The complex process of young people with cancer using online information and support


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Sarah Lea1,Ana Martins2,Sue Morgan3,Rachel Taylor2,Lorna Fern1
1,2University College London Hospitals,3Leeds General Infirmary and St James Hospital

Abstract

Background

For young people, the internet is a fully-integrated part of life and it is important that online services are developed specifically to exploit the potential of the internet to support young people with cancer. However, there is a dearth of evidence looking at the benefits and barriers to determine the effectiveness of existing social media platforms and online resources in meeting the needs of young people with cancer. 

We sought to understand how current digital/online needs are being met and explore young people‚Äôs information delivery preferences. 

Method

This was a Participatory Action Research study with four workshops and six interviews involving 22 young people with a range of cancers diagnosed aged 13-24 years.  Workshops consisted of participatory methods including focus group, interactive activities and individual thought, encompassing: online resources used, when, how and  what they are searching for, whether these resources were helpful and how they could be improved.

Results

Seven themes emerged which influence a young person's decision-making and actions when accessing online resources. 

1. Where young people are on their cancer timeline

2. External influencing factors

3. Emotional drivers

4. What young people search for online

5. Resources 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 emotional drivers and responses to searching, furthermore these can vary along along their timeline. 

Healthcare professionals should take into account all of the influencing factors when discussing potential online resource with young people. Future research will explore the views of professionals caring for young people with cancer on accessing online information and support.