The Transition of Family Carers in Rural Nursing Homes: A Grounded Theory Study

1. Title of Study Carers in Transition: A rural perspective on family caregiving and entry to care. Dr Assumpta Ryan School of Nursing and Institute of Nursing Research University of Ulster

2. Background • Demographic trends • Dearth of published material on transition from home to nursing home • Ageist lack of recognition of magnitude of nursing home decision

3. Background • Move to a care home often portrayed as a negative experience • Need for a rural perspective

4. Aim of study To explore family carers’ experiences before, during and after the nursing home placement of an older relative

5. Data Collection • Semi-structured interviews using grounded theory methodology with 28 relatives of older people who had recently moved to a nursing home • Ethical approval • Large NHS Trust –isolation and social deprivation • Methods of recruitment

6. Selection criteria • Experience as a primary carer for an older person prior to nursing home placement. • Involvement with the relocation process • Willingness to participate in the study

7. The interview • What factors influenced the nursing home placement decision? • How was the home selected? • Who was involved in the decision making process? • What was the impact of the placement?

8. Analysis • QSR NVivo and manual analysis • Three stages of coding: open, axial and selective • Aim of analysis: to relate categories to subcategories and identify the main theme of the research

9. Key factors influencing the placement • Increased health needs of the older person -deterioration in condition or precipitating event • Reduction in the carer’s ability to cope -impact on physical, mental and social heath

10. Impact on carer “I actually nearly died myself over the whole thing. I got high blood pressure from it. Nobody cared about my health at all. Everybody was saying.. do,do,do. Even when I was sick, I had to come home and work” (daughter-in-law) “When she got out from hospital, for months I could not leave this house. She wouldn’t go to bed until midnight and I would have to wait until she was asleep to go to the 24 hour shop and hope she wouldn’t hear me” (son) “I can look back now and see the neglect that I have done to my family over the years to provide the care that mummy and daddy needed. It was needed and there was nobody else. It has its effect” (daughter).

11. The Caregiving Continuum Community Care _________Institutional Care The move from the left to the right of the continuum is characterised by an increase in the health needs of the older person as evidenced by a greater demand on health/social services intervention and a reduction in carer’s health status and ability to cope.

12. Other factors influencing the placement • Experience of acute care • Support with caring role • Nature of caregiving relationship • Thoughts and feeling about the placement

13. “Your fear for years is that you would go in some morning and find her dead on her own but yet you know that she would not have wanted to be moved out of her home. You kept putting off the decision to literally take her out” (son) “I felt sort of torn. I felt that maybe I should have looked after her but I am relieved that she has someone there all the time and I can get on with my life” (daughter) “John said that he was 58 years old and we hadn't had a life for the last 15-18 years looking after her and it was time we had a life too. He feels that he did as much as he could for as long as he could” (daughter-in-law)

14. The decision making process • The primary caregiver • Validation by health and social care staff • The extended family • Choosing a home • A foregone conclusion in rural areas

15. Thoughts and feelings after the placement • Conflicting emotions • Sadness regret /relief and freedom • A sense of failing in ones’ duty to provide care • Loss and bereavement: married widowhood • Acceptance of finality of decision • Guilt not a key finding in this study

16. “She said she loves to hear the door opening and see the head looking in at 1am. She said that it is great just to know that someone is there to look after her. Then I realised that I had done the right thing and that she was very content” (son)“I feel that I have this duty to spend weekends near the home. My sister puts that pressure on me because she says she visits during the week“ (daughter)“The biggest drawback is that we have no place to call home any more” (daughter)“I miss him. He was always there if anything went wrong. He put it right” (wife)

17. The role of families in nursing homes • Maintaining contact with the older person • Maintaining contact with the community • Carers involvement in the the home • Blurring of role boundaries “ I sometimes find it hard difficult to know where the lines of responsibility stop and start when to comes to the home and to the family”.

18. Making it easier • An inherently difficult experience • Respecting former routine • Communication and information

19. Making it easier • Importance of the little things “She would have died if people had seen her without her dentures” “Mum would never have eaten porridge and I know in the home she has been given porridge and the she can be sick and I don’t want to say it’s probably the porridge”

20. Having a sense of familiarity with the nursing home environment, staff, residents and local community…………………………………… emerged as the core category and one that permeated all aspects of caregivers’ experience of the nursing home placement of an older relative.

21. Familiarity - key to a more positive transition • familiarity with local health and social care staff • familiarity associated with the grapevine, home owners, visiting home, friends/family working in home • familiarity alleviated difficult decisions about choice of home, a foregone conclusion in a rural area • familiarity nurtured through regular visiting and close relationships with staff.

22. The importance of familiarity “Irene (previously a home help) works in the nursing home 4 nights a week. We knew the manager for years. She worked in the hospital whenever he was in for the stroke. Most of the staff were the same ones who looked after mummy 5 years ago.” (wife) “There is a care assistant looking after John now and we minded her as a child. She is a lovely girl. That means a lot to me and him. He knows who she is. They are great down there. They all work together.” (wife)

23. Implications • Recognition, information and support for families • Carers entitled to an assessment of their need and ability to care • Awareness of factors influencing admission to long-term care facilities. • Sharing of expertise in caring partnerships

24. Implications • Policy – ‘Ageing in place’ and geographical distribution of care homes. • Practice - the role of health and social care practitioners in facilitating the transition and maintaining familiarity • Education - investing in care home staff and meeting the needs of residents—feeling ‘at home’ or ‘in a home’ • Rurality, familiarity and social capital

25. Building on outcomes • Further research on entry to care from an urban and rural perspective • Social capital as a strength in rural communities • Entry to care may always be a difficult decision but it is possible to make it better. Nurses are ideally placed to rise to this challenge.