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

Shevaun Nadin,Mohammed Ali Miandad,Mary Lou Kelley,Daren K Heyland,Jill Marcella

doi:10.1155/2017/4621592

Shevaun Nadin, Mohammed Ali Miandad + Show 3 more

Open Access

https://doi.org/10.1155/2017/4621592

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Abstract

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.

Highlights

Every person deserves to receive quality care at the end of life, and developing quality end-of-life care (EOLC) across diverse settings is an international priority [1,2,3]
The literature review conducted at the onset of the research revealed seven domains that influence family satisfaction with EOLC in long-term care (LTC)
The results suggest that the adaptations resulted in a validated quality measurement tool

Summary

Introduction

Every person deserves to receive quality care at the end of life, and developing quality end-of-life care (EOLC) across diverse settings is an international priority [1,2,3]. This paper introduces a new instrument for measuring families’ perceptions of quality of EOLC in LTC. This instrument makes an important contribution in three ways. It measures both the importance of quality care to families of LTC residents and their satisfaction with EOLC, allowing the two to be compared to identify disparities. It measures satisfaction during the care experience as opposed to following the resident’s death (bereavement). LTC homes often lack human resources to conduct face-to-face interviews for quality improvement

Methods

Results

Discussion

Conclusion