Advance care planning - Family carer psychological distress and involvement in decision making:The ACTION trial

Vandenbogaerde, I. and De Vleminck, A. and Cohen, J. and Verkissen, M.N. and Lapeire, L. and Ingravallo, F. and Payne, S. and Wilcock, A. and Seymour, J. and Kars, M. and Grønvold, M. and Lunder, U. and Rietjens, J. and Van Der Heide, A. and Deliens, L. (2022) Advance care planning - Family carer psychological distress and involvement in decision making:The ACTION trial. BMJ Supportive and Palliative Care. ISSN 2045-435X

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Abstract

Objectives: Facilitated advance care planning (ACP) helps family carers' to be aware of patient preferences. It can improve family carers' involvement in decision making and their overall experiences at the end of life, as well as, reduce psychological stress. We investigated the effects of the ACTION Respecting Choices (RC) ACP intervention on the family carers' involvement in decision making in the last 3 months of the patients' life and on the family carers' psychological distress after 3 months of bereavement. Methods: Over six European countries, a sample of 162 bereaved family carers returned a bereavement questionnaire. Involvement in decision making was measured with a single item of the Views of Informal Carers-Evaluation of Services Short Form questionnaire. Psychological distress was measured with the Impact of Event Scale (IES). Results: No significant effect was found on family carers involvement in decision making in the last 3 months of the patients' life (95% CI 0.449 to 4.097). However, the probability of involvement in decision making was slightly higher in the intervention arm of the study (89.6% vs 86.7%; OR=1.357). Overall, no statistical difference was found between intervention and control group regarding the IES (M=34.1 (1.7) vs 31.8 (1.5); (95% CI -2.2 to 6.8)). Conclusion: The ACTION RC ACP intervention showed no significant effect on family carers' involvement in decision making or on subsequent psychological distress. More research is needed about (1) how family carers can be actively involved in ACP-conversations and (2) how to prepare family carers on their role in decision making. Trial registration number: International Standard Randomised Controlled Trial Number ISRCTN17231.

Item Type:
Journal Article
Journal or Publication Title:
BMJ Supportive and Palliative Care
Uncontrolled Keywords:
/dk/atira/pure/subjectarea/asjc/2900/2914
Subjects:
ID Code:
181089
Deposited By:
Deposited On:
12 Dec 2022 11:20
Refereed?:
Yes
Published?:
Published
Last Modified:
12 Dec 2022 11:25