title: Problems experienced by the informal caregivers of cancer patients and their needs for support.
abstract: Informal caregivers experience problems of their own for which they need support, but despite the efforts of the World Health Organization to include the well-being of family members and caregivers in the concept of palliative care, their needs are rarely assessed systematically. This report explores caregivers' problems and their needs for professional support. Seventy-six caregivers of cancer patients with advanced disease completed a comprehensive needs assessment questionnaire, the Problems and Needs in Palliative Care questionnaire-caregiver form, listing 67 potential problems in their quality of life and their role of caregiver and 9 items concerning informational needs. The results of this study reveal that the "Top 20" list of the problems and needs reported by caregivers includes fears and emotional burdens; for the most part, caregivers did not need any more professional attention than they were already receiving. Many, however, needed support for managing patients' symptoms and wanted professional attention for the availability and coordination of services. Despite communalities, there was diversity in caregivers' individual needs. Personal needs could be identified with the Problems and Needs in Palliative Care questionnaire-caregiver form checklist. Although only a few caregivers were affected by some issues, such as financial problems, help for them was often needed. In conclusion, most caregivers would like more professional attention for 4 or 5 specific issues, often related to their competence as caregivers for their patients. Using structured needs assessments with the Problems and Needs in Palliative Care questionnaire-caregiver form seems a feasible method to identify the needs of individual caregivers in palliative care.
authors.affiliation: Centre for Quality of Care Research, University of Nijmegen, Nijmegen, The Netherlands. B.Osse@kwazo.umcn.nl
authors.forename: Bart H P
authors.initials: BH
authors.lastname: Osse
authors.forename: Myrra J F J
authors.initials: MJ
authors.lastname: Vernooij-Dassen
authors.forename: Egbert
authors.initials: E
authors.lastname: Schadé
authors.forename: Richard P T M
authors.initials: RP
authors.lastname: Grol
mesh_terms: D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D009369:Neoplasms / Q000451:nursing*; D010166:Palliative Care; D010353:Patient Education as Topic; D011788:Quality of Life