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Caring for a child with a progressive illness during the complex chronic phase: parents' experience of facing
1Cystic Fibrosis Programme, British Columbia's Childrens Hospital, Vancouver, Canada.
Insights
Parents caring for children with progressive life-threatening illnesses face ongoing adversity. This qualitative study highlights their challenges and the need for nursing support during complex chronic conditions.
Area of Science:
- Pediatric Palliative Care
- Family Caregiving Studies
- Qualitative Health Research
Background:
- Caring for a child with a progressive life-threatening illness presents unique challenges for families.
- Parents navigate complex care needs outside of the terminal phase, requiring continuous adaptation.
- Understanding the lived experiences of these caregivers is crucial for developing effective support systems.
Purpose of the Study:
- To explore the day-to-day experiences of parents providing home care for a child with a progressive life-threatening illness.
- To conceptualize parental caregiving as a process of 'facing adversity' amidst evolving health conditions.
- To identify implications for nursing practice to better support these families.
Main Methods:
- Qualitative study employing a naturalistic research design.
- Phenomenology was utilized to understand the lived experiences of parents.
- In-depth exploration of parental experiences at a specific point in the child's illness trajectory.
Main Results:
- Parental caregiving is characterized by a continuous process of 'facing adversity'.
- Parents must constantly redefine and manage changes stemming from the child's progressive condition.
- Challenges include normalization, chronic sorrow, and an increased burden of care, particularly for mothers.
Conclusions:
- The findings underscore the profound and ongoing challenges faced by parents of children with progressive life-threatening illnesses.
- Nursing practice should focus on acknowledging and addressing the complexities of 'facing adversity' and the burden of care.
- Interventions should consider concepts like normalization and chronic sorrow to provide holistic family support.
Abstract:
The qualitative study explored the day-to-day experiences of parents caring at home for a child with a progressive life-threatening illness at a certain point in their illness trajectory. This point in the trajectory is when the child lives with a complex chronic condition, and is in need of specialized and time-consuming care, but is not yet in a terminal phase. The naturalistic research design of phenomenology was chosen for the study's methodology. Parents' experiences of caring for their child were conceptualized as an ongoing process of 'facing adversity', as parents had continuously to redefine and then manage those changes resulting from the progressive nature of their child's condition. Concepts of normalization and chronic sorrow are considered in the conceptualization, as are the challenges of caregiving (particularly of mothers) who faced many hardships in their role, including the myriad of changes related to the increased burden of care. Implications for nursing practice are identified.