Online information and support needs of young people with cancer: a participatory action research study

Abstract

Purpose

The Internet is a fully integrated part of young people’s life and it is pivotal that online resources are developed to maximize the potential of the Internet to support those living with and beyond cancer. We sought to understand how young people with a cancer diagnosis use the Internet and to what extent information and support needs are met by existing online resources.

Patients and methods

This was a participatory action research study involving 21 young people participating in workshops and individual interviews. Participants aged 13–24 years were diagnosed with a range of cancers. Young people were on treatment or had completed treatment; some had experienced relapse. Workshops consisted of participatory methods including focus group discussions, interactive activities, and individual thought, encompassing online resources used; when, how and what they were searching for, whether resources were helpful and how they could be improved.

Results

Young people reported using communication platforms, entertainment sites, social media, medical websites, charity websites, and search engines to find information and support. Different online use and needs were described throughout their cancer timeline and online use was generally driven by negative emotions. Seven factors influenced access and engagement: 1) where young people were on their cancer timeline; 2) external influencing factors, such as family and environments; 3) emotional drivers; 4) what young people search for online; 5) resources, websites, and digital platforms used by young people; 6) availability, accessibility, and assessment of online information and resources; 7) emotional responses to using online resources.

Conclusion

The way young people access and engage with online resources is complex with multiple influencing factors including powerful emotional drivers and responses to Internet searching. There is a need to develop resources that support the holistic needs of young people and this should be done in collaboration with young people.

Video abstract

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Keywords:

• teenagers
• adolescents
• young adults
• Internet
• social media

Supplementary material

Focus group topic guide

Explain purpose of discussion. Cover confidentiality allowing all young people to have view. Challenge the idea, not the person, and please try not to mention hospital names or health care professionals.

1. Experiences of using the Internet to look for information Tell us a little of how you used the Internet to look for information and support for your cancer.

   Prompts:

   What was most helpful, sites, format.

   Any difficulties encountered

   Which ones they use the most

   Timing (eg, current use vs past use)

   Frequency of use (eg, multiple times per day or per week vs once or twice ever)

   Level of engagement (eg, passively browsing vs posting one’s own content)

   Purpose of use (eg, to seek support for oneself vs provide support for others)

2. Optimizing online information for young people with cancer

   What are the main changes you would make for online information more accessible for young people?

   Prompts: Cover each part of the cancer trajectory

   	–	Cancer symptoms
   	–	Cancer facts about types of cancer
   	–	Cancer treatments and procedures
   	–	Accessing information, formats such as websites, apps

Acknowledgments

This study was funded by Teenage Cancer Trust. The views expressed are those of the author(s) and not necessarily those of Teenage Cancer Trust. None of the funding bodies have been involved with study concept, design, or decision to submit the manuscript. This manuscript has not been published or submitted elsewhere but it has been presented in part at the second Global AYA Cancer Congress in Atlanta in December 2017. The presentation is not publicly available.

Disclosure

LAF, SM, and JC are funded by Teenage Cancer Trust. RMT and SL are funded by NIHR, and AM is funded by Sarcoma UK. The authors report no other conflicts of interest in this work.

Author contributions

RMT and LAF designed and co-ordinated the study; all the authors were involved in data collection; RMT, LAF, SL, and AM performed data analysis and drafted the manuscript. All authors contributed toward data analysis, drafting and revising the paper and agree to be accountable for all aspects of the work.