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

Title

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

Creator

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

Publisher

Children

Date

2023

Subject

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

Description

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.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

February List 2024

Collection

Citation

Noyes M; Delaney A; Lang M; Maybury M; Moloney S; Bradford N, “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,” Pediatric Palliative Care Library, accessed May 27, 2024, https://pedpalascnetlibrary.omeka.net/items/show/19496.