The effect of caregiving on bereavement outcome: study protocol for a longitudinal, prospective study

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Abstract

Background

The aim of the current study is to determine the effects of caregiving on bereavement outcome. The study will address two important gaps in the research literature: (1) the relationship between pre-death distress and post-death outcomes and (2) family caregivers’ anticipation and preparation of the death of the person for whom they care.

Methods/Design

We will conduct a longitudinal, prospective study of adult family caregivers of adult patients receiving palliative care. All participants will complete a questionnaire administered at four points – approximately 4–8 weeks prior to bereavement, and 3–4, 6–7, and 9–10 months post-bereavement. The questionnaire includes measures of multidimensional caregiving experiences (strain, distress, positive appraisals, and family wellbeing), caregiver prolonged grief, multidimensional grief responses (despair, panic behaviour, blame and anger, detachment, disorganisation, and personal growth), prolonged grief, quality of life, general health (psychological and physical) and demographics. These caregivers’ data will be compared to a comparison group matched for age, sex, and postcode, allowing the caregivers’ general health and quality of life to be compared to a normative group. The caregivers will also be invited to participate in a semi-structured interview about preparing for impending bereavement.

Discussion

This is the first study to address the methodological limitations in the current literature and will likely make a significant contribution to both our understanding of caregiving on bereavement outcome and to bereavement care offered in palliative and hospice settings.

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Most cited references 33

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Basics of Qualitative Research : Techniques and Procedures for Developing Grounded Theory

Anselm Strauss, Juliet M. Corbin (1998)

The Second Edition of this best-selling textbook continues to offer immensely practical advice and technical expertise that will aid researchers in analyzing and interpreting their collected data, and ultimately build theory from it. The authors provide a step-by-step guide to the research act. Full of definitions and illustrative examples, the book presents criteria for evaluating a study as well as responses to common questions posed by students of qualitative research.

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Supporting lay carers in end of life care: current gaps and future priorities.

Jennifer Funk, C Todd, Justin S. Payne … (2009)

Informal carers are central to the achievement of end of life care and death at home and to policy aims of enabling patient choice towards end of life. They provide a substantial, yet hidden contribution to our economy. This entails considerable personal cost to carers, and it is recognised that their needs should be assessed and addressed. However, we lack good research evidence on how best to do this. The present position paper gives an overview of the current state of carer research, its gaps and weaknesses, and outlines future priorities. It draws on a comprehensive review of the carer literature and a consensus meeting by experts in the field. Carers' needs and adverse effects of caregiving have been extensively researched. In contrast, we lack both empirical longitudinal research and conceptual models to establish how adverse effects may be prevented through appropriate support. A reactive, "repair" approach predominates. Evaluations of existing interventions provide limited information, due to limited rigour in design and the wide variety in types of intervention evaluated. Further research is required into the particular challenges that the dual role of carers as both clients and providers pose for intervention design, suggesting a need for future emphasis on positive aspects of caregiving and empowerment. We require more longitudinal research and user involvement to aid development of interventions and more experimental and quasi-experimental research to evaluate them, with better utilisation of the natural experiments afforded by intra- and international differences in service provision.

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A systematic review of psychosocial interventions for family carers of palliative care patients

Peter Hudson, Cheryl Remedios, Kristina Thomas (2010)

Background Being a family carer to a patient nearing the end of their life is a challenging and confronting experience. Studies show that caregiving can have negative consequences on the health of family carers including fatigue, sleep problems, depression, anxiety and burnout. One of the goals of palliative care is to provide psychosocial support to patients and families facing terminal illness. A systematic review of interventions for family carers of cancer and palliative care patients conducted at the start of this millennium demonstrated that there was a dearth of rigorous inquiry on this topic and consequently limited knowledge regarding the types of interventions likely to be effective in meeting the complex needs of family carers. We wanted to discern whether or not the evidence base to support family carers has improved. Furthermore, undertaking this review was acknowledged as one of the priorities for the International Palliative Care Family Carer Research Collaboration http://www.centreforpallcare.org. Methods A systematic review was undertaken in order to identify developments in family carer support that have occurred over the last decade. The focus of the review was on interventions that targeted improvements in the psychosocial support of family carers of palliative care patients. Studies were graded to assess their quality. Results A total of fourteen studies met the inclusion criteria. The focus of interventions included psycho-education, psychosocial support, carer coping, symptom management, sleep promotion and family meetings. Five studies were randomised controlled trials, three of which met the criteria for the highest quality evidence. There were two prospective studies, five pre-test/post-test projects and two qualitative studies. Conclusions The systematic review identified a slight increase in the quality and quantity of psychosocial interventions conducted for family carers in the last decade. More rigorous intervention research is required in order to meet the supportive care needs of family carers of palliative care patients.

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Author and article information

Contributors

Lauren J Breen: lauren.breen@curtin.edu.au

Samar M Aoun: s.aoun@curtin.edu.au

Moira O’Connor: m.oconnor@curtin.edu.au

Journal

Journal ID (nlm-ta): BMC Palliat Care

Journal ID (iso-abbrev): BMC Palliat Care

Title: BMC Palliative Care

Publisher: BioMed Central (London )

ISSN (Electronic): 1472-684X

Publication date (Electronic): 15 March 2015

Publication date PMC-release: 15 March 2015

Publication date Collection: 2015

Volume: 14

Electronic Location Identifier: 6

Affiliations

[ ]School of Psychology & Speech Pathology, Faculty of Health Sciences, Curtin University, GPO Box U1987, Perth, Western Australia 6845 Australia

[ ]School of Nursing and Midwifery, Faculty of Health Sciences, Curtin University, Perth, Australia

Article

Publisher ID: 9

DOI: 10.1186/s12904-015-0009-z

PMC ID: 4367904

PubMed ID: 25798071

SO-VID: ffb84a8e-292a-49b9-bfd5-86f5b0e08071

License:

This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.