TY - JOUR
T1 - A mindfulness-based intervention for adolescents and young adults (AYA) with cancer
AU - Perumbil Pathrose, Sheeja
AU - Wells, Jonny
AU - Everette, Bronwyn
AU - Ussher, Jane
AU - Salmonson, Yenna
AU - Patterson, Pandora
AU - McDonald, Fiona
AU - Biegel, Gina
AU - Ramjan, Lucie
PY - 2022
Y1 - 2022
N2 - Background/Purpose: Cancer can have a significant negative impact on a young person's quality of life. While mindfulness"based interventions can improve psycho"social well"being, adherence to and accessibility of face"to"face supports can be a barrier to participation. The aim of this study was to design and develop an evidence"based, user"centered online intervention in the form of a digitally based mindfulness eBook. Methods: The study adopted a user"centered design during several phases of intervention development, and this involved discussions with expert research partners, workshops with young people with cancer (n = 6) and focus groups with health professionals (n = 5) and six young people with cancer who did not attend the workshop. Results: A trauma informed, mindfulness"based interactive eBook with six modules was developed by a mindfulness research team in collaboration with health professionals and AYA. The content, design, activities, and the platforms were subsequently informed and modified based on feedback received from discussions across the design/ development phases. Qualitative data from the workshop and focus group revealed a number of themes: a less is more approach to minimize reader burden; keep content, instructions, and practices simple for potentially traumatized and unwell readers; ensure the eBook is highly experiential, including interactive quizzes, optional note"taking sections and reflective journaling within each module. Feedback received were used to revise the eBook ensuring ease of access to the book, adopting a simplified and calming approach to the mindfulness explanations and practices, incorporating immersive mindfulness audio recordings, and optional quiz/knowledge check activities to confirm understanding of the main concepts, in all modules. Conclusions and Implications: This study is the first to use a usercentered design to tailor a mindfulness intervention to AYA with cancer. The involvement of experts in cancer care and young people themselves contributed significantly to the development of a potentially appropriate and acceptable mindfulness intervention for AYA with cancer.
AB - Background/Purpose: Cancer can have a significant negative impact on a young person's quality of life. While mindfulness"based interventions can improve psycho"social well"being, adherence to and accessibility of face"to"face supports can be a barrier to participation. The aim of this study was to design and develop an evidence"based, user"centered online intervention in the form of a digitally based mindfulness eBook. Methods: The study adopted a user"centered design during several phases of intervention development, and this involved discussions with expert research partners, workshops with young people with cancer (n = 6) and focus groups with health professionals (n = 5) and six young people with cancer who did not attend the workshop. Results: A trauma informed, mindfulness"based interactive eBook with six modules was developed by a mindfulness research team in collaboration with health professionals and AYA. The content, design, activities, and the platforms were subsequently informed and modified based on feedback received from discussions across the design/ development phases. Qualitative data from the workshop and focus group revealed a number of themes: a less is more approach to minimize reader burden; keep content, instructions, and practices simple for potentially traumatized and unwell readers; ensure the eBook is highly experiential, including interactive quizzes, optional note"taking sections and reflective journaling within each module. Feedback received were used to revise the eBook ensuring ease of access to the book, adopting a simplified and calming approach to the mindfulness explanations and practices, incorporating immersive mindfulness audio recordings, and optional quiz/knowledge check activities to confirm understanding of the main concepts, in all modules. Conclusions and Implications: This study is the first to use a usercentered design to tailor a mindfulness intervention to AYA with cancer. The involvement of experts in cancer care and young people themselves contributed significantly to the development of a potentially appropriate and acceptable mindfulness intervention for AYA with cancer.
UR - https://hdl.handle.net/1959.7/uws:67959
M3 - Article
SN - 1057-9249
VL - 31
SP - 90
EP - 90
JO - Psycho-Oncology
JF - Psycho-Oncology
IS - S1
ER -
