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A stepped-care approach to self-management: a qualitative study among individuals with cancer and their caregivers
Samantha Wiesenfeld1, Sylvie Lambert2,3, Andréa Maria Laizner1,4
1Ingram School of Nursing, McGill University, 680 Sherbrooke West, 18th Floor, Montreal, H3A 2M7, Canada.
Purpose:
Patients and their caregivers (dyads) face 24/7 responsibility for managing cancer-related challenges. We explored the experience of patient-caregiver dyads using Coping-Together, a self-directed intervention designed to enhance access to the self-management information dyads needs, whereby types of guidance (lay vs clinician guidance) to use the materials varied over time.
Methods:
This descriptive qualitative study analyzed 19 semi-structured telephone interviews with patients and/or caregivers completing a pilot sequential multiple assignment randomized trial (SMART) of Coping-Together, where level of guidance varied according to a stepped care approach. The interviews explored participants' satisfaction with Coping-Together, including of the different types of guidance offered, and the self-management skills acquired. Audio-recorded and transcribed interviews were analyzed using thematic analysis.
Results:
Four themes were identified: (1) knowing what you need and when you need it; (2) dyadic approach: not always together (dyadic interventions best seen on a continuum instead of a dichotomy); (3) putting theory into practice: learning new self-management strategies (dyads focused on 3/6 booklets); and (4) lay versus healthcare professional guidance: benefits and challenges on use of Coping-Together. Participants generally found added guidance helpful, with those receiving both lay and clinician-led guidance expressing no clear preference between them.
Conclusion:
As healthcare transitions to community-based care, programs like Coping-Together play a critical role in supporting self-management for patients and their caregivers. Findings support the acceptance of lay guidance among participants, which can potentially be a cost-effective option to enhance intervention engagement; this will be examined in future studies.
Related Clinical Trials Registration:
NCT04255030.
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