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Article Excerpt
The authors investigated whether uncertainty about the impact of children's chronic health conditions on their daily lives leads to changes in mothers' and fathers' mental and physical health. Three waves of data were collected over 3 years from parents of 228 children with chronic health conditions. Parents reported their level of uncertainty about how the child's health condition affected the child's daily life and measures of their own mental and physical health at each wave of data collection. Results of structural equation models indicate that among mothers, more illness-related uncertainty was associated with a subsequent increase in psychological symptoms relative to other mothers in the study. Psychological symptoms, in turn, were associated with a subsequent increase in physical symptoms among mothers. Uncertainty did not affect fathers' health. Illness-related uncertainty may be a risk factor for psychological and physical symptoms in mothers of children with chronic health conditions. As such, interventions that address uncertainty related to the child's chronic health condition may improve psychological and physical well-being of mothers of children with chronic health conditions.
Keywords: childhood chronic health conditions, parent adjustment, uncertainty
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Because of advances in medicine and technology, children with previously fatal diseases now survive and have chronic health conditions with no cure. Between 10% and 30% of children in the United States have a chronic illness or disability (Davidoff, 2004; Van Dyck, Kogan, McPherson, Weissman, & Newacheck, 2004). A substantial body of research has indicated that parents of children with chronic health conditions are at risk for symptoms of psychological distress (e.g., Mastroyannopoulou, Stallard, Lewis, & Lenton, 1997; Nagy & Ungerer, 1990; Silver, Westbrook, & Stein, 1998). Theory and research have provided some guidance regarding which factors are likely to put parents at risk for distress. Uncertainty arising in the context of chronic illness is an important component of family stress, with two primary branches of investigation. These branches of investigation stem from family stress theory (Boss, 2002; Boss & Greenberg, 1984) and uncertainty in illness theory (Mishel, 1981, 1983, 1984, 1993).
Family stress theory has focused on boundary ambiguity. Boundary ambiguity is a specific aspect of uncertainty that is defined as "a state in which family members are uncertain in their perception about who is in or out of the family and who is performing what roles and tasks within the family system" (Boss & Greenberg, 1984, p. 536). Thus, boundary ambiguity has two dimensions: membership ambiguity and role ambiguity (Berge & Holm, 2007). Membership ambiguity can occur when parents have difficulty incorporating an ill child into the family. For example, parents may have difficulty becoming emotionally connected with a child who has a limited life expectancy. Role ambiguity can occur when parents have difficulty determining what their parental role is vis-a-vis the ill child. For example, parents may feel more like a medical assistant than a parent to their child. The boundary ambiguity aspect of uncertainty has been investigated in illnesses across the life span--from chronic illnesses in children (Mu, Kuo, & Chang, 2005) to dementia (Boss, Caron, Horbal, & Mortimer, 1990; Caron, Boss, & Mortimer, 1999). See Carroll, Olson, and Buckmiller (2007) for a review of boundary ambiguity research that includes a summary of research on boundary ambiguity in the context of chronic illness.
The second branch of research stems from uncertainty in illness theory (Mishel, 1981, 1983, 1984, 1993). Mishel defined uncertainty as the inability to assign meaning to illness-related events, which occurs when a person cannot adequately categorize information or predict outcomes because of a lack of sufficient cues (Mishel, 1988). Uncertainty related to children's chronic health conditions has been associated with parent mental health in several cross-sectional studies (Bonner et al., 2006; Grootenhuis & Last, 1997; Mu, 2005; Mu, Ma, Hwang, & Chao, 2002; Mu, Ma, et al., 2001; Mu, Wong, Chang, & Kwan, 2001). For example, Jessop and Stein (1985) found that the need to expect changes in the child's condition was associated with psychiatric symptoms reported by mothers of children with a variety of chronic conditions. Another study found that illness-related factors that increase parental uncertainty (such as the need to watch for sudden changes in the condition) had indirect effects on maternal mental health through their influence on mothers' perception of the impact on the family (Ireys & Silver, 1996).
Prior research on the impact of uncertainty on parents of children with chronic health conditions has several limitations. First, research has primarily been cross-sectional. Second, research has emphasized the mental health of parents, with little investigation of physical health. Third, most research has focused on mothers. The present study addresses each of these limitations by using longitudinal data to assess changes in mothers' and fathers' mental and physical health. The conceptual model for this study was based on uncertainty in illness theory and specifically focused on parental uncertainty about the impact of the health condition on the child's daily life, which is also referred to as "daily living uncertainty" (Mishel, 1993). Two aspects of uncertainty were the focus of this study: uncertainty regarding the impact of the condition on mood and uncertainty regarding the impact of the condition on sleep and energy.
In this study, we propose and test a "cascade of distress" in which uncertainty leads to a relative increase in psychological symptoms, which over time lead to a relative increase in physical symptoms. Psychological and physical symptoms at Time 1 were included in analyses as control variables for symptoms at Times 2 and 3. The model was the same for mothers and for fathers and was run separately for each gender. Two specific hypotheses were tested:
Hypothesis 1: Parents who experience the highest amount of uncertainty about the impact of their child's health condition on his or her daily life will have a greater relative increase in psychological symptoms over time.
Hypothesis 2: Parents who have greater psychological symptoms will subsequently experience a greater relative increase in physical symptoms.
METHOD
Sample
This study involved secondary analysis of data from Project Resilience (Dodgson et al., 2000; Garwick, Patterson, Meschke, Bennett, & Blum, 2002), a longitudinal study of families of 327 infants and preadolescents with a variety of chronic health conditions. Project Resilience used a noncategorical approach grounded in the premise that children and families living with a wide variety of chronic health conditions experience common stressors (Perrin et al., 1993; Stein, Bauman, Westbrook, Coupley, & Ireys, 1993). Research has supported this premise: The psychosocial impact of chronic conditions on children and families is more similar across conditions than different (Gartstein, Short, Vannatta, & Noll, 1999).
Three waves of data were collected at 12- to 18-month intervals beginning in 1991. The...
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