BMC Palliative Care最新文献

Background: Relatives play a crucial role when palliative care is provided at home. More advanced care at home places higher demands on relatives, taking great responsibility, facing challenges, and often lacking adequate knowledge and skills to provide care. Therefore, relatives need support from healthcare professionals, yet do not receive the needed support. This study aimed to elucidate relatives' experiences of support from healthcare professionals before and after a patient's death when general palliative care is provided at home.

Methods: A phenomenological hermeneutical method was used. The inclusion criteria were relatives of people who had died, involved in general palliative care at home. The sample consisted of 14 adult relatives involved in general palliative care at home between one week and 12 months. Data were collected through individual interviews between January and May 2025.

Results: Relatives needed to be seen as they felt left out; they felt an overwhelming responsibility; they needed to feel safe at home through guidance from and access to healthcare professionals; they felt the need to know what was happening and what to expect; and they needed help in processing the grief both before and after the patient's death. These themes formed the main theme: Standing next to but not being part of.

Conclusions: The findings of this study showed a lack of support for relatives before and after the patient's death but offer insights into what support relatives need from HCPs when general PC is provided at home. Relatives need to feel seen, informed and prepared, to feel safe when care is provided at home, and not feel overwhelmed by the responsibility of the situation. As research continuously reveals that relatives have unmet support needs, this highlights the need for tailored interventions and the targeting of available support actions for improved support. Since relatives play a crucial role in palliative care at home, continued work with education and training for relatives should be prioritised to support them in feeling prepared, obtaining necessary caregiving knowledge and skills, enabling them to cope with the situation at home.

Background: Patient-centred outcome measures (PCOMs), when well implemented, are powerful tools facilitating patient, family and clinical communication to better respond to patient needs. Their routine use in palliative care practice still faces challenges.

Objective: To update a systematic review of PCOMs implementation, reviewing and synthesising new evidence on facilitators, barriers, lessons learned, measures used, models of implementation, costs, implementation outcomes, and consequences in clinical practice.

Methods: We searched eight information sources supplemented by hand-searching and citations of the original review and studies identified by the expert advisory committee. This prospectively registered review included studies using a PCOM during clinical care of adult patients with advanced disease in all settings and extracted data on: PCOMs used, models of implementation, facilitators, barriers, lessons learned, costs, and implementation outcomes. We employed narrative synthesis and tabulated findings, following all PRISMA reporting guidelines.

Results: We included 114 studies. A major new facilitator was the integration of electronic/digital PCOMs into Information Technology systems. Main barriers remain largely unchanged and relate to healthcare professionals' beliefs. Implementation was highlighted as a complex intervention, needing planning, assessment and fine tuning throughout. Sixty-two included studies mentioned at least one implementation outcome. Eighteen models, frameworks and theories were identified in 25 included studies. No studies reported on costs of implementation.

Conclusion: This work reveals the complexity of implementing PCOMs in palliative care practice. The main clinical and research implications of our findings highlight the central importance of staff engagement and training staff in PCOM tools, communication strategies, and cultural competence.