A Prospective Study of the Role of Coping and Family Functioning in Health Outcomes for Adolescents With Sickle Cell Disease

Abstract

Risk-and-resistance models identify factors that predict psychosocial adjustment to pediatric chronic illness, including sickle cell disease (SCD), but have not been applied to understand health outcomes. The study objectives were to examine prospectively the relationship of coping and family functioning with health outcomes for adolescents with SCD, accounting for sociodemographic and psychosocial risk. Forty-one adolescents and their families (41 primary caregivers, 9 second caregivers, and 15 healthy siblings) completed paper-and-pencil measures of coping and family functioning at a baseline assessment (time 1). At both time 1 and time 2 (1 y later), disease severity, SCD complications, healthcare utilization, and average hemoglobin level were derived from medical file reviews. Time 1 disease-related parenting stress predicted time 2 health outcomes; however, there were no significant associations for coping. Families concordant in reporting lower family functioning had teens with increased disease severity and greater healthcare utilization. Examination of moderation of disease-related parenting stress by a risk index showed main effects for risk and for disease-related parenting stress for time 2 disease severity and time 2 healthcare utilization. Interaction effects were not significant. Efforts to explore specific mechanisms by which adaptive family functioning contributes to health outcomes for adolescents with SCD should continue, with particular attention to addressing the potential role of multiple sociodemographic and psychosocial risk variables.

Knowledge and Health Beliefs Regarding Sickle Cell Disease Among Omanis in a Primary Healthcare Setting: Cross-sectional study

“…18,19 Research has shown that stress is significantly related to poor psychological adjustment on the part of the parents to the increased demands of children with SCD, including frequent pain and frequent use of both routine and urgent healthcare services, as well as realisation of the short life expectancy of their child. 18,20 A study conducted in Nigeria found that children with SCD reported more frequent absences from school and poorer academic achievement compared to their healthy siblings. 21 Parents of children with SCD have shown increased SCD knowledge compared to parents of children without SCD; moreover, the absence of family discussion about SCD was associated with lower knowledge levels and awareness of SCD and the value of PMS.…”

“…10,17 Certain beliefs reported by the majority of participants in the current study-that SCD is serious, that it is frightening to have an SCD-affected child, that the disease can have an impact on school performance and that having a child with SCD can affect the parents' personal lives-are supported by findings from other studies in the literature. [18][19][20][21] Parents of children with chronic illnesses such as SCD have reported significantly greater stress than the parents of healthy children. 18,19 Research has shown that stress is significantly related to poor psychological adjustment on the part of the parents to the increased demands of children with SCD, including frequent pain and frequent use of both routine and urgent healthcare services, as well as realisation of the short life expectancy of their child.…”

The Relationship of Father Parenting Capacity Variables to Perceived Uncertainty in Youth With a Chronic Illness

“…Such parenting capacity variables include, among others, parenting stress, perceived child vulnerability, and parental overprotection. Parenting stress is conceptualized as parents' perceptions of stress in various areas, including parent-child interactions, difficult child characteristics, and parents' individual characteristics (Abidin, 1990); and has been associated with more internalizing and externalizing problems (Colletti et al, 2008), medical nonadherence (Fredericks, Lopez, Magee, Sheick, & Opipari-Arrigan, 2007), and greater illness severity and health care utilization (Barakat et al, 2007). Parental overprotection has been defined as overanxious parenting in which the parent displays excessive protective behaviors given the child's developmental stage (Thomasgard & Metz, 1999).…”

Comparing Abstract Numerical and Visual Depictions of Risk in Survey of Parental Assessment of Risk in Sickle Cell Hydroxyurea Treatment

“…However, earlier studies from our center have documented a broad range of socioeconomic status and education, slightly skewed toward lower income. 29 In addition, earlier reports of low "numeracy" indicated that Americans of most socioeconomic groups have difficulty with abstract numerical representations of quantitative information.…”

“…Active clinical research programs in SCD are exploring new pharmacologic agents, gene therapy, and stem cell transplantation from unrelated donors. 3,29,30 In each study of a new treatment, risk-benefit information for the new treatment is likely to be compared with the risk-benefit information for hydroxyurea as a standard-care option. [31][32][33][34][35][36] The findings of this study may be helpful in introducing visual methods to augment communication of quantitative risk information to families.…”