Responses of Children with Chronically Ill Siblings Essay

Chapter 1: Introduction

Chronic illness is a significant issue in the world today.  In the United States, the number of children suffering from chronic illness ranges between 4 and 7 million and about one-half to one million of them are actually patients of severe chronic childhood disability (Newacheck & Halfon, 1998; Patterson, 1988). The extremely high variation of data makes way for something between 5% and 40% of children suffer from a chronic illness (Newacheck & Halfon, 1998; Perrin & MacLean, 1988).  The variation itself is a proof of underestimation and the actual number might be much higher if we go along with the definition by  P. D. Williams (1997),  according to which “chronic illness is an ailment with a duration of 6 months or longer showing little change or slow progression” (p. 132).

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According to researchers, during the 1960`s, there’s only 1.8 percent of children in the U.S.  were reported to have a chronic health condition that limited their activities. In 2004, the rate rose to 7 percent. So, right now, we could say that more than three out of four American children have a diagnosable chronic disease, whether they are aware of it or not.

Further, according to the Journal of the American Medical Association, the number of children who live with a chronic disease such as cancer, diabetes, asthma and other chronic diseases has quadrupled in the past three decades.  For instance, nearly 10,000 American children will be diagnosed with cancer this year; approximately 80 percent will survive five years or more with treatments.  The number of children developing either Type 1 or Type 2 diabetes is also rising. Now, more than 175,000 American people age 20 or younger have diabetes.

Chronic illness to any of the member of the family actually affects the whole family. And when a child is diagnosed with a chronic illness, it has its effect not only on the suffering child but the entire family as a whole which includes his/her siblings. Though the children in most of the cases have been found to adapt their siblings’ chronic illness but the complete picture indicates that they have to experience stress and psychological problems (Association for Children with Disability, 2003). They have to suffer changes in the form of various aspects of life beginning with relationship with their parents in form of both quantity and quality, especially the mother who is so much preoccupied with ill child that there occurs an unintentional negligence in the amount of support to be provided to the other children (Cloues, 2006). The family being a system tends to maintain a sense of stability while resisting forces or changes that could cause a disruption to this stability. Chronic illness to a member especially child is a major disruption of family with stability being the first victim with later effects on other children (Cloues, 2006).

With the presence of a child with some chronic illness, the circumstance under which the family grows is quite unfamiliar. In the solution phase while coping with the problem, a process of change begun within the family with varying emotional responses effecting considerable sibling adjustment to manage the influx of strong and conflicting emotions (Association for Children with Disability, 2003).

A.  Statement of the Problem

Chronic illness does not just impact on the individual, but also on immediate and extended family members as well as the community as a whole. Many researchers have recognized this, and developed services for parents to aid family adjustment and coping.  However, studies for siblings of children with chronic illnesses are scarce even though the sibling relationship is typically the longest-lasting relationship in one’s life (Sibling Project, 2000). Siblings of children with chronic illness may grow up in a stressful environment with many responsibilities, and may not have the coping skills to deal with their experiences.  While, it is well known that childhood is typically a time of transition and personal change (e.g. Erikson, 1980; Havighurst, 1984), few researchers have focused on children.

Until recently the majority of research focused solely on the parents of the child with a chronic illness or the family as a whole. The specific effects on siblings have only been given adequate attention recently. This is surprising given again the fact that the sibling relationship is typically the longest-lasting relationship in one’s life (Sibling Project, 2000).   Further, the impact on siblings occurs throughout their life span and often they are left as the primary carers for their sibling with a chronic illness when their parents are no longer able to care for them (Strohm, 2001).  Hence this research project investigated the responses of children with chronically ill siblings.  Further, to examine the coping responses of these children.

B.  Background of the Study
A siblings’ response to growing up in a family that has a child with a disability needs to be understood in their context of their stage of development. Children respond to the events of day-to-day life based on their stage of physical, mental and emotional development. Children learn from their environment and through their relationship with their parents and siblings. The sibling relationship, which is life long, has an important influence on the development of a person’s identity. In later life, it can be a source of mutual support, depending on the quality of the early relationship.

            It is well known that childhood is typically a time of transition and personal challenge.  Due to this it is believed that childhood may be particularly challenging time for this unique group of individuals and thus these groups have been developed to focus on the issues that children with chronically ill siblings in particular may face.

            The research that has looked at how being a sibling of a child with special needs may impact on children, reports both positive and negative responses.  The positive responses include: siblings gaining increased understanding, tolerance, compassion, and appreciation of their own good health (Grossman, 1992), increased sympathy, helpfulness (Jacobs, 1989), and sensitivity (Cleveland & Miller, 1987).  The more negative responses that may be observed in some siblings include: feeling shame, anger and guilt (Grossman, 1992), an increased risk of anxiety (Wasserman, 1983), increased care taking responsibilities (Farber, 1980), the possibility of role crossover (Brody, Stoneman, Davis & Crapps, 1991), dominance (Begun, 1989), deprivation of parental attention, stigmatization (McKeever, 1983) and overall poor individual adjustment (McHale & Gamble, 1989).

            In addition, some siblings have trouble explaining their brother or sister’s disability to their friends.  They may have fewer opportunities to participate in put-of-home activities.  An obvious factor in this is that extra care giving responsibilities that many siblings have may result in less contact with friends.  Other researchers have found that discomfort on behalf of other children may result in healthy siblings having less contact with friends.  This may occur because peers have little understanding about chronic illnesses.  As a consequence teasing may occur and this may result in frustration for siblings who want to defend their sibling with a chronic illness however also want to avoid being rejected by their peers.  Younger children may also be afraid or feel uneasy around the ill child and consequently may decide that they do not want to visit their friend who has a brother or sister with a chronic illness (Trevino, 1989).  An additional stress for healthy siblings is that their parents often want them to include their sibling with chronic illness in activities with peers (Trevino).

            With the above issues in mind, this research proposal focus on the responses of children with chronically ill siblings with examination on how they cope up with the more challenging aspects of being a sibling with special needs.

            In general, Kate Strohm (2001) advocates that positive responses of children to chronically ill siblings can:

            ? Improve the mental health of siblings

            ? Allow siblings to reach their full potential

? Be a sound investment to service providers

? Improve the quality of life of people with chronic illnesses

? Rebalance societal views

Further, it is well known that if we increase the resilience and consequently the adjustment of one member of the family, this will ultimately have a positive effect on the whole family.  As it is recognized that the roles siblings play in their brother or sisters` health, happiness and community life are vital.  Kate Strohm (2000) argues that “if children have their feelings validated and needs met, they are much more likely to continue to be involved in their brother or sister’s life, and be able to supplement available services.”

C.  Statement of the Purpose
This study involves two purposes. The first purpose is to develop a measure of the responses of children with chronically ill siblings, and second to examine the coping responses of children who have siblings with chronic illness.

Moreover, in the first purpose, the measure was developed to accurately represent the responses of children on the effect of having a brother or sister with a chronic illness on the family and social lives of these children.  This will allow future research to more accurately explore the variables that influence the effect of chronic illness on children and evaluate the coping responses of these children.  In the process this measures provides up-to-date information on how siblings in our community believe having a brother or sister with a chronic illness has affected their lives.

D.  Research Question

Many studies exploring the responses of children have focused on whether children have “positive” or “negative” responses by having a brother or sister with chronic illness.  While many argue that there are “positive” effects of having a brother or sister with a chronic illness (e.g., McConachie & Domb, 1991; Miller, 1995), others have reported “negative” side effects, (e.g., Friedrich & Friedrich, 1991).  Some of the positive effects on siblings include:  increased: increased anxiety (Wasserman, 1993), behavioural problems (Tritt & Esses, 1998) and caretaking responsibilities (Farber, 1990) have been reported as negative effects for siblings.  In other cases researchers have reported a balance of both positive and negative effects.

Hence this research hopes to answer the following questions:

1.          Are the responses of children with chronically ill siblings a positive, a negative or a balance of both positive and negative?

2.       What are the coping responses of children who have siblings with

        chronic illnesses?

Chapter 2:  Review of the Literature

            The responses of children with chronically ill siblings fall into three categories.  These include positive effects, negative effects and a more balanced view.

Positive Effects

            Studies have found positive effect in the area of increased understanding or helpfulness.  For example, Jacobs (1969) found siblings to be generally sympathetic, understanding and helpful, illustrating that they were not unfavourably affected by having a disabled brother or sister.  In addition, McHale et al. (1986) found that siblings tended to be supportive and accepting of there brother or sister with chronic illness and Miller (1984) found that some siblings exhibit a sense of pride in being able to aid the development and growth of their brother or sister with disability.

An additional factor is increased feelings of responsibility.  Wilson et al. (1989) found that younger siblings of children with severe chronic illness demonstrated a consistently high level of participation in the day- to-day activities of their brothers or sisters with special needs.  They also tended to emphasize the positive aspects of their family life, without ‘glossing over’ the difficulties of having a brother or sister with special needs.

Negative Effects

            While the positive effects of having a brother or sister with a chronic illness highlighted in the literature, negative consequences have also been reported.   These includes siblings experiencing increased feelings of shame, anger, guilt (Grossman, 1992), loneliness (Bagenholm & Gillberg, 1991), anxiety (Rayner & Moore, 2004; Wasserman, 1993), behaviour problems (Tritt & Esses, 1998), aggression (Yayner & Moore, 2004), caretaking responsibilities (Farber, 1980), dominance (Begun, 1989), and overall poor adjustment, (Mc Hale & Gamble, 1989).  In addition, as discussed previously, researchers have reported the occurrence of role tension or crossover (Brody et al., 1991; Farber, 1989), deprivation of parental attention and stigmatization (McKeever, 1983).

            Clinical observations have been provided further information.  Observations by San Martino and Newman (1984) revealed that siblings of disabled children were an easily recognizable group.  They reported that some younger siblings were observed to over identify with their brother or sister with a chronic illness and thus found it difficult to establish their identity as separate from that of their sibling.  Schild (1984) also (informally) observed that non disabled children were finding it difficult to relate to the experience of having a brother or sister with chronic illness.

            Woodburn (1983) and Gath (1983) found reactions of jealousy, resentment and embarrassment to be common for the non disabled siblings.  Interviews with ten siblings conducted by McConschie and Domb (1981), however, did not find apparent differences in levels of embarrassment, conflict amount of domestic work, or the playful interaction between siblings of children with a chronic illness and a comparison group. However, it is important to note that this later study utilized a small sample giving little opportunity for any differences to emerge.

Research by Carr (1985) suggested that jealousy reactions may decrease with age.  Here results indicated that 48% of siblings of children with asthma reported experiencing feelings of jealousy at age 4, while only 33% reported jealousy at age 11 and non at 21 years of age.  The study also found that jealousy was more likely to occur when the age difference between the siblings was less than two years.

            Concern about the future also appears to be an issue for some siblings.  Wilson et al. (1992) found that although the brothers and sisters in their study reported a stable positive attitude towards their siblings with chronic illness, most of the siblings in their sample tended to regard their brother with disability as a life long commitment.  These results are similar to those of Baganholm & Gilberg, 1991) who compared 20 children who had a brother or sister with cancer.  Twenty children who had brother or sister with chronic illness and twenty children who did not have a brother or sister with any disability.  They found that the siblings of children with cancer or an intellectual disability overall appeared more concerned about the future than the comparison group and often viewed their disabled brother or sister as a ‘burden’.

A More Balanced View

            A number of studies have given us a fuller picture of what life is like for siblings by providing a more balanced view of both positive and negative effects (e.g., Grossman, 1972; Leonard, 1997; Nesa, 1999).  Grossman reported that 45% of the young adult college students surveyed believed that they had suffered because they had a brother or sister with a disability.  Nevertheless, an equal percentage of siblings reported benefits, which included increased compassion, tolerance and understanding for others.  Similarly Leonard asked parents to outline the positive and negative facets of siblings` experience of having a brother or sister with asthma.  Over the thirds of siblings reported negative effects such as time restrictions and increased parental stress; impaired family recreation and socialisation; embarrassment by sibling and ostracism by peers; no regular sibling relationship and increased responsibilities. However, over 70% reported positive facets of their experience such as tolerance and understanding of the illness and differences; patience and willingness to help; compassion and care, appreciation of one’s own talent and life in general; and greater maturity and strength.  Nesa (1999) found similar results in interviews with 7-13 year old siblings with all of the participants in the study reporting that they enjoyed having their brother/sister with chronic illness in their family.  However, they did display concern over the future and the reactions of their peers.  In accordance with this, the work of Furman and Buhrmester (1986) documented over 65% of siblings in their study as reporting positive aspects in their relationships with their siblings such as admiration, affection and companionship, while 91% reported antagonism as a negative aspect of their relationship and 79% stated that quarrelling occurred often.

The literature reviewed suggests that it is likely that there are both positives and negatives influences on the family lives of siblings of children with a chronic illness.  A number of studies (e.g., Crinc & Leconte, 1986) have suggested that peer-related areas of siblings` lives are influenced.  Hence, another important area of impact is a sibling’s social life.

Coping Responses for Siblings

            Many researchers in this area have focused on how siblings of children with special needs differ from other children in the population, with many focusing on their “coping”.  Some argue that siblings may be at risk of coping problems (e.g., Bagenholm & Gillberg, 1991; Breslau & Prabucki, 1987; Colby, 1995; Lobato, Barbour, Hall, & Miller, 1987).  Others argue that there is no difference between the psychological adjustment or coping of siblings of children with special needs and siblings in mainstream society (e.g., Auletta & DeRosa, 1991; Bischoff & Tingstrom, 1991; Gath &Gumley, 1987; Hannah & Midlarsky, 1999).

            Research that has explored the coping of siblings of children with special needs compared to other siblings of children with no disabilities has raised various methodological issues.  Cuskelly, Chant and Hayes (1998) argued that comparison groups used for past studies have often been insufficient.  They contend that some studies have simply compared sibling data with normative data while others have failed to specify the equivalence of participants in experimental and comparison groups on important demographic variables.

Similarly, most studies have lacked control groups and thus wrongly assumed higher numbers of psychological problems in siblings.  Ferrari (1984) reported that studies that included control groups have generally reported lower levels of psychological coping problems.  Summers, White and Summers (1994) conducted a review and analysis of literature in the area and found “the higher the quality of the study, the less likely a significant effect was to be found”, (p.180).

Nevertheless, there are a number of variables that have been found to influence the coping of siblings in the family.

Demographic Factors

            Demographic factors are associated with adjustment and coping problems in children in general and hence have been found to be associated with coping of siblings of children with disabilities.  Table 1 below outlines some of these variables.

Table 1.

Demographic Factors Influencing Sibling Coping Responses

Demographic Factors                      Researchers

Gender                                              Crnic & Leconte (1986); Farber (1989);

                                                           Grossman (1982);

Age                                                    Stoneman & Brody (1993)

Birth-order                                       Lobato (1990); Stoneman & Brody (1993);

                                                           Graliker, Fisher, & Koch, (1982)

Age-gap between siblings                Lobato (1990); Stoneman & Brody (1993);

                                                           Wilson et al. (1989)

Number of children in family         Lobato (1990)

Socio-economic status                      Crnic & Leconte (1986); Grossman (1982)

Extent of disability                           Henderson & Vanderberg (1992); Minnes

                                                             (1988); Stoneman & Brody (1993);

Type of disability                             Hodapp, Fidler, & Smith (1998)

Birth order appears to mediate sibling functioning with first-born children and older siblings being less affected than younger siblings (e.g., Graliker et al., 1982; Grossman, 1982).  One explanation for this is that first born and older children have had a period of time where they have been in a ‘typical’ family household and thus less likely to be influenced when the child with a disability is born.

            Lobato (1990) and Stoneman and Brody (1993) argue that the age-gap between siblings impacts on their coping.  For example, Wilson et al. (1989) report that siblings in their study who were less than three years apart got along extremely well, and suggest that the closer in age the greater the similarity between the two.  Others have not found evidence to support the relationship between these two variables (e.g. Abramovitch, Corter, & Lando, 1989; Abramovitch, Corter, & Pepler, 1980; Dunn & Kendrick, 1982).

            The extent of a child’s disability also appears to impact on siblings.  Minnes (1988) reported that parents of children with a mild disability may experience (1988) reported that parents of children with a mild disability may experience less stress than those of children with a severe disability.

However,  Minnes explains that the contrary has also been found.  Many individuals with chronic illnesses also have other disabilities that may influence a sibling’s homelife.  The type of disability has also been found to influence siblings` adjustment.

Other Psychosocial Factors

            Other variables that have been investigated in relation to sibling coping include psychosocial factors for the individual child or the family.  These variables are presented in Table 2.

Table 2

Other Variables Influencing Sibling Adjustment

Other Variables                                  Researchers

Temperament                                     Dunn & Kendrick (1982)

Parental attitudes                               Cadwell & Guze (1980); Trevino (1989)

Family support and resources             Dyson, Edgar, & Crnic (1989)

Parental stress levels                          Dyson et al. (1989)

Knowledge of disability                    Roeyers & Mycke (1995)

Temperament has been linked to sibling coping with Dunn and Kendrick (1982) finding evidence that siblings            temperament before the birth of their brother or sister with special needs were strongly correlated with parental reports or problems later on.  In addition, the knowledge of their sibling’s condition appears to influence coping.  For example, Roeyers and Mycke (1995) found siblings` knowledge of aetiology correlated with a more positive sibling relationship (as measured by acceptance-rejection, warmth-hostility, contact-leadership and embarrassment).

            Family factors appear to impact directly on sibling coping.  For example, Schreiber and Feeley (1985) argued that parental attitudes that are “constructive” and “supportive” allow siblings to gain a greater sense of responsibility, develop greater maturity, patience and tolerance.  Grossman (1982) stated that mothers` attitudes in particular are very influential on children’s` acceptance pf their sibling with a disability, while Peck and Stephens (1980) suggested that a father’s attitude might affect the adjustment of the whole family.  In addition, Dyson et al. (1989) found that family attention to personal growth was an important factor in sibling coping.

Trevino (1979) argues that the following combination of factors produce adverse affects on sibling’s coping:

1.      There are only two siblings, a normal and a disabled child,

2.      The normal sibling is close in age to or younger than the disables sibling, or is the oldest female child,.

3.      The normal and disabled child are the same sex, or

4.      The parents are unable to accept the illness.

Problems of Past Studies

            Despite the extensive research focusing on the family coping responses of having a child with chronic illness, most research has focused on the parents of the child or the family unit (e.g., Byrne & Cunningham, 1985; Failla & Jones, 1991; Frey, Greenberg, & Fewell, 1989; Heaman, 1995; Lambrenos, Weindling, Calam, & Cox, 1996; Sloper, Knussen, Turner, & Cunningham, 1991) with fewer mentioning the specific needs of siblings.

The sibling relationship has been regarded as one of the most important relationship people experience throughout their lives (e.g., Irish, 1984; Lobato, 1990) and thus the impact of having a sibling with a chronic illness should be considered when trying to interpret behavior.

            Siblings ages have also varied greatly with most studies including siblings from very large age ranges and both younger and older siblings (Cuskelly, 1999).  This makes it difficult to compare the results of different studies and may have an effect on the outcomes, as studies have shown that a child’s age influences his or her coping responses (e.g., Lobato, 1993) as well as their age in relation to the child with chronic illness (e.g., Grossman, 1982).

            Of major concern to most studies in this area is participant numbers.  While many disability organizations have information on the child who has a disability and their parents, they typically hold no information on whether or not the child has siblings and if so what their age or gender is (Nesa, 1999).  This makes it challenging for researchers to recruit sufficient participants to meet statistical power requirements.  Researchers have to work hard to recruit potential participants for their research without biasing their population.

            There are a number of problems found in past research, including recruitment methods, limited samples and lack of control groups, some of which are difficult to avoid.  The proposed study aims to rectify some of the problems that have been found in past research, in order to produce not only reliable and valid results, but a current account of the feelings of siblings.

Overall Conclusions of Past Studies

            There is significant evidence to suggest that chronic illness not only impacts on the individual, but family members and carers as well.  The literature indicates that family members may experience higher levels of stress than the child with chronic illness.  However, many of these studies overlook the specific effect on siblings despite the fact that the impact on siblings typically occurs throughout their life span.

            The literature review has revealed the following effects on sibling’s family lives: stigmatization decreased social support, less attention from parents and increased responsibility.  Moreover, research has shown many influences in the social lives of siblings including: less opportunity to engage in out of home activities, teasing, ostracism by peers and difficulty explaining to peers about their sibling with a disability.

            Some of the research has focused on the coping responses of this group compared to comparison groups.  However, it is difficult to draw meaningful conclusions from some studies due to methodological problems with measure, sample sizes and generalization.  There are numerous factors that influence the coping of siblings.  Demographic factors such as age, gender, family size and birth order have been shown to be related.  However, it is important to note that some of these variables are correlated with coping responses for children in general.  Other variables discussed that may impact on coping levels of siblings specifically include parental stress levels, social support, type of disability, and severity of disability.

Chapter 3: Methodology

            A multi-method approach is the best method to be used in this study.  This method occurs in three stages, combining both qualitative, and quantitative data in order to produce the most reliable and valid measure of responses of children with siblings of chronic illness.

            Stage 1 of this study involves the development of an item pool forming the measure on the impact of the responses of children with chronically ill siblings.  In this chapter the materials and procedures relating to the development of the measure are discussed along with the recruitment of the sample.

The Multi-Method Approach

Substantive theorising emphasises the importance of researchers using multiple methods and becoming very familiar with the domain in which they are researching (Wicker, 1989).  One path researchers can follow is to initially focus on conceptual concerns, then explore the substantive domain and finally consider the methodology to be employed (Wicker).  This path will be taken in the present study, with conceptual concerns first addressed, then the substantive domain will be explored in order to develop a comprehensive initial item pool for the effect of the chronic illnesses to children with chronically ill siblings.   Wicker (p.539) argues, “Substantive theorising …does require multiple methods to expose more of the domain than can be learned from a single approach”.  In the present study multiple methods will be used to develop an item pool and investigate the validity of the item as well as to reduce the item pool.

First, the methodology of Study 1 follows some of the principals of ‘theoretical keying’.  Shackelton and Fletcher (1984) explain the process of theoretical keying as initially “writing a large number of items that seem likely to tap {the construct measured}…they may be chosen on theory or intuition”(Shackelton & Fletcher, p. 89).  Thus multiple sources of information were used to develop a large initial item pool.  In total 89 sources of information including journal articles, existing measures and books were examined for potential items.

In the present study, siblings themselves will serve as the “experts” who evaluated the importance/relevance of items and issues presented through questionnaires completed in their homes.  Collection of qualitative data on the validity and salience of items will then be conducted.  This multi-method approach ensured that the responses adequately represented the views of children with chronically ill siblings.

Potential items were constructed from the sources by extracting a number of direct quotes, common themes and scenarios for siblings, stories or research findings from the sources.  This procedure ensured that the item pool had good content validity.

In addition, 21 existing items from the three measures (The Sibling Impact Questionnaire referred to in Eisenberg et al., 1998; The Sibling Problem Questionnaire by McHale et al., 1986; and The Sibling Statement Scale by Wilson et al., 1989) will be used. These items were kept identical or only reworded slightly to ensure the content of the item was retained.  Validation of these items then involved sending siblings of children with chronic illness a draft of the item pool and asking them to indicate the importance/relevance of items and subscales for them.

Quantitative Reviews of the Literature

A recent methodological advance to resolve discrepant findings across studies is meta-analysis. This quantitative review strategy is employed to assess factors both substantive and methodological that produce inconsistencies across studies (Schmidt,

1992). Howe (1993) employed a vote-count meta analysis strategy to review 21 studies with control groups or normative reference groups that examined siblings of children with chronic illness. A vote count meta-analysis is a simple tabulation of studies by their outcomes. Howe concluded that siblings of children with a chronic illness were at higher risk than other children for psychological problems, that neurological conditions produced more negative effects than nonneurological conditions, and that negative effects were most often manifested as internalizing behaviors. Summers, White, and Summers (1994) conducted a vote-count meta-analysis of 13 studies of siblings of children with a chronic illness or an intellectual disability. These 13 studies were assessed for their methodological quality and research methodology, and study results were categorized as positive, negative, or nonsignificant. These researchers concluded that being the sibling of a child with a disability had both negative and positive consequences, that parent surveys and direct observation generated more negative findings than child self-reports, and that higher quality studies found fewer differences between siblings and comparison samples. Like Howe’s (1993) review of the literature, the Summers et al. meta-analysis was constrained by the limitations to the vote-count review strategy: no estimation of effect size magnitude, no consideration of sample size, and no mechanism for evaluating systematically the impact of moderator variables.

            A recent meta-analysis of 25 studies and 79 effect sizes from the literature on the siblings of individuals with intellectual disabilities (Rossiter & Sharpe, 2001) revealed a small negative effect for having a sibling with an intellectual disability that could not be attributed to a publication bias or some other artifact. This negative effect was most pronounced for measures of psychological functioning, especially depression, and adult reports versus child self reports. This meta-analysis pertains to the siblings of children with a chronic illness. Based on the findings from traditional literature reviews and the vote count meta-analyses, a negative effect was anticipated

for having a sibling with a chronic illness. A number of hypotheses based on methodological and substantive issues were then derived.

Methodological Issues.

            The first methodological hypothesis was that studies published more recently would show fewer negative and more positive outcomes than earlier studies. Lamorey (1999) observed more recent studies to show fewer negative effects and more variation in outcomes. A second methodological hypothesis was that more negative effects would be found for parental reports than sibling self reports (Summers et al., 1994). The third methodological hypothesis was that studies employing normative data for comparison to the sibling samples would produce negative effects of greater magnitude than found for studies that employed matched control groups (Lavigne & Faier-Routman, 1992).

Substantive Issues.

            A number of hypotheses were also made that related to substantive variables. First, a larger negative effect was expected for internalizing over externalizing behaviors. Howe (1993) found four of eleven studies of siblings of children with chronic illness showed a negative effect for internalizing behavior compared to only one of eight studies for externalizing behaviors. Second, sibling outcomes were anticipated to vary by the chronic disease and its features. One view is many chronic conditions of childhood produce similar psychological and behavioral effects (Vessey & Mebane, 2000). Childhood chronic illnesses, however, vary on dimensions such as etiology, age of onset, impact on functioning, and prognosis (see Lobato, Faust, &

Spirito, 1988). More severe chronic illnesses place greater restrictions on the child’s activities (Newacheck & Taylor, 1992), and perhaps greater demands on parents, siblings, the family system, and the community (Patterson, 1988). Third, the  interaction of sibling gender and birth order was considered (Howe, 1993; Williams, 1997).

Method

Fifty published studies from 1976 to 2000, representing over twenty-five hundred siblings of children with chronic illness, were identified from computer searches of databases such as PsycLit and MEDLINE, using key words such as “siblings” and “illness,” from previous reviews of the literature and from the reference sections of located studies. Excluded from the meta-analysis were case studies, nonempirical or qualitative studies, or studies without an appropriate comparison group or normative data. Studies were also excluded that evaluated the reactions of healthy siblings to the illness or death of a brother or sister or pertained to the adult siblings of individuals with a chronic illness. Studies that employed no comparison group but that provided normative data were included in this meta-analysis. Unpublished studies were not sought for inclusion in this meta-analysis. First, it is almost impossible to collect all published studies in all languages, much less all unpublished studies. Second, the  peer review process for published studies serves as an albeit imperfect form of quality control. Third, there is evidence that publication bias is less serious than once feared (Sharpe, 1997). Publication bias, the socalled “file-drawer” problem, is the belief that the failure to include unpublished studies in the metaanalysis might inflate the magnitude of effect sizes, given that published studies may overrepresent statistically

significant findings. To ascertain the likelihood of such a publication bias, statistical and graphical analyses of effect sizes were conducted. Studies by the same author(s) that appeared to examine the same participants (e.g., Breslau & Prabucki, 1987; Breslau, Weitzman, & Messenger, 1981) were treated as a single study for the purposes of this meta-analysis. Three of the primary studies (Faux, 1991; Stawski, Averbach, Barasch, Lerner, & Zimin, 1997; Wood et al., 1988) provided separate data for the siblings of children with distinctly different chronic illnesses. These sub samples were treated as separate studies. In total, 51 study-level effect size statistics were evaluated. Each study was coded for method of data collection (child self-report, parent report, or direct observation), chronic illness, age of siblings, gender of siblings, number of sibling and comparison participants, and dependent measure

category: psychological functioning (e.g., Internalizing subscales of the Child Behavior Checklist), self concept (e.g., Piers-Harris Self-Concept scale), caretaking, sibling relationship, peer activities (e.g., Social Competence subscale of the Child Behavior Checklist), cognitive functioning (e.g., intelligence test scores), and cognitive development (e.g., school performance). Parent and teacher reports were combined because only five studies asked teachers to complete a dependent measure. Four of the five comparisons based on teacher reports were not statistically significant. All codings were completed by the first author and checked independently by the second author. Disagreements were resolved by discussion.

Effect Size Calculations.

An effect size statistic d (Hedges & Olkin, 1985) was calculated for each relevant outcome by subtracting the mean score for comparison participants from the mean score for siblings with a chronic illness and by dividing that sum by a pooled standard deviation. Normative data provided by the primary authors in the published studies were substituted for data from comparison participants when the latter were not provided. If means and standard deviations were not reported, effect sizes were calculated from summary statistics (e.g., t statistics, p values) by employing the metaanalysis software package D-Stat (Johnson, 1989). Effect sizes were weighted by the reciprocal of their variance as recommended by Hedges and Olkin (1985). When no data were reported in a primary study but the difference between the sibling and comparison groups was said to be nonsignificant, an effect size of zero was recorded. For all analyses, negative effect sizes reflect less positive functioning for siblings of children with a chronic illness relative to comparison children or normative data.

Effect sizes from the same study, chronic illness, dependent measure category, and method of data collection were combined and averaged. The resulting set of 103 outcome-level effect sizes was evaluated for their statistical significance (95% confidence interval around zero) and their homogeneity (Hedges & Olkin, 1985). The effect sizes from the 51 studies were also examined where appropriate to do so. The overall test for homogeneity (QT) assesses whether a set of effect sizes is internally consistent. For most meta-analyses, homogeneity of the set of effect sizes is not achieved without some combination of outlier analysis and partitioning of effect sizes into smaller clusters on the basis of moderator variables. The identification and removal of outliers are appropriate if homogeneity can be achieved by deleting no more than 20% of the effect sizes (Hedges & Olkin, 1985). Regardless of the outcome of the overall test of homogeneity, however, tests of moderator variables are justified when based on theoretical considerations (see Hall & Rosenthal, 1991). After the overall test for homogeneity, effect size clusters were created on the basis of  moderator variables (e.g., method of data collection). The homogeneity of effect sizes within clusters (QW) and differences between mean effect sizes across clusters

(QB) were calculated. A significant QB value implies differences in the mean effect sizes associated with the effect size clusters. Interpretation of such an outcome is less clear if there are significant differences in effect sizes within one or more clusters (the QW statistic for each cluster). When moderator variables were continuous (e.g., sample size), correlations between effect sizes and the moderator variables were

calculated.

Results

The results are divided into three sections. The first section reports on tests of effect sizes: tests of the magnitude of mean effect sizes, tests for publication bias, and tests of homogeneity of effect sizes. The second section examines the role of methodological moderator variables, specifically, year of publication, method of data collection, and comparison group versus normative data. The third section considers substantive moderator variables, specifically, categories of dependent measures, differences by chronic illness, and effects of gender, birth order, and age of sibling.

Tests of Effect Sizes

Overall Effect Size.

The weighted mean effect size for the 103 outcome-level effect sizes was Md = –.20 (the equivalent of r = –.10), a negative value significantly different from zero (95% confidence interval = –23 to –.16). This effect size may be an underestimation of

the true effect size magnitude. Thirty-two of the 103 effect sizes were conservatively coded as zero because the authors of those primary studies did not report statistics but stated differences were not significant. The weighted mean effect size after deleting those 30 observations was Md = –.26 (95% confidence interval = –.30 to –.22). The weighted mean effect size for the 51 studies was Md = –.21 (95% confidence interval

= –.26 to –.16).

Publication Bias.

  Given that only published studies were included in the meta-analysis, there is a risk of publication bias as studies that do not find statistically significant results may not be published and, therefore, may not be included in the meta-analysis. To investigate publication bias, four approaches were adopted. The first was funnel plots created by plotting sample sizes for the siblings against effect sizes at the study and outcome level. The plots were funnelshaped. Data points were distributed across the lower

left and right quadrants and were less frequent as sample size increased. This pattern is not consistent with a publication bias (Begg, 1994). Second, Wang and Bushman (1998) recommend a normal quantile plot over a funnel plot to assess publication bias. A normal quantile plot involves plotting the effect sizes against the quantiles or percentile ranks of the normal distribution. There was no gap in the effect sizes for the 51 effect sizes at the study level and a small gap around zero for the 103 effect sizes at the outcome level. Third, calculation of the fail-safe N statistic (Cooper, 1998) found that there would have to be an additional 566 nonsignificant studies to reverse the significant negative result from the 51 studies. This number is much larger than the  cutoff value of 265 studies (five times the number of retrieved studies plus 10; Cooper, 1998). Fourth, one would expect a relationship between sample size and effect size magnitude if a publication bias were operating as larger effects, both positive and negative, would be found for studies with smaller sample sizes that do not have the statistical power to detect small effects. There was no significant correlation, however, between the number of sibling participants and the absolute value of the effect sizes at the outcome level (r [101] = .06) or study level (r [49] = .07).

Tests of Homogeneity.

            Heterogeneity of effect sizes was found for both the 103 outcome-level effect sizes (QT [102] = 354.7, p < .0001) and the 51 study-level effect sizes (QT [50] = 139.8, p < .0001). At the outcomelevel, deletion of 11 outcomes (10.7% of the 103

outcomes) resulted in a homogeneous set (QT [91] = 112.6, p < .12). The mean effect size magnitude was reduced from Md = –.20 for the 103 outcomes to Md =–.09 for 92 outcomes (95% confidence interval = –.13 to –.05). At the level of the 51 studies, homogeneity could be achieved by the exclusion of five studies (9.8% of the database) (QT [45)]= 61.4, p < .10). The mean effect size magnitude was reduced from Md = –.26 for the 51 studies to Md = –.09 for 46 studies (95% confidence interval = –.14 to –.02).

Methodological Moderator Variables

Year of Publication.

 There were modest, albeit nonsignificant, correlations between publication year

and study-level effect sizes (r [49] = .21, p < .14). The interpretation for a positive correlation is that effect sizes were somewhat more positive for recent studies. There was also a modest negative correlation between year of publication and sample size at the study-level (r [49] = –.22, p <.12). This would suggest the sample size has declined over the past 20 years. More studies of siblings of children with a chronic illness were published in the 1990s (n = 27) than the 1980s (n = 19) and 1970s (n = 4). However, there were five large-scale studies (i.e., more than 100 siblings of children with a chronic illness) published in the 1980s compared to only two such studies published in the 1990s.

Method of Data Collection.

 Another methodological variable hypothesized to moderate effect size magnitude was method of data collection. Sixty-one outcomes were associated with parent report. Child self-report accounted for the remaining 41 outcomes. Only one outcome was the product of direct observation. After deleting the direct observation outcome for this analysis only, the difference between the mean effect sizes associated with child reports and parent reports was significant (QB [1] = 7.0, p < .0001, see Table I). Although both the child reports and parental reports mean effect sizes were significantly different from zero, the mean effect size for parental reports (Md = –.23) was almost twice as large as that for child reports (Md = –.13).

Discussion

This meta-analysis found a statistically significant and negative overall effect for having a sibling with a chronic illness. This finding is consistent with quantitative reviews of the relevant literature that employed vote counts of significant and nonsignificant effects (e.g., Howe, 1993; Summers et al., 1994) and traditional literature reviews (e.g., Faux, 1993; Hannah & Midlarsky, 1985; McKeever, 1983; Packman, 1999; Williams, 1997). The magnitude of this negative overall effect was an effect size of –.20. Cohen’s (1988) widely adopted criteria for effect size magnitude places the magnitude of the effect for siblings of children with a chronic illness at the upper limits of a “small” effect size. This effect size was substantially

larger than the mean effect sizes reported by Rossiter and Sharpe (2001) for the siblings of children with intellectual disabilities, but much smaller than the

mean effect sizes calculated by Lavigne and Faier- Routman (1992) for the psychological adjustment of children with a chronic illness. Efforts were made to show that the negative outcome for the siblings of children with a chronic illness

could not be accounted for by restricting our meta-analysis to published studies. An examination of the pattern of effect sizes from funnel and normal quantile plots, and results from calculation of failsafe Ns and correlations between sample size and effect

size, all serve as evidence against the results being an artifact of publication status. Furthermore, a computer search was conducted of the Dissertations Abstracts computer database using keywords from our computer searches. From the reading of

the abstracts, 9 dissertations generated negative outcomes, 15 showed no differences or mixed results, and only 1 dissertation (Gold, 1999) produced a positive outcome for siblings of children with a chronic illness.

            To investigate some possible determinants for the negative effect of having a sibling with a chronic illness, we examined a number of potential moderator variables. Methodological moderator variables were examined first. With the correcting of methodological flaws in early studies (Faux, 1993), reduction in mortality rates and improvements in the quality of life for children with chronic illnesses (Jackson, 2000), and the development of effective psychological interventions for children with  chronic illnesses (see Kibby, Tyc, & Mulhern, 1998), we anticipated fewer negative findings for siblings in more recent studies. A correlation between effect size and year of publication was modest but in the anticipated direction. What has changed most over the last 30 years is our attitudes toward individuals with disabilities. In

contrasting early studies with more recent research, Lamorey (1999) noted “the educational, political, and medical context of disability in the 1960s and 1970s incorporated little of the advocacy, intervention and habilitation efforts, normalization, and inclusion that characterize more current views of disability” (p. 81). A second encouraging result relating to year of publication was that more studies investigating the siblings of children with a chronic illness were published in the last decade than in all previous decades. The influence of two other methodological moderator variables was considered: parent reports versus child self-reports and comparison data versus normative data. In the first case, parental reports were decidedly more negative than child self-reports. Children may not perceive any negative effects or may deny such effects until adulthood. Conversely, parents may be overprotective of their children or may be overly sensitive to negative outcomes.  Collaborative data from fathers and mothers of the siblings and from unbiased observers are needed to address this question. In the second case, siblings of children with a chronic illness fared better relative to a control group than when compared to normative data. Some authors went to considerable effort to ensure equivalency between sibling and control participants. Silver and Frohlinger-Graham (2000), for example, recruited female sibling and control group participants from the same university medical center and matched for sibling age, gender, birth order, and

age spacing. Given heterogeneous effect sizes and negative effects after partitioning by methodological moderator variables, a number of substantive moderator variables were considered. Classification of dependent measures into discrete categories revealed psychological functioning, peer activities, and cognitive development were associated with negative mean effect sizes. Consistent with Rossiter and Sharpe’s

(2001) meta-analysis of siblings of individuals with intellectual disabilities, the sibling relationship was the one category associated with a positive though not significant effect size. The sibling relationship is paradoxical, incorporating both conflict and companionship. Although having a sibling with a chronic illness may be associated with difficulties across a number of domains, the sibling relationship may be resilient and perhaps even enhanced in the context of disability.

Consistent with previous reviews of this and related literatures (Howe, 1993; Rossiter & Sharpe, 2001), internalizing behaviors such as anxiety and depression were associated with larger negative effects than were externalizing behaviors. One can

only speculate as to why the brothers and sisters of children with a chronic illness respond by internalizing their difficulties. A caretaker role involves the sibling as a quasi-parent, participating in such activities as feeding and dressing their sibling.  There is evidence that the caretaking role is elevated when one sibling has a disability (Boyce & Barnett, 1993), and internalizing behaviors may be a response to these inflated caretaking demands (Gold, 1993). Frustrations arising from parental  inattention or caretaking responsibilities may not be easily externalized by the

healthy sibling into behaviors such as aggression, given the precarious health status of their brother or sister. A second substantive variable that was considered was the nature of the chronic illness itself. Lavigne and Faier-Routman (1992) suggest that it is not the features of any specific disease that most affect psychological functioning, but rather features that vary across childhood chronic diseases, such as whether the disease is life-threatening. In this study, no difference was found in the functioning of siblings when their brother or sister had a more or less severe (i.e., mortality rates) childhood illness. However, siblings of children that have a chronic illness that affects their day-to-day functioning (e.g., bowel disease, cancer) are more negatively affected than siblings of children less in need of intense, daily assistance (e.g., craniofacial anomalies). Again, this alludes to the central role of care giving demands and the amount of parental attention required by a child with a chronic illness. There are data available for broad categories of chronic illnesses on days of limited activity, proportion of children unable to engage in activities, number of school absences, and physician contacts (see Newacheck & Halfon, 1998). As better methods of quantifying disease severity are developed, future researchers should investigate further the impact of disease factors on psychological functioning of siblings.

Lavigne and Faier-Routman’s (1992) metaanalysis of 87 studies of children with a chronic illness produced results strikingly parallel to our findings from the sibling literature. Lavigne and Faier-Routman found negative effects for overall adjustment

and for measures of internalizing behaviors, externalizing behaviors, and self-concept. Larger effect sizes were found for internalizing behaviors over externalizing behavior, and for studies that employed normative comparisons over control groups. Lavigne and Faier-Routman also concluded the risk for psychological problems varied by disease. Any meta-analysis is limited by the nature and number of primary studies, the data reported, the variables assessed, and the design of those primary studies. All the studies in this meta-analysis were published, so our results should not be generalized  to unpublished research. We were unable to report on the effect of variables such as gender and birth order or other moderator variables such as family and parental functioning (see Lavigne & Faier-Routman, 1993), as this information was not readily available in most reviewed studies. One last limitation is that our examination of moderator variables employed what is fundamentally a correlational technique to evaluate the results from primary studies that assessed preexisting groups. On that basis, we cannot conclude there is a causal relationship between adjustment problems and having a sibling with a chronic illness. One fear often expressed regarding meta-analysis is that a quantitative review may inhibit future research by prematurely closing an area of inquiry (Boden, 1992). To the contrary, we believe this  meta analysis highlights the need for more, not less, research into the psychological functioning of siblings of children with a chronic illness. We hope that future research continues to employ comparison groups, but also direct observation, longitudinal, and qualitative research designs, nonreactive dependent measures, the reporting of gender and birth order data, and the assessment of parental/familial risk factors. We would also hope that more consideration will be given to features of specific chronic

childhood illnesses. There is also the need for studies of adult siblings of individuals with a chronic illness and efforts to seek positive long-term consequences such as greater empathy and a better understanding of individuals with disabilities. Family dynamics are an intriguing and often complex set of relationships and even more so when a child in a family is born with or develops a chronic physical illness. Families experiencing childhood chronic illness must adapt to caregiving burdens, stress, and anxiety demands. Clinicians working with the families of children with chronic illnesses need to be aware that siblings are at some risk for negative psychological effects. Information sessions and support groups have been shown to enhance children’s psychological state, their knowledge of disabilities, and their understanding of the family situation (Wamboldt & Wamboldt, 2000). In a recent meta-analysis, Kibby et al. (1998) found psychological interventions for disease management and

emotional/behavioral problems to be effective for children and adolescents with a chronic illness. These programs could be expanded to the siblings and families of children with a chronic illness. The results from this meta-analysis suggest that one focus for interventions should be internalizing behaviors such as anxiety and depression. Future research should explore the effectiveness of these interventions

to assist the brothers and sisters of children with a chronic illness.

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