The Relationships between Family Resources, Parental Stress, and Child Well-Being in Pediatric Sickle Cell Disease

Introduction: Parents and caregivers play an important role in the management of pediatric chronic illness. In sickle cell disease (SCD), families often manage multiple components simultaneously, such as attending clinic appointments, following a medication regimen, and treating pain symptoms. The availability of resources is known to affect disease management. However, it is unknown how children and parents view their resource availability, and how this can impact both parent stress and child quality of life (QoL). The current study examined the ways in which family resources, parental stress, and child well-being interact with and potentially influence each other. We hypothesize the following: 1) There is a relationship between family resources and child well-being such that more family resources leads to higher quality of life reporting; 2) There is a relationship between family resources and parental stress such that more family resources leads to lower parental stress; and 3) Parental stress moderates the relationship between family resources and child well-being.

Methods: Parents of youth with SCD reported on the adequacy of their family’s resources by completing the 30-item Family Resource Scale (FRS), rating items on a 5-point Likert scale (1 = not adequate at all to 5 = almost always adequate). Parents also reported on their parental stress by completing the 42-item Pediatric Inventory for Parents (PIP), rating items on a 5-point Likert scale (1 = never/not at all to 5 = very often/extremely). Children and parents reported on the child’s overall well-being by completing the 43-item PedsQL SCD Module self-report form and 43-item parent proxy-report, rating items on a 5-point Likert scale (0 = never to 5 = almost always). Pearson's correlation coefficients were calculated to measure relationships between family resources (FRS) and child well-being (PedsQL), family resources (FRS) and parental stress (PIP), and parental stress (PIP) and child well-being (PedsQL). Multiple regressions were used to determine if parental stress moderated, or changed the effect of, family resources on child well-being.

Results: Seventy-eight primary caregivers of youth aged 7-16 with SCD (Mean age = 10.37, SD = 2.86; 58% female; 68% HbSS; 87% African American or Black; 90% Not Hispanic) completed measures on their family resources and parental stress. Preliminary correlation analyses show the relationship between family resources and child self-reports on QoL was weak, positive, and not significant (r = 0.18, p = .167). The relationship between family resources and parent proxy-reports on QoL, however, was moderate, positive, and significant (r = .36, p = .001). The correlation between family resources and parental stress was moderate, negative, and significant (r = -.42, p < .001). The correlation between parental stress and child QoL self-reports was weak, negative, and significant (r = -.225, p = .05). The correlation between parental stress and parent proxy-reports on child QoL was moderate, negative, and significant (r= -.50, p = <.001). Multiple regression results for parent proxy-reports on child QoL show parental stress significantly and negatively impacts parent proxy-reports on child QoL (b = -5.52, p = .034). The relationship between family resources and parent proxy-reports on child QoL was not moderated by parental stress (b = 2.44, p = .207).

Conclusion: There is a relationship between family resources and child well-being such that more resources reflect higher quality of life, but only when the parents are reporting on their child’s well-being. Current results also show that as family resources decrease, parental stress moderately increases. Parental stress significantly impacted both self-reports and parent proxy-reports on child quality of life, though there was a weaker relationship shown in child self-reports. It’s likely that parents who are more stressed view their child as being more stressed. Future interventions should consider including parent components to 1) further understand the role of parental stress as it relates to pediatric SCD management and 2) identify ways to best support families experiencing resource inadequacy or high levels of parental stress. Developing screeners to give to parents of youth with SCD during clinic appointments could offer a destigmatized way of connecting families to resources and providing tools for parental stress management.