Advance care planning (ACP) aligns serious-illness care with patient values when capacity is lost. Whether ACP reliably improves goal-concordant care and family outcomes is mixed and evolving, and informal family caregivers, who carry out most decisions, are not consistently centered. How caregivers describe the ACP experience and its link to quality of life in public online forums is less examined. We conducted an inductive qualitative content analysis of 40 initial posts and 263 responses (n = 303) from two publicly accessible U.S. online caregiver communities, AgingCare and Reddit r/CaregiverSupport, collected in May 2026. Posts were included if they referenced a care decision, advance care planning (or its absence), or a quality-of-life concern for the recipient or caregiver. Two researchers coded independently and reconciled by consensus. The analytic lens focused on instances in which caregivers described ACP, its absence, or its enactment, and on how those moments were linked to quality of life. Six themes were identified. (1) Plans were often absent, outdated, or unenacted at the moment of decision. (2) Quality of life was contested between recipient and caregiver, with quality-of-life goals sometimes carried by the caregiver rather than the patient. (3) System and legal scaffolding, including eligibility, insurance, and document execution, narrowed what was possible regardless of preference. (4) Caregiver quality of life eroded as a structural feature of the role, including measurable clinical effects. (5) The decision was emotional, not procedural; questions of consent were paired with questions of moral responsibility. (6) The forums themselves functioned as informal ACP and quality-of-life support in real time. In these forums, caregivers and recipients often held differing views of a livable life; those differences, with what insurance, eligibility, and law permitted, complicated how plans were carried out. Because the sample is small and forum content skews toward difficulty, these accounts are illustrative, not representative. Narrowing the gap between planning and quality of life may require treating caregiver quality of life as a planning outcome, addressing eligibility and authority before a crisis, bringing psychosocial support into the decision, and engaging the online spaces caregivers already use.
Palliative care in Nigeria faces significant challenges due to limited resources, inadequate healthcare provider education, and minimal integration into the national healthcare system. Identifying and prioritizing research and clinical practice areas are essential for improving the quality of palliative care services and ensuring that patients with life-limiting illnesses receive comprehensive care. This study aimed to identify the top research and clinical practice priorities for palliative care in Nigeria, focusing on key areas that require urgent attention. A Nominal Group Technique (NGT) was employed to gather insights from a diverse group of stakeholders, including palliative care providers, healthcare professionals, policymakers, students and patients' caregivers. Participants were asked to identify and rank the most critical areas for research and clinical practice in palliative care. The data collected were analyzed qualitatively to extract common themes and priorities, which were then ranked based on their importance and relevance. The study identified several key priorities for palliative care in Nigeria, with the top 3 research priorities noted to be mental health and emotional support, healthcare provider education, and pediatric palliative care. The top 3 clinical practice priorities were multidisciplinary care followed by breaking bad news and caregiver well-being which were tied for second place and pain management skills in fourth place. The lack of a cohesive national policy framework and insufficient public awareness were also recognized as significant barriers to effective palliative care delivery. These stakeholder-informed priorities for research and clinical practice offer a preliminary agenda for advancing palliative care in Nigeria. Targeted interventions, policy reforms, and multidisciplinary collaboration are needed to overcome existing challenges to translate these priorities to practice. This will work towards ensuring that all Nigerians in need of palliative care receive compassionate and comprehensive care.
Palliative care education is essential for the development of integrated palliative care services. This study reviews the development and structure of palliative care education in Slovenia between 2012 and 2025, with particular emphasis on education for healthcare professionals. We conducted a retrospective descriptive review using data from the Slovenian Medical Chamber and the Slovenian Association for Palliative and Hospice Care. Educational activities were analysed according to duration, target groups and participation, with additional examination of structured postgraduate programmes. Between 2012 and 2025, 23 courses of the 60-hour Step by Step programme enrolled 702 participants, including 375 physicians and 263 nurses. Of these, 179 physicians obtained the Diploma in Palliative Care and 118 nurses completed the theoretical programme requirements; 43 of these nurses also completed additional practical training. Six 40-hour seminars were completed by 178 residents, while 27 courses of the 15/20-hour From Theory to Practice programme attracted 566 participants. Mandatory 60-hour paediatric palliative care education involved approximately 120 paediatric residents, and six regional 10-hour courses attracted 247 healthcare professionals. Palliative care education has expanded and diversified in Slovenia, but further integration into mandatory medical training and development of advanced supervised clinical training remain priorities.
Annually, over 1000 babies die in the neonatal period and receive end-of-life (EoL) care on neonatal units in the United Kingdom. There are wide reported variations in provision and no accepted measures with which to assess the quality of EoL services. As part of a programme of work to identify a Core Outcome Set (COS) for neonatal palliative care, this qualitative study aimed to explore the experiences, perceptions and priorities of stakeholders (parents and healthcare professionals) of neonatal palliative care, to identify outcomes for a future Delphi survey. Semi-structured online interviews were conducted with parents (n = 17), and healthcare professionals (n = 21) with lived or professional experience of neonatal palliative care respectively (total n = 38). Interviews were recorded. Verbatim transcripts were analysed in NVivo using a modified or hybrid form of thematic analysis based upon the Framework Method. Interviews were inductively analysed prior to deductively mapping identified themes onto the World Health Organisation (WHO) domains of palliative care (physical, psychological, spiritual, social). Parent and healthcare professional interviews were analysed separately. Results were compared to findings of a previously published systematic review to identify evidence gaps in the literature. Thirteen themes were identified across all interviews; ten themes were shared between parents and healthcare professionals and a further three themes were identified from parent interviews alone. Five themes fitted within the physical domain (decision making, planning for EoL care, symptom management, parallel planning, maternal care); four themes in the psychological domain (antenatal care, preparation for EoL, bereavement care, multiple birth family support); two in the spiritual domain (individualised care, funeral planning), and two in the social domain (advance care planning, service provision). Only four of thirteen themes had been identified in the previously published systematic review. Parents and healthcare professionals identified potential outcomes across all WHO domains from which to evaluate neonatal palliative care, and which had not previously been highlighted in the literature. The findings demonstrate the multifaceted nature of neonatal palliative care and emphasise the importance of communication, family support, and equal access to services. Outcomes identified in this study will be assimilated with findings from our systematic review to develop a COS for neonatal palliative care.
There are currently no tools available for observing the psychological processes that guide shared decision-making at the end-of-life. The present article aims to formalise a methodological framework for the design of an exploratory scientific study based on participant observation by psychologists. The primary objective of the tool is to facilitate the observation of the psychological distress of patients and the psychological experiences of all those involved in shared medical decision-making (patients, relatives, professionals) during the end-of-life decision-making process. An observation tool for psychologists working in palliative care was developed through a targeted literature review. A preliminary version of the observation tool was submitted to 11 expert psychologists practising in end-of-life care, via a qualitative consensus process. A quantitative approach was implemented, complemented by an iterative integration of expert opinions based on the feedback gathered and the content of individual and group interviews. The statistical analysis was focused on measures of central tendency, dispersion, and distribution. The final iteration of the observation tool comprises 57 items. Descriptive analysis of the 44 complete datasets were used to examine the distribution and variability of the responses, and to inform the refinement of the observation framework. This study resulted in the development of a preliminary, structured, observation framework for exploring the psychological dimensions of SDM at the end-of-life from an intersubjective perspective. The framework is intended to facilitate structured participant observation, rather than providing a psychometric measure of psychological distress or decision-making ability. It reliability, validity, interpretative consistency and clinical impact must be established through further empirical investigation.
