Nurse-led palliative care services facilitate an interdisciplinary network of care.

BACKGROUND: Caring for palliative patients at home is complex and challenging. Specialist palliative care exists to provide high quality of care in complex situations. This study aimed to describe the characteristics of a specialist nurse-led palliative care service in an urban Swiss region. METHODS: A qualitative study design adopting a grounded theory approach was used. Semi-structured interviews were conducted with 41 participants including family caregivers, home care nurses, referring services, treating physicians, specialist nurses and external politicians. In addition, statistical information was included. FINDINGS: Specialist nurses played an important role in building and maintaining an interdisciplinary network of care, necessary for the management of complex palliative situations. They performed tasks such as to "include" members and to "negotiate" the network of care with the family and providers. They "tailored" the support to patients and families' needs and as a result "empowered" the network of care. CONCLUSION: A nurse-led palliative care service facilitated interdisciplinary palliative home care to the benefit of all agents involved.

Decision-making in caring for people with dementia at the end of life in nursing homes.

BACKGROUND: Alleviating symptoms, fulfilling psychosocial needs, and the inclusion of family are among the criteria that determine care quality in palliative treatment. The care quality is especially inadequate for people with dementia (PwD) at the end of life. To improve this, it is necessary to understand the process of nurses' clinical decision-making in symptom management in the terminal phase of PwD. AIM: The aim of the study was to examine the decision-making process of symptom management for PwD in nursing homes in their terminal phase of life. DESIGN: A qualitative design was chosen with a constructivist approach. Individual interviews were conducted with nurses (n=32) in four Swiss nursing homes. RESULTS: 'Recount and reflect' plays a vital role in the care of PwD in terminal phase, enabling symptom recognition and facilitating symptom management. A process of thinking during the course of action enables nursing staff members to understand what, when, and how symptom changes have taken place. CONCLUSION: Highly-trained nurses need to support health care assistants through counselling, coaching, and leadership to help reduce the symptom burden experienced by PwD. Relatives are necessary to maintain an exchange of ideas regarding the appropriate treatment to reduce symptom burden.

A qualitative exploration of changes and mechanisms of changes in a psychoeducational intervention for family dementia caregivers.

BACKGROUND: 'Learning to feel better… and help better' is a psychoeducational intervention that aims to empower family caregivers of people with dementia by helping them cope better with the daily stress of dementia caregiving. The intervention has been adapted to a Swiss context and evaluated with a mixed-method design, yielding promising results in caregivers, such as a reduced subjective burden and improved self-efficacy. Qualitative findings have provided insight into potentially relevant intermediate changes that must be further explored to better understand how the intervention precipitates the achieved changes. We aim to qualitatively explore such changes, related mechanisms and key intervention components in the context of this intervention. METHODS: A constructivist grounded theory approach was used to achieve this aim. Changes, related mechanisms and key intervention components were identified by exploring the following: 1) longitudinal qualitative data, collected from 13 family caregivers via interviews performed before, during and after the intervention (39 interviews total) and 2) cross-sectional post-intervention interview data collected from 22 family caregivers (22 interviews). RESULTS: Experiencing calmness was the most important change for caregivers in the context of this intervention. The calmness model, developed based on the qualitative analysis, illustrates the intermediate changes that contributed to calmness, such as being able to cope with daily life and experiencing positive interactions with the family member with dementia. Related key intervention components were the coping strategy 'reframing', employed in diverse ways by the caregivers to reduce daily stress, and the didactic method 'active skills' training', which involved active participation by the caregivers and the guidance of a professional group leader. One important factor hampering changes in caregivers was having difficulties accepting the caregiver role or accepting the losses due to dementia. CONCLUSION: The calmness model offers valuable insight into how this intervention can benefit family caregivers and aid in developing interventions targeting similar mechanisms and changes. TRIAL REGISTRATION: ISRCTN13512408 (registration date 17.05.2021, retrospectively registered).

Relationship quality perceived by family caregivers of people with dementia in the context of a psychoeducational intervention: A qualitative exploration.

BACKGROUND: Caring for a person with dementia can be a challenging experience, often associated with chronic stress and a heavy burden on family caregivers. Dementia also impacts the relationship between the caregiver and the person with dementia. The quality of this relationship is, in turn, an important factor influencing the well-being of both dyad members. The psychoeducational intervention "Learning to feel better . . . and help better" has shown positive results regarding family caregivers' subjective burden, psychological distress, and self-efficacy. However, relationship quality has not been addressed in the context of this intervention. METHODS: A longitudinal constructivist grounded theory approach was used to explore relationship quality as perceived by caregivers, possible changes and intervention components facilitating or preventing such changes. Three qualitative, semi-structured interviews (before, during and after the intervention) were performed with 13 family caregivers from three different intervention groups. The resulting 39 interviews were analysed regarding individual caregiver trajectories, per time point for all caregivers and regarding specific caregiver subgroups. FINDINGS: A model focusing on sustaining relationship quality in dementia was developed. It shows strategies that family caregivers develop and apply to facilitate positive interactions and feelings of connectedness with their family members with dementia. It also indicates that mastering such strategies requires reflective skills based on specific knowledge of dementia and coping strategies, which can be enhanced through active skills training, in which caregivers are guided to work on their individual stressful situations. Factors hampering change included difficulties in accepting dementia-related changes. CONCLUSION: Findings suggest that psychoeducation, with active skills training based on caregivers' current daily life situations, providing systematic procedures to handle daily challenges and specific knowledge about the impact of the disease, could support them in developing and applying supportive strategies to sustain or improve their relationship to their family member with dementia.

Reliability, validity and relevance of needs assessment instruments for informal dementia caregivers: a psychometric systematic review.

OBJECTIVE: The objective of this review was to identify reliable and/or valid needs assessment instruments for informal dementia caregivers that are relevant for clinical practice, research and informal caregivers. INTRODUCTION: Informal dementia caregivers report important unmet needs at all stages of the disease. In addition, they often indicate that health care providers insufficiently attend and adapt to their multiple needs. A systematic and patient-centered assessment is needed to address this lack of knowledge and understanding. However, existing quantitative needs assessment questionnaires are limited in terms of psychometric testing. Qualitative measures are time-intensive and difficult to conduct on a large scale, with growing economic pressure. Information about the methodological quality and the characteristics of needs assessment instruments are crucial for clinicians and researchers to make informed decisions about the most reliable and valid tool for their specific purpose. INCLUSION CRITERIA: This review considered studies on multidimensional needs assessment instruments for informal dementia caregivers living at home. Psychometric studies or other types of studies with sufficient data to evaluate methodological quality were included if they considered at least one outcome for reliability or validity. METHODS: Studies in English, French or German and published until February 2019 were searched in four databases: Embase, MEDLINE, CINAHL and PsycINFO. After screening the titles, abstracts or full texts for eligibility, the provisional included studies were assessed for methodological quality with a standardized tool for systematic reviews of measurement properties. After data extraction using a standardized tool, the quality of the measurement properties was rated and compared using predefined quality criteria. RESULTS: Eighteen articles covering 14 different needs assessment instruments were included in the review. Eleven publications focused on the development or the evaluation of an instrument. In addition, a development report, a manual and five studies, not aimed primarily at validation but containing sufficient information about the development or the evaluation of the used instruments, were included. The systematic evaluation of the instruments revealed that half of them had excellent content validity. In contrast, structural validity was rarely examined, and mostly with an insufficient sample size or a questionable analysis. None of the instruments had optimally tested and good internal consistency. Regarding reliability, test-retest agreement was rarely tested and inter-rater agreement was evaluated using controversial procedures. Comparing the different instruments reviewed, the "Partnering for better health - living with chronic illness: dementia" had the best psychometric evidence, and the "Questionnaire of consultation expectations" was also partly supported, while most other instruments presently had limited psychometric soundness. CONCLUSIONS: Despite the good evidence for some psychometric properties, further developments in the field of needs assessment for informal dementia caregivers are needed, particularly regarding structural and construct validity, as well as test-retest reliability and sensitivity to change. To enhance conceptual clarity, the development of an underlying theoretical model of needs should be prioritized.

Reliability, validity and relevance of needs assessment instruments for informal dementia caregivers: a psychometric systematic review protocol.

REVIEW QUESTION/OBJECTIVE: The objective of this psychometric review is to identify needs assessment instruments for informal dementia caregivers which are:More specifically, the aim is to present an overview and an evaluation of the available needs assessment instruments, including: i) their psychometrics (reliability and validity) when available, and ii) their relevance according to the instrument characteristics, namely, their purpose, application method, administration burden, number of items and domain structure.