Related Experiment Video
Updated: Jun 18, 2026
Using Visual and Narrative Methods to Achieve Fair Process in Clinical Care
Published on: February 16, 2011
Quality of life and family functioning soon after paediatric brain tumour diagnosis: A cross-sectional observational
Kate Young1, Christine Cashion2, Stuart Ekberg3
1Cancer and Palliative Care Outcomes Centre, Centre for Healthcare Transformation, School of Nursing, Faculty of Health, Queensland University of Technology, 515 Ring Rd, Kelvin Grove, QLD, 4059, Australia; Children's Brain Cancer Centre at the Centre for Children's Health Research, Children's Health Queensland Hospital and Health Service, Queensland Government, 62 Graham St, South Brisbane, QLD, 4101, Australia.
Insights
Families with a child diagnosed with a brain tumor experience challenges in quality of life and family functioning early after diagnosis. Psychosocial support is crucial for caregivers during this difficult period.
Area of Science:
- Pediatric Oncology
- Childhood Brain Tumors
- Quality of Life Research
Background:
- Limited research exists on the quality of life for families with a child diagnosed with a brain tumor early in their illness trajectory.
- This period shortly after diagnosis is critical for establishing long-term outcomes and support needs.
Purpose of the Study:
- To describe the quality of life in children and their parents, and overall family functioning, within six months of a pediatric brain tumor diagnosis.
- To investigate if quality of life and family functioning differ across various subpopulations of affected families.
Main Methods:
- Cross-sectional analysis of baseline data from a longitudinal survey.
- Electronic surveys were administered to parents/carers of children with brain tumors at Queensland Children's Hospital.
- Univariate analyses and Pearson's correlation coefficient were used to examine relationships between variables.
Main Results:
- Seventy-nine families participated, with caregiver quality of life impacted by treatment (chemotherapy/radiation vs. surgery only) and time since diagnosis.
- Caregiver quality of life was lower for children undergoing chemotherapy/radiation and for those diagnosed longer ago (up to 6 months).
- One-third of families reported problematic family functioning, which was inversely correlated with caregiver quality of life.
Conclusions:
- Caregivers of children with brain tumors require enhanced psychosocial support in the early post-diagnosis phase.
- Family-centered care approaches that promote communication and cohesion are essential for improving family well-being.
Purpose:
There is scant scholarly exploration of quality of life in families with a child who has a brain tumour early after diagnosis, despite this being a pivotal point in their illness trajectory. We aimed to describe quality of life in children and their parents, and family functioning, within six months of diagnosis; and to examine if this differed for various subpopulations.
Method:
This is a cross-sectional analysis of baseline data of an ongoing longitudinal survey. Parents/carers of a child who had a diagnosis of a malignant or non-malignant brain tumour and were receiving care at the Queensland Children's Hospital were invited to complete an electronic survey. Univariate analyses were conducted with potential covariates and each dependent variable (child quality of life, caregiver quality of life, family functioning). Potential relationships between the outcome variables were explored through Pearson's correlation coefficient.
Results:
Seventy-nine diverse families completed the survey between August 2020 and September 2022. Caregiver quality of life did not differ by the child's tumour risk grade. It was lowest for those with a child who had undergone chemotherapy and/or radiation compared to surgery only, and for those with a child who had been diagnosed 6 months prior to survey completion compared to more recent diagnoses. A third of families reported problematic family functioning. Lower levels of problematic family functioning were associated with higher caregiver quality of life (r = -.49, p < .001).
Conclusions:
Our findings suggest caregivers need greater psychosocial support early after diagnosis, and supports the need for family-centred care that fosters communication and cohesiveness.
