Peer-supporting for Teenagers With Cystic Fibrosis in the Transition of Care From Paediatric to Adult Services

Sponsor
Hospices Civils de Lyon
Study ID
NCT05795673
Status
Not Yet Recruiting

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Conditions

  • Cystic Fibrosis

Eligibility Criteria

Sex
ALL
Age
15 Years - 24 Years
Healthy Volunteers
Not accepted

Interventions

  • Peer support program (intervention phase) — OTHER
    Implementation and Evaluation: Intervention of mentor to provide peer support targeting psychosocial skills, coping and quality of life of adolescents with cystic fibrosis during the pediatric-adult transition The evaluation of the feasibility of the peer support program consists of assessing the effectiveness of its implementation in terms of its effect on the target audience, its acceptability to participants, and its implementation. The mentor and the mentee will be in contact once a month for a minimum of 3 months and a maximum of 6 months by telephone. The mentor will know the themes that the teenager would like to address in the context of peer support. The mentee will complete the various questionnaires provided in the protocol to answer the primary and secondary endpoints.

Study Details

In patients with cystic fibrosis, a deterioration in lung function around age 18, the age of transfer from pediatrics to adult care services, has been observed. Transfer is only one step in a transition process from pediatric to adult care taking place from age 12 to 24. Adolescence is a period of identity construction during which the disease alters self-image and self-esteem, and a period of empowerment in the management of the disease involving a re-appropriation of it. During this period, coping strategies and psychosocial skills are important to face all the issues that the adolescent encounters. Interventions for youth with chronic illnesses rarely incorporate this dimension. Peer support or peer-mentoring is one avenue for developing these coping skills. Peer support encompasses mutual support between people who are coping or have coped with similar challenging life experiences. Individuals with similar experiences would represent more credible role models to stimulate positive change in their peers. The function of peer support are to provide emotional, experiential, informational support.The effect of peer support improves social integration, coping skills, sense of self-efficacy of the peers being helped. Promotion of healthy youth behaviors by youth is the most widely evaluated youth engagement strategy in the community health sector. Peer-assisted devices have been tested to improve medication adherence and health status with youth with juvenile arthritis, asthma, and liver transplant recipients. By sharing their experience of a successful transition, young adults with cystic fibrosis may be able to help their adolescent peers better understand this transition. Our hypothesis is that implementing peer support with adolescents with cystic fibrosis improves their sense of self-efficacy, a dimension of coping skills.To our knowledge, there are no research studies on peer support in cystic fibrosis in France or abroad. Patients are recognized as partners capable of sharing their experiential knowledge with patients with a similar disease. But this raises questions about the recruitment, supervision, preparation for peer-help and the role of these patients; about the effects of their involvement for themselves (valorization, anxiety) and for their peers (re-assurance, feeling of personal effectiveness). This justifies conducting an exploratory study to assess the feasibility of a peer-support intervention for youth with cystic fibrosis.

Key Dates

First listed
Apr 3, 2023
Start date
Sep 1, 2023
Status verified
Aug 2023
Primary completion
Sep 1, 2026
Completion
Sep 1, 2026

Study Design

Enrollment
88 participants (estimated)
Allocation
NON_RANDOMIZED
Intervention model
SEQUENTIAL
Primary purpose
OTHER

Arms

  • Other: Group Peer support
    Intervention of mentor to provide peer support
  • No Intervention: Group Control
    Usual practices of accompaniment of the pediatric-adult transition

Primary Outcome Measure

Change from baseline Quality of life of adolescents in transition, measured by the French version of the Cystic Fibrosis Questionnaire - Revised (CFQ-R) at 6 months [ Time Frame: Baseline ; at 6 months ]

Central Contacts

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