Cancer affects everyone differently. Tumour types, treatment options, and local service provisions vary immensely – as do the individuals who are diagnosed. As such, research that aims to understand the experiences of those with cancer needs to consider the range of care pathways and treatment options. Yet, until last year, national cancer care experience surveys only included adults.
Understanding the experiences of young people with cancer and their caregivers is vital to developing a clear understanding of cancer provisions within and across the NHS. As PTCs are located across the country and serve wide geographical areas, the Under 16 Cancer Patient Experience Survey data represents this cohort’s experiences at a national and local level. This means that the data collected can inform and improve cancer care and treatment throughout the NHS.
However, ensuring that this data accurately reflects the range of demographics and circumstances present in England’s PTCs is no small feat. Medical and healthcare research programmes, including national patient surveys, are frequently confronted with challenges regarding accessibility and representativeness. Below, we outline some of the challenges and learnings from our work developing and implementing the Under 16 Cancer Patient Experience Survey.
Our first challenge occurred during the initial design phase. Like many organisations before the Covid-19 pandemic, our work at that time was predominantly face-to-face . To ensure the survey asked the most relevant and pertinent questions to children with cancer and their parents or carers, we organised several face-to-face discussion groups. These focus groups allow a trusting relationship to be developed between researchers and participants, enabling them to share detailed information about their experiences, generating rich data. Unfortunately, there were difficulties in arranging for a group of participants to travel to the same location due to availability and willingness to travel. Face-to-face interviews began as an alternative method, but almost immediately, we were confronted with the additional challenges posed by the onset of the Covid-19 pandemic in March 2020 – most notably an abrupt pause to face-to-face research.
After adjusting somewhat to working and communicating remotely, we restarted the interview process, this time conducting each one digitally. Children and parents adapted well to the new approach, showing a willingness to interact with us using Microsoft Teams video calls; we noticed that many young people seemed comfortable interacting with us in this way.
Once we had drafted our questions, it was time to test the survey using cognitive interviews. Survey participants were asked to read the questions during an interview to test their understanding and interpretation of the content. However, despite a genuine, consistent desire to participate, many young people were undergoing treatment and found it too overwhelming and tiring to take part. Fortunately, most were willing to reschedule to a more convenient time, but this meant that we had to build in more time for this stage to ensure the survey was appropriately tested.
Having enough people to develop and test the survey was essential to ensure it yielded high quality, robust data. The insights enable PTCs to make meaningful changes to children’s cancer care provision, ensuring it is truly person centred. We took various steps to achieve this:
Communication and publicity We increased our social media presence to ensure that we were reaching as many potential participants as possible. We also asked stakeholders such as children’s cancer charities, PTC contacts, and the survey’s Advisory Group members to share information and adverts. Importantly, we had to balance this with not over-exposing ourselves and annoying people.
Incentivisation People’s time is valuable, particularly for children who might be receiving intensive treatment and care for their cancer. Therefore, researchers must recognise the value of participants’ contributions to research. To encourage people to participate in the cognitive testing and to thank them for their help, we decided to double our initial incentive offer from £30 to £60.
Collaborating with suitable partners To increase our sample pool further, we worked with a trusted recruitment partner that holds a database of patients who have agreed to be contacted about participation in studies. Working together with another organisation expanded our reach, meaning that our sampling wasn’t limited to participants who were likely to be aware of Picker.
Altogether, these efforts meant that we could develop and thoroughly test the survey with the right amount of input from a range of children with cancer and their parents or carers. The perspectives of our respondents were instrumental in designing and testing the survey, ensuring young people with cancer and their families across England were truly central to its development.
The fieldwork for this year’s survey is running from April to June 2022 and the results will be published in Autumn. If you or anyone you know is invited to take part in the survey please respond and help us to improve cancer care provision across England.
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