Supporting Family Carers National Consultation with Family

Carers on the enhancement of Carer Support Groups

29th March 2014

Background

• Nationwide survey 5,000 distributed

• Response rate 10% - 505 completed surveys

• Promoted through social media, support groups, newsletter and hard copy

• 35 questions (open and closed)

• Aimed at carers attending and not attending support groups

Some Key Findings

Findings presented according to questions:

• Profile of respondents

• Support Group Attendance

• Carers Experience of Support Groups

• Enhancement of Support Groups

• Support Group Logistics

Profile of Respondents

• 84% Female and 16% Male

• 83% Family Carers

• 9% Former Family Carers

• 54% are aged between 45 and 64

• 25% caring between 5 and 10 years

• 48% caring for a son/daughter

• 23% caring for parent

• 22% caring for a partner/spouse

Support Group Attendance

• 43% currently attending Carers Support Groups

• 57% not attending Carers Support Groups

• Reasons for non attendance include:– Caring responsibilities (65%) – Meeting times don’t suit (18%)– Transport issues (13%)

• Significant number not aware of Support Groups in their area.

Carers Experience of Support Groups

• Positive words respondents associate with Support Groups include:– “Warm, Friendly, supportive, kindness,

understanding”

• Negative words respondents associate with Support Groups include:– Limited, disappointing, underfunded, for

older people, not inclusive, let down”

Name Support Groups

• 50% believe name should not change

• 40% no opinion on same

• 10% would like to see name changed– Suggestions include:

• Family Support Group

• Young at heart Group

• Social Support Group

• Carers Information Group

Enhancement of Carers Support Groups

• 82% find the Carers Associations Support Groups useful

• 18% not useful

• Positive comments included:– “Great place to get information, share

problems, relaxing, oasis of calm, reduce isolation “

• Negative comments included:– “Didn’t know they existed, they just sit around

drinking tea, no meetings in my area “

Enhancement of Support Groups

• When asked what would they change– 52% said “Nothing” – leave as is

• Other responses included:– “Don’t meet other groups enough, try to

involve more men, more support for former carers, more guest speakers, Specific themed groups, make it more orientated towards younger people”

Main Benefits

• When asked what are the main benefits you want to derive from Support Groups:– “Support, information and advice, time out,

ease stress, social contact, advocacy, combat isolation, training, exchange ideas, medical advice, techniques to help with feeding, lobbying and protesting”

Benefits

• 89% stated that they are satisfied that their goals are being met

• 11% stated they are not

• 91% stated they are satisfied with their facilitator

• 9% stated they were not satisfied with their facilitator

• 36% of carers said they would be willing to facilitate group with training

Types of Groups

• 35% stated they would like informal groups to socialise and network

• 28% stated condition specific groups

• 26% stated support groups for children with disabilities under 18

• 22% stated virtual/online support groups

• 19% continue with current model

Note some people ticked more than one box on this question

Frequency of meetings

• 62% meeting monthly

• 16% weekly

• 14% every two months

• 8% quarterly

• Preferred day of the week – 29% any day– 25% Wednesday– 22% Tuesday

Online/virtual groups

• 64% said they would avail of virtual/online support groups

• 36% said they would not

• Of those who said yes:– 47% said monthly – 42% said weekly – 8% said every two weeks– 3% quarterly

Online/virtual groups

• When asked how they envisage them working:

• Suggestions included:– “Closed groups, message boards, chat

rooms, facebook, website, skype, email support, online information and advice”

– Question and answer section on website

Recommendation 1.

1. Design and implement standard operating procedures for Carers Support Groups to ensure consistency and best practice across the network.

a) Ensure mix of informal get-togethers and structured guest speakers

Recommendation 2.

2. Design and deliver training programme for Support Group Facilitators

a) Include family carers who have expressed interest in same (36% of those surveyed)

Recommendation 3.

3. Address low percentage of male carers attending support groups

a) Contact male groups to ascertain their needs

b) Establish referral system with health professionals

c) Pilot other models such as workshops, seminars, training, mens sheds etc.

Recommendation 4.

4. Address the finding that 65% of carers cannot attend due to caring responsibilities.

a) Pilot volunteer project to relieve carers to attend support group meetings

b) Introduce virtual/online support groups

c) Use careline to make contact with rural/isolated carers/email minutes of local support group meetings

Recommendation 5.

5. Increase awareness of Carers Support Groups across the network

a) Nationwide awareness campaign to include:Social media, posters, radio community notices,

parish newsletters, health clinics, PHN’s and other

health professionals, Local interest Groups and other

Cost effective methods of creating awareness.

Recommendation 6.

6. Don’t change the name “Carer’s Support Group” a) 90% of respondents have no wish to change

Carers Support Group

Recommendation 7.

7. Introduce specific themed Carers Support Groups such as groups for:a) Parents of children with disabilities

b) Carers of persons with Alzheimers

c) Former Carers

d) Carers of people with mental health illness

Recommendation 8.

8. Explore other models for Support Groups such as:a) Specific themed workshops

b) Training sessions/activities

c) Lobbying workshops

d) Virtual Support groups

Recommendation 9.

9. Explore how to develop Virtual/online Carer Support Groups (64%) a) Look at best practice in other voluntary

organisations i.e. Closed chat rooms, message boards, facebook, skype, email support, blogs

b) Online information service through Careline

c) Questions and Answers section on website

Recommendation 10.

10. Explore where and when we establish

support groups a) Ensure collaboration with HSE and other

relevant health professionals/service providers

b) Ensure early engagement with carers at start of caring lifecycle (Hospital/GP/Health centre based support groups)