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caregivers, terminal care, quality of life



  1. Smeenk, Frank W.J.M.
  2. de Witte, Luc P.
  3. van Haastregt, Jolanda C.M.
  4. Schipper, Rob M.
  5. Biezemans, Hans P.H.
  6. Crebolder, Harry F.J.M.


Background: The burden of caring for terminal cancer patients has a negative effect on the informal caregivers' quality of life.


Objectives: To investigate the effects of a transmural home care intervention program for terminal cancer patients on the direct caregivers' (the patient's principal informal caregiver) quality of life, compared with standard care programs. The intervention program intended to optimize the cooperation and coordination between the intramural and extramural health care organizations(transmural care).


Methods: Direct caregivers of terminal cancer patients (estimated prognosis of less than 6 months) could be included in this quasi-experimental study. The direct caregivers' quality of life was measured in a multidimensional way 1 week before (T1), 1 week after (T2), and 4 weeks after (T3) the patient's discharge from the hospital (discharge being the starting point of the intervention), then again at 3 months after the patient's death (T4). Factor analyses on the four outcome measures yielded one factor. This was considered the primary outcome measure and was named the Overall Quality of Life Index(OQOLI).


Results: Multiple regression analyses showed that the intervention contributed significantly positively to the direct caregivers' OQOLI at T2 ([beta] =.30; p <= .05) and T4 ([beta] = .28; p <=.05), compared with standard care.


Conclusion: Transmural care forms a significantly positive contribution to the OQOLI of direct caregivers of terminal cancer patients 1 week after the patient's discharge from the hospital and 3 months after the patient's death. Good terminal care also appears to be important for direct caregivers as well, with respect to perceived quality of life.