Ethical issues in palliative care for nursing homes: development and testing of a survey instrument

AIM: To develop and psychometrically assess a survey instrument identifying ethical issues during palliative care provision in nursing homes.

BACKGROUND: Registered nurses (RNs) and healthcare assistants (HCAs) have reported ethical issues in everyday palliative care provision. Identifying these issues provides evidence to inform practice development to support healthcare workers.

DESIGN: Cross-sectional survey of RNs and HCAs in nursing homes in one region of the United Kingdom (UK) METHOD: A survey instrument, "Ethical issues in Palliative Care for Nursing homes," (EPiCNH) was developed through the findings of qualitative interviews with RNs and HCAs in nursing homes and a literature review. It was reviewed by an expert panel and piloted prior to implementation in a survey in 2015 with a convenience sample of 596 RNs and HCAs. Descriptive and exploratory factor analysis were used to assess the underlying structure of the Frequency and Distress Scales within the instrument.

RESULTS: Analysis of 201 responses (response rate = 33.7%) revealed four factors for the Frequency Scale and five factors for the Distress Scale that comprise the EPiCNH. Factors common to both Scales included "Processes of care," "Resident autonomy", and "Burdensome treatment". Additionally, the Frequency Scale included "Competency," and the Distress Scale included "Quality of care," and "Communication."

CONCLUSION: The EPiCNH instrument has added to the palliative care knowledge base by considering the ethical issues experienced specifically by RNs and HCAs within the nursing home. This research offers preliminary evidence of the psychometric properties of the EPiCNH survey instrument.

RELEVANCE TO PRACTICE: The two largest factors highlight the need to address the organisational aspects of caring, and provide training in negotiating conflicting ethical principles.