title: Caregiving for the terminally ill: at what cost?
abstract: This literature review exposes the nature and extent of physical and psychosocial morbidity and economic disadvantage, home palliative caregivers suffer as a direct result of their caregiving role. Research has demonstrated that caregivers providing support to individuals receiving palliative care report unmet needs for information, communication, service provision and support from health and community services. Three sets of challenges are highlighted in this literature review which help explain why the needs of home palliative caregivers are largely unmet: (i) barriers to seeking help; (ii) a dearth of research-based interventions focused on reducing the negative aspects of caregiving; and (iii) a number of impediments to effective policy and service development for family caregivers. Furthermore, invited submissions from caregivers echoed and confirmed the issues reported in the literature. Recommendations for enhancing caregiver support are outlined.
authors.affiliation: WA Centre for Cancer and Palliative Care, School of Nursing Midwifery and Postgraduate Medicine, Edith Cowan University, Churchlands, Australia. s.aoun@ecu.edu.au
authors.forename: Samar M
authors.initials: SM
authors.lastname: Aoun
authors.forename: Linda J
authors.initials: LJ
authors.lastname: Kristjanson
authors.forename: David C
authors.initials: DC
authors.lastname: Currow
authors.forename: Peter L
authors.initials: PL
authors.lastname: Hudson
mesh_terms: D017028:Caregivers / Q000523:psychology*; D003153:Community Health Services / Q000592:standards; D006297:Health Services Accessibility / Q000592:standards*; D006301:Health Services Needs and Demand; D006801:Humans; D013727:Terminal Care / Q000592:standards*; D019452:Terminally Ill