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Parents' experience of coming to know the care of a chronically ill child
1Queen's University, School of Nursing, Kingston, Ontario, Canada.
Insights
Parents of children with juvenile arthritis learn to manage daily care through a complex, phased process. They adapt to the illness demands, finding personalized strategies that best suit their family
Area of Science:
- Pediatric Rheumatology
- Family Caregiving
- Chronic Illness Management
Background:
- Families are the primary caregivers for chronically ill children.
- Parents bear the daily responsibility of managing a child's chronic condition.
- Understanding parental experiences in managing childhood illness is crucial.
Purpose of the Study:
- To investigate how two-parent families experience managing childhood juvenile arthritis.
- To examine the process of parents "coming to terms" with illness management.
- To explore the learning curve and adaptation strategies employed by parents.
Main Methods:
- Qualitative study design.
- In-depth investigation of 10 two-parent families with children diagnosed with juvenile arthritis.
- Thematic analysis of parental experiences in daily illness management.
Main Results:
- Parents engage in a learning process to care for their chronically ill child.
- This learning involves distinct phases and significant effort.
- Parents adapt to illness management demands in ways that are effective for their family.
Conclusions:
- Parental adaptation to juvenile arthritis management is a dynamic and individualized process.
- Families develop unique strategies to integrate illness care into daily life.
- Support for parents navigating the complexities of childhood chronic illness is essential.
Abstract:
The family is the primary source of care for a chronically ill child, and it is the parents who must manage the child's illness on a daily basis. This qualitative study was undertaken to investigate the ways in which 10 two-parent families of children with juvenile arthritis experience their child's illness. In this paper the theme of coming to terms with the management of the illness and what it entails for the parents is examined. The data provide evidence of how the parents learn, and their efforts and experience of learning to care for the child on a daily basis. This is a complex process and includes the different phases the parents experience as they move through the learning process. The findings suggest that the parents learn the child's care and make adjustments to the demands of managing the child's illness in a way that works best for them.