Psychological Functioning of Siblings of Children with CHCs
Psychological Functioning of Siblings of Children with CHCs
ObjectiveThe aim of this meta-analysis was to provide an up-to-date review of the literature to enhance our understanding of how chronic health conditions (CHCs) affect siblings, both positively and negatively.
MethodsPsycINFO and Medline were systematically searched. Inclusion criteria were as follows: (a) peer-reviewed, empirical research report; (b) sample n ≥ 10; and (c) reports statistics on siblings' internalizing problems, externalizing problems, and/or positive self-attributes.
ResultsOverall, there was a significant small negative effect of CHCs on siblings (d+ = −.10). Siblings of children with CHCs had more internalizing problems (d+ = .17), more externalizing problems (d+ = .08), and less positive self-attributes (d+ = −.09) than comparisons. Older siblings and siblings of children with life-threatening and/or highly intrusive CHCs were more at risk for psychological problems.
Conclusions This study identified several mechanisms through which CHCs affect siblings. Future research should focus on parent–child dynamics and the longitudinal development of positive self-attributes and internalizing problems as well as on identifying what works in services for siblings of children with CHCs.
A number of studies investigated the impact of chronic health conditions (CHCs) on siblings' psychosocial functioning; nonetheless, the results appear to be difficult to synthesize (Faux, 1991; Houtzager, Grootenhuis, & Last, 1999; McKeever, 1993; Sharpe & Rossiter, 2002). The most recent previous meta-analysis is >8-years old, many additional studies have been published and more data on moderating variables are available. Therefore, to advance our understanding of this important topic, reviewing new studies is necessary (Barlow & Ellard, 2006). The aim of this study was to provide an up-to-date systematic review of the literature, building further on an earlier meta-analysis (Sharpe & Rossiter, 2002) by adding 13 (23%) new research reports with more data on moderating variables (Alderfer, Labay, & Kazak, 2003; Batte, Watson, & Amess, 2006; Giallo & Gavidia-Payne, 2006; Guite, Lobato, Shalon, Plante, & Kao, 2007; Houtzager, Grootenhuis, Caron, & Last, 2004; Houtzager, Grootenhuis, Hoekstra-Weebers, Caron, & Last, 2003; Houtzager, Grootenhuis, Hoekstra-Weebers, & Last, 2005; Houtzager, Oort et al., 2004; Ishizaki et al., 2005; Labay & Walco, 2004; McMahon, Noll, Michaud, & Johnson, 2001; Thornton et al., 2008; Wood, Sherman, Hamiwka, Blackman, & Wirrell, 2008). We examined two main questions: (a) how is the psychological functioning of siblings of children with CHCs compared to siblings of healthy children, and (b) can variations in siblings' psychological functioning be explained by methodological factors and demographic factors?
Psychological functioning will be defined both in terms of mental health problems and positive self-attributes, because to this date, positive psychological functioning has not been reviewed separately from negative psychological functioning. This is important, since the presence of negative functioning does not imply the absence of positive functioning and vice versa. Negative psychological functioning can be defined in terms of internalizing problems (e.g., depression and anxiety) and externalizing problems (e.g., behavioral problems, aggression, and social problems). Positive psychological functioning can be defined as age-appropriate, normative, healthy affective, and social functioning in response to stresses engendered by a pediatric CHC (Wallander, Thompson, & Alriksson-Schmidt, 2003).
First, we hypothesized that CHCs entail important life events as well as daily hassles, which act as stressors for the affected child and his or her family (Kazak, Rourke, & Crump, 2003). There are several ways in which siblings can be challenged by CHCs. Siblings may be confronted with severe sequelae of the CHC; they may feel that they are powerless by standers of the medical-care process; they may experience differential parental treatment due to disproportionate care for the affected child; they may be assigned extra care-giving and domestic responsibilities; and they may be affected by parental distress reactions (Adams, Preveler, Stein, & Dunger, 1991; Faux, 1991; Houtzager, Grootenhuis et al., 2004). These stressors are associated with anxiety, depression, anger and jealousy (Adams et al., 1991; Faux, 1991; Houtzager, Grootenhuis et al., 2004). The former meta-analysis indeed indicated an overall homogeneous significant negative effect (d+ = −.09) of CHCs on siblings' functioning (Sharpe & Rossiter, 2002).
Second, we expected siblings to be more inclined to internalize, rather than externalize their feelings because siblings of children with CHCs do not always ask for parental attention as much as they really want to (Taylor, Fuggle, & Charman, 2001). Moreover, researchers have suggested that siblings keep their feelings to themselves to hide them from their already overburdened parents (Houtzager et al., 2005; Van Dongen-Melman, De Groot, Hählen, & Verhulst, 1995; Wood et al., 2008). The former meta-analysis indeed showed a stronger effect for internalizing than for externalizing problems (Sharpe & Rossiter, 2002).
Third, we stipulated that stressors may also generate resilient responses and reinforce personal assets (Rutter, 1990). The experience of having resisted and recovered from major life events and daily stressors can reinforce siblings' positive self-attributes, such as, self-concept, self-esteem, and sense of competence. In support of this resilience hypothesis, a few studies found that CHCs enhance prosocial behaviors, independence, and competence in siblings (Adams et al., 1991; Faux, 1991; Houtzager, Grootenhuis et al., 2004).
Demographic Characteristics With regard to demographic characteristics, we hypothesized that younger children would be less negatively affected by CHCs than older children. Younger siblings' concepts of CHCs may protect them from appraising the situation as threatening, because parents and health-care providers are inclined to withhold difficult information from young siblings. At the same time, young children use their logic abilities to make spontaneous, naĂ¯ve inferences which help them understand and accept the situation in their own way (Rubovits & Siegel, 1994). Quite the opposite, older siblings are likely to be informed more elaborately and to possess the cognitive capacities to appreciate the consequences of CHCs more fully. Albeit that some studies also indicate that distress in siblings appears to lessen in response to better education about a child's condition (Lobato & Kao, 2005). Nevertheless, parents may also place higher demands on older sibling's capacity for self-sufficiency and may expect them to take on relatively more care-giving and domestic responsibilities (Houtzager et al., 2005; Labay & Walco, 2004; Sahler et al., 1994). If these responsibilities restrict social activities outside the home, this may conflict with the importance of developing peer relationships in adolescence (Houtzager et al., 2005). Finally, older siblings may increasingly assume a manager role in relation with the affected child, which may lead to asymmetry in the sibling relationship (Lobato, Miller, Barbour, Hall, & Pezzullo, 1991; Silver & Frohlinger, 2000). Consequently, the older sibling may be deprived from mutual sibling support and give and take experiences.
Furthermore, we formulated hypotheses about the moderating effect of CHC characteristics. In the research literature on pediatric CHCs, two general approaches can be discerned: a categorical and noncategorical (Gallo & Knafl, 1993). Categorical studies focus on associations between illness-specific characteristics and psychological functioning. The assumption is that each CHC engenders specific stressors. In this respect, Sharpe and Rossiter (2002) found that most CHCs had negative effects, whereas cardiac diseases had positive effects on siblings functioning. Cardiac diseases are often treated by surgical intervention and do not necessarily affect daily functioning to the same extent as those CHCs requiring (daily) intrusive treatment regimes.
In noncategorical studies, shared characteristics of different CHCs are examined in association with psychological functioning. The assumption is that CHCs, despite their biomedical uniqueness, share similar characteristics (Pless & Pinkerton, 1975; Stein & Jessop, 1982), such as functional impairments, visibility of impairments, mental retardation, intrusiveness of treatment, and life-threatening potential (Rolland, 1987; Stein & Jessop, 1982). In line with Sharpe and Rossiter (2002), we hypothesized that CHCs requiring intrusive treatment regimes affecting daily functioning (i.e., cancer, diabetes, anemia, and bowel disease) would have stronger negative effects than CHCs requiring surgical interventions without necessarily intruding daily functioning (i.e., cardiac anomalies, craniofacial anomalies, and hydrocephalus). Hence, we assumed that chronic daily hassles have a more negative impact on siblings than incidental major life events.
Methodological Factors Concerning the second research question, Sharpe and Rossiter (2002) also documented moderation effects of methodological aspects of studies, such as, year of publication (effects in older studies were stronger than in more recent studies), informant (effects based on parent reports were more negative than effects based on self-reports), and comparison group (effects in studies with normative data were more negative than in studies with control groups), but not of sample size. In line with these findings, we hypothesized that the negative effects of CHCs on siblings in older studies would be stronger than in more recent studies. We expected a positive effect of improvements in research methodology and changed educational, medical, and political contexts since the 1960s and 1970s, which have incorporated more advocacy, intervention, and habilitation efforts aimed at optimal participation and inclusion of children with CHCs and their families in society (Sharpe & Rossiter, 2002). Increasingly, parents of children with CHCs have become aware of the special needs in their well children. In 1987, a study showed that parents underestimated their well children's worries (Menke, 1987). In contrast, a more recent study showed that mothers were more alert to their well children's concerns (Taylor et al., 2001).
Further, we expected that studies with a low response rate were more likely to have excluded those siblings who avoid CHC-related stressors. Avoidance, in turn, may reflect a coping strategy that has been associated with mental health problems (Wallander et al., 2003). Hence, we hypothesized that studies with a higher response rate would report stronger negative effects than studies with a lower response rate.
A meta-analysis of 56 research reports (52 studies) was conducted. First, the effects of CHCs on siblings' internalizing problems, externalizing problems, and positive self-attributes were investigated. We expected siblings of children with CHCs to have an increased risk for psychological problems, especially internalizing problems. In addition to the previous meta-analysis, we explored whether they also showed signs of resilience in their positive self-attributes.
Second, demographic moderation effects (gender, age, and birth-order position), type of CHC, intrusiveness of treatment, and life-threatening potential were examined and methodological moderation effects of year of publication, gender, sample size, response rate, informant, and comparison group were also tested.
Abstract and Introduction
Abstract
ObjectiveThe aim of this meta-analysis was to provide an up-to-date review of the literature to enhance our understanding of how chronic health conditions (CHCs) affect siblings, both positively and negatively.
MethodsPsycINFO and Medline were systematically searched. Inclusion criteria were as follows: (a) peer-reviewed, empirical research report; (b) sample n ≥ 10; and (c) reports statistics on siblings' internalizing problems, externalizing problems, and/or positive self-attributes.
ResultsOverall, there was a significant small negative effect of CHCs on siblings (d+ = −.10). Siblings of children with CHCs had more internalizing problems (d+ = .17), more externalizing problems (d+ = .08), and less positive self-attributes (d+ = −.09) than comparisons. Older siblings and siblings of children with life-threatening and/or highly intrusive CHCs were more at risk for psychological problems.
Conclusions This study identified several mechanisms through which CHCs affect siblings. Future research should focus on parent–child dynamics and the longitudinal development of positive self-attributes and internalizing problems as well as on identifying what works in services for siblings of children with CHCs.
Introduction
A number of studies investigated the impact of chronic health conditions (CHCs) on siblings' psychosocial functioning; nonetheless, the results appear to be difficult to synthesize (Faux, 1991; Houtzager, Grootenhuis, & Last, 1999; McKeever, 1993; Sharpe & Rossiter, 2002). The most recent previous meta-analysis is >8-years old, many additional studies have been published and more data on moderating variables are available. Therefore, to advance our understanding of this important topic, reviewing new studies is necessary (Barlow & Ellard, 2006). The aim of this study was to provide an up-to-date systematic review of the literature, building further on an earlier meta-analysis (Sharpe & Rossiter, 2002) by adding 13 (23%) new research reports with more data on moderating variables (Alderfer, Labay, & Kazak, 2003; Batte, Watson, & Amess, 2006; Giallo & Gavidia-Payne, 2006; Guite, Lobato, Shalon, Plante, & Kao, 2007; Houtzager, Grootenhuis, Caron, & Last, 2004; Houtzager, Grootenhuis, Hoekstra-Weebers, Caron, & Last, 2003; Houtzager, Grootenhuis, Hoekstra-Weebers, & Last, 2005; Houtzager, Oort et al., 2004; Ishizaki et al., 2005; Labay & Walco, 2004; McMahon, Noll, Michaud, & Johnson, 2001; Thornton et al., 2008; Wood, Sherman, Hamiwka, Blackman, & Wirrell, 2008). We examined two main questions: (a) how is the psychological functioning of siblings of children with CHCs compared to siblings of healthy children, and (b) can variations in siblings' psychological functioning be explained by methodological factors and demographic factors?
Psychological Functioning
Psychological functioning will be defined both in terms of mental health problems and positive self-attributes, because to this date, positive psychological functioning has not been reviewed separately from negative psychological functioning. This is important, since the presence of negative functioning does not imply the absence of positive functioning and vice versa. Negative psychological functioning can be defined in terms of internalizing problems (e.g., depression and anxiety) and externalizing problems (e.g., behavioral problems, aggression, and social problems). Positive psychological functioning can be defined as age-appropriate, normative, healthy affective, and social functioning in response to stresses engendered by a pediatric CHC (Wallander, Thompson, & Alriksson-Schmidt, 2003).
First, we hypothesized that CHCs entail important life events as well as daily hassles, which act as stressors for the affected child and his or her family (Kazak, Rourke, & Crump, 2003). There are several ways in which siblings can be challenged by CHCs. Siblings may be confronted with severe sequelae of the CHC; they may feel that they are powerless by standers of the medical-care process; they may experience differential parental treatment due to disproportionate care for the affected child; they may be assigned extra care-giving and domestic responsibilities; and they may be affected by parental distress reactions (Adams, Preveler, Stein, & Dunger, 1991; Faux, 1991; Houtzager, Grootenhuis et al., 2004). These stressors are associated with anxiety, depression, anger and jealousy (Adams et al., 1991; Faux, 1991; Houtzager, Grootenhuis et al., 2004). The former meta-analysis indeed indicated an overall homogeneous significant negative effect (d+ = −.09) of CHCs on siblings' functioning (Sharpe & Rossiter, 2002).
Second, we expected siblings to be more inclined to internalize, rather than externalize their feelings because siblings of children with CHCs do not always ask for parental attention as much as they really want to (Taylor, Fuggle, & Charman, 2001). Moreover, researchers have suggested that siblings keep their feelings to themselves to hide them from their already overburdened parents (Houtzager et al., 2005; Van Dongen-Melman, De Groot, Hählen, & Verhulst, 1995; Wood et al., 2008). The former meta-analysis indeed showed a stronger effect for internalizing than for externalizing problems (Sharpe & Rossiter, 2002).
Third, we stipulated that stressors may also generate resilient responses and reinforce personal assets (Rutter, 1990). The experience of having resisted and recovered from major life events and daily stressors can reinforce siblings' positive self-attributes, such as, self-concept, self-esteem, and sense of competence. In support of this resilience hypothesis, a few studies found that CHCs enhance prosocial behaviors, independence, and competence in siblings (Adams et al., 1991; Faux, 1991; Houtzager, Grootenhuis et al., 2004).
Moderating Influences on Siblings' Outcomes
Demographic Characteristics With regard to demographic characteristics, we hypothesized that younger children would be less negatively affected by CHCs than older children. Younger siblings' concepts of CHCs may protect them from appraising the situation as threatening, because parents and health-care providers are inclined to withhold difficult information from young siblings. At the same time, young children use their logic abilities to make spontaneous, naĂ¯ve inferences which help them understand and accept the situation in their own way (Rubovits & Siegel, 1994). Quite the opposite, older siblings are likely to be informed more elaborately and to possess the cognitive capacities to appreciate the consequences of CHCs more fully. Albeit that some studies also indicate that distress in siblings appears to lessen in response to better education about a child's condition (Lobato & Kao, 2005). Nevertheless, parents may also place higher demands on older sibling's capacity for self-sufficiency and may expect them to take on relatively more care-giving and domestic responsibilities (Houtzager et al., 2005; Labay & Walco, 2004; Sahler et al., 1994). If these responsibilities restrict social activities outside the home, this may conflict with the importance of developing peer relationships in adolescence (Houtzager et al., 2005). Finally, older siblings may increasingly assume a manager role in relation with the affected child, which may lead to asymmetry in the sibling relationship (Lobato, Miller, Barbour, Hall, & Pezzullo, 1991; Silver & Frohlinger, 2000). Consequently, the older sibling may be deprived from mutual sibling support and give and take experiences.
Furthermore, we formulated hypotheses about the moderating effect of CHC characteristics. In the research literature on pediatric CHCs, two general approaches can be discerned: a categorical and noncategorical (Gallo & Knafl, 1993). Categorical studies focus on associations between illness-specific characteristics and psychological functioning. The assumption is that each CHC engenders specific stressors. In this respect, Sharpe and Rossiter (2002) found that most CHCs had negative effects, whereas cardiac diseases had positive effects on siblings functioning. Cardiac diseases are often treated by surgical intervention and do not necessarily affect daily functioning to the same extent as those CHCs requiring (daily) intrusive treatment regimes.
In noncategorical studies, shared characteristics of different CHCs are examined in association with psychological functioning. The assumption is that CHCs, despite their biomedical uniqueness, share similar characteristics (Pless & Pinkerton, 1975; Stein & Jessop, 1982), such as functional impairments, visibility of impairments, mental retardation, intrusiveness of treatment, and life-threatening potential (Rolland, 1987; Stein & Jessop, 1982). In line with Sharpe and Rossiter (2002), we hypothesized that CHCs requiring intrusive treatment regimes affecting daily functioning (i.e., cancer, diabetes, anemia, and bowel disease) would have stronger negative effects than CHCs requiring surgical interventions without necessarily intruding daily functioning (i.e., cardiac anomalies, craniofacial anomalies, and hydrocephalus). Hence, we assumed that chronic daily hassles have a more negative impact on siblings than incidental major life events.
Methodological Factors Concerning the second research question, Sharpe and Rossiter (2002) also documented moderation effects of methodological aspects of studies, such as, year of publication (effects in older studies were stronger than in more recent studies), informant (effects based on parent reports were more negative than effects based on self-reports), and comparison group (effects in studies with normative data were more negative than in studies with control groups), but not of sample size. In line with these findings, we hypothesized that the negative effects of CHCs on siblings in older studies would be stronger than in more recent studies. We expected a positive effect of improvements in research methodology and changed educational, medical, and political contexts since the 1960s and 1970s, which have incorporated more advocacy, intervention, and habilitation efforts aimed at optimal participation and inclusion of children with CHCs and their families in society (Sharpe & Rossiter, 2002). Increasingly, parents of children with CHCs have become aware of the special needs in their well children. In 1987, a study showed that parents underestimated their well children's worries (Menke, 1987). In contrast, a more recent study showed that mothers were more alert to their well children's concerns (Taylor et al., 2001).
Further, we expected that studies with a low response rate were more likely to have excluded those siblings who avoid CHC-related stressors. Avoidance, in turn, may reflect a coping strategy that has been associated with mental health problems (Wallander et al., 2003). Hence, we hypothesized that studies with a higher response rate would report stronger negative effects than studies with a lower response rate.
Study Outline
A meta-analysis of 56 research reports (52 studies) was conducted. First, the effects of CHCs on siblings' internalizing problems, externalizing problems, and positive self-attributes were investigated. We expected siblings of children with CHCs to have an increased risk for psychological problems, especially internalizing problems. In addition to the previous meta-analysis, we explored whether they also showed signs of resilience in their positive self-attributes.
Second, demographic moderation effects (gender, age, and birth-order position), type of CHC, intrusiveness of treatment, and life-threatening potential were examined and methodological moderation effects of year of publication, gender, sample size, response rate, informant, and comparison group were also tested.
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