Understanding post-treatment self-management learning needs of young adults diagnosed with hematological cancer: a qualitative study

Purpose

To better support and promote an active role in survivorship, the purpose of this study was to identify and understand the perspective of young adults diagnosed with a hematological cancer in regard to their post-treatment self-management learning needs.

Method

An interpretative-descriptive study was conducted. Semi-structured individual interviews were carried out with eight young adults (ages 18 to 29 at the end of active treatment), diagnosed with a leukemia or lymphoma, who have not received active treatment for at least one year. Iterative content analysis of interview data was performed.

Results

According to participants, it is when young adults experience transitions or feel alone in dealing with post-treatment challenges that they can identify a learning need. Protective factors and precipitating factors related to young adults, their entourage and their care providers (e.g., young adult characteristics, level of support, quality of patient education) can contribute to shape their view of self-management learning needs. For young adults, an underlying motivation guides the identification of attitudes (autonomy, responsibility, acceptance), knowledge (physical and psychosocial challenges, rights to accommodation for disability) or skills (self-assessment, action-planning, self-advocacy) to be gained.

Conclusions

This study supports that young adults need more than information to feel confident in their ability to self-manage post-treatment challenges. Learning to self-manage is therefore a process of personal transformation, fueled by internal motivation, that also benefits from external support through collaboration between young adults, their entourage, and their care providers including oncology nurses.