Putting children forward for epilepsy surgery: A qualitative study of UK parents' and health professionals' decision-making experiences
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Published on: May 20, 2016
Gemma Heath1, Shanara Abdin2, Rahima Begum2
1Department of Psychology, Aston University, Birmingham, UK; Department of Psychology, Birmingham Children's Hospital, Birmingham, UK.
Insights
Parents and professionals need better support and earlier involvement when deciding on pediatric epilepsy surgery. Providing more information and peer experiences can aid decision-making for child epilepsy surgery.
Area of Science:
- Pediatric Neurology
- Neurosurgery
- Healthcare Decision-Making
Background:
- Increasing access to early surgical intervention for medically intractable epilepsy in children is recommended.
- Understanding parental and professional decision-making processes for pediatric epilepsy surgery is crucial.
Purpose of the Study:
- To explore how parents and healthcare professionals make decisions about pediatric epilepsy surgery.
- To identify decisional support needs for families and professionals involved in pediatric epilepsy surgery.
Main Methods:
- The study involved individual interviews with nine parents of children who underwent epilepsy surgery and ten healthcare professionals.
- Multidisciplinary team (MDT) meetings were observed.
- Thematic analysis was used to analyze qualitative data.
Main Results:
- Parents sought more information and support, balancing surgery benefits against risks.
- Healthcare professionals emphasized a multidisciplinary approach and team collaboration.
- Non-medical professionals often took on the role of advocating for the family.
Conclusions:
- Involving families earlier in discussions about epilepsy surgery can improve decision-making.
- Providing additional information and access to support networks, such as connecting with other parents, is beneficial.
- Enhanced support systems are vital for informed decisions regarding pediatric epilepsy surgery.
Background:
Against a backdrop of recommendations for increasing access to and uptake of early surgical intervention for children with medically intractable epilepsy, it is important to understand how parents and professionals decide to put children forward for epilepsy surgery and what their decisional support needs are.
Aim:
The aim of this study was to explore how parents and health professionals make decisions regarding putting children forward for pediatric epilepsy surgery.
Methods:
Individual interviews were conducted with nine parents of children who had undergone pediatric epilepsy surgery at a specialist children's hospital and ten healthcare professionals who made up the children's epilepsy surgery service multidisciplinary healthcare team (MDT). Three MDT meetings were also observed. Data were analyzed thematically.
Findings:
Four themes were generated from analysis of interviews with parents: presentation of surgery as a treatment option, decision-making, looking back, and interventions. Three themes were generated from analysis of interviews/observations with health professionals: triangulating information, team working, and patient and family perspectives.
Discussion:
Parents wanted more information and support in deciding to put their child forward for epilepsy surgery. They attempted to balance the potential benefits of surgery against any risks of harm. For health professionals, a multidisciplinary approach was seen as crucial to the decision-making process. Advocating for the family was perceived to be the responsibility of nonmedical professionals.
Conclusion:
Decision-making can be supported by incorporating families into discussions regarding epilepsy surgery as a potential treatment option earlier in the process and by providing families with additional information and access to other parents with similar experiences.
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