Caring ahead: Mixed methods development of a questionnaire to measure caregiver preparedness for end-of-life with dementia.

Durepos, Pamela; Akhtar-Danesh, Noori; Ploeg, Jenny; Sussman, Tamara; Kaasalainen, Sharon

Background: Family caregivers of persons with dementia often feel unprepared for end-of-life and preparedness predicts caregiver outcomes in bereavement. Existing questionnaires assessing preparedness have limitations. A multi-dimensional questionnaire assessing family caregiver preparedness for the end-of-life of persons with dementia is needed to identify caregivers at risk for negative outcomes in bereavement and evaluate the quality of strategies within a palliative approach. Aim: To develop a multi-dimensional questionnaire titled 'Caring Ahead' to assess feelings of preparedness for end-of-life in family caregivers of persons with dementia. Design: A mixed methods, sequential design employed semi-structured interviews, a Delphi-survey and pilot-testing of the questionnaire, June 2018 to July 2019. Setting/population: Participants included five current and 16 bereaved family caregivers of persons with symptoms advanced dementia from long-term care homes in Ontario, Canada; and 12 professional experts from clinical and academic settings in Canada, Europe, United States. Results: Interviews generated three core concepts and 114 indicators of preparedness sampling cognitive, affective and behavioural traits in four domains (i.e., medical, psychosocial, spiritual, practical). Indicators were translated and reduced to a pool of 73 potential questionnaire items. 30-items were selected to create the 'Caring Ahead' preparedness questionnaire through a Delphi-survey. Items were revised through a pilot-test with cognitive interviewing. Conclusions: Family caregivers' feelings of preparedness for end-of-life need to be assessed and the quality of strategies within a palliative approach evaluated. Future psychometric testing of the Caring Ahead questionnaire will evaluate evidence for validity and reliability.

UNITED States; CANADA; CAREGIVER attitudes; EXPERIMENTAL design; CAREGIVERS; RESEARCH methodology; INTERVIEWING; FAMILIES; HUMANITY; PSYCHOMETRICS; DEMENTIA; PSYCHOLOGY of caregivers; QUESTIONNAIRES; PALLIATIVE treatment; BEREAVEMENT; DELPHI method

Palliative Medicine, 2021, Vol 35, Issue 4, p768

0269-2163

Academic Journal

10.1177/0269216321994732