title: A systematic review of instruments related to family caregivers of palliative care patients.
abstract: Support for family caregivers is a core function of palliative care. However, there is a lack of consistency in the way needs are assessed, few longitudinal studies to examine the impact of caregiving, and a dearth of evidence-based interventions. In order to help redress this situation, identification of suitable instruments to examine the caregiving experience and the effectiveness of interventions is required. A systematic literature review was undertaken incorporating representatives of the European Association for Palliative Care's International Palliative Care Family Caregiver Research Collaboration and Family Carer Taskforce. The aim of the review was to identify articles that described the use of instruments administered to family caregivers of palliative care patients (pre and post-bereavement). Fourteen of the 62 instruments targeted satisfaction with service delivery and less than half were developed specifically for the palliative care context. In approximately 25% of articles psychometric data were not reported. Where psychometric results were reported, validity data were reported in less than half (42%) of these cases. While a considerable variety of instruments have been administered to family caregivers, the validity of some of these requires further consideration. We recommend that others be judicious before developing new instruments for this population.
authors.affiliation: St Vincent's and The University of Melbourne, Centre for Palliative Care, Melbourne, Australia. peterh@medstv.unimelb.edu.au
authors.forename: Peter L
authors.initials: PL
authors.lastname: Hudson
authors.forename: Tom
authors.initials: T
authors.lastname: Trauer
authors.forename: Suzanne
authors.initials: S
authors.lastname: Graham
authors.forename: Gunn
authors.initials: G
authors.lastname: Grande
authors.forename: Gail
authors.initials: G
authors.lastname: Ewing
authors.forename: Sheila
authors.initials: S
authors.lastname: Payne
authors.forename: Kelli I
authors.initials: KI
authors.lastname: Stajduhar
authors.forename: Kristina
authors.initials: K
authors.lastname: Thomas
mesh_terms: D017028:Caregivers / Q000523:psychology; D017281:Cost of Illness; D003695:Delivery of Health Care / Q000458:organization & administration / Q000592:standards*; D006801:Humans; D010166:Palliative Care; D011787:Quality of Health Care / Q000458:organization & administration / Q000592:standards*; D016032:Randomized Controlled Trials as Topic; D012107:Research Design; D011795:Surveys and Questionnaires / Q000592:standards*; D019452:Terminally Ill / Q000523:psychology