title: Which carers of family members at the end of life need more support from health services and why?
abstract: With end of life care a national priority in many countries, and the main place of care the family home, informal family carers are now considered the frontline of primary care. Yet we are insufficiently informed about the needs of carers, both during the time of caring and during bereavement. This study identifies which carers believed they did not get enough support from health services when caring for a terminally ill family member, what factors influenced perceptions of support, and whether inadequate support influenced the carer's health following the death of a family member. Unlike previous survey designs that explore end-of-life concerns, we were able to triangulate interview data from semi-structured telephone interviews (August 2005-June 2006) with a relatively large group of 1071 carers in Western Australia, with administrative records from death registrations, hospital morbidity and community care records from the 1071 deceased family members. The addition of administrative data allowed us to quantify hospital and community care service use. Data analysis consisted of summary statistics and logistic regressions for two groups of carers during the first few months of bereavement: those whose health got a bit/lot worse, and those who were not coping on most/all days. We found that carers were more likely to have poor health if they perceived they did not get enough support from health services and if the deceased family member did not die in the carer's preferred place of death. Additionally, carers were more likely to be not coping if they were aged 60 years or less, female, had lost a spouse/partner and the deceased family member did not die in the carer's preferred place. By identifying which carers are more vulnerable than others, carer education and practical support can be targeted to specific groups. Ideally resources for bereavement support should be extended into the months following the relative's death.
authors.affiliation: Curtin Health Innovation Research Institute, Curtin University of Technology, Bentley WA 6102, Australia. bevmc@cyllene.uwa.edu.au
authors.forename: Beverley
authors.initials: B
authors.lastname: McNamara
authors.forename: Lorna
authors.initials: L
authors.lastname: Rosenwax
mesh_terms: D000223:Adaptation, Psychological; D000367:Age Factors; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D001601:Bereavement; D017028:Caregivers / Q000523:psychology*; D003430:Cross-Sectional Studies; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D007407:Interviews as Topic; D016015:Logistic Models; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D012737:Sex Factors; D012944:Social Support; D013727:Terminal Care / Q000523:psychology*; D014904:Western Australia