"You either sink or you swim, and you're better off swimming": A qualitative study exploring the self-management experiences of soft tissue sarcoma survivors.

Abstract

To qualitatively explore the consequences of soft tissue sarcoma and its treatment experienced by survivors, the self-management strategies they use to deal with these consequences, and any factors that may act as barriers or facilitators to their self-management. Semi-structured interviews were conducted with seven soft tissue sarcoma survivors who had completed their primary treatment. Interviews were audio-recorded, transcribed and thematically analysed. Physical, psychological and social consequences of soft tissue sarcoma and its treatment were identified, with side-effects, physical restrictions, body image issues, fear of recurrence, feeling depressed, familial relationships and sexual activity being the most frequently reported. Nine different types of self-management strategy encompassing eighteen specific strategies were identified, including cognitive strategies, lifestyle changes and utilisation of resources. Personal, social and environmental facilitators of self-management were identified; being in a relationship, being at an appropriate life stage, and having support from family, friends and medical staff were most commonly reported. Finally, personal and environmental barriers to self-management included the adaptation period, ongoing complications, rareness of sarcoma and poor patient-healthcare provider communication. The findings of this study suggest that soft tissue sarcoma survivors, especially those who are younger and experience physical limitations, may find the immediate post-treatment period particularly challenging and may benefit from nurse-led self-management support.