Language Therapists. (2005). Royal College of Speech and Language Therapistsclinical guidelines. Oxon: Speechmark.

Shadden, B., & Agan, J., (2004). Renegotiation of identity: The social context of aphasia support groups.Topics in Language Disorders, 24(3), 174–186.

Sherratt, S., & Hersh, D. (2010). “You feel like family . . .” Professional boundaries and socialmodel aphasia groups. International Journal of Speech-Language Pathology, 12(2), 152–161.doi:10.3109/17549500903521806

Simmons-Mackie, N. (1998). A solution to the discharge dilemma in aphasia: Social approaches to aphasiamanagement. Aphasiology, 12(3), 231–239.

Simmons-Mackie, N., & Damico, J. S. (1999). Qualitative methods in aphasia research: Ethnography.Aphasiology, 13(9–11), 681–687.

Simmons-Mackie, N., Kagan, A., O’Neill Christie, C., Huijbregts, M., McEwen, S., & Willems, J.(2007). Communicative access and decision making for people with aphasia: Implementing sustainablehealthcare systems change. Aphasiology, 21(1), 39–66. doi:10.1080/02687030600798287

Stevinson, C., Lydon, A., & Amir, Z. (2010). Characteristics of professionally-led and peer-led cancersupport groups in the United Kingdom. Journal of Cancer Survivors, 4, 331–338.

Vickers, C. P. (2010). Social networks after the onset of aphasia: The impact of aphasia group attendance.Aphasiology, 24(6–8), 902–913. doi:10.1080/0268703090343853

Dow

nloa

ded

by [

Nor

thea

ster

n U

nive

rsity

] at

14:

09 0

6 N

ovem

ber

2014