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A Brain Tumor/Organotypic Slice Co-culture System for Studying Tumor Microenvironment and Targeted Drug Therapies
Published on: November 7, 2015
What are the experiences of the child with a brain tumour and their parents?
Louise Soanes1, Darren Hargrave, Lauren Smith
1Royal Marsden NHS Foundation Trust, Children's/Adolescent Unit, Downs Road, Sutton, Surrey SM2 5PT, United Kingdom. louise.soanes@rmh.nhs.uk
Insights
Children with brain tumours and their families face challenges navigating complex healthcare. A study found that clear information and a dedicated support person are crucial for improving their experience during treatment.
Area of Science:
- Pediatric Oncology
- Childhood Cancer Research
- Healthcare Experience Studies
Background:
- Brain tumours are a significant cause of childhood cancer in the UK, impacting around 350 children annually.
- Treatment for pediatric brain tumours is complex, lengthy, and often involves multiple healthcare settings and professionals.
- Children and families encounter numerous healthcare providers, necessitating effective communication and support systems.
Purpose of the Study:
- To explore the experiences of children and young people (C/YP) with brain tumours and their families within an NHS Trust.
- To identify challenges and valued aspects of healthcare services from the perspective of pediatric patients and their parents.
- To provide insights for improving future practice and service provision for C/YP with brain tumours.
Main Methods:
- A longitudinal, exploratory, and descriptive case study design was employed.
- Multiple data collection methods were used, including age-appropriate techniques for children (Mosaic Approach, draw and write, interviews) and semi-structured interviews with parents.
- Ten children (aged 4-13) and 18 parents (nine mothers, nine fathers) participated; data were analyzed using Ritchie and Spencer's (1994) process.
Main Results:
- Four key themes emerged: receiving/seeking information, navigating the healthcare system, impact on life, and sources of help.
- Information seeking and receiving posed challenges for both children and parents.
- Age-appropriate environments and activities aided adjustment and alleviated boredom; a consistent support individual was highly valued for navigating complex care.
Conclusions:
- Effective information delivery and a designated support person are critical for improving the healthcare experience of children with brain tumours and their families.
- Understanding patient and family perspectives is essential for enhancing service provision and clinical practice.
- The study highlights the need for integrated and family-centered care models in pediatric neuro-oncology.
Abstract:
Brain tumours are one of the most common forms of childhood cancer, affecting approximately 350 children in the UK each year (CancerBackup, 2005). The complex and long treatment for such tumours is often delivered in more than one place of care, as a result children and their families meet a large number of healthcare professionals from a variety of disciplines. The study described in this paper was undertaken to explore the experiences of children/young people (C/YP) with a brain tumour (and their families) being treated at a NHS Trust. A longitudinal, exploratory and descriptive case study was undertaken, using multiple methods of data collection. Three age appropriate data collection techniques were used with children; a modified Mosaic Approach (Clark and Moss, 2001) for children 4-6 years; the 'draw and write technique' with children aged 6-12 year olds, children over 12 years old were interviewed. Semi-structured interviews were also undertaken with parents. Ten children aged 4-13 years, nine mothers and nine fathers took part in the study. Data were analysed using the process described by Ritchie and Spencer (1994). Four themes are identified, receiving and seeking information, finding your way through, how life is affected, who and what help? The process of receiving and seeking information was a challenge for both parents and children. Age appropriate environment and activities helped with adjustment and boredom during long waits and treatment. The need for support from one individual to help families find their way through the complexity of healthcare was a persistent theme. Insights into what children and their parents value from the services offered and areas that they as users find challenging were identified from this study and the findings have implications for future practice and service provision.
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