1. WHOS THERE FOR CARERS ? Psychosocial aspects of caring: the role of social support and social networks for carers of people with MS Rosemary Chesson Professor, Health Services Research Group

2. Carers research Main focus to date on: older people women mothers and daughters single rather than multiple caring relationship

3. Carers of people with MS Most likely to be: of a younger age men have responsibility for dependent children

4. Research and carers of people with MS recent origin largely undertaken in USA and Canada few considered caring and parenting lack of research on carers support needs

5. Social support and caring Social support The feeling of being cared for and loved by, esteemed and valued, and belonging to a network of communications and mutual obligation Cobb, 1976 Community ties with friends and relatives are the principal means people get supportive resources Strong ties provide emotional aid and companionship physically accessible ties provide services Wellman & Worthey, 1990

6. Aim of project 1) to determine the nature of social support for carers of people with MS 2) to establish the relationship between health & social care services and informal care networks 3) to identify strategies for providing social support

7. Research design Qualitative approach Scotland wide with a focus on Aberdeen, Ayr, Argyll & Clyde, Edinburgh Semi structured interviews with 60 carers who volunteered Interviews tape recorded and transcribed All interviews undertaken by one interviewer

8. Main findings Participants 36 men and 24 women mean ages 47 and 44 years 30 caring for wife (+1 ex - wife) 17 caring for husband 4 caring for partners 8 other, eg daughters, sons 34 were members of the MS Society 16 parents of dependent children (25%)

9. Caring relationship Duration 18 months - 34 years difficulties in estimating precisely how long She was diagnosed two years after our son was born. My son is 19 now and he has been brought up with MS. She had it obviously before we were married - we know now. She was diagnosed almost right after our son was born Carer G Impact of diagnosis I think that I have been diagnosed as well. When he was diagnosed, we were diagnosed also Carer F

10. Nature of caring Frequent comments: fluctuating needs of cared for person He can do most things for himself. I just have to help him sometimes when he gets worse or so Carer M needs increasing over the years I have to be more in here to support him more... take some more of the responsibilities.. he has 30 different symptoms with varied degrees and at varied times. I have to be there to support him. Now we have to deal with depression a lot Carer L

11. Wide ranging help and support I made a list once and I think that I do 43 jobs in one day in this house, which means getting her up, doing her tea, emptying the dishwasher, the washing machine, hanging out the clothes, putting things in the dryer. She has five fruits every day and I have to cut them up every day... she has two meals a day. For breakfast she gets some toast or fruits with her tea and then in the night she gets (pasta/vegetables) with a pudding. Then I get her to the toilet. After the toilet I shower her … dry all her spots. Carer VV

12. Parenting and caring During the day I dress her, toilet her, feed her. I also have to take care of the kids (7 and 2 years) and that means to feed everyone again and play with them also Carer R

13. Parenting and caring For me personally (what is difficult to cope with) is being the only person who can do things. And that means being everything for everybody else in the house. I have actually lost whoever I am, except for the fact I am a carer. That is my main job and a mum. I am a mum and a carer, or a carer and a mum … or a complete carer Carer II

14. Caring and caring for parents (last week) I went to visit my mother who is 103 years old. She lived with us for 20 years, but now she has had to go into a nursing home. I could not take care of her as well Carer DD

15. Major life adjustments Employment - resignation and early retirement reported - re-arranging working hours (p/t work) - affected chances of promotion Impact - financially - socially - way work itself is performed

16. Social Support Marital support changes in roles and expectations When I married him I knew that he had it, but... its like having a baby, you do not really know what it is like until you have it Carer JJ partner relied on both for help and assistance and emotional support

17. Family Support Few family member close by His family have no role.. his parents are divorced, his mother lives (several hundred miles north) and his father lives (out to the west). They are elderly and pensioners. So practicalities are that we dont see them now. They havent seen my son since he was 4 years old and he is 11 now Carer D Her family... well it is a bit strange, because her family does not want anything to do with her... I think that the last time her father visited her was three years ago Carer C

18. Support from friends The more limiting MS, the more likely friendships would not be sustained. Main reasons given: wheelchair access distress/discomfort at effects of MS carer availability

19. Support and services services not likely to be provided until major disabilities few indicated comprehensive packages services obtained only after lengthy contact/lobbying. Therefore, what happens to us is what happened to everyone I thing. Because it happens to you, you are on your own; you have no help, you cope with it - you cope as best as you can … Carer A I go upstairs and lay on my bed (when things get difficult). Sometimes the kids are too much also. Carer Q

20. Reasons for low service input From the interviews, several reasons for this emerged a) service input was largely restricted to carers providing care for those with the highest levels of dependency; b) difficulties of obtaining information on services, including their costs; c) carers reluctance to seek ( and sometimes accept) help - in some cases associated with the person with MSs reluctance; d) the need to be persistent in contact with service providers; e) lack of knowledge of MS on the part of service providers, including those providing health care; f) dissatisfaction with the nature of services offered.

21. Recommendations 1.Closer liaison between MS Society and carers organisations 2.Greater dialogue with the statutory sector regarding the support needs of carers 3.MS Society considers employment of carer support workers 4.Development of a strategy to support children whose parents have MS 5.Investigation of setting-up befriending schemes locally.

22. Acknowledgements Thanks to all the carers who took part. Clara Garcia who undertook all the interviews and transcribed them The MS Society