Psychosocial burden and unmet needs among caregivers of children with pediatric gliomas: a systematic review

Background

Caregiver stress is widely recognized as a major, chronic risk factor for the development of psychopathology, including depression, anxiety disorders, and burnout. Informal caregivers—those providing unpaid care to family members or friends—often face physical and emotional exhaustion, with studies indicating that 40% to 70% of caregivers report clinically significant symptoms of depression. Pediatric gliomas are rare and heterogeneous brain tumors characterized by highly variable clinical trajectories and prognoses. These conditions often entail substantial and sustained psychosocial burden for families, particularly in high-burden and life-limiting disease contexts. However, evidence on caregivers’ experiences remains fragmented and limited, with a critical lack of synthesis on unmet psychosocial needs across the illness trajectory. This gap is especially relevant for informing supportive care and pediatric palliative care pathways, and to increase resilience in caregivers.

Objectives

This systematic review aims to map the experiences of care and unmet psychosocial needs of families and caregivers of children and adolescents with pediatric gliomas, and to examine evidence-based psychosocial and/or family-centered interventions implemented in this population.

Methods

The review is conducted within the Horizon Europe HITGLIO project (Grant Agreement No. 101136835), in alignment with broader European efforts to strengthen family-centered and palliative care approaches. A systematic search was performed across major bibliographic databases targeting studies published from 2010 onwards. Eligible studies include quantitative, qualitative, mixed-methods, and interventional designs addressing caregiver distress, parental stress, burden, coping, family functioning, quality of life, perceived support, unmet needs, and psychosocial interventions. Titles and abstracts are currently being screened independently by two blinded reviewer pairs in accordance with predefined eligibility criteria. Any disagreements will be resolved through consensus discussion. Full texts of relevant studies will be retrieved and assessed for final eligibility, followed by data extraction and quality appraisal.

Expected results

A total of 1089 records were identified through searches of MEDLINE, PsycInfo, PubMed, and Scopus. After duplicate removal, 761 records were retained for title and abstract screening. As screening is ongoing, results describing the range of psychosocial needs reported by families, including key unmet needs across the illness trajectory (i.e., diagnosis, treatment, survivorship, and palliative care), will be extracted. In addition, the results and the characteristics of available psychosocial or family-centered interventions will be extracted for further analysis. Given the rarity of pediatric gliomas, attention will be paid to evidence gaps and underexplored areas. Updated data will be presented at the conference.

Conclusions

This review addresses a critical gap in the literature by providing a structured synthesis of psychosocial and unmet needs in families affected by pediatric gliomas. By identifying priority areas for intervention and support, findings are expected to inform more responsive, integrated, and family-centered care pathways, including within pediatric palliative care frameworks. This work contributes to ongoing European initiatives aimed at improving the quality of care and support for children with complex and life-limiting conditions and their families. Most importantly, these data will allow deriving new recommendations to improve the quality of life of caregivers to prevent the development of stress-related psychopathology.

PROSPERO: [1237344]; HITGLIO project [GRANT n. 101136835]; JA HOPE4KIDS [GRANT n. 101233078]

References

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