Experience of parenting children and adolescents with cystic fibrosis: A systematic review of qualitative studies and meta-synthesis.

BACKGROUND

Caring for children with cystic fibrosis (CF) poses significant emotional and practical challenges for parents and caregivers. Understanding their experiences is crucial to improving care.

METHODS

A systematic review was conducted of qualitative studies on the experiences of parents and caregivers of children and adolescents with CF. Multiple databases were searched. Studies were independently screened and appraised. A meta-synthesis approach was used to integrate the findings.

RESULTS

Key themes were identified in 27 studies, mainly from English-speaking countries: impact of diagnosis, routine care demands, healthcare relationships, faith, adolescent transition, support systems, uncertain future, palliative care, and COVID-19 challenges. Caregivers face emotional distress, guilt, and burden, along with the limitations of the healthcare system and social stigma. Optimism about treatments coexisted with fear and uncertainty. Adolescent transition brought challenges in terms of autonomy and adherence to treatment. Spirituality was both a coping tool and a source of conflict.

CONCLUSIONS

Caregiving for children and adolescents with CF is complex and multifaceted. Clear communication, continuous psychosocial support, and respect for both emotional and spiritual needs are vital, especially upon receiving the diagnosis and during adolescence. Open discussions on sensitive topics, such as palliative care, can improve caregiver experiences and outcomes.