Work

“I was never one of those people who just jumped right in for me”: patient perspectives on self-advocacy training for women with advanced cancer

Year: 2023

Type: article

Abstract: Purpose Patients with advanced cancer experience many complicated situations which can make self-advocacy (defined as the ability speak up for yourself in the face of a challenge) difficult. Few self-advocacy interventions exist, and most are atheoretical with minimal patient engagement. The purpose of this study is to describe participant perspectives of a novel, self-advocacy intervention Strong Together. Methods This was a qualitative cross-sectional descriptive among women receiving cancer care at an academic cancer center within three months of an advanced gynecologic or breast cancer diagnosis. Participants randomized to receive the intervention completed one-on-one interviews after the three-month intervention and had the option to share voice journals about their experiences. Inductive qualitative approaches were used to descriptively analyze interview transcripts and notes and voice journals. Descriptive content analysis approaches were used to group similar codes together into themes summarizing participants' experiences engaging with the serious game intervention. Results Participants (N = 40) reported that the Strong Together serious game was acceptable, noting that it was realistic and reflective of their personal experiences. Overarching themes included: seeing myself in most scenarios and wanting more content; giving me the go ahead to expect more; offering ideas for how to stand up for myself; reinforcing what I am already doing; and reminding me of what I have. Participants suggested adding additional content including diverse characters. Conclusion This study demonstrates that women with advanced cancer were receptive to a self-advocacy skills-building intervention. Future research should explore the mechanisms linking serious games to learning and health outcomes.

Source: Supportive Care in Cancer

DOI: 10.1007/s00520-022-07531-3