Impact of Sickle Cell Disease on Parents.

Background: Caregivers of patients with chronic illness experience a heavy burden leading to their own negative health outcomes and decreased quality of life. Parents may experience a similar burden caring for children with sickle cell disease, a chronic illness characterized by intermittent hospitalizations, recurrent painful crises, and reduced life expectancy. There are little data evaluating how caring for a child with sickle cell disease affects family functioning and parental health-related quality of life (HRQL).

Purpose: To examine family functioning and HRQL of parents of children with sickle cell disease.

Methods: During a routine clinic visit, parents completed the PedsQL Family Impact Module, which measures the HRQL of parents who are caring for a child with chronic disease by assessing parental fatigue, stress and difficulty concentrating, etc. In addition, the PedsQL Family Impact Module measures family functioning by assessing family relationships and daily activities. Scores range from 0, representing poor family functioning or HRQL, to 100, representing better family functioning or HRQL. To highlight the impact of caring for a chronically ill child living at home, we compared mean family functioning and HRQL scores of parents of children with sickle cell disease to parents of children with a complex chronic health condition who lived in a long-term Children’s Convalescent Hospital (Varni et al.) using a one-sample t-test.

Results: Forty-three parents (41 female and 2 male) of children with sickle cell disease completed the PedsQL Family Impact Module. The mean age (standard deviation) of the children was 9.9 yrs (4.9). Parents of children with sickle cell disease had a significantly lower HRQL summary score than the comparison population (71.99 versus 83.75; p≤.001). In addition, parents of children with sickle cell disease had a significantly lower family functioning summary score than the comparison population (73.91 versus 84.27; p=.002) Table 1 shows the mean HRQL and family functioning scores for each scale in both groups of parents.

Conclusions: Caring for a child with sickle cell disease has a significant impact on the parent’s HRQL and family functioning. Parents of children with sickle cell disease are more fatigued, have more trouble concentrating and remembering things, and struggle with stress within their families. Future research in sickle cell disease needs to examine the impact of the child’s treatment and care on family functioning and parental HRQL to improve the burden on these parents. Additionally, greater parent education, family-centered support, and social support may be needed to lessen this burden.