Conectar
To describe the co-creation of the ‘Desired Dementia Care Towards End of Life’ (DEDICATED) approach to improve person-centred palliative care for individuals with dementia and to describe the experiences of healthcare professionals during the approach's implementation.
A needs assessment, comprising both qualitative and quantitative studies, informed palliative care needs of healthcare professionals, family caregivers and individuals with dementia. The approach was co-created with healthcare and education professionals, guided by the findings. Then, healthcare professionals were trained to implement the approach in their organizations. From April to June 2022, semi-structured interviews with actively engaged professionals were analysed using Conventional Content Analysis.
The needs assessment yielded six key themes: (1) raising palliative care awareness, (2) familiarization with a person with dementia, (3) communication about future care preferences, (4) managing pain and responsive behaviour, (5) enhancing interprofessional collaboration in advance care planning and (6) improving interprofessional collaboration during transitions to nursing homes. Interviews with 17 healthcare professionals revealed that active involvement in co-creating or providing feedback facilitated implementation. Overall, the DEDICATED approach was perceived as a valuable toolkit for optimizing palliative care for people with dementia and their loved ones.
Co-creating the DEDICATED approach with healthcare professionals facilitated implementation in daily practice. The approach was considered helpful in enhancing person-centred palliative dementia care.
This study underscores the importance of active involvement of healthcare professionals in the research and development of new interventions or tools for palliative care, which can influence the successful implementation, dissemination and sustained usage of the developed tools.
The developed approach can improve person-centred palliative care for individuals with dementia, ultimately improving their quality of life and that of their loved ones.
This study used the Consolidated Criteria for Reporting Qualitative Research.
No patient or public contribution.
To explore patient participation in decision-making during nursing care experienced by patients with chronic diseases, family members and nurses.
Focused ethnography.
This study included an 8-month fieldwork in a Chinese hospital. Fieldnotes from 90 h of participant observation and 30 semi-structured interviews (10 nurses, 13 patients, three family members, and four with both patients and family members present) were analysed using reflexive thematic analysis.
Patient participation in decision-making was facilitated in the form of co-determination, which respected patients' relational autonomy. However, participation required further development or was challenged in the form of unilateral determination, constraining relational autonomy. Interpersonal relationships among nurses, patients and family members played a significant role in promoting patient participation in decision-making.
A relational autonomy framework was identified to understand patient participation in decision-making within nursing care. While patient participation is encouraged and autonomy is respected in some situations, paternalistic approaches still persist in clinical practice.
Enhancing nurses' awareness of involving patients and family members in decision-making is needed. The findings highlight the need for better integration and implementation of existing guidelines to support healthcare staff, patients and family members. They also point to the importance of developing culturally relevant frameworks to promote patient participation in decision-making in nursing care.
This research provided insight into the experiences of chronically ill patients, family members and nurses regarding patient participation in decision-making during inpatient nursing care within a non-Western context. Interpersonal dynamics are highlighted as a key element influencing patient participation.
The study is reported using the COREQ checklist.
No patient or public contribution.
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