Narrative Medicine to Enhance the Well-Being of Caregivers in the Care of Pediatric Patients with Complex or Serious Illnesses: A Systematic Review

Abstract

Background:

Being the caregiver of a pediatric patient with a complex or serious illness can be emotionally intense and stressful. Caregiver burden significantly affects the biopsychosocial well-being of both the child and the caregiver. Interventions such as Narrative Medicine (NM) may help alleviate this burden by enhancing emotional resilience and strengthening support networks.

Objectives:

This review aimed to explore which NM interventions can reduce the emotional burden of caregivers of pediatric patients under the age of 18.

Methods:

A systematic literature review was conducted to examine the benefits of NM interventions on caregiver well-being. Primary studies were included if they described NM interventions involving active written narration by caregivers (e.g., diaries, digital writing). Studies relying solely on oral storytelling or third-party facilitation (e.g., interviews, dignity therapy) were excluded. Only studies in English or Italian were considered; studies focusing on adult patients or targeting the patient rather than the caregiver were excluded. The review followed PRISMA guidelines. A comprehensive search was conducted in MEDLINE, Embase, CINAHL, Cochrane Library, and APA PsycInfo in July 2024 with no time limits. Study quality was assessed using JBI and NIH tools, and data were synthesized narratively and in tables.

Results:

The search identified 1078 unique references. After screening, four studies met the inclusion criteria. Interventions ranged from narrative diaries in pediatric intensive care units to online journaling. All studies showed feasibility and acceptability, with reported benefits including emotional expression, perceived support, improved coping, and greater self-reflection. Most participants were women (85%), although the review included all caregivers regardless of gender.

Conclusions:

In conclusion, NM appears to be a promising tool to support caregivers of pediatric patients with complex or serious conditions. While preliminary findings are encouraging, further research is needed to assess long-term outcomes. Structured workshops and the involvement of NM facilitators may further support caregiver well-being and reduce psychological burden.