Issues in Comprehensive Pediatric Nursing, 33:39–55, 2010

Copyright © Informa UK Ltd.

ISSN: 0146-0862 print / 1521-043X online
DOI: 10.3109/01460860903486515

1521-043X
0146-0862
UCPN
Issues in Comprehensive Pediatric Nursing
Nursing, Vol. 33, No. 1, Dec 2009: pp. 0–0

DEVELOPMENTAL DISABILITIES: EFFECTS ON WELL

SIBLINGS

Phoebe Dauz Williams, PhD, RN, FAAN

Development
P.D. WilliamsDisability
et al. Effects on Siblings

Ubolrat Piamjariyakul, PhD, RN

University of Kansas School of Nursing, Kansas City, Kansas, USA

J. Carolyn Graff, PhD, RN

College of Nursing; and Boling Center for Developmental Disabilities,
University of Tennessee Health Science Center, Memphis, Tennessee, USA

Anne Stanton, MSN, RN

University of Kansas Medical Center, Kansas City, Kansas, USA

Received 14 April 2009; accepted 4 July 2009.

The study was funded in 1998–2002 through a grant (R01 NR947110) awarded to the PI (Phoebe
D. Williams, PhD) by the National Institutes of Health (NIH), National Institute of Nursing Research
(NINR), Bethesda, MD 20892. Invaluable assistance was provided to the RCT by J. Carolyn Graff,
PhD, RN; Sandra Hanson, MEd, RN; Anne Stanton, MSN, RN; Carol Hafeman, MA, RN; Adrienne
Liebergen, MN, ARNP; Karla Lueunberg, MSN, PNP; Robyn Karlin Setter, MSN, ARNP; E.
Lavonne Ridder, MA, MN, CPON, ARNP; Heather Curry, MSN, CNS-PON; Martha Barnard, PhD,
RN; Susan Sanders, MEd; Stephanie Schwartz, MPH, CNS, CDE, RN; Anne C. Guthrie, MSEd;
Catherine DeVoge, MSN, RN; and Ubolrat Piamjariyakul, PhD, RN. Consultation for the qualitative
phase of the study was ably provided by Ann K. Cobb, PhD, RN and Elaine W. Domian, PhD, RN;
data transcriptions and coding were done by Cherie Tuason, BSN, Emily Dauz, BA (Psychology),
Florence Puno, BSN, and Jo Ellen Branstetter, MN, MEd. The Missouri Association for Social Wel-
fare (MASW) acted as subcontractor for the maintenance of study databases. Tom Gould, MPA,
Western Regional Coordinator, MASW, assisted in the management of this subcontract. The medical
advisory board was composed of D. Daily, MD; B. Lieberman, MD; R. Trueworthy, MD; M.
Heatherington, MD; C. Howard, MD; M. McCubbin, MD; and A. Gettel Modrcin, MD. This project
was fortunate to have the cooperation of persons from many disciplines and specialties, crossing
organizational boundaries, and involving institutions in several states.
Address correspondence to Phoebe Dauz Williams, PhD, RN, FAAN, University of Kansas,
School of Nursing, 3901 Rainbow Blvd, MS 4043, Kansas City, KS 66160, USA. E-mail: pwilliam@
kumc.edu

39
40 P.D. Williams et al.

Anne C. Guthrie, MSEd

Sibling Support Project of The Arc of the United States, Seattle,
Washington, USA

Carol Hafeman, MA, RN

Children’s Mercy Hospital, Kansas City, Missouri, USA

Arthur R. Williams, PhD, MPA, MA

Children’s Mercy Hospital & Clinics, Kansas City, Missouri, USA

Background: Forty studies performed between 1970 and 1995 indicated

that 60% of parents with children with developmental disabilities
reported manifestations of increased risk or negative effects on the well
siblings. Method: A secondary data analysis was performed using
qualitative data gathered during the baseline of a randomized controlled
clinical trial of an intervention for siblings/families of children with
long-term conditions, including developmental disabilities. Content
analysis was used to identify themes from responses of 151 parents to an
open-ended question on their perceptions of the effects on well siblings of
living at home with a brother/sister with developmental disabilities.
Results: Of 363 themes identified, 61.1% reflected negative manifesta-
tions of increased risk in well siblings; 1.7% indicated no risk; and 37.2%
reflected positive outcomes, suggesting the continued need for potential
interventions. Conclusion: Contemporary family life in these families, as
portrayed by parents’ descriptions, reflects need in child health care for
more intervention research on this vulnerable population.

Keywords: Developmental disabilities, Well siblings, Family dynamics

A developmental disability is defined as any mental and/ or physical

disability that is manifested before age 22 years; that is likely to continue
indefinitely; and that substantially limits one or more life activities, such
as walking, seeing, speaking, breathing, or learning. van Dyck et al.
(2004) have reported on the characteristics and continued high prevalence
of children with special health care needs, such as those with develop-
mental disabilities (DD). Marlow and colleagues (2005) also noted the
high incidence of neurologic and developmental disabilities at 6 years of
age in children who were born prematurely. Thus, there is a continuing
relevance and need to study children with DD and their families.
Development Disability Effects on Siblings 41

Developmental disabilities create common problems for families; the

burden of care stretches over a long period of time, producing strain on
physical, financial, and emotional resources (Batshaw, 2002; Branstetter,
Domian, Graff, Piamjariyakul & Williams, 2008; Neely-Barnes &
Marcenko, 2004; Stein & Jessop, 1982; 2003; Williams et al., 2003; 2009).
Conceptually, family roles are reciprocal; any significant change in one role
(parent, brother, sister) alters related roles. When a change in role patterns
occurs (such as with a developmental disability) in one member, the family
must redefine role patterns (Duvall, 1977; Gilliss, Highley, Roberts, &
Martinsson, 1989; Williams, Lorenzo & Borja, 1993; Williams et al. 2003;
2009). The caregiving demands of the child with DD has the potential to
cause family and individual disruptions, including distress and other mani-
festations of increased negative outcomes among well siblings (Williams,
1997; Williams et al., 1997; 1999; 2002; 2003; 2004; 2005; 2006; 2009).

LITERATURE REVIEW

Studies have been performed on the effects of pediatric chronic illness

and developmental disabilities on families and siblings (Sharpe &
Rossiter, 2002). Williams’ review (1997) covered more than 40 studies
published between 1970 and 1995 on the effects on well siblings of
pediatric chronic conditions, including developmental disabilities. She
found that approximately 60% of the studies reported manifestations of
increased risk for negative outcomes in siblings, 30% reported no
increased risk, and 10% reported both negative and positive effects. It has
been noted by other authors that studies conducted after 1995 also report
consistent findings (Fisman et al., 1996; Fisman, Wolf, Ellison &
Freeman, 2000; Sharpe & Rossiter, 2002; Swift et al., 2003). In some
studies, sibling behavior problems were in the clinical range (2 SDs above
the mean) on a standardized instrument (Laufersweiler-Plass et al., 2003;
Lobato, Barbour, Hall & Miller, 1987). For these siblings and families,
crisis intervention strategies and health services have been described
(Dattilio & Freeman, 2000; Fanos, Fahner, Jelveh, King & Taeda, 2005).
It is noted also that a recent study by Williams et al. (2009) found that
parents’ descriptions reflected mainly negative effects (74.7%) in siblings
of children with cystic fibrosis and cancer, with 24.2% reflecting some
positive effects and only 1.1% of parents reporting “no effects.” That
study used a similar data collection method as the present report and
gathered data at approximately the same time period as the baseline of
this study (Williams et al., 2003).
The above literature review formed the rationale for the first intervention
study preformed on a vulnerable population comprised of siblings and
families of children with DD and other long-term conditions (Williams
42 P.D. Williams et al.

et al., 2003). Another evidence-based intervention study of siblings of

children with DD was reported later by Lobato & Kao (2005).
The primary purposes of this study are to present: a) parental descrip-
tions of the positive and negative effects on siblings of the experience of
living at home with a brother or sister who has a developmental disability,
and b) the perceived reasons for these identified effects.

METHOD

Design

This is a descriptive study that uses preexisting data. These data were the
qualitative data collected at baseline during a longitudinal, randomized
clinical trial (RCT) called Intervention for Siblings: Experience Enhance-
ment or ISEE (Williams et al., 2003). The ISEE study was conducted
between 1998 and 2002 to implement and evaluate a cognitive-psychosocial-
respite intervention provided to 252 parents and a well sibling of a child
with chronic illness or disability. The affected children’s diagnoses in that
study included DD. Along with quantitative data collected at baseline
prior to the implementation of the intervention, parents answered an
open-ended question related to their child’s diagnosis: “Developmental
disability in one of my children has had the following effects on the
brother/sister (sibling) without DD.” The parent-respondents’ written
responses to this question were analyzed using content analysis
(Krippendorf, 2004) for this report. Informed consents and IRB approvals
were obtained for the study (Williams et al., 2003).

Sample

Baseline responses of 151 parents of well siblings of children with

developmental disabilities were analyzed. The developmental disabilities
represented in this sample included spina bifida; cerebral palsy; seizure
disorder; traumatic brain injury; Down syndrome; Fragile X and other
genetic syndromes; and Asperger syndrome and autism. The families of
well siblings of children with developmental disabilities that are included
in this paper reflect the characteristics of the overall sample in the ISEE
study mentioned above, and the demographics of the catchment area of
the provider institutions located in two adjacent states in the Midwestern
United States.
The primary parent respondents in the study were the mothers (90%).
The respondents’ mean age was 40.6 years (SD 5.4). According to the
parents responding, most children in the study lived in two-parent homes
(79.4%); were Caucasian (91.6%); and the families had annual incomes
Development Disability Effects on Siblings 43

of more than $30,000 (70%). Most of the parent respondents (78.6%) had
either some education beyond high school, or were college graduates. The
mean age of the children with DDs was 9.6 years (SD 4.2), and 43% were
males. The mean age of the well siblings in the study was 10.9 years (SD
2.5); 46% were males.

Qualitative Data Analysis

Codebook
Content analysis (Krippendorf, 2004) was used to analyze the data in this
study. This method involves a process of organizing and integrating
narrative, qualitative information according to emerging themes and
concepts (Krippendorf, 2004; Polit & Beck, 2008). In developing coding
instructions, Krippendorf (2004, p. 351) states that the researcher who
relies on existing conceptualizations has “a [good] chance to contribute
to knowledge.” Thus, based on Williams’ review (1997) findings, three
general categories were used in the content analysis, namely: a) negative
effects, b) no effects, and c) positive effects. Also identified in the
coding process were words or subthemes that emerged under the three
general categories of data. Thus, each of the three general categories
included subthemes of specific feelings, attitudes, and behaviors that
emerged from the data gathered. For example, content from parents’
statements that conveyed negative manifestations in siblings included
words or phrases such as “upset,” “resentful,” “angry,” “negative behav-
iors,” “worried,” “tense,” “fearful,” “jealous,” “envious,” “sad,”
“lonely,” “depressed,” “embarrassed,” “low self-esteem,” and “school
problems.” Each of these words or subthemes was defined in the code-
book for coding purposes, with examples of parental statements convey-
ing these themes. Table 1 shows the coding categories and examples of
parental statements. Words or phrases that conveyed similar meanings
were clustered into a subcategory, e.g., upset/ anger/ resentment, as
illustrated in part A of Table 1.
Content from parental statements that conveyed positive outcomes
included words or phrases such as “family closeness,” “increased
sensitivity to ill child,” “increased empathy,” “personal growth,” “matura-
tion,” and “increased independence.” These coding categories are shown
in part C of Table 1.
In addition, some parents’ descriptions included reasons or explana-
tions for the observed negative manifestations in siblings. In reading the
parents’ written explanations, themes that emerged included “parent
attention to ill child,” “sibling feels isolated from parents,” “diagnosis-
related problems,” and “other.” Likewise, parental descriptions of the
reasons for some positive outcomes observed also were coded into themes
44 P.D. Williams et al.

Table 1. Developmental disabilities: parent’s perceptions

of the effects on siblings
Categories/Subcategories Responses a

F %b

A. Negative Manifestations 222 61.1

Upset/anger/resentment 71
Negative behaviors 30
Lonely/sad/depressed 27
Jealous/envious 27
Embarrassment 19
Worry/fear/anxiety 10
School problems (academic, social) 5
Low self-esteem 9
Guilty 3
Overprotects ill child 8
Sibling competition 10
Unsympathetic 3
B. No Effects 6 1.7
C. Positive Effects 135 37.2
Family closeness 29
Greater sensitivity to ill child/caregiving 27
Personal growth/maturation 79
D. TOTAL Responses 363
a
Respondents gave more than one answer to the study question.
b
Note: In Williams’ (1997) review, 60% of the studies reported manifes-
tations of increased risk for negative outcomes in well siblings; 30%, “no
risk”; 10%, both negative and positive effects.

in the codebook, such as “sibling empathy” and “other personal/social

characteristics.”
More than one response was given by all of the 151 parents, indicating
more than one perceived effect of the developmental disability on the
sibling. All words or phrases mentioned that fit the subthemes within each
of the three general categories were tallied; therefore, the total frequencies
of tallied responses are more than the sample size. As mentioned, the data
used in coding were the written responses of parents collected during
baseline in the RCT.
Data Coders
Two trained coders (one with a graduate degree in pediatric nursing and
the other in special education) independently coded the parents’ responses
using the codebook; overall interrater agreement rate was 98%. A doctor-
ally prepared researcher with backgrounds in child psychology and
Development Disability Effects on Siblings 45

pediatric nursing assisted in the development of the coding scheme and

definitions, and in verifying accuracy of the coding themes into catego-
ries. Another researcher verified the themes that were “collapsed” into
categories. The credibility of the findings was strengthened by advanced
practice nurses [JCG, AG, AS, CH] who validated the themes, based on
extensive knowledge of the literature as well as their more than 40 years
combined experiences in working with families and children with
developmental disabilities. During their training, the coders read the
Williams (1997) review as a general background of the task in which they
were to engage, as the review provided many examples of content under
the three general categories and subcategories.

RESULTS

Table 1 shows that, of a total of 363 tallied responses of parents’ words

and descriptions, 61.1% reflected negative manifestations in siblings. In
comparison, 1.7% reflected no effects, and 37.2% reflected positive out-
comes. To address the study purposes, the results of the data analysis are
presented in four parts: (a) negative manifestations in siblings, (b) reasons
for the negative manifestations, (c) positive outcomes, and (d) reasons for
the positive outcomes.
Table 1 sections A, B, and C show the three main theme categories
(Negative effects, No effects, and Positive effects). Beneath each
category are the subthemes that emerged from the parents’ written
descriptions.

Negative Manifestations in Siblings

Approximately two-thirds of the parents’ descriptions reflected increased

negative outcomes in siblings (Table 1A). Ranked according to the
highest frequencies of mention were: (a) upset/ anger/ resentment; (b)
negative behaviors; (c) lonely/ sad/ depressed; (d) jealousy/ envy; (e)
embarrassment; and (f) worry/ fear/ anxiety. Sample parental statements
in each category are given below.
Upset/Anger/Resentment/Frustration
Examples include such statements as:

• “(Sibling) can be very hostile at times; he expresses anger.”

• “(Siblings) want to do things (DD child) can’t do, so they get mad at her.”
• “He gets mad when (DD child) has an accident and doesn’t clean up
right away.”
• “Gets mad because she has to help a lot.”
46 P.D. Williams et al.

• “Gets angry that she has to wait for (DD child), or that schedules
change when hospitalized.”
• “Gets angry about (parents’) not having enough individual time with
him because of (ill child’s) medical and learning needs.”
• “He is starting to show hate for her (DD child).”
• “Lack of patience/ quick to anger/ low tolerance for older disabled
child’s lack of social skills.”
• “He gets aggravated that his brother doesn’t understand a lot of
things.”
• “Angry that the majority of our lives revolves around (child with
DD).”
• “Angry at kids for making fun of her sister (child with DD).”
• “Frustrated when her belongings are destroyed by her sister.”
• “Gets frustrated at (child with DD) because he throws fits or screams
out.”
• “Frustrated with understanding speech.”
• “Increased frustration in growth and development needs—i.e.,
friends to play with, places to go, etc.”

Negative Behaviors
Examples of this category included:

• “He makes unkind remarks to (child with DD), e.g., calls him ‘diaper
boy.’”
• “Always needs a lot of attention.”
• “She goes into her own world; secludes herself in her room.”
• “Won’t do chores because (child with DD) is unable to (do chores).”
• “Regression: does not want to dress self, brush teeth, shower, etc.,
without parent involvement.”
• “Seeks attention inappropriately (whining, crying) due to (DD child)
getting much attention.”
• “At times gets withdrawn.” “Speaks harshly to (child with DD);
sometimes rough with her.”

Lonely/ Sad/Depressed
Examples of this negative behavior included:

• “Sad that (disabled child) can’t play or do things that other children
can do—run, ride bikes, play ball, etc.”
• “Cries easily.”
• “Feels cheated—he wants a brother/ sister to play with on his own
level (just like his friends).”
Development Disability Effects on Siblings 47

Embarrassment
Statements related to this included:

• “The ‘let-down’ for my other children (siblings) is very hard (after

disabled child has an outburst in public).”
• “Embarrassment; does not like to do family outings; does not take
pride in (child with DD’s) accomplishments.”
• “Embarrassed among peers.”
• “She has been teased at school because of her brother.”
• “Embarrassed when kids question why (his brother) can’t talk well,
etc.”

Jealousy/ Envy
These statements included:

• “Jealous of the attention his brother gets from (parents)—with care;

homework, etc.”
• “Feels I play favorites; becomes jealous at times.”
• “Feels he has more responsibility than his brother with DD.”
• “Jealous—our time and attention is mostly focused on (child with
DD), and everyone else always asks about him first.”
• “Profound jealousy over the attention—so, anything (child with DD)
gets, (sibling) also wants in equal amounts.”
• “(Sibling) at times feels like we care for (child with DD) than we do
for him.”
• “(Sibling) sees that (child with DD) gets away with ‘doing wrong’
that (sibling) is not allowed to do.”

Explanations for the Negative Manifestations

Several themes on this topic, as mentioned, were collapsed to form major

themes that emerged regarding parents’ perceptions of the reasons or
explanations for the negative manifestations. These were: (a) disability-
related, (b) sibling feels physically or emotionally isolated from parents
due to attention to ill child, and (c) “other.”
Disability-Related
Statements that reflect this explanation included:

• “He doesn’t understand what causes DD, and why (DD child) can’t
get better or ‘outgrow’ it.”
• “(Siblings) have to help wait on her.”
48 P.D. Williams et al.

• “He feels he has to take care of (DD child) at school.”

• “Can’t figure out why his brother has this disability.”
• “There is less interaction and communication between the two
children.”
• “Does not realize the full scope of her sister’s disability.”
• “Does not understand why (child with DD) acts the way he does.”

Physical and Emotional Isolation from Parents due to Attention

to DD Child
Statements reflecting this concept included:

• “He has expressed missing me (mother) while I was at the hospital

with his sister.”
• “Sometimes feeling that more attention is given to (the child with DD).”
• “Less attention: (siblings) feel they are treated differently from the
(child with DD).”
• “He seems to feel he doesn’t get enough attention.”
• “Need for more ‘alone time’ with parents.”
• “Feelings of neglect—because of time (parent) spends with DD
child.”
• “His sister takes one-on-one 24 hours; (sibling) gets very little time
from us.”
• “At times probably feels like being invisible.”
• “Sometimes his sister (with DD) gets noticed more due to her
(difficult) behavior.”
• “Great need to have as much attention as the child with disability.”

Other
Statements in this category included:

• “(Sibling) has had to accept more responsibility.”

• “Feels he has taken the older child role, in that he is more responsible
and does more around the house.”
• “She has to help a lot.”
• “He has been forced to be a big helper.”
• “Huge responsibility of helping care for disabled brother.”
• “More responsibility at an earlier age.”
• “Increased sibling responsibility and role reversal—the well sibling
(who is younger) has had to be the more responsible child in the family.”
• “(Responsibilities for child with DD) sometimes interferes with his
own activities that he would like to do.”
• “Inability to attend social activities outside/ inside home.”
Development Disability Effects on Siblings 49

Positive Outcomes

Table 1C shows that approximately one-third of the descriptions of

parents reflected positive outcomes in siblings and families. These were
grouped into: (a) increased family closeness; (b) increased sibling sensi-
tivity to the ill child and caregiving; and, (c) increased sibling personal
growth and maturation.
Family Closeness
Included in this category were statements such as:

• “(The sibling) and (the child with DD) have fun together.” “They get
along well with each other.”
• “(Sibling) is very protective of her brother; puts him before even her
best friend.”
• “He won’t let anyone make “fun” of his sister who wears diapers and
has braces.”
• “(Sibling’s) involvement helped motivate (the child with DD)”.
• “Our son feels very protective of his brother (with DD).”
• “(Sibling) rejoices greatly whenever his brother (with DD) accom-
plishes something new.”
• “He is very protective of his brother (with DD) and will stand up for
him with other kids.”

Increased Sensitivity/Caregiving
Statements related to this included:

• “(Sibling) is concerned about his sister.”

• “(Sibling) is very willing to lend a helping hand; almost always when
child with DD needs anything.”
• “Our daughter has assumed the older sibling role.”
• “She is more helpful when it comes to taking care of her sister (with DD).”
• “(Sibling) will compensate for what he (child with DD) is not able to do.”
• “They seldom fight/ squabble like typical sibs do. He has (almost
like) a distance from her, yet he tries to be helpful and kind.”
• “Acts as ‘interpreter’ because of her sister’s limited communication
skills.”
• “Sensitive when others make remarks or act unkindly to his brother
(with DD).”

Personal Growth/Maturation
Statements reflecting this concept included:
50 P.D. Williams et al.

• “My other children (siblings) are more sensitive to other people with
disabilities and more comfortable with them.”
• “Knows how to help: opens doors, holds something as they walk
with canes.”
• “Talks to kids with disabilities and asks the child what (disability) he
has, instead of just looking at them without talking to them.”
• “My daughter plays with her dolls and tries to catheterize them, as
we do with her brother.”
• “Helped him become more tolerant and accepting of people, esp.
others with disabilities.”
• “She has had to grow up a little faster than if her older sister (with
DD) was normal.”
• “He is a very mature child and does well with the added responsibility.”
• “It has caused her to mature quicker emotionally.”
• “Increased usage of and development of techniques to handle anger
and frustration.”
• “She learned at a very early age to say (mimic) her older sister’s
(with DD) ‘funny words’ that would make her laugh, and possibly
avoid a tantrum.”

Reasons for the Positive Outcomes

Parents described the reasons for the positive outcomes. These usually
centered on the siblings’ personal, social, and cognitive attributes, as
shown in the examples below.

• “(Sibling) is very loving, very caring.”

• “Very caring—can get her sister to laugh; re-directs her when she’s
getting mad.”
• “Looks for strengths in others—not weaknesses.”
• “Willingness to help.”
• “Likes to please everyone.”
• “Learned skills to cope—communication.” “Quite a strong value
system.”
• “Self reliant—able to take care of herself.”
• “Open and tolerant—she often asks questions and answers about
many ‘life issues.’”
• “Helped develop his leadership, cooperation, and helpfulness skills
in his social interactions.”
• “Explanation time—teaching friends, teachers, caregivers about (the
disabled child).”
• “He is very smart, and is currently testing for a ‘gifted program’ in
school.”
Development Disability Effects on Siblings 51

DISCUSSION

Parents’ descriptions reflected negative effects (61.1%) in siblings of

children with developmental disabilities; positive effects were reflected in
37.2% of their descriptions, while only 1.7% of parents reported “no
effects.” Similar findings were reported by Williams et al. (2009) during
the same time period and using a similar method as the present study
related to the effects on siblings of having a sibling with cancer or cystic
fibrosis. In that study, negative effects were reported in 74.1% of
comments, positive effects in 24.2%, and no effects in1.1%. Findings
from both the Williams et al. study and the present study support
Williams’ (1997) earlier review of the literature. Given the prevalence of
disabilities in children, professionals must focus attention not only on
children with developmental disabilities, but also on their siblings. In this
study, parental perceptions of the impact on siblings of living at home
with brothers or sisters with developmental disabilities are portrayals of
the realities of life within these families.
As in the present study, Williams (1997) also reported the negative
manifestations of increased risk in siblings, such as feelings of loneli-
ness and isolation, anxiety, depression, vulnerability, anger, worry
about the ill child, school problems, poor peer relations, withdrawal or
shyness, somatic complaints, low self-esteem, and behavior problems
(internalizing and externalizing). No intervention studies have been
found in the literature, although, by 1997, descriptive studies reported
that family and parent variables such as effective parent-sibling commu-
nication about illness, family cohesion, absence of parental depression,
and higher levels of social support and family resources were related to
sibling risk or resilience. Although the literature indicated that methods
to examine the interrelationships among family and individual variables
also have been developed (Williams & DeLurgio, 1994; Williams &
Williams, 1997), the dearth of both multivariate and interventional
studies are noteworthy.
In Williams’ review (1997) fewer studies (10%) mentioned positive
effects such as increased family closeness, increased sensitivity or empa-
thy, and personal maturation in siblings, as compared to the present report
(37.2%). Likewise, in the present study, parents also described conditions
that helped foster positive outcomes in siblings including family close-
ness, siblings’ increased sensitivity to caregiving, their personal growth,
and parental awareness of siblings’ strength. Conversely, in the Williams
et al. (1997) review, 30% of the studies reported no effects on siblings, as
compared to 1.7% in the current report. The study by Williams et al.
(2009) also reported that only 1.1% of parents reported “No effects” on
siblings of children with cancer and cystic fibrosis. These differences may
52 P.D. Williams et al.

be due to the differences in methodology used in the present study and

those of the studies included in the 1997 review article. However, it may
be that, due to increased societal awareness, parents of children with
developmental disabilities may have become more “sensitized” to sibling
needs.

Clinical and Research Implications

Clinically, the findings of the content analysis suggest the need for
resources that help to limit these siblings’ negative risks and build on their
positive attributes. Family members and professionals need to work
together to maximize the health of children with disabilities, prevent
secondary disabilities, and reduce health disparities. Family-centered,
continuous, comprehensive, coordinated, compassionate, and culturally
competent care should be provided to children with developmental
disabilities. This is the gold standard toward which professionals should
strive (American Academy of Pediatrics, American Academy of Family
Physicians, and American College of Physicians-American Society of
Internal Medicine, 2002).
Professionals striving to provide family-centered care must attend to
sibling experiences and well-being. This includes having an awareness
of siblings’ increased risk and negative behaviors and possible contribu-
tors to this risk. Professionals should explore with parents, and siblings
when possible, the positive and negative effects of this sibling experi-
ence. Professionals must possess the skills to communicate effectively
and sensitively with parents and siblings, and the knowledge of avail-
able resources for parents and siblings. The present findings are based
on baseline data collected in the RCT study, before interventions that
focused on siblings and parents were implemented and outcomes
assessed over a 12-month period (Williams et al., 2003). Results of the
RCT showed significant, long-term benefits to siblings and parents.
Moreover, results showed that sibling outcomes and family variables
are significantly interrelated (Williams et al., 2002, 2004, 2005), and
consistent with the literature (e.g., Branstetter et al., 2008; Graff, 2001;
Ireys & Silver, 1996; Williams et al., 1997; 1999; 2009). Mediated by
improved family functioning, these findings suggest a potential positive
impact of the intervention on the quality of life of the child with
disability—a topic for further study. Family life, portrayed by the
parents’ descriptions validated the need for the interventions and the
measurement of outcomes.
Declaration of interest: The authors report no conflict of interest. The
authors alone are responsible for the content and writing of the paper.
Development Disability Effects on Siblings 53

REFERENCES

American Academy of Pediatrics, American Academy of Family Physicians, and American

College of Physicians-American Society of Internal Medicine. (2002). A consensus
statement on health care transitions for young adults with special health care needs.
Pediatrics 110, 1304–1306.
Batshaw, M.L. (Ed.) (2002). Children with disabilities (5th ed.). Brookes, Baltimore.
Branstetter, J.E., Domian, E.W., Graff, C.J., Piamjariyakul, U., & Williams, P.D. (2008).
Communication in families of children with chronic illness or disability. Issues in
Comprehensive Pediatric Nursing, 31(4), 171–184 .
Dattilio, F.M., & Freeman, A., Eds. (2000). Cognitive-behavioral strategies in crisis
intervention. 2nd ed., New York:Guilford.
Duvall, E. (1977). Family development. 5th ed. Philadelphia: Lippincott.
Fanos, J., Fahner, K., Jelveh, M., King, R., & Taeda, D. (2005). The Sibling Center: a pilot
program for siblings of children and adolescents with a serious medical condition.
Journal of Pediatrics, 143, 831–835.
Fisman, S., Wolf, L., Ellison, D., & Freeman, T. (2000). A longitudinal study of siblings
of children with chronic disabilities. Canadian Journal Psychiatry, 45, 369–375.
Fisman, S., Wolf, L., Ellison, D., Gillis, B., Freeman, T., & Szatmari, P. (1996). Risk and
protective factors affecting the adjustment of siblings of children with chronic disabilities.
J. American Academy of Child & Adolescent Psychiatry 35, 1532–1541.
Gilliss, C., Highley, B., Roberts, B., & Martinson, I. (1989). Toward a science in family
nursing. Menlo Park: Addison-Wesley.
Graff, J.C. (2001). An evaluation of a modified intervention for siblings of children
with chronic illness/disability. Unpublished dissertation, University of Kansas,
Lawrence, KS.
Ireys, H., & Silver, E. (1996). Perception of the impact of a child’s chronic illness: does it
predict maternal mental health? Developmental & Behavioral Pediatrics 7, 77–83.
Krippendorf, K. (2004). Content analysis: An introduction to its methodology. 2nd edition.
Sage, Beverly Hills.
Laufersweiler-Plass, C., Rudnik-Schoneborn, S., Zerres, K., Backes, M., Lehmkuhl, G., &
von Gontard, A. (2003). Behavioral problems in children and adolescents with spinal
muscular dystrophy and their siblings. Developmental Medicine and Child Neurology,
45, 44–49.
Lobato, D., Barbour, L., Hall, L., & Miller, C. (1987). Psychosocial characteristics of
preschool siblings of handicapped and nonhandicapped children. Journal of Abnormal
Child Psychology, 15, 329–338.
Lobato, D. J., & Kao, B. T. (2005). Brief report: family-based group intervention for
young siblings of children with chronic illness and developmental disability. J Pediatr
Psychol, 30(8), 678–682.
Marlow, N., Wolke, D., Bracewell, M., & Samara, M. (2005). Neurologic and develop-
mental disability at six years after extremely preterm birth. New England Journal of
Medicine 352, 9–19.
Neely-Barnes, S., & Marcenko, M. (2004). Predicting impact of childhood disability on
families: Results from the 1995 National Health Interview Survey Disability Supple-
ment. Mental Retardation, 42(4), 284–293.
54 P.D. Williams et al.

Polit, D., & Beck, C. (2008). Nursing research: Generating and assessing evidence for
nursing practice (8th ed.). Lippincott, Philadelphia.
Sharpe, D., & Rossiter, L. (2002). Siblings of children with a chronic illness: a meta-analysis.
Journal of Pediatric Psychology 27, 699–710.
Stein, R.E.K., & Jessop, D.J. (1982). A noncategorical approach to chronic childhood
illness. Public Health Reports 97, 354–362.
Stein, R.E.K., & Jessop, D.J. (2003). The Impact on Family Scale revisited: further
psychometric data. Journal of Developmental & Behavioral Pediatrics, 24, 9–16.
Swift, E. E., Taylor, H. G., Kaugars, A. S., Drotar, D., Yeates, K. O., Wade, S. L. et al.
(2003). Sibling relationships and behavior after pediatric traumatic brain injury. J Dev
Behav Pediatr, 24(1), 24–31.
van Dyck, P.C., Kogan, M.D., McPherson, M.G., Weissman, G.R., & Newacheck, P.W.
(2004). Prevalence and characteristic of children with special health care needs.
(reprinted) Archives of Child Health, Pediatrics & Adolescent Medicine 158, 884–890.
Williams, A.R., & DeLurgio, S.A. (1994). Path analysis: Reflections on causal modeling.
In K. McCormick, S., Moore, & R., Siegel (Eds), Methodology perspectives: Clinical
practice guideline development. AHCPR Pub. No. 95–009, MD: AHCPR, Rockville,
pp. 77–84.
Williams, A., Piamjariyakul, U., Williams, P., Bruggeman, S., & Cabanela, R. (2006).
Validity of the new Impact on Family [IOF] Scale. J. Pediatrics, 149, 257–261.
Williams, P.D. (1997). Siblings and pediatric chronic illness: review of the literature.
International Journal of Nursing Studies 34, 312–323.
Williams, P.D., Lorenzo, F., & Borja, M. (1993). Pediatric chronic illness: effects on
siblings and mothers. Maternal-Child Nursing Journal, 21,111–121.
Williams, P.D., Hanson, S., Karlin, R., Ridder, L., Liebergen, A., Olson, J. et al. (1997).
Outcomes of a nursing intervention for siblings of chronically ill children: Pilot study.
Journal of the Society of Pediatric Nurses 2, 127–137.
Williams, P.D., & Williams, A.R. (1997). Transition from hospital to home by mothers of
preterm infants: Path analysis results over three time periods. Families, Systems &
Health 15, 429–446.
Williams, P.D., & Williams, A.R. (2005). Nursing, social science methods used in. In: K.
Kempf-Leonard (Ed.), Encyclopedia of social measurement. Elsevier, United
Kingdom, pp. 893–904.
Williams, P.D., Williams, A.R., Graff, J.C., Hanson, S., Stanton, A., Hafeman, C. et al.
(2002). Interrelationships among variables affecting well siblings and mothers in
families of children with a chronic illness or disability. Journal of Behavioral Medicine
25, 411–424.
Williams, P.D., Williams, A.R., Graff, J.C., Hanson, S., Stanton, A., Hafeman, C. et al.
(2003). A community based intervention for siblings and parents of children with
chronic illness or disability: the ISEE study. Journal of Pediatrics 143, 386–393.
Williams, P.D., Williams, A.R., Hanson, S., Ridder, L., Liebergen, A., & Karlin, R.
(1999). Maternal mood, family cohesion, and perceptions of social support,
self-esteem, and mood among siblings of chronically ill children. Children’s Health
Care 28, 297–310.
Williams, P.D., Williams, A.R., & Huscka, T. (2004). Variables affecting well siblings
and mothers in families of children with a chronic illness or disability: Assessing a
Development Disability Effects on Siblings 55

family interaction model (paper). In the Proceedings of the 15th International Nursing
Research Congress, Sigma Theta Tau International; Dublin, Ireland, July.
Williams, P.D., Ridder, L, Setter, R.K., Liebergen, A., Curry, H.,Piamjariyakul, U.,&
Williams, A.R. (2009). Pediatric chronic illness (cancer, cystic fibrosis) effects on well
siblings: parents’ voices. Issues in Comprehensive Pediatric Nursing, 32(3), 94–113.
Copyright of Issues in Comprehensive Pediatric Nursing is the property of Taylor & Francis Ltd and its content
may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express
written permission. However, users may print, download, or email articles for individual use.