Factors affecting carers’ acceptance and use of support

1. Factors affecting carers’ acceptance and use of support Dr Katherine Pollard Professor Pam Moule Dr Rennie Thompson

2. Background • Informal carers are particularly susceptible to stress and/or ill-health. • Significant implications for services (Greenwood et al, 2013; O’Shaughnessy, 2010) • Providing support to carers now a priority in many countries. (Greenwood et al, 2013; Purcal et al, 2012).

3. UK – Carers’ Breaks • Funded ‘breaks’ and respite care for carers • Designed to support carers through • providing respite care • facilitating personal development

4. Carers’ Breaks - Bristol • Supported by Bristol Clinical Commissioning Group (BCCG) and by Bristol City Council (BCC) • Administered through the Integrated Carers’ Team • BCCG and BCC jointly commissioned UWE to conduct an evaluation of the Carers’ Breaks service in Bristol .

5. Evaluation methods • Questionnaire to carers • Individual telephone interviews with carers • All data collection tools designed with input from carers

6. Carer interviews Focus on exploring individual carers’ experience of the Carers’ Break initiative Sample characteristics (n=40): • 31 women, 9 men • Age range: 22 – 88 years • 18 caring for a spouse/partner, 13 caring for children, 9 caring for parents • 12 caring for more than 10 years • 4 caring for two individuals

7. Carer interviews Data analysed thematically. Five themes emerged: • Administration of the service • Carer circumstances • The break • Effects of the break • What happens next?

8. Carer circumstances 13 carers spoke spontaneously about constant difficulties in their lives: • ‘It takes over your whole life, morning, noon and night, and you’re constantly on the go and you are constantly trying to make things right .’ (C4)

9. Carer circumstances 14 carers felt they were well-supported by family and friends: • ‘I have got a friend who lives around the corner, I have got friends from the church who would come up and sit with her.’ (C27)

10. Carer circumstances 25 carers detailed health problems: • ‘I do get quite depressed and quite anxious and went down a very big horrible black tunnel at one point .’ (C30) 3 carers spoke about problems due to age: • ‘I found it hard with the bathing and that, I have always had a bad back and I can’t bend down without my back going.’ (C1, 77 years old)

11. The break 9 respondents did not want to leave the person for whom they cared: • ‘I don’t know how one arranges care for my husband...we share a bed and we have done for fifty years and I don’t see how anyone else can care for him somehow.’ (C2)

12. The break Other carers needed some time on their own: • I am getting a weekly payment so that I can get somebody to sit with my husband while I go and have my hair cut or meet friends for coffee...it just gets me out of the house and away from the stress for a little while. (C10) • It was just about having a day off ...a night away without my daughter. (C6)

13. The break Carer’s choice most important factor: • ‘He actually suggested doing some sort of course because I like to learn new things...’ (C5) • ‘I asked for money for a second hand computer and I got enough money for a brand new really lovely one...’ (C26)

14. The break One interviewee said that she would not be able to use the service at all: • ‘I won’t be able to do it ... I can’t do it because I look after my mum twenty-four hours a day...’ (C16) Time constraints affected other carers’ choice of break.

15. The break Most interviewees had been able to choose the type of ‘break’ they wanted • Short breaks away • Arrangements for alternative care • Classes and courses • Various therapy sessions • Transport • Equipment • Home cleaning

16. Effects of the break Most carers were positive about their ‘break’: • ‘I think it’s a wonderful idea, I really do... [it] is absolutely brilliant, being able to meet people you don’t see normally.’ (C5)

17. Effects of the break Some carers thought the ‘break’ had improved their health/wellbeing: • ‘It has made me feel a lot better about myself ... it’s given me something of myself back.’ (C29)

18. Effects of the break It was important for some carers to feel that their role is valued and appreciated: • ‘It definitely helps to feel you’re valued, that someone out there ... values the work that you actually do, that was quite a biggy.’ (C30)

19. Issues arising from the findings • Many carers experience very difficult circumstances on a day-to-day basis • Carers who were able to take advantage of the support on offer benefited from it • There is a need to be creative in the way that support is offered, so that carers can use it

20. Project team • Professor Pam Moule (UWE) • Dr Katherine Pollard (UWE) • Anthony Hatswell (Bresmed) • Dr Rennie Thompson (UWE) • Tina Fear (UWE) • Dr Pat Young (UWE) • Jackie Clarke (UWE, carer) • Bob Lawson (UWE, carer)

21. References • Greenwood N et al (2013) Peer Support for Carers. American Journal of Alzheimer’s Disease and Other Dementias 28(6) 617-626. • O’Shaughnessy M (2010) Changes in the couple relationship in dementia care.Dementia9(2) 237-258. • Purcal C et al (2012) From Assistance to Prevention. Social Policy & Administration46(7) 788–806.