Supporting Family Carers National Consultation with Family Carers on the enhancement of Carer Support Groups 29 th March 2014

Background Nationwide survey 5,000 distributed Response rate 10% 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, support, online information and advice” –Question and answer section on website

Recommendation 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 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 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/ minutes of local support group meetings

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

Recommendation 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 Explore other models for Support Groups such as: a)Specific themed workshops b)Training sessions/activities c)Lobbying workshops d)Virtual Support groups

Recommendation 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, support, blogs b)Online information service through Careline c)Questions and Answers section on website

Recommendation 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)