Creating an upward spiral: A qualitative study of caregivers' experience of participating in a structured physical activity programme

Abstract

Family caregivers' physical and emotional well-being may be negatively impacted while in the caregiver role. Interventions to support caregiver health have largely focused on psychological support, with only a few studies to date evaluating the role of exercise. Of the exercise studies conducted, there has been one qualitative study examining caregivers' perspectives on the value and impact of this type of intervention. This qualitative study was part of a larger mixed methods investigation including a randomised controlled trial investigating the effects of a 24-week exercise programme for cancer caregivers conducted in western Canada. We aimed to explore cancer family caregivers' experience of participating in a structured exercise programme. We conducted face-to-face interviews with 20 of the participants from the exercise intervention and analysed transcribed data using Thorne's interpretive description as a guiding framework. Two main patterns characterised the experiences of the caregivers. The metaphor of a downward spiral represented the experience of being in the caregiver role, while the metaphor of an upward spiral represented the experience of participating in the exercise programme. Our findings highlight that caregivers valued the exercise programme, experienced positivity through exercise and the group-based format, and noticed improvements to their physical and emotional well-being.

Acceptability and Usefulness of a Dyadic, Tailored, Web-Based, Psychosocial and Physical Activity Self-Management Program (TEMPO): A Qualitative Study

“…Several studies document PA as acceptable to men with prostate cancer [ 49 , 50 , 51 ]. However, few [ 52 , 53 , 54 ] have examined its acceptability among caregivers, and the present study contributes to this emerging evidence-base. For instance, one qualitative study on the experience of cancer family caregivers participating in a 6-month PA program described an “upward spiral,” in which caregivers noted “positive ripple effects” from continuous participation in PA (namely allowing them to focus on themselves, increasing energy levels, and improved self-efficacy) [ 54 ].…”

“…However, few [ 52 , 53 , 54 ] have examined its acceptability among caregivers, and the present study contributes to this emerging evidence-base. For instance, one qualitative study on the experience of cancer family caregivers participating in a 6-month PA program described an “upward spiral,” in which caregivers noted “positive ripple effects” from continuous participation in PA (namely allowing them to focus on themselves, increasing energy levels, and improved self-efficacy) [ 54 ]. The present study further expands the notion of this “upward spiral” to include an interdependent perspective and highlights the joint benefits for the dyad as a whole.…”

ACE-Neuro: A tailored exercise oncology program for neuro-oncology patients – Study protocol

“…The qualitative phase of this study will be guided by an interpretive description methodology and constructivist philosophy [ 45 ]. Interpretive description is well-established and has been used to guide numerous health-disciplined qualitative papers [ [46] , [47] , [48] , [49] , [50] , [51] ]. With consent, patients who engage in this process will have candid photographs taken, and/or will be encouraged to take photos of their journey via their mobile device/personal camera, or a study-provided disposable camera.…”

ACE-Neuro: A Tailored Exercise Oncology Program for Neuro-Oncology Patients – Study Protocol

“…The qualitative phase of this study will be guided by an Interpretive Description methodology and constructivist philosophy [42]. Interpretive description is well-established and has been used to guide numerous health-disciplined qualitative papers [43-48]. With consent, participants who engage in this process will have candid photographs taken, and/or will be encouraged to take photos of their journey via their mobile devise/personal camera, or a study-provided disposable camera.…”