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Open Access Highly Accessed Research article

Caregivers' active role in palliative home care – to encourage or to dissuade? A qualitative descriptive study

Anna Weibull1, Frede Olesen2 and Mette Asbjoern Neergaard2*

Author affiliations

1 General Practice, Grenaa, Denmark

2 Research Unit for General Practice, Department of Public Health, University of Aarhus, Denmark

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Citation and License

BMC Palliative Care 2008, 7:15  doi:10.1186/1472-684X-7-15

Published: 16 September 2008

Abstract

Background

Spouses' involvement in palliative care is often a prerequisite for home death, but it is unclear whether active involvement of the spouse, e.g. administering and being in charge of oral or subcutaneous medication or taking care of the patient's personal hygiene, could be harmful or have negative effects on the spouse's experience of the palliative course of disease. The aim of this study was to explore the impact of bereaved spouses' active involvement in medical and physical care on their experience of the palliative course of disease.

Methods

The study was a qualitative, descriptive study based on semi-structured individual interviews with seven bereaved spouses.

Results

Four main categories were found: Degree of involvement, Positive and Negative impact and Prerequisites. The prerequisites found for a positive outcome were Safety (24-hour back-up), Confidence (Professionals' confidence in the spouses' abilities) and Dialog (Spouses' influence on decision-making and being asked).

Conclusion

The results from this study identified important issues whenever spouses take an active part in medical treatment and physical care of critically ill patients in palliative care. The results question the previous research that active involvement of family care givers could be harmful and add preconditions to a positive outcome. More research into these preconditions is needed.