Lisa Hee (QUT) Lecturer Post Graduate Aged care coordinator PHD candidate

Transcription

1 Lisa Hee (QUT) Lecturer Post Graduate Aged care coordinator PHD candidate

2 Motivation Director of Nursing in aged care facilities. Hours counselling families, particularly spouse they teach us how to look after our finances after retirement but nothing about how to cope with grieving for someone who hasn't died.

3 Significance. In 2003 there were 2.5 million carers in Australia. (ABS, 2008). 18% (452,300) were aged 65 years and older. (ABS, 2008). 83% of older carers are caring for a spouse. (AIHW, 2007) Conservative estimates show carers save the Australian economy $16 Billion annually. (Carers Australia, 2004)

4 Carers. United Nations report for people around the world reveal the spouse is the most significant in providing support for vulnerable elders. (United Nations, 2005) As primary carers of a spouse/partner, they are the least likely of all carers to seek help (Hales, 2007).

5 Literature review identified: Caring in the home/community Moving a loved one into a care facility The loved one has been moved into a facility Spousal involvement in the aged care facility Nursing staff response to spousal involvement.

6 Caring in the home/community A range of stressors are experienced by informal carers when caring for a loved one including incongruence between carer and care receiver. psychosocial impacts including caregiver burden and depressive symptoms financial strain including money and asset management, Physical impacts such as fatigue and frailty. (Ekwall, Sivberg, Hallberg, 2005; Horowitz, Goodman and Reinhart, 2004; Zarit, 2004; Sherwood, Given, Given and Von Eye, 2005; Chambers and Connor, 2001; Kersten et al, 2000; Broe, Jorm, Creasey, Casey et al, 1999; Kirk and Glendinning, 1998)

7 Moving a loved one into a care facility. Making the decision Transitioning into placement Relationships at admission Frequently seen as a last resort Making the decision included feelings of: Inability to cope, Hardest thing they ve had to do Feeling of the unexpected Pain Guilt Relief one of life s most difficult decision and may be the last major decision that an older persons makes Professional domination at admission and largely ambivalent responses by health professionals Ryan and Scullion (2005) Nay (1996) Nolan and Dellasega (1999) Lundh, Sandberg and Nolan( 2000)

8 The loved one has been moved into the facility. Studies have been found in the following areas: Carers loss Relocation stress Separation of spouses Family satisfaction

9 Spousal involvement in the aged care facility. Four themes were identified: Psychosocial separation Married widowhood Missing their spouse Visiting and involvement

10 Staff response to spousal involvement Some studies showed in many cases facilities encouraged spouses to stay away following admission ( Hertzberg, Ekman and Axelsson, 2002; Ryan and Scullion, 2000, Dellasega, 1999). Staff need to involve family members in care planning recognising their previous roles, but not expect them to carry out all of them ( McGarry Logue, 2003; Dewar, 2003; Keefe and Fancey, 2000).

11 The Gap: What don't we know? The lived experience of the spouse who is left at home after admission of their loved one to an aged care facility.

12 The study... Aim: To find out what the lived experience is of the spouse left at home after their spouse is admitted to a long term facility.

13 Objectives: Provide awareness to partners of those who may experience admission into an aged care facility regarding possible reactions/issues. Provide awareness to aged care staff re the issues spouses in the community face following admission of their partner into an aged care facility.

14 Objectives... Inform key stakeholders including policy makers about the issues informal carers face following the admission of their spouse into an aged care facility. Identify areas that require further follow up for spouses remaining in the community after their partner has been admitted to an aged care placement

15 Method. Phenomenology. this study is interested in the individual's experience and what it means to them. Understanding a persons experience may guide nurses (or anyone else) to interact and assist more appropriately to that person s needs. (Cohen, Kahn, Steeves, 2000)

16 Method (cont...) Unstructured interviews sought within 30 days of admission of loved one into a facility. Repeated again in 3 months and again 9-12 months after admission. Longitudinal approach provides richness in data.

17 Participants Purposive sampling will be used. 6 to 8 participants, each interviewed 3 times. Inclusion: married or de facto relationship prior to admission of partner into facility. Exclusion: respite admissions Language or cognitive barriers

18 Data analysis Recordings of in-depth interviews are transcribed verbatim then examined by researcher, at an individual level. Thematic analysis as researcher immerses themself in the transcriptions to identify themes that may emerge.

19 In summary Admission into a nursing home; the spouse s lived experience. Longitudinal approach. Phenomenological study used to identify themes (essences) of the meaning of the experience to the participant.

20 References. Australian Bureau of Statistics (2008). A profile of carers in Australia, ABS Cat Canberra: ABS Australian Institute of Welfare (2007). Older Australia at a glance. 4 th edition. Cat no AGE52, Canberra: AIHW Broe G, Anthony F, Creasey H, Casey B, Bennett H, Cullen J, Edelbrock D, Waite L, Grayson D. (1999). Carer distress in the general population: results from the Sydney Older Persons Study. Age and Ageing 28, Carers Australia. (2004). Facts about Carers in Australia. Retrieved October 27, 2004 from Cassells, C and Watt, E (2003). The impact of incontinence on older spousal caregivers. Journal of Advanced Nursing. 42(6): Chambers, M., Ryan, A., Connor, S (2001) Exploring the emotional support needs and coping strategies of family carers. Journal of Psychiatric and Mental Health Nursing. 8, Cheung, J and Hocking, P (2004). Caring as worrying: the experience of spousal carers. Journal of Advanced Nursing. 47(5);

21 Davies S and Nolan M (2006) Making it better : Self perceived roles of family caregivers of older people living in care homes: A qualitative study. International Journal of Nursing Studies. 23, Davies S and Nolan M (2004) making the move: relatives experience of the transition to a care home. Health and Social Care in the Community 12(6) Dow, B., Haralambous, B., Giummarra, M., Vrantsidis, F (2004) What carers value: review of carer literature and practice. Final report. National Ageing Research Institute. Ekwall A, Sivberg B, Hallberg I (2005) Loneliness as a predictor of quality of life among older caregivers. Journal of Advanced Nursing. 49(1), Fast,H., Keating, N., Otfinowski, P and Dersken, L (2003). Characteristics of Family/Friend care networks of frail seniors. Canadian Journal on Aging. 23(1): Gilley, D., McCann, J., Bienias, J., Evans, D.(2005) Caregiver psychosocial adjustment and institutionalisation of persons with Alzheimer s disease. Journal of Aging and Health. 17(2) Hales, C (2007). Crisis or commotion? An objective look at evidence on care giving in families. Family Matters 76:18-23 Helmes, E., Green, b., Almeida, O(2005).individual differences in the experience of burden in caring for relatives with dementia: role of personality and mastery. Australasian Journal on Ageing. 24(4); Hertzberg A, Ekman S and Axelsson K (2002) Relatives are a resource but.. Registered Nurses views and experiences of relatives in nursing homes. Journal of Clinical Nursing. 12,

22 Horowitz D, Goodman C and Reinhart J (2004) Congruence between disabled elders and their primary carers. The Gerontologist 44(4) Hoskins, S., Coleman, M., McNeely, D (2005) Stress in carers of individuals with dementia and community mental health teams: an uncontrolled evaluation study. Journal of Advanced Nursing. 50(3), Keefe J and Fancey P (2000) The care continues: Responsibility for elderly relatives before and after admission to a long term facility. Family Relations 49, Kersten P, McLellan L, George S, Mullee M, Smith J (2000) needs of carers of severely disabled people: are they identified and met adequately? Health and Social Care in the Community 9(4), Kirk S and Glendinning C (1998) Trends in community care and patient participation: implications for the roles of informal carers and community nurses in the United Kingdom. Journal of Advanced Nursing 28(2) Levy-Storms, L., Miller-Martinez, D.(2005). Family caregiver involvement and satisfaction with institutional care during the first year after admission. Journal of Applied Gerontology. 24(2), Mackey,S (2005) Phenomenological nursing research: methodological insights derived from Hedidegger s interpretive phenomenology. International Journal of Nursing Studies 42,

23 Morgan D, Reed J, Palmer A (1997) Moving from hospital into a care home-the nurses role in supporting older people. Journal of Clinical Nursing Nolan M and Dellasega C (2000) I really feel I ve let him down : supporting family carers during long term care placement for elders. Journal of Advanced Nursing 31(4), Nolan M and Dellasega C (1999). Its not the same as him being at home creating caring partnerships following nursing home placement. Journal of Clinical Nursing. 8, Paulus T, van Ruuk A and Keijer F (2004) Informal and formal caregivers involvement in nursing home care activities: impact of integrated care. Journal of Advanced Nursing, 49(4), Ryan A, and Scullon H (2000) Nursing home placement: an exploration of the experience of family carers. Journal of Advanced Nursing 32(5), Takano, M and Arai, H (2005) Gender difference and caregivers burden in early-onset Alzheimer s disease. Psychogeriatrics. 5: Tilse, C., Setterlund, D., Wilson, J., Rosenman, L (2005). Minding the money: a growing responsibility for informal carers. Ageing and Society. 25, Todres, L and S Wheeler. (2001). The complementarity of phenomenology, hermeneutics and existentialism as a philosophical perspective for nursing research. International Journal of Nursing Studies. 38:1-8