Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2025 Jul;114(7):1515-1521.
doi: 10.1111/apa.70015. Epub 2025 Feb 6.

Narrative Diaries in Paediatric Palliative Care: A Scoping Review

Affiliations

Narrative Diaries in Paediatric Palliative Care: A Scoping Review

Anna Marinetto et al. Acta Paediatr. 2025 Jul.

Abstract

Aim: The aim of the study was to offer a comprehensive overview about literature on narrative diaries in paediatric palliative care.

Methods: A scoping review was conducted in accordance with the methods of Arksey and O'Malley.

Results: Among 83 studies, nine met the inclusion criteria. In the majority of publications (six research, 66%), the principal objective of employing diaries was to examine the disease experiences of children from the familial viewpoint. Three studies were focused on the feasibility of the diary to get information enhancing the understanding of real-life experiences of patients. The most common diarists are parents (five studies, 55%), followed by young patients (two studies, 22%) and close relatives (one study, 11%). The most common type of diary is the paper diary (seven studies, 77%). App-diary and audio recorders are also reported.

Conclusion: Current literature has demonstrated a limited use of diaries in paediatric palliative care. They could represent a valid tool that can enable healthcare providers an enhanced understanding of the child and family's experiences and needs comprehensively.

Keywords: narrative diary; oncology; paediatric palliative care; qualitative analysis.

PubMed Disclaimer

References

    1. World Health Organization (WHO), WHO Definition of Palliative Care (WHO, 2008), accessed June11, 2024, www.who.int/cancer/palliative/definition/en.
    1. F. Benini, D. Papadatou, M. Bernadá, et al., “International Standards for Pediatric Palliative Care: From IMPaCCT to GO‐PPaCS,” Journal of Pain and Symptom Management 63, no. 5 (2022): e529–e543, https://doi.org/10.1016/j.jpainsymman.2021.12.031.
    1. F. Benini, M. Spizzichino, M. Trapanotto, and A. Ferrante, “Pediatric Palliative Care,” Italian Journal of Pediatrics 34, no. 1 (2008): 4, https://doi.org/10.1186/1824‐7288‐34‐4.
    1. T. B. Kittelsen, V. B. Lorentsen, C. Castor, A. Lee, L. G. Kvarme, and A. Winger, “It's About Living a Normal Life: Parents' Quality of Life When Their Child has a Life‐Threatening or Life‐Limiting Condition – A Qualitative Study,” BMC Palliative Care 23, no. 1 (2024): 92.
    1. C. Britton and A. Moore, “Views From the Inside, Part 1: Routes to Diagnosis — Families' Experience of Living With a Child With Arthritis,” British Journal of Occupational Therapy 65, no. 8 (2002): 374–380.

Publication types

LinkOut - more resources