Preparing for Death While Investing in Life: A Narrative Inquiry and Case Report of Home-Based Paediatric Palliative, End-of-Life, and After-Death Care

Preparing for Death While Investing in Life: A Narrative Inquiry and Case Report of Home-Based Paediatric Palliative, End-of-Life, and After-Death Care

Noyes M; Delaney A; Lang M; Maybury M; Moloney S; Bradford N

10.3390/children10111777\"

Children

2023

Palliative Care; Human; Male; Qualitative Studies; Bereavement; Support Psychosocial; Family Centered Care; Pediatric Care; Child; Methods; Collaboration; Interprofessional Relations; Diagnosis; Diffuse Intrinsic Pontine Glioma; Holistic Care; Home Health Care; Magnetic Resonance Imaging; Music Therapy; Narratives; Organ Donation; Pain Management; Pediatric Nurse Practitioners; Prognosis; Psychotherapy; Therapy

Paediatric palliative care is pivotal for addressing the complex needs of children with incurable diseases and their families. While home-based care offers a familiar and supportive environment, delivering comprehensive services in this context is challenging. The existing literature on home-based palliative care lacks detailed guidance for its organization and implementation. This qualitative narrative inquiry explores the organization and provision of home-based paediatric palliative care. Data were collected from healthcare practitioners using conversations, storytelling, and reflective journaling. Schwind's Narrative Reflective Process was applied to synthesize the data, resulting in an in-depth case description. The narrative approach illuminates the complexities of home-based paediatric palliative, end-of-life, and after-death care. Key findings encompass the importance of early-care coordination, interprofessional collaboration, effective symptom management, emotional and psychosocial support, and comprehensive end-of-life planning. Through the case study of the child patient, the challenges and strategies for providing holistic, family-centred care within the home environment are described. Practical insights gained from this report can inform the development and improvement of home-based palliative care programs, benefiting researchers, practitioners, and policymakers seeking to optimize care for children and families in similar contexts.

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February List 2024

http://doi.org/10.3390/children10111777\"