The development of a family-focused intervention for parents of adolescents with cystic fibrosis
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Date
2026-01-31
Authors
Mullins, Dee
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Publisher
University College Cork
Published Version
Abstract
Cystic fibrosis (CF) is a lifelong genetic condition that requires intensive, family-centred management across childhood and adolescence. Parents play a central role in treatment adherence, emotional regulation, and the gradual transfer of responsibility as adolescents move towards greater autonomy. Although the introduction of CFTR modulator therapies has transformed physical health outcomes for many young people with CF, emerging evidence has suggested that psychosocial challenges for families have not been eliminated. Instead, adolescence in the modulator era is characterised by reconfigured uncertainty, shifting parental roles, and complex negotiations of autonomy, responsibility, and risk. Despite this, psychosocial research and intervention in CF has remained largely focused on early childhood, individual distress, or adherence behaviours, with limited attention to parents as ongoing recipients of structured psychological support during adolescence.
This thesis presents a programme of research examining family experiences of CF during adolescence in the modulator era and the development and preliminary evaluation of a family-focused psychological intervention for parents. The programme comprised two interlinked studies. First, a qualitative healthcare provider engagement study explored multidisciplinary perspectives on emerging family challenges in adolescent CF care and examined how these challenges might inform the development of a feasible, clinically relevant intervention. Second, a mixed-methods feasibility pilot evaluated the acceptability, practicality, and preliminary psychological impact of a newly developed one-day Family-Focused Intervention (FFI) for parents of adolescents with CF.
The provider engagement study identified heightened parental vigilance, emotional reactivity, uncertainty regarding treatment expectations, and difficulties negotiating adolescent autonomy as central challenges shaping family dynamics in the modulator era. These findings informed the design of the FFI, which integrated principles from Acceptance and Commitment Therapy, narrative approaches, and structured problem-solving within a brief, service-compatible format. The feasibility pilot examined uptake, retention, acceptability, and early psychological change using qualitative interviews and standardised self-report measures targeting emotional distress, psychological flexibility, and perceived family functioning.
Findings indicate that the FFI was acceptable to participating parents and feasible within existing service constraints. Qualitative process data suggested shifts in parental awareness, emotional regulation, and meaning-making following the intervention, while quantitative outcomes provided preliminary evidence of change in psychological flexibility and emotional wellbeing. Short-term changes in perceived family functioning were interpreted within a systemic and process-oriented framework, highlighting the importance of examining early activation effects alongside outcome measures.
Taken together, this thesis contributes novel empirical insight into family life in adolescent CF during the modulator era and demonstrates the feasibility of a provider-informed, family-focused psychological intervention embedded within routine care. The findings underscore the value of integrating stakeholder perspectives, targeting parental psychological processes, and examining process alongside outcome in early-stage intervention development.
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Keywords
Cystic fibrosis , Adolescence , Parenting , Family focused intervention , Clinical/provider engagement , Intervention development
Citation
Mullins, D. 2026. The development of a family-focused intervention for parents of adolescents with cystic fibrosis. DClinPsych Thesis, University College Cork.