title: Caregivers' active role in palliative home care - to encourage or to dissuade? A qualitative descriptive study.
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).
  
  
  CONCLUSIONS
  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.
authors.affiliation: daugaardweibull@dadlnet.dk
authors.forename: Anna
authors.initials: A
authors.lastname: Weibull
authors.forename: Frede
authors.initials: F
authors.lastname: Olesen
authors.forename: Mette Asbjoern
authors.initials: MA
authors.lastname: Neergaard
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