The psychological impact of cystic fibrosis: a meta-synthesis and interpretative phenomenological analysis

Vazirian Zadeh, Mehrnaz 2025. The psychological impact of cystic fibrosis: a meta-synthesis and interpretative phenomenological analysis. ClinPsy Thesis, Cardiff University. Item availability restricted.

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Abstract

Part one of the thesis contains a meta-synthesis of qualitative research on the psychological impact of cystic fibrosis (CF) newborn screening (NBS) outcomes on parents. Each year, millions of newborns undergo NBS to detect rare but serious conditions, including CF. Although the medical benefits of early detection are well recognised, the psychological impact on parents remains under-synthesised. Receiving unexpected results, whether a confirmed CF diagnosis, carrier status, or inconclusive outcome, can disrupt bonding, heighten anxiety, and alter perceptions of the child’s health, even when the child appears asymptomatic. Parents may experience shock, fear, guilt, confusion, and grief despite the child appearing well. Communication issues between healthcare providers and parents during NBS have been consistently linked to negative psychological outcomes, with misleading or unclear information having a lasting emotional impact. There is a lack of synthesis exploring the distinct psychological impact on parents in relation to the full spectrum of CF-related NBS outcomes. This meta-synthesis aimed to explore the psychological impact on parents of receiving CF-related NBS results. Searches were conducted across four databases, identifying 20 eligible qualitative studies related to the psychological impact on parents of receiving CF-related outcomes from NBS. Study quality was assessed using the Critical Appraisal Skills Programme checklist. Thematic synthesis was undertaken to develop analytical themes. Across the varied CFrelated outcomes, including CF-carrier status, inconclusive diagnosis, and confirmed CF, parents experienced significant emotional distress, diagnostic confusion, and disruptions to their perception of their child, family identity, and future. Three superordinate themes were identified: ‘Triggers of Uncertainty’, ‘Emotional and Relational Turbulence of Uncertainty’, and ‘Navigating Uncertainty and Regaining Control’. These themes reflect a dynamic psychological process, where uncertainty is first activated by the nature of the result and the way it is delivered, intensifies through emotional and relational strain, and is later navigated through personal meaning-making, coping mechanisms, and attempts to regain control. This review highlights several key psychological implications for professionals involved in CF NBS; specialist communication to shape illness representations, face-to-face delivery and timeliness, psychological support for ambiguity, and peer networks. Future research should prioritise inclusion of underrepresented populations and longer-term impacts, and clinical practice must prioritise effective communication, emotional support, and clarity to reduce the burden on families navigating early uncertainty. The second part of the thesis contains the first study conducted in the UK to investigate the experience of individuals with CF who identify as having undergone medical procedures that they found distressing. Specific medical experiences in CF, such as invasive procedures and prolonged hospital stays, may contribute to medical trauma and distress. Medical trauma refers to the emotional and physiological responses individuals may develop following painful or frightening medical experiences, such as serious illness, invasive procedures, or injury. Eight people with CF took part in semi-structured interviews and explored: (1) how individuals make sense of and interpret difficult or distressing medical experiences, such as unexpected hospital admissions and frightening procedures, (2) how they understand these experiences in the context of their wider lives, including relationships with care teams, family, and friends, and engagement with treatment and, (3) how individuals manage and cope with these experiences over time, including the strategies they employ and the impact on their sense of self and wellbeing. Through IPA, four superordinate themes emerged: (1) ‘Trauma, Vulnerability, and Loss of Control in CF Care,’ capturing the emotional and physical toll of medical interventions; (2) ‘Navigating Distrust, Anxiety, and Identity After Distressing Medical Experiences,’ showing how negative encounters shape self-perception and trust; (3) ‘Forging Independence: Self-Expertise, Adaptation, and Emotional Resilience,’ emphasising patient agency; and (4) ‘Support as a Buffer Against Distress,’ highlighting social and medical support. These findings extend previous research by deepening understanding of how people navigate distress, rebuild trust, and develop resilience in chronic illness. The findings align with and build upon previous research exploring the psychological impact of distressing medical experiences in CF. Despite these challenges, many individuals described a journey toward self-expertise, adaptation, and resilience, reflecting posttraumatic growth and self-efficacy. The findings highlight the emotional toll of medical trauma, the complexities of trust and identity in CF care, and the role of self-efficacy and social support in facilitating resilience. By integrating trauma-informed care, strengthening communication, and promoting patient empowerment, CF services can better support individuals navigating the psychological challenges of chronic illness. Future research should further explore the experiences of underrepresented groups and those who struggle with adjustment, ensuring a more comprehensive understanding of medical distress in CF.

Item Type:	Thesis (DClinPsy)
Date Type:	Completion
Status:	Unpublished
Schools:	Schools > Psychology
Subjects:	B Philosophy. Psychology. Religion > BF Psychology
Date of First Compliant Deposit:	26 August 2025
Last Modified:	27 Aug 2025 10:29
URI:	https://orca.cardiff.ac.uk/id/eprint/180636

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