Caring for a child with cystic fibrosis: the children's nurse's role
Cheryl McCullough1, Jayne Price
1School of Nursing and Midwifery, Queen's University Belfast.
Insights
Caring for a child with cystic fibrosis (CF) profoundly impacts family life, causing emotional, social, and financial disruption. Nurses are vital in supporting families to manage CF care and adapt to life-altering challenges.
Area of Science:
- Pediatric Nursing
- Family Psychology
- Chronic Illness Management
Background:
- Childhood diagnosis of cystic fibrosis (CF) causes significant life disruption for families.
- Family life is often impacted emotionally, socially, physically, and financially.
- Parents strive to maintain order amidst the challenges of a child's long-term illness.
Purpose of the Study:
- To review the psychosocial impact of caring for a child with cystic fibrosis on family life.
- To explore the literature on the challenges faced by families after a child's CF diagnosis.
- To highlight the role of healthcare professionals in supporting these families.
Main Methods:
- Narrative literature review.
- Synthesis of existing research on psychosocial aspects of pediatric cystic fibrosis care.
- Identification of key themes in family experiences.
Main Results:
- Families experience profound emotional, social, physical, and financial upheaval.
- Parents actively cope by establishing routines and seeking order.
- Children's nurses play a crucial role in supporting adaptation and skill development.
Conclusions:
- The diagnosis of cystic fibrosis necessitates significant family adaptation.
- Interdisciplinary nursing support is essential for empowering families and managing psychosocial challenges.
- Nurses act as educators, equipping families with knowledge and skills for lifelong care.
Abstract:
This article presents a narrative literature review of the psychosocial impact on family life of caring for a child diagnosed with cystic fibrosis. Diagnosis of long-term illness in a child causes major upheaval in the lives of both the child and family. Normal family life is often emotionally, socially, physically and financially disrupted. Amid such disruption, parents attempt to cope by creating a semblance of order in their lifestyle. Within an interdisciplinary approach to caring, the children's nurse plays a pivotal role in supporting families to establish such order and reconstruct their lives, while coming to terms with the knowledge that their child could die prematurely. In addition, the nurse, in his/her role as teacher and educator, empowers parents, children and young people with the knowledge to make informed decisions and assists parents in developing the skills (often technical) to care for their child. Cystic fibrosis is one such condition in childhood, and this article explores the main psychosocial issues experienced by families caring for their child following diagnosis of CF, as raised in the literature.
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