Meaning of Long-term Cancer Survivors Who Established and Have Managed a Self-help Group: Experiences over Ten Years after Diagnosis

ABSTRACT

Objective: In Japan, consultations by self-help groups (SHGs) and peers play an important role in supporting cancer survivors. This study aimed to clarify motives of cancer survivors who established and have managed an SHG for over 10 years. Methods: (1) Study participants: We recruited participants from cancer patient associations and support center of cancer core hospitals all over Japan. Among 18 applicants, 12 applicants who had experience with establishing an SHG were chosen as subjects. (2) Study procedure We conducted semi-structured interviews between December 2015 and August 2016 to ask about motives for establishment and intentions to continue. (3) Analysis: We analyzed the data both qualitatively and inductively with a focus on the significance of continuing the activity of SHG. Results: Reasons for long-term continuation of SHG were ‘a mission as a long-term survivor/witness’, ‘firm belief in the importance of sharing an experience with a cancer’, ‘significance of participant’s increasing autonomy and involving repaying is becoming a life work’, ‘continuation of the connection with medical staff’, ‘features of consultations by professionals and those by peer supports’, ‘equal relationship with medical staff’, ‘continuation by developing successors’, and ‘suggestions for medical care’. Conclusion: The study showed that a sense of fulfilment, a mission as a lifework, fear of recurrence even after 10 years, and desire to connect with medical staff supported the activity of SHG. For future research it is necessary to accumulate data targeting a longer term survivor more widely.