People with high-grade brain tumours are frequently excluded from qualitative research due to assumptions regarding cognitive capacity, prognosis, and the complexity of symptoms such as fatigue and communication difficulties. Yet their perspectives are vital to understanding the lived experience of advanced neurological illness and to informing person-centred palliative care. This paper outlines key ethical and practical considerations for involving individuals with high-grade brain tumours in qualitative research. It discusses issues of consent, timing, communication, and researcher sensitivity to fluctuating capacity, highlighting the importance of flexibility and preparation. Strategies for adapting interview methods, supporting participant wellbeing, and maintaining ethical rigour are explored. The paper argues that with thoughtful design and clear ethical safeguards, the participation of people with high-grade brain tumours in qualitative research is both feasible and essential. Enabling their voices to be heard can enhance the quality, inclusivity, and humanity of palliative and supportive care research.
Emergency ambulance personnel are commonly the last health professionals to care for people in the moments before death and the first to provide families with bereavement care, particularly when death is sudden or unexpected. Despite this, paramedic training seldom discusses, simulates or assesses termination of resuscitation, or breaking bad news to family. This paper describes paramedicine students' experiences of a dedicated learning module designed to prepare them for patient death and caring for bereaved families. A lecture, small-group case studies and actor-led simulations were embedded into paramedic degree students' final year of study. Students shared their perspectives on learning about death, dying, and bereavement through focus groups or an online survey. Students found talking about death and supporting acute grief unfamiliar and uncomfortable. Eager to provide reassurance in a crisis, many expressed ongoing concerns about saying the wrong thing. Participants wanted greater integration of challenging communication and cultural responsiveness throughout their degree, noting opportunities for learning during clinical placements were precious but limited. Actor-led simulation of patient death and family grief presented an important but unfamiliar divergence from standardized, action-packed resuscitation scenarios. Greater acknowledgement of death, dying and bereavement throughout training could better prepare paramedics for the realities of emergency ambulance work.
Electronic Palliative Care Coordination Systems (EPaCCS) were developed to improve information-sharing and coordination for people approaching the end of life. Despite longstanding policy support, uptake across England remains highly variable, and their real-world impact is uncertain. This realist mixed-methods study evaluated the introduction of an EPaCCS within one clinical commissioning group (CCG) area, combining stakeholder focus groups, healthcare professional interviews, patient and carer interviews, and cross-sectional analysis of 1723 deaths across general practices. Our findings show that the EPaCCS did not embed into routine practice due to limited consultation during commissioning, inconsistent leadership, poor interoperability, unclear purpose, and minimal perceived added value for clinicians with access to comprehensive electronic health records. New national evidence highlights similar concerns around digital advance care planning (DACP), with persistent gaps in engagement, workflow alignment and system interoperability. Our refined programme theory indicates that successful EPaCCS implementation requires clear communication of purpose, multidisciplinary editing rights, shared digital infrastructure, stakeholder ownership, and ongoing evaluation. Lessons remain highly relevant as integrated care systems continue to expand DACP initiatives and adopt shared care records nationwide.
Background and AimAdolescents and young adults (AYAs) with advanced cancer experience significant physical, psychological, and existential distress, often compounded by developmental challenges. In low-and middle-income countries, there is a paucity of contextually relevant, low-cost psychosocial interventions within palliative care. Journaling has shown promise in improving emotional well-being but remains underexplored in this population. We aim to evaluate the effectiveness of guided journaling on person-centered outcomes among AYAs receiving specialist palliative care (SPC) and to explore their experiences with journaling.MethodsWRITE-in-AYAs is a phase 3, non-blinded, mixed-methods randomized controlled trial from a tertiary care centre in India. AYAs with advanced cancer will be randomized (1:1) to guided journaling plus usual SPC or usual SPC alone. The intervention will include guided journaling over four weeks. The primary outcome will be the change in quality of life, measured using the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being at day 7. Secondary outcomes will include changes in quality of life at one month and psychological distress, measured using the Hospital Anxiety and Depression Scale at day 7 and one month. Qualitative findings will explore perceived benefits, challenges, and meaning-making associated with journaling. Qualitative data will be obtained through semi-structured interviews and analysed thematically.DiscussionThis study will generate contextually relevant evidence from quantitative data and AYAs' lived experiences to inform a scalable, low-cost psychosocial intervention. This will inform patient-centred psychosocial care specific to AYAs receiving palliative care in resource-constrained settings.
