Measuring Family Members’ Satisfaction with End-of-Life Care in Long-Term Care: Adaptation of the CANHELP Lite Questionnaire

Rationale. Improving end-of-life care (EOLC) in long-term care (LTC) homes requires quality measurement tools that assess families’ satisfaction with care. This research adapted and pilot-tested an EOLC satisfaction measure (Canadian Health Care Evaluation Project (CANHELP) Lite Questionnaire) for use in LTC to measure families’ perceptions of the EOLC experience and to be self-administered. Methods and Results. Phase 1. A literature review identified key domains of satisfaction with EOLC in LTC, and original survey items were assessed for inclusiveness and relevance. Items were modified, and one item was added. Phase 2. The revised questionnaire was administered to 118 LTC family members and cognitive interviews were conducted. Further modifications were made including reformatting to be self-administered. Phase 3. The new instrument was pilot-tested with 134 family members. Importance ratings indicated good content and face validity. Cronbach’s alpha coefficients (range: .88–.94) indicated internal consistency. Conclusion. This research adapted and pilot-tested the CANHELP for use in LTC. This paper introduces the new, valid, internally consistent, self-administered tool (CANHELP Lite Family Caregiver LTC) that can be used to measure families’ perceptions of and satisfaction with EOLC. Future research should further validate the instrument and test its usefulness for quality improvement and care planning.