Using Community Engagement to Create a Telecoaching Intervention to Improve Self-Management in Adolescents and Young Adults With Cystic Fibrosis: Qualitative Study
BackgroundAdolescents and young adults (AYA) with cystic fibrosis (CF) are at risk for deviating from their daily treatment regimen due to significant time burden, complicated daily therapies, and life stressors. Developing patient-centric, effective, engaging, and practical...
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JMIR Publications
2025-01-01
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| Series: | Journal of Participatory Medicine |
| Online Access: | https://jopm.jmir.org/2025/1/e49941 |
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| author | Christina L Duncan Emily F Muther Jennifer J Lindwall Kristine Durkin Elizabeth Ruvalcaba Eliza Williamson Corrine Ahrabi-Nejad Evelyn Bord Angela Green Megan L Harrison Deepika Polineni |
| author_facet | Christina L Duncan Emily F Muther Jennifer J Lindwall Kristine Durkin Elizabeth Ruvalcaba Eliza Williamson Corrine Ahrabi-Nejad Evelyn Bord Angela Green Megan L Harrison Deepika Polineni |
| author_sort | Christina L Duncan |
| collection | DOAJ |
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BackgroundAdolescents and young adults (AYA) with cystic fibrosis (CF) are at risk for deviating from their daily treatment regimen due to significant time burden, complicated daily therapies, and life stressors. Developing patient-centric, effective, engaging, and practical behavioral interventions is vital to help sustain therapeutically meaningful self-management.
ObjectiveThis study aimed to devise and refine a patient-centered telecoaching intervention to foster self-management in AYA with CF using a combination of intervention development approaches, including an evidence- and theory-based approach (ie, applying existing theories and research evidence for behavior change) and a target population–centered approach (ie, intervention refinement based on the perspectives and actions of those individuals who will use it).
MethodsAYA with CF, their caregivers, and health professionals from their CF care teams were recruited to take part in focus groups (or individual qualitative interviews) through a video call interface to (1) obtain perspectives on the overall structure and logistics of the intervention (ie, Step 1) and (2) refine the overall framework of the intervention and obtain feedback on feasibility, content, materials, and coach training (ie, Step 2). Qualitative data were analyzed using a reflexive thematic analysis process. Results were used to create and then modify the intervention structure and content in response to community partner input.
ResultsFor Step 1, a total of 31 AYA and 20 clinicians took part in focus groups or interviews, resulting in 2 broad themes: (1) video call experience and (2) logistics and content of intervention. For Step 2, a total of 22 AYA, 18 clinicians, and 11 caregivers completed focus groups or interviews, yielding 3 major themes: (1) intervention structure, (2) intervention materials, and (3) session-specific feedback. Our Step 1 qualitative findings helped inform the structure (eg, telecoaching session frequency and duration) and approach of the telecoaching intervention. Step 2 qualitative results generally suggested that community partners perceived the feasibility and practicality of the proposed telecoaching intervention in promoting self-management in the face of complex treatment regimens. Extensive specific feedback was used to refine our telecoaching intervention before its efficacy testing in subsequent research. The diverse community partner input was critical in optimizing and tailoring our telecoaching intervention.
ConclusionsThis study documents the methods and results for engaging key community partners in creating an evidence-based behavioral intervention to promote self-management in AYA with CF. Incorporating the lived experiences and perspectives of community partners is essential when devising tailored and patient-centered interventions. |
| format | Article |
| id | doaj-art-e6f81dd07254485190d348703ed341ce |
| institution | Kabale University |
| issn | 2152-7202 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | JMIR Publications |
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| series | Journal of Participatory Medicine |
| spelling | doaj-art-e6f81dd07254485190d348703ed341ce2025-01-20T18:30:32ZengJMIR PublicationsJournal of Participatory Medicine2152-72022025-01-0117e4994110.2196/49941Using Community Engagement to Create a Telecoaching Intervention to Improve Self-Management in Adolescents and Young Adults With Cystic Fibrosis: Qualitative StudyChristina L Duncanhttps://orcid.org/0000-0001-5460-7981Emily F Mutherhttps://orcid.org/0000-0001-7981-205XJennifer J Lindwallhttps://orcid.org/0000-0002-3040-647XKristine Durkinhttps://orcid.org/0000-0002-7410-7228Elizabeth Ruvalcabahttps://orcid.org/0009-0001-2326-424XEliza Williamsonhttps://orcid.org/0000-0002-4769-8835Corrine Ahrabi-Nejadhttps://orcid.org/0000-0002-3013-0987Evelyn Bordhttps://orcid.org/0009-0002-6084-7222Angela Greenhttps://orcid.org/0009-0008-3495-970XMegan L Harrisonhttps://orcid.org/0000-0002-7139-1921Deepika Polinenihttps://orcid.org/0000-0001-8551-3734 BackgroundAdolescents and young adults (AYA) with cystic fibrosis (CF) are at risk for deviating from their daily treatment regimen due to significant time burden, complicated daily therapies, and life stressors. Developing patient-centric, effective, engaging, and practical behavioral interventions is vital to help sustain therapeutically meaningful self-management. ObjectiveThis study aimed to devise and refine a patient-centered telecoaching intervention to foster self-management in AYA with CF using a combination of intervention development approaches, including an evidence- and theory-based approach (ie, applying existing theories and research evidence for behavior change) and a target population–centered approach (ie, intervention refinement based on the perspectives and actions of those individuals who will use it). MethodsAYA with CF, their caregivers, and health professionals from their CF care teams were recruited to take part in focus groups (or individual qualitative interviews) through a video call interface to (1) obtain perspectives on the overall structure and logistics of the intervention (ie, Step 1) and (2) refine the overall framework of the intervention and obtain feedback on feasibility, content, materials, and coach training (ie, Step 2). Qualitative data were analyzed using a reflexive thematic analysis process. Results were used to create and then modify the intervention structure and content in response to community partner input. ResultsFor Step 1, a total of 31 AYA and 20 clinicians took part in focus groups or interviews, resulting in 2 broad themes: (1) video call experience and (2) logistics and content of intervention. For Step 2, a total of 22 AYA, 18 clinicians, and 11 caregivers completed focus groups or interviews, yielding 3 major themes: (1) intervention structure, (2) intervention materials, and (3) session-specific feedback. Our Step 1 qualitative findings helped inform the structure (eg, telecoaching session frequency and duration) and approach of the telecoaching intervention. Step 2 qualitative results generally suggested that community partners perceived the feasibility and practicality of the proposed telecoaching intervention in promoting self-management in the face of complex treatment regimens. Extensive specific feedback was used to refine our telecoaching intervention before its efficacy testing in subsequent research. The diverse community partner input was critical in optimizing and tailoring our telecoaching intervention. ConclusionsThis study documents the methods and results for engaging key community partners in creating an evidence-based behavioral intervention to promote self-management in AYA with CF. Incorporating the lived experiences and perspectives of community partners is essential when devising tailored and patient-centered interventions.https://jopm.jmir.org/2025/1/e49941 |
| spellingShingle | Christina L Duncan Emily F Muther Jennifer J Lindwall Kristine Durkin Elizabeth Ruvalcaba Eliza Williamson Corrine Ahrabi-Nejad Evelyn Bord Angela Green Megan L Harrison Deepika Polineni Using Community Engagement to Create a Telecoaching Intervention to Improve Self-Management in Adolescents and Young Adults With Cystic Fibrosis: Qualitative Study Journal of Participatory Medicine |
| title | Using Community Engagement to Create a Telecoaching Intervention to Improve Self-Management in Adolescents and Young Adults With Cystic Fibrosis: Qualitative Study |
| title_full | Using Community Engagement to Create a Telecoaching Intervention to Improve Self-Management in Adolescents and Young Adults With Cystic Fibrosis: Qualitative Study |
| title_fullStr | Using Community Engagement to Create a Telecoaching Intervention to Improve Self-Management in Adolescents and Young Adults With Cystic Fibrosis: Qualitative Study |
| title_full_unstemmed | Using Community Engagement to Create a Telecoaching Intervention to Improve Self-Management in Adolescents and Young Adults With Cystic Fibrosis: Qualitative Study |
| title_short | Using Community Engagement to Create a Telecoaching Intervention to Improve Self-Management in Adolescents and Young Adults With Cystic Fibrosis: Qualitative Study |
| title_sort | using community engagement to create a telecoaching intervention to improve self management in adolescents and young adults with cystic fibrosis qualitative study |
| url | https://jopm.jmir.org/2025/1/e49941 |
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