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Published on: November 7, 2015
Supporting families through paediatric brain tumour: Unmet needs and suggestions for change
Kate Young1,2, Christine Cashion2,3, Timothy Hassall3
1Cancer and Palliative Care Outcomes Centre, Centre for Healthcare Transformation, Queensland University of Technology, Brisbane, Queensland, Australia.
Insights
Parents of children with brain tumors need better psychosocial support, including emotional care for themselves and guidance navigating hospital systems. Support is also needed to minimize treatment trauma for their children.
Area of Science:
- Pediatric Oncology
- Psychosocial Health
- Family-Centered Care
Background:
- Paediatric brain tumours significantly impact children and their families.
- While psychosocial support is recommended, research on family experiences and service needs is limited.
Purpose of the Study:
- To explore families' experiences with paediatric brain tumours.
- To identify unmet psychosocial health service needs and gather suggestions for improvement.
Main Methods:
- Qualitative descriptive study involving interviews with 23 families.
- Families receiving care at Queensland Children's Hospital (2019-2022) were included.
Main Results:
- Parents expressed gratitude but highlighted unmet needs for broader family support.
- Key needs identified: accessible parental psychological support, guidance for hospital navigation, and support to reduce child's treatment trauma.
Conclusions:
- Findings underscore the necessity for enhanced family-centred psychosocial care in paediatric brain tumour treatment.
- A proposed intervention includes counselling and care coordination to support the entire family unit.
Objective:
From diagnosis and beyond, a paediatric brain tumour and its treatment impact the child and their family in a myriad of ways. While it is considered best practice to offer ongoing psychosocial support for all family members, there is little scholarly investigation of both families' experiences and the practical implications of offering such care. We aimed to explore families' experiences of paediatric brain tumour and their associated psychosocial health service needs.
Methods:
Families receiving care at the Queensland Children's Hospital in Brisbane, Australia, for a child (0-18 years) who had been diagnosed with a brain tumour between 2019 and 2022 were invited to be interviewed about their experiences. Using qualitative description, we analysed these interviews to identify families' unmet psychosocial health service needs and their suggestions for improvement.
Results:
Twenty-three clinically and socially diverse families were represented. While parents/carers expressed gratitude for the care their child had received, most also described unmet needs for the broader family. We identified three primary needs to be addressed: (1) parents want accessible psychological/emotional support for themselves; (2) parents/carers want additional guidance to navigate the hospital setting to reduce uncertainty and loss of control; and (3) parents want support to minimise treatment-associated trauma for their child.
Conclusions:
Our findings evidence the need for improved family-centred psychosocial care within paediatric brain tumour care in Queensland, Australia. We propose a counselling and care coordination intervention to support parents/carers to care for themselves, their child, and their family through an extremely challenging experience.
