The resilience of self-help groups with a role of survivorship care before and after the pandemic of coronavirus disease 2019

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Objective: The coronavirus disease 2019 (COVID-19) affected survivorship care and led to unexpected changes. Survivors are a vulnerable group with additional psychosocial distress, such as COVID-19 exposure and cancer progression. We aimed to clarify the resilience of self-help groups (SHGs) with a survivorship care role before and after the pandemic through support groups led by survivors independent of hospitals. Methods: Conducted among SHGs in Okinawa, Japan, from August-October 2020, the study interviewed 13 SHG administrators regarding the resilience of activities among SHGs via telephone or video conferencing platforms for 40-70 minutes. A qualitative study using thematic analysis to identify the recurring themes. Results: The primary role of SHGs included `regular activities' and `dissemination of information to the community.' The `regular activities' included "advising on relationships with medical professionals based on experiences" characterized by SHGs managed by survivors. Ongoing activities during the pandemic were classified into continuation, alternative activities`institution, and interrupted. A group held `regular activities' following infection control guidelines and others using the online system. Other groups categorized institution of alternative activities continued to communicate with other members using social networking services and shared reliable information about the pandemic and daily life and feelings. Some groups deliberately suspended the activities since their members were older adults. Conclusion: They adjusted their activities in novel situations such as the pandemic and faced challenges in maintaining similar survivorship care online. However, some groups were forced to decrease their activities due to the many activities requiring face-to-face interaction. Our study contributes to understanding the survivorship care of SHGs during the pandemic. Ryukyu Med. J., 42 (1～4) 67～76, 2023

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