Purpose:
This study aimed to explore the perspectives of individuals who have completed active treatment for early breast cancer. Through focus groups, we sought to understand post-treatment breast cancer survivors' views on what survivorship means, the issues and unmet needs they face, and involve participants in co-designing a survivorship program.
Methods:
Two focus groups were conducted in 2022 with n=18 participants who had completed active treatment for early breast cancer. Open-ended questions were used to facilitate discussions on the meaning of survivorship, psychosocial and emotional needs, physical and cognitive changes, lifestyle modifications, and strategies for stress management. The transcripts were analysed thematically to identify common themes and areas of unmet need.
Curtin University Human Research Ethics Committee (HREC) approved this study (HREC number HRE2022-0002).
Results:
Participants expressed varied interpretations of the term "survivorship," with some rejecting it due to its implications of finality. Key themes identified included a lack of adequate support post-treatment, the emotional impact of feeling "cast off" by the healthcare system, and significant physical and cognitive changes affecting daily life. Participants highlighted the need for personalised support programs that address psychological, physical, and social dimensions of recovery. There was strong interest in a co-designed survivorship program that includes psychoeducation, stress management techniques, tailored exercise, and nutrition guidance. Many participants also emphasised the importance of peer support and social connections in navigating their post-treatment self-management experiences.
Conclusion:
The findings underscore the complex, ongoing nature of breast cancer survivorship and the need for comprehensive, individualised support. A co-designed survivorship program that incorporates mindfulness-based interventions, physical activity, exercise, nutrition information, lifestyle guidance, and peer support could significantly improve the quality of life for breast cancer survivors by meeting common unmet needs post-treatment. These insights will inform the development of an evidence-based survivorship program aimed at addressing the unmet needs of this population.