Struggling in the Dark to Help My Child: Parents' Experience in Caring for a Young Child with Juvenile Idiopathic Arthritis

• Published in: Journal of pediatric nursing Vol. 37; pp. e23 - e29
• Main Authors: Yuwen, Weichao, Lewis, Frances M., Walker, Amy J., Ward, Teresa M.
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01-11-2017
• Subjects: Chronic illness; Family caregivers; Juvenile idiopathic arthritis; Nursing; Qualitative research; Chronic illness; Qualitative research; Family caregivers; Juvenile idiopathic arthritis
• ISSN: 0882-5963; 1532-8449
• DOI: 10.1016/j.pedn.2017.07.007

The purpose of this study is to describe parents' experiences in caring for 2–5-year-old children with juvenile idiopathic arthritis (JIA).
A qualitative study using single-occasion in-depth interviews was conducted. Nine parents (eight mothers and one father) were interviewed in-person or via telephone. Data were analyzed using inductive content analysis. Methods used to protect the trustworthiness of study results included maintenance of an audit trail, peer debriefing, and member checks.
The core construct Struggling in the Dark to Help My Child explained parents' experience in six domains: not knowing, trying to reach out in the dark, feeling my child's pain, working out the kinks to stay on top to manage, feeling drained by the whole process, and being hard on the entire household. Parents struggled with the unknown, searched for resources, witnessed their child's suffering without knowing how to help, and tried every possible way to stay on top of the child's illness and treatment, even when they felt drained physically and emotionally. JIA not only consumed their lives, but also affected the entire family, including the siblings and spouse, and the relationships among family members.
Findings highlight the day-to-day lived challenges parents face when caring for a young child with JIA. Healthcare providers including nurses need to assess the particular needs of an ill child and parents as well as the impact of the illness on the physical and psychosocial health of the entire family so that proper resources can be provided.
•The core construct Struggling in the Dark to Help My Child explained parents’ experience in caring for a young child with JIA.•Parents struggled with the care and tried every possible way to stay on top of the child’s illness and treatment.•The prolonged struggle substantially impacted the emotional and physical health of the parents and the entire household.