Cultural adaptation and validation of the Quality of Dying in Long-term Care (QoD-LTC and QoD-LTC-C) scales by caregivers in nursing homes.

BACKGROUND: There is a lack of tools that can evaluate quality of dying in nursing homes from the perspective of deceased patients' caregivers. The aim of this study was to adapt and validate the caregivers' versions of the Quality of Dying in Long-Term Care (QoD-LTC) and Quality of Dying in Long-Term Care Complete (QoD-LTC-C) scales in the Spanish context. METHODS: This was a cultural adaptation and validation study. The scales were translated from English to Spanish and vice versa, and 13 experts in end-of-life care participated in a two-round Delphi panel. Caregivers of 69 deceased residents from seven nursing homes in southern Spain completed both scales. Reliability, feasibility, and concurrent validity with global quality of dying perception and symptom burden (Edmonton Symptom Assessment Scale), were evaluated. RESULTS: Spanish caregivers' version of the QoD-LTC scale showed good internal consistency for the total scale (α = 0.74) and each of its three factors, and good inter-rater reliability (ICC = 0.50) and test-retest reliability (ICC = 0.81). The Spanish QoD-LTC-C scale for caregivers showed good internal consistency for the total scale (α = 0.81) and for its component factors, and good test-retest reliability (ICC = 0.89) and inter-rater reliability (ICC = 0.66). Both scales correlated with family caregivers' global perception of deceased residents' quality of dying (r = 0.39; r = 0.32), but not with the ESAS score. CONCLUSIONS: Both scales presented an adequate factorial structure, internal consistency, and reliability to assess caregivers' perception of the quality of dying in Spanish nursing homes.

Quality of dying among elderly people diagnosed with dementia in nursing homes: A mixed methods study.

WHAT IS KNOWN ON THE SUBJECT: Nurses working at nursing homes can play a pivotal role in mental health as a high proportion of residents diagnosed with dementia are in these facilities. Many institutionalized residents diagnosed with dementia develop clinical complications and symptoms that reduce the quality of dying. A mixed-methods approach can help nurses with the difficult task of assessing the quality of dying among these residents and identify inconsistencies that cannot be found using scales alone, but no studies were found in this topic. WHAT THE PAPER ADDS TO EXISTING KNOWLEDGE: Through the Quality of dying in Long-Term Care Scale (QoD-LTC), nurses described symptom management, quality of care, and end-of-life appearance as adequate and end-of-life communication as lacking. Generally speaking, the scores on the scale were consistent with the data from semi-structured interviews conducted with nurses. In the semi-structured interviews, some of the concepts on the scale, including 'dignity', 'holistic' care, 'good relationships with healthcare professionals', and 'a peaceful death', are complex and not fully incorporated into nurses' practice in nursing homes when assessing residents diagnosed with dementia. This could be improved by using the SENSES Model or person-centred care frameworks. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: There is evidence of shortcomings among professionals in the correct use of concepts linked to psychological wellbeing, communication, therapeutic relationship, safety and participation, preservation of dignity, decision-making, and resident autonomy, which can be addressed using specific theoretical approaches developed in the field of mental health nursing. ABSTRACT: Introduction The complex nature of end-of-life assessment of individuals diagnosed with dementia would benefit from a mixed-methods approach that simultaneously assess the perception and response of nurses to standardized tools. Aim/Question To examine nursing professionals' perceptions of the quality of dying among residents diagnosed with dementia using the Quality of Dying in Long-Term Care settings (QoD-LTC) questionnaire and to identify consistencies and inconsistencies in their narratives. Method Mixed-methods study using concurrent triangulation with data integration for results and interpretation. Nurses from eight nursing homes assessed 117 residents diagnosed with dementia who died in the previous 3 months using the QoD-LTC scale. After informed consent was obtained (nurses/caregivers), 17 semi-structured scale-based interviews were conducted. Results Symptom management, quality of care, and end-of-life appearance were found to be adequate, while end-of-life communication was deemed insufficient. The qualitative and quantitative data were consistent for most of the items on the QoD-LTC. Discussion Concepts such as dignity, holistic care, good relationships, and peaceful death are complex and not fully incorporated into professional practice. Implications for Practice The results highlight the need for greater involvement of mental health nurses as well as improved communication, training, and specific tools tailored to residents diagnosed with dementia.