A systematic review of instruments related to family caregivers of palliative care patients

Author:

Hudson Peter L1,Trauer Tom2,Graham Suzanne3,Grande Gunn4,Ewing Gail5,Payne Sheila6,Stajduhar Kelli I7,Thomas Kristina8

Affiliation:

1. St Vincent's and The University of Melbourne, Centre for Palliative Care, Melbourne, Australia, Queen's University, Belfast, Northern Ireland,

2. The University of Melbourne, Monash University, St Vincent's Hospital, Melbourne, Victoria, Australia

3. St Vincent’s and The University of Melbourne, Centre for Palliative Care, Melbourne, Australia

4. University of Manchester, School of Nursing, Midwifery and Social Work, Manchester, UK

5. University of Cambridge, Centre for Family Research, Cambridge, UK

6. Lancaster University, Division of Health Research, Lancaster, UK

7. University of Victoria, School of Nursing and Centre on Aging, Victoria, British Columbia, Canada

8. St Vincent's and The University of Melbourne, Centre for Palliative Care, Melbourne, Australia

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.

Publisher

SAGE Publications

Subject

Anesthesiology and Pain Medicine,General Medicine

Reference93 articles.

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