A systematic review of informal caregivers' needs in providing home-based end-of-life care to people with cancer

Aims.  This paper presents the results of a systematic review examining the practical information needs of informal caregivers providing home-based palliative and end-of-life care to people with advanced cancer.

Background.  Modern hospice care has led to increases in home-based palliative care services, with informal caregivers assuming responsibility for the majority of care. In response, health policy emphasises the provision of palliative care services in which both the patient and carer receive adequate support throughout illness and death. While the emotional needs of carers have been extensively researched, their practical needs with respect to the provision of physical care are yet to receive systematic attention.

Design.  Systematic review.

Methods.  Eligible articles were identified via electronic searches of research and evidence-based databases, hand-searching of academic journals and searches of non-academic grey literature websites. Quality of research was assessed via accepted guidelines for reviewing non-randomised, observational and qualitative literature. Data were synthesised by comparing and contrasting the findings to identify prominent themes.

Results.  Research consistently highlights this lack of practical support, often related to inadequate information exchange. These deficits typically manifest in relatives adopting a ‘trial and error’ approach to palliative care. Informal carers request a greater quantity of practically-focussed information, improvements in quality and increased methods of dissemination.

Conclusion.  Synthesis of the literature suggests that home-based palliative care services have been insufficiently focussed on assisting informal caregivers acquire practical nursing skills.

Relevance to clinical practice.  Enhanced access to professional advice represents a potentially effective method of increasing carers’ confidence in their ability to undertake practical aspects of home-based care. Evidence suggests that nurses and other health providers may better assist home-based carers by providing the information and skills-training necessary to facilitate this. This may necessitate the involvement of carers in the design and testing of new educational interventions.