Helen Pearson, Advanced Nurse Practitioner in solid tumours, researcher and CCLG member, undertook a study to understand parents’ decision making in relapsed and refractory neuroblastoma. She explains how the findings have helped co-design, with parents, an important new web resource to support families.
When a child’s diagnosed with neuroblastoma, there’s a treatment protocol which guides parents and healthcare professionals through what treatment to give and when. Unfortunately, if the disease returns, there’s no protocol to follow for relapsed neuroblastoma (cancer that has come back) and limited protocols for refractory neuroblastoma (cancer resistant to treatment) with no clear endpoints. Therefore, parents of children with relapsed or refractory neuroblastoma often have to make repeated decisions about treatment, which could include various options such as off-protocol treatments, clinical trials and experimental therapies.
Previous research into parent decision making in children’s cancer has not focused on how parents make decisions repeatedly in these circumstances. Over many years of working with families, I’d noted parents voicing the difficulties of decision making and embarked on the REDMAPP (Relapse/ Refractory Decision Making Parent Process) research study (www.redmappstudy.co.uk) to explore this decision making and find a better way to support parents in making these decisions.
Why do parents need support?
It’s very difficult and it’s very tiring and it’s hard to know if you’re making the right decision. That’s the exhausting part of it because you want to make the decision that is right for your child.
Making treatment decisions for my child was a really difficult time for me and my husband. We felt so overwhelmed by the responsibility of trying to choose the right thing for him at the right time. The pressure as a parent is really immense because you feel like it’s all on you to make the right choices because ultimately this is a life and death scenario. It was really, really important to us to make sure we had explored every avenue and that caused a lot of pressure.
What did the study look at?
The REDMAPP study first explored how parents made repeated treatment decisions when their child had relapsed or refractory neuroblastoma. Eighteen parents (12 mothers and six fathers) were interviewed, who were making treatment decisions for their child at the time. Parents had made between one to six treatment decisions during 2020-2022. The interview data was analysed and generated four themes:
- The importance of time in being with their child and exploring treatment options
- Uncertainty and its relationship with treatment risks, side effects and outcomes due to the poor prognosis of relapsed and refractory disease and no standard treatment protocol
- Parent adjustment of their cognitive and emotional needs as they made repeated decisions
- Parent involvement and responsibility within decision making The findings were illustrated so that they could be easily understood and shared on YouTube (search for REDMAPP Findings from Parent Interviews).
A parent involved in the study said: “Knowing as a parent how difficult it is to make these decisions when it comes to treatment for your child after they have relapsed, this really drove me to get involved in this study, because I want to make sure that parents who are in this awful position feel supported and, regardless of the outcome, feel like they have left no stone unturned and have really done everything within their power to help their child.”
How were the findings used?
These findings informed the development of a web-based support tool co-designed with parents. Parent involvement was so important to ensuring the content and design would meet parents’ needs. This was achieved through a combination of 10 face-to-face and virtual workshops over a period of 14 months. Parents first reviewed the study findings and translated these into topics the support tool needed to address. These included:
- providing practical resources to support parents in making decisions such as information on clinical trials, second opinions and support from charities
- acknowledging and validating the emotional impact of decision making with videos from other parents talking about their experiences, clinical psychologists speaking on strategies to support decision-making processes and psychological support to maintain parents’ mental wellbeing
- developing resources to facilitate conversations with healthcare professionals, such as a downloadable list of questions to help with discussing treatment options, a consultant speaking about their role and how they work within the wider team, and the importance of partnership working to empower parents in their decision making
- providing a glossary of terms to inform knowledge development. This informed the content for the tool which was continuously reviewed throughout the whole development process
We then researched options by reviewing the published literature on support tools such as apps or websites that had been developed in healthcare. The decision for a website was based on accessibility and cost-effectiveness. A web-design company chosen had experience of developing childhood cancer charity websites. The development process considered the website brand, user navigation, design and layout in mobile and desktop formats.
A parent involved in co-design of the website said: “It’s been an honour working with Helen and other parents to bring this website to life. It provides so much information that can help parents and I wish we had something like this available when we were making treatment decisions.”
Once the website was developed, it was user tested with parents who hadn’t been involved in the development process. The purpose was to review the website’s accessibility, useability and acceptability. One said: “The videos are great, a fantastic resource which allows information giving in a different way. This is going to help so many parents, it’s incredible.”
What’s on the website?
The website has many resources that can support parents, containing a vast amount of information informed by parent experiences to empower them in their decision making. From interviews with parents, it was gleaned that those who had made repeated treatment decisions often experienced a breakdown in their relationships with healthcare professionals, particularly when treatment options in the UK had decreased. The website addresses ‘working with your child’s healthcare team’, which contains suggestions on how to work in partnership when making decisions, and downloadable questions to support conversations.
There are also videos by Dr Ramya Ramanujachar talking about the National Neuroblastoma Advisory Group and how to ask for a second opinion, and Dr Guy Makin on the role of the consultant, and how they work within a wider team to discuss treatment options for individual children, and the importance of making decisions together with parents.
Having healthcare professionals involved with videos throughout the website empowers parents to ask questions and seek additional advice. This is important as research with bereaved parents has shown many experience regret in relation to treatment decisions made. Facilitating open and honest conversations, however difficult these may be, helps empower parents and their involvement in their decisions.
The website has a feedback function embedded to help keep content up to date and relevant to parent needs. Future research will evaluate the usefulness and effectiveness of the website in relation to parents who are making these decisions in real time.
I’d like to say thank you to the parents who co-designed this website: Mandy Berriman, Hannah Cohen, Karl Cox, Kate Dixon, Ian Talton and Samantha Wilkinson.
From Contact magazine issue 105 | Winter 2024
Published date: 01 Dec 2024
