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Article Excerpt
The intensive health management activities associated with spina bifida (SB) often command a pervasive presence in the lives of families and may place some members at risk for psychosocial difficulties. However, research on the risk and protective factors associated with sibling adjustment is limited. Anchored upon a social-ecological theoretical framework, the purpose of this cross-sectional study was to explore the relationships between select individual, family, and peer factors and sibling adjustment. A convenience sample of 224 adolescent siblings and parents of youths with SB responded to anonymous mailed surveys. Siblings completed measures of attitude toward spina bifida, family satisfaction, warmth and conflict in the sibling relationship, peer support, and three dimensions of adjustment--self-concept, prosocial behavior, and behavior problems. Parents provided SB clinical data and family demographics. The individual, family, and peer factors explained a significant amount of variance in sibling self-concept, prosocial behavior, and behavior difficulties, with [R.sup.2] ranging from .27 to .57. Differing patterns of the relationships between the ecological factors and sibling adjustment emerged. Findings highlight multi-level opportunities to intervene and support siblings. Minimizing threats and bolstering protective influences on sibling adjustment is an essential component of family-centered services in SB.
Keywords: sibling adjustment, spina bifida, family-centered care, social-ecology theory
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Regarded as one of the most complex chronic health conditions affecting children, spina bifida (SB) develops from the failure of the neural tube to close early in pregnancy and is associated with a broad range of health complications, including hydrocephalus, lower extremity weakness or paralysis, neurogenic bladder, bowel dysfunction, and neurocognitive deficits (Bowman, McLone, Grant, Tomita, & Ito, 2001; Holmbeck, Greenley, Coakley, Greco, & Hagstrom, 2006; Mitchell et al., 2004). The intensive health management activities associated with SB often command a pervasive presence in the lives of families (Bellin, Sawin, Roux, Buran, & Brei, 2007; Sawin, Bellin, et al., 2003) and may place some members at risk for psychosocial difficulties (Vermaes, Janssens, Bosman, & Gerris, 2005). Consequently, a family-centered approach to health care services that supports adaptive functioning of all family members may be helpful when working with this population.
A family-centered model of health care delivery that emphasizes partnership and shared decision-making between providers and the family has been linked to positive outcomes for both the child with the chronic condition (CHC) and parents (American Academy of Pediatrics, 2003). This model further recognizes that the psychosocial health of the child is interrelated with that of surrounding family members (Witt, Riley, & Coiro, 2003). Although the experience of parents of youths with SB is well documented (Kazak et al., 1997; Vermaes et al., 2005), research on the psychological and behavioral adjustment of siblings is limited, particularly with regard to the relationship between risk and protective factors and adjustment outcomes. Yet, because of decreased parent emotional and/or physical availability, insufficient resources supporting siblings, and lack of access to information about the CHC, siblings may be at increased risk for depression, anxiety, and behavioral problems (Sharpe & Rossiter, 2002; Williams et al., 1997). The limited research with siblings of youths with SB has shown mixed findings: some studies endorse a heightened risk for difficulty in this population (Tew & Laurence, 1973), with other reports fail to support an elevated risk status (Kazak & Clark, 1986). An enhanced understanding of factors which increase vulnerability to adjustment problems as well as those which promote age-appropriate, normative functioning is needed to advance the repertoire of intervention tools available to use in work with siblings. Anchored upon a social-ecological theoretical framework, the intent of this study was to increase understanding of the relationships between select individual, family, and peer factors and the psychological and behavioral adjustment of siblings of youths with SB-knowledge that may help inform the development of family-centered intervention services.
THEORETICAL FRAMEWORK
Social ecology theory recognizes diverse individual and contextual influences on human behavior (Bronfenbrenner, 1979, 2004). This holistic model places developing youths in the context of larger, interdependent social systems of influence. The child is seen as being "nested" within the family, neighborhood, and broader community settings, each of which may influence the child's developmental trajectory (Fraser, 2004). Bronfenbrenner (1979) explained the person-environment interdependence as the "progressive, mutual accommodation between an active, growing human being and the changing properties of the immediate settings in which the developing person lives, as this process is affected by relations between these settings, and by the larger contexts in which the settings are embedded" (p. 21).
Examining child adjustment without accounting for the family context, or influences found in the surrounding social environment, will therefore yield only a partial picture of the resources and stressors impacting the child's functioning (Fraser, 2004). Alternatively, because it places the child in the center of surrounding concentric circles of influence, social ecology theory captures the impact of multilevel factors on child adjustment outcomes (Bronfenbrenner, 1979, 2004). A social ecological framework further suggests that risk factors that heighten vulnerability to adjustment problems and protective factors that mitigate the effects of the adversity may be found at the individual, family, and environmental levels, and often occur simultaneously (Fraser, Kirby, & Smokowski, 2004).
LITERATURE REVIEW: IDENTIFICATION OF ECOLOGICAL FACTORS INFLUENCING SIBLING ADJUSTMENT
Sibling research has been conducted across a range of health conditions and has evaluated the impact of diverse factors on adjustment outcomes. In particular gender, birth order, and condition severity have been frequently explored as correlates of sibling outcomes. However, in general, no consistent picture of the effects of these factors emerges. For example, some research supports increased risk of poor adjustment in male siblings (Hastings, 2003), but other studies failed to show differences in outcomes across gender (Kaminsky & Dewey, 2002). Research exploring the influence of birth order on psychosocial outcomes has also produced discordant findings, because some studies endorse a greater risk for difficulty in siblings younger than the child with the chronic condition (Gallo, Breitmayer, Knafl, & Zoeller, 1992), and others suggest an elevated risk for older siblings (Labay & Walco, 2004). Mixed findings have likewise been observed with regard to the relationship between condition severity and sibling adjustment (see, e.g., Dyson, 1989; Tew & Laurence, 1973). Identifying demographic and clinical factors associated with sibling adjustment is an important step to screen for siblings who may be at risk for problematic outcomes. However, as illustrated in Figure 1, a social-ecological perspective of sibling adjustment broadens the lens of focus to include other individual, family, and environmental factors possibly underlying the observed diversity in outcomes. A review of the sibling literature identified attitude toward disability, family satisfaction, sibling relationship qualities, and peer support as influential factors among some populations.
Individual-Level Factor: Attitude Toward Disability
Austin and Huberty (1993) proposed an association between a positive attitude about the impact of a CHC and adaptive adjustment outcomes. Although the relationship is well documented among youths with SB (Sawin, Brei, Buran, & Fastenau, 2002; Sawin, Buran, Brei, & Fastenau, 2003), linkages between sibling attitude toward disability and adjustment have been understudied. However, noncategorical research with 62 siblings of youths with a range of chronic conditions found more negative attitudes about the condition were associated with worse adjustment outcomes (Taylor, Fuggle, &...
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