Sleep Patterns and Parents’ Experience in Caring for Young Children Newly Diagnosed with Juvenile Idiopathic Arthritis

Thesis (Ph.D.)--University of Washington, 2016-05

Background: Juvenile idiopathic arthritis (JIA) is a common pediatric autoimmune condition with no cure. The cause of JIA is not completely understood. Children experience unpredictable and fluctuating episodes of active and inactive disease and symptoms of pain, fatigue, and poor sleep quality. JIA not only affects the child, but also affects the family. Parents must learn to manage the illness, diagnostic and treatment demands, and disruptions in daytime and nighttime routines, as well as balance family and other caregiving demands. Purpose: The overall purpose of the dissertation was to gain new knowledge about the interrelations among sleep patterns, sleep quality, symptoms, and family functioning in parent-child dyads of young children newly diagnosed with JIA compared to their peers without this health condition, and to describe parents’ experience in caring for their young children newly diagnosed with JIA. Methods: The first part of the dissertation included two secondary analysis studies of data from an existing cross-sectional observational study that examined the impact of a new JIA diagnosis on sleep, disease-related symptoms and family functioning in 2-5-year-old children and their parents. The sample included 30 parent-child dyads (14 JIA and 16 control dyads). Participants wore actigraphs for 10 days and completed daily sleep and symptoms diaries. Parents completed one-time questionnaires about demographic information and family functioning survey. The second part of the dissertation involved a single-occasion semi-structured interview study with 9 of the 14 parents who participated in the previous observational study. Results: Young children with JIA had decreased nighttime sleep duration and poorer sleep quality compared to children without JIA. Poor sleep quality was related to increased symptoms of pain and fatigue. Parents of children with JIA had poorer sleep quality compared to parents in the control group, and poor sleep quality was inversely correlated with daytime fatigue and nighttime worry in parents. Parent–child sleep quality was interrelated in the JIA dyads, but not in the control parent-child dyads. Family functioning was similar in families of children with and without JIA, and did not correlate with children’s sleep quality. However, the parent interview data found the core construct “Struggling in the Dark to Help My Child” described parents’ experience in caring for a young child with JIA. Parents struggled to understand this illness without a known cause, the different treatment options, and what the future might hold for their child. Parents reported feeling completely alone and in the dark, and tried to reach out for resources, only to find not much available. Parents struggled seeing their child in pain, but knew there was not much they could do to help. Parents blamed themselves, and some felt they were bad parents who had betrayed their children. Parents tried everything they could to work out the kinks and stay on top to manage JIA, even when they felt drained physically and emotionally. JIA not only consumed their lives, but also affected the entire household, including siblings and spouse, and the relationships among family members. Conclusions: Inadequate amounts of sleep and poor sleep quality were common in young children with JIA and their parents. Poor sleep quality was related to symptoms of pain and fatigue in children, and worry and fatigue in parents. Poor sleep quality is a modifiable health behavior and early interventions to improve sleep may alleviate future sleep problems and disease-related symptoms in children with JIA and their parents. Despite the advanced medical care for young children with JIA, the interview study findings are the first to highlight the day-to-day challenges parents encounter when caring for their young child during the initial JIA diagnosis period. 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. The prolonged struggle substantially impacted the emotional and physical health of the parents as well as the entire household. Healthcare providers need to assess the particular needs of an ill child and parents and the impact of the illness on the physical and psychosocial health in the entire household, so that proper resources can be provided. These findings will inform the development of family-centered intervention trials to assist families and improve child, parent, and family outcomes in the future.