C Earnhart Honors Thesis Final

Running head: PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES
Evidence-Based Recommendations for Parents of Children with Developmental Disabilities

A Best Practice Approach
Chelsey L. Earnhart
The University of Arizona
College of Nursing
PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES
ABSTRACT
The purpose of this best practice thesis was to develop best practice recommendations for
decreasing stress for parents of children with developmental disabilities (DDs). Current research
has reported that caring for a child with a DD can be physically and mentally exhausting due to
the demands of caring for the child around the clock. Due to the often complex healthcare needs
of children with DDs, parents are placed at an increased risk for high levels of stress, which can
negatively affect overall health and well-being. Parents of children with DDs have the greatest
ability to influence the health and well-being of their child. Thus, increased parental stress that
leads to poor parental health and well-being, can negatively affect the health and well-being of
the child. Additionally, stress among parents of children with DDs is highly associated with child
behavior problems. By proposing evidence based recommendations for improved knowledge of
child behaviors/behavior problems associated with DDs parents would have the necessary
information about children with DDs to empower them to better anticipate child behavior
problems and better determine effective strategies for overcoming those problems, ultimately
leading to decreased parental stress and improved overall well-being for both the parent(s) and
child.
CHAPTER 1
Introduction
Statement of Purpose
The purpose of this thesis is to develop best practice recommendations for parents of
children with developmental disabilities (DDs). In this thesis, recommendations for best practice
will arise from evidence-based research articles that explore the impact of caring for children
with DDs on parental health. Information regarding the history of caring for children with DDs
and its significance to nursing will be detailed. After reviewing the historical background of
caring for children with DDs and its impact on healthcare, proposed best practice
recommendations will be outlined with the intended purpose of improving nursing care for
parents of children with DDs.
Historical Background of Caring for Children with disabilities and Their Families
According to the Centers for Disease Control and Prevention (CDC, 2013) developmental
disabilities are defined as a group of conditions involving impairment in physical, learning,
language, or behavioral areas. Examples of DDs include Attention-Deficit/Hyperactivity
Disorder, Autism Spectrum Disorders, Cerebral Palsy, Fetal Alcohol Spectrum Disorders, Fragile
X Syndrome, Hearing Loss, Kernicterus, Muscular Dystrophy, Tourette syndrome, and Vision
Impairment (CDC, 2013). Historically, caring for children with DDs included intervention
programs directed toward the individuals special needs independent of family and/or
environmental circumstance (Samuel, Rillotta, & Brown, 2012). However, in recent years the
direction of disability research and care has shifted from a focus on the individual, to a more
broadened approach involving the perspectives of the entire family (Gardiner & Iarocci, 2012).
This shift has resulted in changes to practice and policy in such a way that family is now the
primary environment of most children with DDs (Samuel et al., 2012). Family-related practice
and policy has evolved, thus promoting the concept that the family unit is a dynamic,
interconnected, and self-regulating system within which each individual is . . . influenced by a
set of shared, yet also unique, contextual factors (Gardiner & Iarocci, 2012, para 5). Therefore,
what impacts one member of the family, impacts the entire family system.
As the new concept of the family system spread across healthcare practices, three main
theories emerged as possible contributors to improved care for families of children with DDs
including: family-centered care, continuity of care, and empowerment. Family-centered care is
defined as a ground-breaking approach to planning, evaluating, and delivering health care to
children and adolescents based on mutually beneficial partnerships and collaborations between
families and health care professionals (Bell, Johnson, Desai, & McLeod, 2009). It is practiced
through mutual respect and information sharing such that families are fully knowledgeable about
their childs condition and are able to participate in the decision-making process, while health
care professionals gain personal knowledge of the childs unique characteristics; therefore,
providing the basis for a working alliance between health care professionals and family members
(Dunst & Trivette, 2009). Continuity of care involves the clients experience of consistency,
smoothness, and coordination in care . . . [related] to how patients/clients experience integration
of services and coordination among providers (Miller, Condin, Mckellin, Shaw, Klassen, &
Sheps, 2009). Finally, empowerment of families rearing children with DDs relates to improving
the condition in which individuals can achieve their goals through interactions with other people
involving information sharing and support services (Wakimizu, Fujioka, & Yoneyama, 2010).
These three main concepts are thought to improve care for the individual with special health care
needs as well as the entire family unit.
Significance of the Problem

According to the 2010 Census, 2.8 million (5.2 percent) school-aged children
(ages 5-17) reported having some type of disability (Brault, 2011). The prevalence of children
with disabilities is not unique to the United States, in fact it extends to other areas around the
world including the United Kingdom in which approximately 800,000 children are disabled,
accounting for 6% of all children (Department for Work and Pensions, 2013). Many studies have
been conducted over the years as a result of the increasing prevalence of children with
disabilities and have targeted their purpose to the improvement of health and quality of life
(National Council on Disability, 2012). According to the National Council on Disability (2012),
more studies are focusing on the effect of caring for a child with a disability on the health and
wellness of the parents and how that may affect overall treatment of the child.
Families of children with DDs tend to be less satisfied with their family quality of life
than families of typically developing children (Gardiner & Iarocci, 2012). Parents have the
biggest potential for influencing the personal health and wellness of their child; however, parents
of children with DDs face unique and difficult parenting tasks along with more intricate caring
duties that result in an increased risk for excessive levels of psychosocial stress, which in turn
can adversely affect the well-being of the child and the family as a whole (Resch, Mireles, Benz,
Grenwelge, Peterson, Zhang, 2010). The parenting responsibilities involved in caring for
children with DDs often require a significant amount of time to complete, are physically
demanding, and disrupt family and social relationships (Resch et al., 2010). Multiple factors
contributing to poor psychological well-being among parents include a lack of environmental
receptivity including environmental support, child-rearing information, and continuity of care
across multiple healthcare facilities (Gardiner & Iarocci, 2012).
Summary
The prevalence of children with DDs continues to rise, yet the current healthcare system
is falling short of providing the necessary information and tools needed for parents of children
with DDs to provide optimal care to their child. The system fails to adequately care for the entire
family as a whole, which decreases the receptiveness of healthcare providers to assess and care
for the increased parental stress and anxiety that is associated with caring for this population.
Providing optimal social/environmental support and improving continuity of care are necessary
in order to encourage a more family-centered approach to health care and improve the health and
well-being of parents of children with DDs.
CHAPTER 2
Review of Literature
Introduction
In order to explore the impact of caring for children with DDs on the parents health and
the availability of support for the parents, the author conducted a literature review aimed to
compile the common experiences and complications of parenting children with DDs as well as
the impact of family-centered caregiving. Search engines including EBSCO, CINAHL, PubMed,
and Google Scholar were employed for the collection of the following research articles. The
keyword children with developmental disabilities with subheadings parents health
experiences complications support empowerment continuity family-centered care
COPE and STAI were used to narrow the search results to relevant and related articles. The
15 compiled articles range from years 1994-2012 and include one review article, one systematic
review, two qualitative studies, one qualitative exploratory study, three quantitative descriptive
studies, two correlational studies, one exploratory phenomenologic study, one modified
grounded theory study, and three randomized controlled trials. The articles were organized by
four main categories: health complications of parents caring for children with DDs familycentered care, continuity of care, and empowerment and State-trait Anxiety Inventory and
COPE tools. Articles were then organized by latest to most recent year of publication. The
results from these articles will be applied to the proposed best practice recommendations for
Health Complications of Parents Caring for Children with DDs
A correlational study conducted by Eisenhower, Baker, and Blacher (2009) aimed to
determine the impact of delayed development and child behavior problems on maternal physical
health using a convenience sample of 218 families with a 3-year-old child (126 boys and 92
girls) either with delayed development (n=91) or typical development (n=127). Data was
collected through child assessments performed at home in which the childs cognitive ability and
behavior problems at age 3 were assessed and through the use of mother-completed
questionnaires (Eisenhower et al., 2009). Other measures assessed included: the mothers global
physical health at child ages 3, 4, and 5, the childs mental development, maternal depressive
symptoms (mood, somatic complaints, and cognition) at child ages 3, 4, and 5, and the childs
impact on the family compared to the impact of other children his/her age (Eisenhower et al.,
2009).
At completion of the study, child behavior problems, especially when associated with
developmental delay, were shown to predict adverse change in maternal health (Eisenhower et
al., 2009). The study also concluded that the mothers with both clinical signs of depression and
child behavior problems had the poorest physical health (Eisenhower et al., 2009). Overall
finding of the study suggested that the association between child behavior problems and maternal
physical health was moderated by maternal stress and mediated by maternal depressive
symptoms (Eisenhower et al., 2009). The authors utilization of various tools such as Baron and
Kenny (1986), Bayley Scales of Infant Development-II, Child Behavior Checklist, Center for
Epidemiologic Studies Depression Scale, Family Impact Questionnaire, and analysis of
covariance (ANCOVA) strengthen the quality of the work to the degree of similar studies.
Including both boys and girls and both delayed-developing and typically-developing children
provide a large and diverse sample, which strengthens generalizability of the findings. However,
most comparable studies assess maternal mental health rather than maternal physical health,
which limits the findings in their ability to compare to that of similar studies. Continuing the
study to more than two years would have strengthened the findings. Other limitations of the
study, which may have weakened the findings include: reliance on single-item-selfreport measures of health, possible maternal recall bias of symptoms of stress and depression,
lack of in-depth subjective and objective reports, and the possibility that biological pathways
may account for the association of child-related stress and maternal physical health (Eisenhower
et al., 2009).
Resch, Mireles, Benz, Grenwelge, Peterson, and Zhang (2010) conducted a qualitative
study with the purpose of examining the sources of various challenges identified by parents of
children with DDs. Specifically, the study considered two main research questions: (a) what are
the principal stressors and challenges for parents of children with disabilities, and (b) what
supports and services do parents identify as being needed to deal with the stress and challenges
of their responsibilities? (Resch et al., 2010, para 7). Data was collected through two hour,
audio recorded focus groups held in seven communities (both urban and rural areas) across a
southwestern state in the United States (Resch et al., 2010). Participants of the study included 40
parents (four male and 36 female) who were primary care providers to children with physical,
developmental, or intellectual disabilities (Resch et al., 2010). Purposive sampling procedures
gathered participants of multiple ethnicities, education levels, income levels, and community
sizes, with children of various primary disabilities such as Autism, Down syndrome, and
Muscular Dystrophy who participated in a wide range of classroom settings such as home
school, regular classroom, or a school for special needs students (Resch et al., 2010). A statewide
nonprofit parent organization that offers information, resources, mentoring, and support to
families of children with disabilities collaborated with the study to determine potential
participants and finalize protocol questions for the focus group sessions (Resch et al., 2010).
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Focus groups were conducted by three staff members who each served as a note taker and
the first two authors remained present at each focus group to confirm consistency of data
collection (Resch et al., 2010). Results revealed that parents wellbeing was influenced by four
major themes: lack of access to important information and support services, financial barriers to
acquiring support services (generally health care services), lack of inclusion in school and
community activities due to adverse reactions from the community, and lack of support for the
entire family (Resch et al., 2010). The strengths of this study included the use of QSR NVivo 7
and a cross-validation process to determine the strength of each theme and the use of a member
check technique to confirm that the themes accurately captured the experiences of the
participants, which strengthened the validity of the findings (Resch et al., 2010). However, the
studys sample was comprised of nearly all women, lacked participants from multiple states, and
lacked a representative sample of Asian Americans and Native Americans, which weakened the
generalizability of the findings. A further weakness of the study was the use of a single method
for collection of data as it could have limited the study to capturing only a piece of the actual
parent experience (Resch et al., 2010).
The purpose of a correlational study by Gallagher, Phillips, and Carrolls (2010) was to
determine if stress was associated with poor sleep quality in parents caring for children with DDs
(Gallagher et al., 2010). A convenience sample of 67 parents of children with DD and 42 parents
of typically developing children (TDC) responded to a structured questionnaire, which assessed
socio-demographics, socio-economic status, occupation of head of the household, sleep quality,
parental stress, childs problem behavior, and social support (Gallagher et al., 2010). The study
confirmed that parents caring for a child with DDs report poorer sleep quality, as complemented
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by the findings of related studies, and determined that the strongest predictor of poor sleep
quality was parental stress.
The findings of the study are strong in that they are consistent with related studies of
similar structure. Parental stress as the strongest predictor of poor sleep quality withstood
adjustment for [many] potential confounds, which strengthened its validity (Gallagher et al.,
2010, p. 10). The findings were strengthened by the utilization of a control group of typically
developing children to compare and contrast the findings of the DD group. Use of the Pittsburg
Sleep Quality Index (PSQI), Registrar Generals social class classification, Resources and Stress
Freidrich Short form, Strengths and Difficulties Questionnaire, Support Functions Scale, Chisquare, univariate ANOVA, and ANCOVA as tools of measurement strengthened the accuracy of
the measured findings. The study may be weakened in that poor sleep quality may be transitory
and that poor sleep may be causing the increased stress by reverse causation (Gallagher et al.,
2010). The sample included more women than men, which decreases the generalizability of the
findings to the appropriate population. Further research on this topic, which may strengthen the
findings would possibly include addressing the age of the parents and children, the body mass
index and health behaviors of the parents, and information on the non-participating parents
(Gallagher et al. 2010).
Hobson and Noyes (2011) conducted an exploratory phenomenologic study involving
face-to-face, recorded interviews of eight fathers providing a substantial amount of their childs
care with the purpose of describing the experiences of fathering, parenting, and caring for
children with complex care needs. The sample of fathers included: seven biological fathers, one
stepfather, four full time care givers, and four full time employed care givers. Seven fathers had
other children, six families had other children living at home, and two families had children who
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had left home (Hobson & Noyes, 2011). Further details of the sample characteristics are given in
the appendix. Major findings of the study included a shift from breadwinner to main care
provider, difficulty distinguishing their parenting and technical caring roles as technical caring
roles were usually of primary importance, anxieties providing intimate personal care for their
child, positive and rewarding aspects of providing care to their child, stress in providing care and
tendency to strive to overcome that stress in order to create a normal family life, limited support
from extended family due to childs complex health needs, and guilt at receiving additional
support (Hobson & Noyes, 2011).
The recruitment method involving the childrens community nurses explaining the study
in an individualized way to each corresponding father strengthened the ability to gather fathers as
participants, which allowed for an appropriate and diverse sample size for this qualitative study,
which strengthened the findings. The sample was diverse in that it included a wide range of child
disabilities, health care needs, ages, and outside programs, an equal ratio of working and nonworking fathers, inclusion of working and non-working mothers, etc., which strengthened the
quality of the study and the generalizability of the findings. Inclusion of a more equal ratio of
biological fathers to step-fathers in a future study may strengthen the findings. The large underrepresentation of fathers in similar studies on children and complex disabilities limits
comparability of the results and the recruitment method used excludes fathers not in contact with
health services, which weakens the diversity of the sample (Hobson & Noyes, 2011). Further
exploration of why fathers experience guilt at receiving support and the effects of the childs age
and length of time the child requires care may strengthen the study.
A quantitative descriptive study conducted by Kobayashi, Inagaki, and Kaga (2012)
surveyed 460 anonymous institutions and consultation centers in Japan for children with DDs to
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determine the mental health state of parents providing care to children with DDs as viewed by
their professional care provider. Participants were recruited via a questionnaire that was sent to
the institutions in which professional workers described their facilitys staff adequacy . . . health
promotion services provided, the ages of their clients, the clients main disabilities and clinical
experiences regarding the clients parents such as signs of mental health distress [and the
measures taken] when encountering distressed parents (Kobayashi et al., 2012, para 6). Each
facility was classified by the clients main disabilities as follows: intellectual disability (ID),
pervasive developmental disorder (PDD), profound intellectual and multiple disabilities (PIMD),
physical disability group, and others.
At the end of the study, 90 percent of facilities experienced difficulties communicating
with the clients parents, especially with the mothers, which was found to be influenced by poor
mental health, low socioeconomic status, and heavy care giving burden (Kobayashi et al., 2012).
About 70 percent of parents showed signs of depression with highest in the PDD group and 50
percent of children of psychiatrically disturbed parents experienced maltreatment (Kobayashi et
al., 2012). Factors associated with parents poor mental health included: absence of support from
other family members, existence of a medical condition in the parent, non-use of social support
networks, severity of childs disability, and parent participation or non-participation in face-toface family support groups (Kobayashi et al., 2012). Major findings of the study showed a
crucial need to provide a better social support network for the parents of children with DDs and
emphasized the inadequacy of current psychiatric services in Japan for treating the complex
mental health needs of the parents and therefore the need for improvement (Kobayashi et al.,
2012).
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The findings of this study are consistent with the findings of related studies in that
parents, especially mothers, of children with DDs show more signs of psychological distress or
depressive symptoms than parents of typically developing children do, which strengthens the
findings of this study. However, this was the first study in which a nationwide scale on the
mental health and distress of parents of children with various DDs in Japan had been performed;
therefore, there is no nationwide study to compare their findings to and it is more difficult to
determine the strength and quality of the findings. Further limitations of the study, which may
weaken the findings include unconfirmed data and the need for further professional psychiatric
diagnosis of the parents mental health to confirm the overall problem (Kobayashi et al., 2012).
Having many service provider respondents that were well trained and experienced workers for
over 20 years strengthens the data collected given that the respondents were highly educated and
experienced in their clinical area. The response rate of 41.7 percent provides a wide range of
respondents, which further strengthens the findings. Although the sample size is large, the setting
of the study limits its generalizability in that the applicability of the findings may not be
appropriate in other settings such as in the United States.
Family-Centered Care, Continuity of Care, and Empowerment
The author chose to use the following study despite its older date of publication as it
contains rich data imperative to the proposal of evidence-based recommendations for parents of
children with DDs. A quantitative study conducted by King, King, Rosenbaum, and Goffin
(1999) examined the relationship between family-centered, professionally provided caregiving
and well-being of parents of children with DDs. The purpose of the study was to use structural
equation modeling (SEM) to determine the strength of this relationship in the context of other
factors that may affect well-being such as child behavior problems, coping strategies of parents,
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protective factors in the social environment, child factors related to disability, and family factors
(King et al., 1999, pp. 44-45). A process-outcome model containing factors affecting well-being
of parents including demographics, disability factors, professional caregiving, social-ecological
factors, psychosocial stressors, parents coping strategies, and parents satisfaction with care and
emotional well-being, was formed for the purpose of this study (King et al., 1999).
The model hypothesized that lower severity of the childs disability, more familycentered caregiving, and better family functioning and social support would be related to fewer
psychosocial life stressors, perceptions of caregiving as more family-centered, decreased life
stress, higher satisfaction with services, and better emotional well-being of the parents (King et
al., 1999). The model also hypothesized that the use of fewer coping strategies would be
associated with better socio-ecological factors and emotional well-being, higher satisfaction with
care would be related to better emotional well-being, and decreased emotional well-being results
in states of depression and/or distress (King et al., 1999). The use of SEM to measure a wide
range of various factors in mediating the relationship between emotional well-being and
perceptions of caregiving strengthens the study as it measures overall model fit while
incorporating error and simultaneously considering multiple pathways (King et al., 1999).
Participants of the study included 164 parents of children with cerebral palsy, spina bifida, or
hydrocephalus who completed a series of instruments measuring the various factors involved in
the formulated model (King et al., 1999). Most respondents were from two-parent families, lived
in urban areas, had beyond high school education, and had children ranging between 3 and 6
years of age with an average of 3.3 health problems, receiving services at least once a month
(King et al., 1999).
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Measurements used include WeeFIM, Measure of Process of Care questionnaire, General

Functioning scale of the Family Assessment Device, Social Support Questionnaire-6, Impact on
Family Scale, Survey Diagnostic Instrument, Coping Health Inventory for Parents, Client
Satisfaction Questionnaire, Global Severity Index from the Symptom Checlist-90-Revised, and
Centre for Epidemiological Studies Depression Scale, strengthened the findings of the study by
providing good test-retest reliability, concurrent validity, and internal consistency (King et al.,
1999). The study found that a more family-centered approach to caregiving was a main predictor
of parents well-being with child behavior problems and protective environmental factors as the
most important predictors of well-being (King et al., 1999). Conclusions of the study suggest that
caregiving services are most valuable when delivered in a family-centered manner that addresses
availability of social support, family functioning, and child behavior problems (King et al.,
1999). Although child behavior problems predicted more parental depression, it is possible that
parental depression contributes to higher incidence of child behavior problems, which created the
issue of reciprocal causation, which weakened the findings of the study (King et al., 1999).
Another weakness of the study was the possibility that coping and burden were not well
operationalized (King et al., 1999). Further evaluation of various comprehensive models may
better support the findings of the study and promote additional understanding of the specific
factors affecting parents well-being; therefore, improving the ability to suggest more appropriate
support for families with children with DDs.
Dunst and Trivette (2009) conducted a review of literature, which extended the purpose
of the previous study by further examining the direct and indirect effects of family-centered care
on parent and child psychological health through the use of meta-analytic structural equation
modeling (MASEM). The purpose of this review was to determine if the relationships found in
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the literature were supported by empirical evidence (Dunst & Trivette, 2009, para 5).
Structural equation modeling (SEM) was used to hypothesize the relationships between the
variables of interest and test their fit in the models patterns of relationships upon implementation
of various measures (Dunst & Trivette, 2009). The MASEM gathered data from multiple studies,
which were used to test with the SEM (Dunst & Trivette, 2009).
The SEM hypothesized that family-centered care would have direct effects on parental
self-efficacy beliefs and psychological health and indirect effects on parent psychological health
mediated by self-efficacy beliefs (Dunst & Trivette, 2009, para 6). Self-efficacy was
hypothesized to have a direct effect on parent and child psychological well-being, but an indirect
effect on child health mediated by parent psychological well-being (Dunst & Trivette, 2009).
Psychological well-being of the parent was expected to have a direct effect on child health based
on the parent and child affective behavior relationship (Dunst & Trivette, 2009). Finally, higher
complexity of the childs healthcare needs was expected to negatively affect parent and child
psychological health (Dunst & Trivette, 2009).
Fifteen studies were included in this meta-analytic structural equation modeling study to
be used for the MASEM along with data collected for analyses from studies published in referred
journals, monographs, a book chapter, and three unpublished studies (Dunst & Trivette, 2009).
The criteria for selecting studies was the inclusion of all of the following measures: familycentered care, self-efficacy, parent and child psychological health, and child special healthcare
needs (Dunst & Trivette, 2009). Participants of the 15 studies included 2948 parents/primary
caregivers (94% mothers, 82% married/living with a partner, average age of 33 with a range of
17-67), majority Caucasian (93%) with 4% Black, 2% Latino, or another race (1%), and varied
socioeconomic status (Dunst & Trivette, 2009). Participants children were an average age of 39
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months, 46% were male and 54% were female, and half of the children (46%) had an identified
disability associated with special healthcare needs while the other half (54%) had
unidentified/undiagnosed developmental delays (Dunst & Trivette, 2009).
Studies included in the meta-analysis were comprised of studies in which participants
completed numerous scales about themselves, their children, perceptions of professional
caregiving and family-centered care, self-efficacy beliefs, and psychological health of the family
(Dunst & Trivette, 2009). Measures used for the studies involved in this meta-analysis included
the Help-giving Practices Scale, Family-Centered Practices Scale, Enabling Practices Scale,
Personal Assessment of Control Scale, Practitioner Personal Control Scale, Early Intervention
Efficacy Appraisal Scale, Degree of Personal Influences Scale, Center for Epidemiological
Studies Depression Scale, goodness of fit statistics, Comparative fit index, and root mean square
error of approximation among many others, which strengthened the validity and reliability of the
study (Dunst & Trivette, 2009). At the studys end, family-centered care was found to have
indirect effects on parent and child psychological health mediated by self-efficacy beliefs, which
was supported by study results theorized in various literature about family-centered care (Dunst
& Trivette, 2009). The strengths of this study include the use of both meta-analysis and structural
equation modeling and its diverse sample, which strengthened the validity and reliability of the
findings. The weaknesses of this study include the use of self-report scales, which may have
influenced the data since the respondent providing the measure of the different variables was the
same and the fact that all studies used were conducted by the authors themselves and included
families from mainly two states in the United States, which weakened the generalizability of the
findings.
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A qualitative study conducted by Miller, Condin, Mckellin, Shaw, Klassen, and Sheps
(2009) interviewed parents of 47 children with complex chronic health conditions with the
purpose of examining their experiences and perceptions as they relate to continuity of care. The
semi-structured interviews elicited parents perceptions of care, services they received,
interactions with formal and informal health providers, and developmental, educational, and
social services, which created opportunity to elicit experiences of continuity or coherency within
the services related to their childs care (Miller et al., 2009). Purposive sampling through
specialized hospital clinics, physicians offices, and patient support organizations was used to
recruit a sample of parents or primary caregivers (26 mothers and 2 fathers) of 47 elementary
school-aged children diagnosed with spina bifida (n=9), Down syndrome (n=11), attentiondeficit/hyperactivity disorder (ADHD, n=11), Duchenne muscular dystrophy (DMD, n=9), or
cystic fibrosis (n=7) (Miller et al., 2009).
The open-ended, semi-structured interviews were conducted by trained members of the
research team who encouraged parents to provide spontaneous narratives about their service
providers in relation to their childs care while using questions and probes designed to elicit
discussion of parents perceptions of many aspects of their childs care (Miller et al., 2009).
Results of the study include the existence of relational, informational, and management
continuity among the parents narratives, strong importance on a thorough knowledge of the
child on part of the service providers supported by the need for continuity of personal
relationships, and the imperative need for communication among the entire spectrum of service
providers to provide continuity of care (Miller et al., 2009). Meaning that, parents are
emphasizing the need to: establish and maintain a consistent therapeutic relationship with
professionals, engage in excellent information transferring with professionals, and experience
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flexible, seamless service across service providers. The diverse geographic and socio-economic
backgrounds of the families strengthen the generalizability of the findings. However, the study is
limited in that its recruitment strategy may have over-sampled families receiving hospital-based
care; therefore, it is possible that other perceptions of continuity of services was
underrepresented.
A qualitative exploratory study conducted in Australia by Fereday, Oster, and Darbyshire
(2010) explored the experiences of children with disabilities, their families, and carers with the
purpose of developing disability awareness resources for generic health professionals (GHPs)
such as a dentist, nurse, or allied health professional. Purposive sampling from 34 disability and
parent/carer organizations was used to ensure participation of parents/carers who had direct
experience caring for a child with a disability and interacting with GHPs (Fereday et al., 2010).
Focus groups (n=5) of 27 parents/carers and seven individual interviews involving a total of 34
parents were conducted across both rural (one) and metropolitan (four) areas (Fereday et al.,
2010). The majority of participants were female (88%) within 31-50 years of age with children
mostly under the age of 10 (Fereday et al., 2010). An even gender ratio existed among the
children of the participants; however, information on specific disabilities was not collected in
order to avoid comparative analysis across disabilities and compromising the privacy of the
participating families (Fereday et al., 2010).
Focus groups of four to six participants were audio-taped in a variety of comfortable
settings, which allowed opportunity for natural, informal conversations in which participants
spoke openly about their most significant experiences and perceptions in relation to GHPs, which
may have strengthened the richness of the data (Fereday et al., 2010). Data collected from the
focus groups was processed through two levels of analysis (thematic analysis) with assistance by
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the qualitative data management software QSR NVivo 7, which strengthened the validity and
reliability of the study (Fereday et al., 2010). The study found that parents ultimately wanted
partnership from GHPs including the need for GHPs to coordinate services for their children and
communicate with other specialist to provide the coordinated care (Fereday et al., 2010). Lack of
continuity of care among various health services related to the childs disability was related to
poor emotional well-being of the parent (Fereday et al., 2010). Finally, the study found that there
was a need for more family-centered care among GHPs as many GHPs proposed treatments that
negatively affected the ability of the family to function as a whole (Fereday et al., 2010).
Although the study provided extensive analysis of the collected data, it was limited in that only a
minimal amount of demographic information was collected. Future research exploring the impact
of various demographics such as ethnicity and disability of the child may strengthen the findings.
A modified grounded theory study conducted in Japan by Wakimizu, Fujioka, and
Yoneyama (2010) recruited twenty mothers from a single rehabilitation center for children with
developmental disorders with the purpose of clarifying the empowerment process for promotion
of family-centered care for children with developmental disorders. The mothers participated in
face-to-face interviews, which focused on level of empowerment and expression or use of
empowerment (Wakimizu et al., 2010). Level of empowerment was measured by how the
mother: manages day-to-day situations, interacts with the service team to obtain services needed
for the child, and advocates for improved service for all children. Expression of empowerment
was measured by the mothers attitude, knowledge, and behaviors (Wakimizu et al., 2010, para
11). The study found that mothers felt uncomfortable with the child, had conflicts in the family
due to the childs problematic behaviors, were deficient in child care information, felt happy
when family members recognized characteristics of the child, found it helpful to collaborate with
22
local care staff, approached local administration for better support systems for all children, and
had expectations for a valuable life for their child (Wakimizu et al., 2010).
Overall findings of the study suggested that promotion of the empowerment process is
beneficial but may be limited in that it requires intense collaboration among local care teams
(Wakimizu et al., 2010). The sample size was of adequate size and provided rich data, which
displayed findings consistent across multiple participants, which strengthens the generalizability
of the findings. Data collection and data analysis were performed until theoretical saturation was
met, which further strengthened the findings of the study. However, the recruitment method in
which doctors introduced the study to the mothers may have influenced those who participated
and excluded children and caregivers who do not visit a doctor on a regular basis, which
weakens the diversity of the sample and the generalizability of the findings. Further exploration
of the empowerment process involving fathers as well may strengthen the study.
Kuhlthau et al. (2011) conducted a systematic review gathering evidence from 24 articles
regarding family centered care with the purpose of determining its relationship to key outcomes
for families of children with special health care needs (CSHCN). Search engines utilized for the
review include Medline, CINAHL, PSYCINFO, and SSCI were used to find studies that met the
following inclusion criteria: use of quantitative methods to evaluate an intervention to promote
family centered care (Kuhlthau et al., 2011). Two authors independently reviewed seven
randomized controlled trials, 11 studies involving cross-sectional associations with no
intervention, and six examined interventions with controls or before and after comparisons
(Kuhlthau et al., 2011). Six articles were published before the year 2000, 13 articles looked at
CSHCN and children with disabilities or multiple chronic health conditions, 6 articles looked at
23
children with asthma, and 5 articles examined other specific chronic conditions (Kuhlthau et al.,
2011).
At the studies end, family centered care was found to be positively associated with
improvements in efficient use of services, health status for both the parents and children,
satisfaction with services and care, access to specialized resources and information,
communication with professional care providers, patient-provider partnership, and family
functioning for children with special healthcare needs (Kuhlthau et al., 2011). Most of the studies
included in the review measured several findings with only a few studies having non-significant
or negative findings, which strengthens the reliability of the findings. The findings of this study
are also strengthened by the fact that they are supported by similar evidence from related studies
involving patient-focused interventions. Weaknesses of the study include the possibility of
publication bias and the examination of studies only in the United States that were published in
English, which weakened the generalizability of the findings.
State-Trait Anxiety Inventory and COPE Program
The author chose to use the following studies despite their older dates of publication as
they contain essential data critical to the proposal of evidence-based recommendations for
parents of children with DDs. The following studies describe tools necessary for the
measurement of interventions outlined in the Creating Opportunities for Parent Empowerment
(COPE) program designed to decrease stress for parents of children admitted to a Pediatric
Intensive Care Unit (PICU). These tools will be applied to the population of parents of children
diagnosed with a DD, which is further discussed in chapter three.
24
State-Trait Anxiety Inventory

The State-Trait Anxiety Inventory (STAI) (Spielberger et al., 1983) is a commonly used
measure of state and trait anxiety. State anxiety measures current feelings of anxiety such as
feeling tense, worried, calm, or secure and trait anxiety measures an individuals tendency to
have anxiety. The STAI is a 40-item questionnaire containing 20 items for assessing state anxiety
and 20 items for assessing trait anxiety and is commonly used in research as an indicator of
caregiver anxiety. Each item is rated on a 4-point scale from almost never to almost always
with higher scores indicating a greater anxiety level. Internal consistency coefficients for the
scale range from 0.86 to 0.95 and test-retest reliability coefficients range from 0.65 to 0.75 over a
two-month interval (Spielberger et al., 1983). Considerable evidence attests to the construct and
validity of the scale as a reliable and accurate tool for assessment of anxiety.
Shewchuck, Richards, and Elliott (1998) conducted a quantitative descriptive study to
identify and describe systematic patterns in the development of depression, anxiety, and physical
symptoms within family caregivers of persons with spinal cord injury (SCI) and examine the
processes involved in their health and adjustment to caregiving responsibilities. The trait version
of the STAI (Spielberger et al., 1983) was used to assess caregiver anxiety of eight men (ages 26
to 55 years) and 54 women (ages 21 to 69), recruited for the study based on consecutive
admissions to a university-based medical rehabilitation facility (Shewchuck et al., 1998). Patients
receiving care from participants were primarily male (87 percent) and Caucasian (76 percent; the
remainder African American) (Shewchuck et al., 1998). Patients had varying degrees of spinal
cord injury including incomplete lesions with paraplegia (bilateral paralysis of lower extremities)
(13 percent), complete lesions with paraplegia (35 percent), incomplete lesions with tetraplegia
(muscle paralysis of all four limbs) (31 percent), and complete lesions with tetraplegia (21
25
percent) (Shewchuck et al., 1998). Causes of spinal cord injury varied from motor vehicle
accidents (57 percent), to violence (13 percent), falls (11 percent), sports activities (eight
percent), or other causes (Shewchuck et al., 1998).
Hierarchical linear modeling (HLM) was used to analyze longitudinal data sensitive to
examine individual developmental patterns of depressive behavior, anxiety, and physical
symptoms over the first year of caregiving and determine any correlations in the developmental
patterns among the caregivers (Shewchuck et al., 1998). The study concluded that physical
symptoms and anxiety were interdependent. Level of anxiety detected by the STAI was a major
predictor of initial levels of change in physical symptoms of caregivers (Shewchuck et al., 1998).
Changes in physical symptoms predicted initial levels of depressive behavior over time. The
main finding of this study was that the STAI was a sensitive predictor of caregiver distress over
time and that stress/anxiety is largely influenced by changes in support systems, health, and
individual characteristics of the person being cared for (Shewchuck et al., 1998). Strengths of the
study include the use of HLM, which strengthened the validity of the data and the use of a wide
range of spinal cord injuries and causes for those injuries, which strengthens the generalizability
of the findings. However, the study was limited in that it failed to account for personality traits or
environmental and cultural variables that could have a significant effect on the coping ability and
subsequent anxiety level of each caregiver, which may weaken the validity of the findings.
COPE Program
The following three studies are full-scale randomized controlled trials used to develop a
3-session COPE-PICU intervention for mothers of children unexpectedly admitted to a PICU
(Melnyk, 1994; Melnyk, et al., 1997; Melnyk, et al., 2004).
26
Melnyk (1994) conducted a randomized controlled trial to examine the effects of

providing informational interventions including child behavior information and parental role
information (both separately and in combination) on the coping ability of 108 mothers (ages 2144 years) with children (ages 2 to 5 years old) who were unexpectedly hospitalized in an
intensive care unit for more than 48 hours. Most of the mothers were Caucasian (72.2 percent)
and rooming with their child (Melnyk, 1994). Distribution between male and female children
was equal with the majority of patients having a medical admission versus a surgical admission
(84 percent) (Melnyk, 1994). The three major reasons for hospitalization included respiratory
conditions, gastrointestinal illnesses, and orthopedic issues with 88 percent of children having no
prior hospitalization (Melnyk, 1994). The STAI was used to determine the mothers emotional
outcome of coping during and following hospitalization. Internal consistency reliabilities of the
trait and state scales for this sample were .90 and .93 using Cronbachs alpha, a commonly used
coefficient of internal consistency used to estimate the reliability of a psychometric test for a
sample of participants (Melnyk, 1994).
The Index of Parent Participation/Hospitalized Child (IPP) was created to measure the
problem-solving aspect of mothers coping and contained 36 predicted parenting behaviors
during childrens hospitalization such as bathing, monitoring intake and output, playing actively
with toys, and explaining tests or procedures (Melnyk, 1994). Mothers were informed to place a
check mark next to each item they performed in the previous 24 hours and scoring consisted of
totaling the number of items performed and dividing that by the number of items the mother had
an opportunity to perform (Melnyk, 1994). The Index of Parental Support during Intrusive
Procedures (IPS) was developed to obtain an objective measure of parental support during an
intrusive procedure and contained 16 positive and negative opposing items such as smiling at
27
their child (positive). Two trained register nurses, blind to experimental group, observed the
procedures and marked either yes or no for both positive and negative behaviors (no being
considered a support parenting behavior if used for checking a negative item) with no items
also given a score of one point (score index = 0 to 16) (Melnyk, 1994).
The Post-Hospital Behavior Questionnaire (PBQ), a 27 item scale, was used to measure
negative change in childrens behaviors following hospitalization. The parents compared their
childs typical behaviors prior to hospitalization with their behaviors following hospitalization
through selection of one of the following responses: (a) much less than before; (b) less than
before; (c) same as before; (d) more than before; and (e) much more than before, with a total
score of each item ranging from 27 to 135 (scores greater than 81 indicate negative behavioral
change) (Melnyk, 1994). The 20-item Parental Belief Scale was modified from a 15-item belief
scale to measure variables predicted to facilitate the effects of child behavior information and
parental role information on maternal anxiety and mother participation in their childs care
(Melnyk, 1994). Eight items addressed parental beliefs about their hospitalized child such as I
know what changes in behavior to expect in my child while he/she is in the hospital and 12
items measured parental beliefs regarding their role during hospitalization (i.e. what things they
can do to help their child deal with being hospitalized) (Melnyk, 1994). Parents were asked to
indicate agreement with each item using a 5-point Likert scale ranging from strongly disagree
to strongly agree, with higher scores indicating more positive beliefs. Cronbachs alpha was .
86 for the total scale.
Mothers were asked to participate in the study within 12 hours of their childs admission
to the PICU, were randomly assigned to one of the four study groups, and then were instructed to
complete the state and trait forms of the STAI prior to implementation of the interventions
28
(Melnyk, 1994). All interventions were tape recorded and provided in written form for content
control. Mothers listened to either child behavior information describing the range of behaviors
that young children typically display during and after hospitalization (seven minutes in length),
parental role information, which suggested how mothers could be involved in their childs care
or assist their child in coping with the hospital experience (seven minutes in length), both types
of information combined (14 minutes in length), or controlled information consisting of general
information about the hospital and its policies (Melnyk, 1994).
To assess whether subjects in the experimental groups processed the information
received, mothers rated their knowledge of hospitalized childrens behaviors and about what they
could do to assist their child in dealing with hospitalization on two 10-cm analogue scales with
scoring ranging from 0 (no knowledge) to 100 (a great deal of knowledge) (Melnyk, 1994).
Following the audiotaped interventions, mothers in all groups answered two manipulation
questions and then responded to the Parental Belief Scale and the second State Anxiety Inventory
between 24 to 48 hours following admission. The IPP and observer rating of Parental Support
during the Intrusive Procedure were completed between 48 to 72 hours following admission
(Melnyk, 1994). The PBQ and State Anxiety Inventory were mailed to the mothers eight days
post discharge. Two-way analysis of variance was performed for each of the two manipulation
checks.
Results of the study revealed that mothers who received child behavior information
reported significantly higher knowledge of their childs behaviors during and after
hospitalization than mothers who did not receive this information (Melnyk, 1994). Mothers who
received parental role information reported greater knowledge than those who did not receive
this information. Therefore, results support that mothers processed the appropriate information.
29
The main findings of the study revealed that mothers who received either type of information
reported less anxiety and greater participation in their childs care during hospitalization than
those who did not receive information, consistent with findings of previous, similar studies
(Melnyk, 1994). Mothers who received combined information provided significantly more
support for their child during invasive procedures than mothers who only received parental role
information. Children of mothers who received the child behavioral information displayed
significantly less negative behavioral change than that of children of mothers who did not receive
this information (Melnyk, 1994). Strengths of the study include the use of a systematic review of
literature, interviews of parents to determine typical parenting behaviors during childhood
hospitalization, conduction of pilot studies, and use of clinical specialists to develop and confirm
validity of the IPP and the IPS, which strengthens the validity of the findings of the current study.
However, the study is limited in that the sample consisted primarily of Caucasians; therefore,
replication of the study with different ethnic groups may strengthen the validity and
generalizability of the findings.
Melynk, Alpert-Gillis, Hensel, Cable-Beiling, and Rubenstein (1997) conducted a pilot
randomized controlled trial to determine the effects of the Creating Opportunities for Parent
Empowerment (COPE) intervention on the coping outcomes of critically ill children and their
mothers. Thirty mothers of children (age one to six years) in a pediatric intensive care unit
(PICU) were randomly assigned to receive COPE or a comparison program (Melnyk et al.,
1997). The COPE intervention was developed based on a combination of the self-regulation
theory, control theory, and emotional contagion hypothesis as they received strong empirical
support in prior work with mothers of hospitalized children (Melnyk et al., 1997). Self-regulation
theory focuses on an individuals ability to cope with stressful situations and suggests that
30
decreased discrepancy between what is expected and what truly occurs, increased predictability,
and enhanced ability to understand and interpret experiences, enhances coping (Melnyk et al.,
1997).
When hospitalized, young children often exhibit a variety of uncharacteristic behaviors
such as separation anxiety, regression, withdrawal, aggression, and sleep disturbances, and this is
a major source of stress for parents (Melnyk et al., 1997). Therefore, one component of the
COPE program was to provide mothers with information regarding their childrens likely
behaviors and emotions in order to promote a stronger ability of mothers to predict their childs
responses to hospitalization and anticipate the use of parenting behaviors that have been effective
in the past, encouraging greater parenting confidence and decreased parental anxiety (Melnyk et
al., 1997). The control theory suggests that a discrepancy between the current condition or state
and the preexisting standard will mediate behaviors that serve to decrease the discrepancy, but
that certain conditions such as lack of confidence or environmental inhibitions may interfere with
the initiation of individual behaviors to reduce the discrepancy (Melnyk et al., 1997).
Melnyk et al. (1997) suggests that when a child is critically ill, parents experience a
change or loss in parental role, which creates discrepancy between their usual parenting standard
at home and their parenting in the PICU. However, decreased parenting confidence, parental role
uncertainty, and the restrictions of a highly technical environment inhibit parents from initiating
behaviors that would help them regain their usual parenting standard; therefore, another
component of the COPE program was a parental role intervention that enhances mothers
existing parenting standard by providing instruction and practice in parenting behaviors specific
to the situation in order to increase maternal confidence and decrease role uncertainty (Melnyk et
al., 1997). As a result, mothers in the experimental group were hypothesized to have less anxiety
31
and negative mood state as well as greater participation in their childs care than mothers in the
control group (Melnyk et al., 1997). High stress levels and feelings of helplessness associated
with loss of parental role have been reported to contribute to the development of posttraumatic
stress disorder (PTSD); therefore, as mothers in the experimental group were expected to have
less distress and helplessness, it was also hypothesized that they would report fewer symptoms of
PTSD (Melnyk et al., 1997) The emotional contagion hypothesis claims that anxiety is easily
transferred from one person to another and suggests that the anxiety of parents may transmit
anxiety to their children through both verbal and nonverbal communication (Melnyk et al.,
1997). As overall parental anxiety and negative mood state are hypothesized to be reduced by the
COPE program, the emotional contagion hypothesis predicts that children of parents in the
experimental group will have less anxiety and demonstrate better adjustment than children of
parents in the comparison group (Melnyk et al., 1997).
A convenience sample of 30 mothers (16 experimental and 14 control group) of children
ages one to six years-old admitted to a PICU in Upstate New York were selected to participate in
the study based on the following patient criteria: no prior PICU admissions, expected survival,
and no suspected or diagnosed physical or sexual abuse (Melnyk et al., 1997). The sample
comprised of 23 Caucasian, five African American, and two Hispanic mothers, ages 18 to 43
years-old (Melnyk et al., 1997). The sample of patients included 14 males and 16 females with
80 percent being unplanned admissions (Melnyk et al., 1997). The two major reasons for
hospitalization included accidental trauma (n= 11) and respiratory conditions (n= 9) with an
average length of stay of 82.8 hours (Melnyk et al., 1997). Maternal support during intrusive
procedures was measured using the IPS described in the previous study (Melnyk, 1994). Eight
pediatric clinical nurse specialists supported the content validity of the scale and the reliability
32
coefficient for the total scale averaged .78 over two ratings for the current sample (Melnyk et al.,
1997). Mothers participation in their childs care was measured using the IPP described in the
previous study (Melnyk, 1994).
While in the PICU, the childrens primary nurses completed the checklist during a fourhour period and once transferred to the pediatric unit, mothers completed the checklist for a 24hour time period (Melnyk et al., 1997). Content validity was supported similarly to the IPS and
Cronbachs alphas of the primary nurses and mothers of this sample were .87 and .82 (Melnyk et
al., 1997). Mothers involvement in their childs care was also measured by asking the childrens
primary nurses to complete two visual analogue scales: To what extent do you think your
patients mother is involved in the (a) physical care of her child? (VAS-PC); and (b) the
emotional care of her child? (VAS-EC) with 100-mm scales anchored at each end of the
descriptor words not at all (score of 0) and extremely involved (score of 10), (Melnyk et al.,
1997, para 20). Mothers state anxiety was measured with the STAI described in the previous
study with a Cronbachs alpha being .92 for the trait scale and .95 for the state scale with this
sample of mothers (Melnyk, 1994). Mothers negative mood state was measured with the Profile
of Mood States (POMS), assessing six negative mood states on a 30-item, five-point scale that
ranges from not at all (0) to extremely (4) with a total summing of the 30 items ranging from
0 to 120 (Melnyk et al., 1997). Cronbachs alpha for total negative mood state averaged .96 with
this sample (Melnyk et al., 1997).
Mothers stress related to the PICU environment was measured by the Pediatric Stressor
Scale: Pediatric Intensive Care Unit (PSS:PICU), containing 40 items reflecting parental
environmental stress from seven dimensions on a five-point scale ranging from not stressful
(1) to extremely stressful (5) with a total score ranging from 40 to 200 (Melnyk et al., 1997).
33
Mothers posttraumatic stress symptoms were measured with the Post-Hospital Stress Index for
Parents (PSI-P), developed for this study and based on diagnostic criteria for PTSD published in
the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) (Melnyk et al., 1997).
Mothers completed this questionnaire by answering 20 yes or no questions pertaining to their
own PTSD symptoms (i.e. Do you experience frequent distressing memories of the
hospitalization?) and the score totaling ranged from 0 to 20 (Melnyk et al., 1997). The
reliability coefficient was .90 with this sample (Melnyk et al., 1997). Child adjustment was
assessed using the PBQ described in the previous study with a Cronbachs alpha average of .88
with this sample (Melnyk, 1994). The Post-Hospital Stress Index for Children (PSI-C) was used
to assess PTSD symptoms of the children and was identical to the PSI-P except that mothers
completed the 20-item questionnaire pertaining to their childs PTSD symtoms (Melnyk et al.,
1997). An 11-item Parenting Role Questionnaire (PRQ) was used to compare mothers typical
parenting behaviors before and after hospitalizations using a four-point Likert-type scale with a
total scoring ranging from 11 to 44, as a measure of role change (Melnyk et al., 1997).
Cronbachs alpha for this sample was .91 (Melnyk et al., 1997).
The cope program consisted of two phases. Phase I occurred shortly after the childs
admission to the PICU and consisted of audiotaped information (with written form) that provided
either child behavior information or parental role information similar to that provided in the
previous study (Melynk, 1994). Phase II occurred shortly after transfer from the PICU to the
general pediatric unit and was considered a booster intervention consisting of audiotaped
information, which provided mothers with either additional information on childrens responses
to hospitalization or a parent-child activity workbook that contained three activities (puppet play,
therapeutic medical play, and creating an I am special book) to assist parents in improving
34
their childs coping during the hospitalization (Melnyk et al., 1997). The comparison group also
consisted of two phases. Phase I contained audiotaped information about the PICU and Phase II
contained audiotaped information about the hospital and general pediatric unit as well as three
parent-child activities including coloring, reading a book, and playing with clay (Melnyk et al.,
1997).
Mothers received audiotaped information appropriate to their study 2 to 16 hours after
their childs admission to the PICU an answered four questions related to the tapes content
following the intervention, which ensured that mothers who successfully answered three of the
four questions, processed the information correctly (Melnyk et al., 1997). Between 10 to 24
hours PICU admission, mothers in both study groups completed the (STAI-A, POMS, and
PSS:PICU, the primary nurses completed the IPP, VAS-PC, and VAS-EC, and the IPS was
obtained by a research assistant, blind to the study condition, during a rectal temperature
(Melnyk et al., 1997). Two to 16 hours after transfer to the general pediatric unit, the mothers
completed the STAI-A, POMS, and PSS:PICU, then listened to the booster audiotape specific
to their experimental group, and then showed evidence of processing the audiotaped information
by correctly answering at least 7 out of 10 manipulation check questions (Melnyk et al., 1997).
Mothers then received their parent-child activity workbooks, were instructed on the various
activities to be completed, and were then provided a questionnaire at the end of each of the three
activities to ensure successful completion (Melnyk et al., 1997).
Twenty-four to 36 hours following transfer to the general pediatric unit, the mothers
completed the STAI-A, POMS, and PBQ, the primary nurse completed the VAS-PC and VASEC, and a research assistant, blind to the study, obtained the IPS (Melnyk et al., 1997). Four
weeks after hospitalization, the mothers were mailed the STAI-A, POMS, PBQ, PRQ, PSI-P,
35
PSI-C, and an evaluation form for the information and parent-child activities received during
hospitalization (Melnyk et al., 1997). Overall findings of the pilot study suggested that mothers
in the COPE group had a clear understanding of their childs likely behavioral and emotional
responses as they recovered from critical illness, resulting in significantly less parental stress
related to their childs behaviors and emotions compared to mothers in the comparison group
(Melnyk et al., 1997). Mothers in the COPE program supported their children significantly more
and were rated by PICU nurses (blind to the study) as more involved in their childs care than
mothers in the comparison group (Melnyk et al., 1997). Greater involvement in and support
during invasive procedures of mothers in the experimental group resulted in more effective
coping ability of their children as compared to children of mothers in the comparison group
(Melnyk et al., 1997). Following hospitalization, mothers in the COPE group reported less
parental role change than mothers in the comparison group (Melnyk et al., 1997). Strengths of
the study include the use of measurement tools supported by previous studies, which strengthens
the validity and reliability of the findings. However, the study is limited in that it contained a
small sample size, resulting in large variances and a lack of statistical significance and the
sample was limited to English speakers only, which decreases the generalizability of the
findings.
Melnyk, Alpert-Gillis, Feinstein, Crean, Johnson, Fairbanks, Small, Rubenstein, Slota,
and Corbo-Richert (2004) conducted a randomized controlled trial with the purpose of evaluating
the effects of the COPE program, as a continuation of the previous study (Melnyk et al., 1997).
The randomized controlled trial consisted of follow-up assessments at 1, 3, 6, and 12 months
after hospitalization with a sample of 163 mothers (ages 18 to 52 years-old) and their children
(ages two to 7 years-old) who were admitted to the PICUs of two childrens hospitals. The
36
majority of mothers were Caucasian (71.2 percent) followed by African American (20.3 percent)
with only a small percentage of Hispanic (1.8 percent) and Native American (1.2 percent)
mothers (Melnyk et al., 2004). Ninety-nine children (60.7 percent) were male and 64 (39.3
percent) were female with major reasons for hospitalization of respiratory problems, accidental
trauma, neurologic problems, and/or infection (Melnyk et al., 2004). Fifty-seven percent (n = 93)
of children had never been hospitalized overnight and none had experienced a prior PICU
hospitalization (Melnyk et al., 2004).
Mothers in the COPE group received a 3-phase educational-behavioral intervention
program: 1) at 6 to 16 hours after PICU admission, 2) at 2 to 16 hours after transfer to the
general pediatric floor, and 3) two to three days after discharge from the hospital; control-group
mothers received a structurally-equivalent program (Melnyk et al., 2004). The COPE program
delivered audiotapes with matching written information and a parent-child activity workbook
with the same goal and parameters as the previous study (Melnyk et al., 2004). The parent-child
activity workbook was slightly different in this study in that it included reading and discussing
Jennys Wish, a story about a young child who successfully copes with a stressful hospitalization,
along with the puppet play and therapeutic medical play (Melnyk et al., 2004). Measures
included maternal anxiety, negative mood state, depression, maternal beliefs, parental stress, and
parent participation in the childs care (similar to the previous study) with the addition of child
adjustment, which was assessed with the Behavioral Assessment System for Children (BASC)
(parent form) (Melnyk et al., 2004).
The BASC is a 131-item, 4-point scale ranging from one (never) to four (always) that
measures both adaptive and problem behaviors of children, which mothers rate based on the past
six months (Melnyk et al., 2004). Parental beliefs about their childs responses during
37
hospitalization and the parental role during hospitalization was measured using the 20-item
Parental Belief Scale for Parents of Hospitalized Children in which parents indicated agreement
with each item on a 5-pont scale ranging from one (strongly disagree) to five (strongly agree)
with a possible total score of 20 to 100 (Melnyk et al., 2004). Results of the study revealed that
COPE mothers reported significantly less parental stress and participated more in their childs
physical and emotional care compared to control-group mothers (Melnyk et al., 2004). COPE
mothers were also revealed to have less negative mood state/depression and fewer PTSD
symptoms at follow-up assessments after hospitalization (Melnyk et al., 2004). In addition,
COPE mothers reported stronger beliefs of their childrens likely responses to hospitalization and
how they could enhance their childs adjustment, which may have mediated the significantly
fewer withdrawal symptoms (six months post-hospitalization) and negative behavioral symptoms
(12 months post-hospitalization) of children of COPE mothers (Melnyk et al., 2004). COPE
mothers also reported less hyperactivity and greater adaptability of their children at 12 months
compared to control-group children (Melnyk et al., 2004). Strengths of the study include the use
of use of a large sample size from two PICUs, which strengthens the validity of the findings.
However, the study is limited in that the sample contained largely Caucasians and failed to
include fathers, which weakens the generalizability of the findings. In addition, the rate of
attrition through 12 months post-discharge threatens the internal validity of the study (Melnyk et
al., 2004).
Conclusion/Summary
The reviewed studies above provide much information on various adverse health effects
of caring for a child with a DD on the parents health, particularly involving increased stress and
lack of resources and child-rearing information that provide consistent and collaborative material
38
across multiple facilities and programs. Common themes shown by these studies to predict effect
on the health of parents include lack of support due to the severity of the childs disability, high
behavior problems of the child, and the mental state of the parents prior to caring for the child.
Much of the research provided on the health of parents rearing children with DDs focuses on the
mothers, which leaves a lack of adequate information on the effect of caring for a child with a
disability specifically on paternal health. Further study of individual variables, such as lack of
sleep, which may influence increased stress among parents caring for children with DDs may
strengthen available literature in determining the major variables influencing stress and poor
mental health of parents.
The literature suggests that family-centered care is effective in providing continuity of
care across various services related to the complex care needs of children with DDs and that it
greatly improves access to services, patient-physician communication, and satisfaction with care,
which in turn improve both parent and child psychological well-being. Though the author has
reviewed studies regarding the effectiveness of a few support programs available for
improvement of parental health, there is a lack of adequate research on support tools specifically
for parents rearing children with DDs. Although the STAI and COPE tools show effectiveness in
assessing the efficacy of the COPE program interventions on reducing maternal stress and
anxiety regarding unexpected PICU hospitalizations of children, these tools may be modifiable
to use for parents of children with DDs. The following chapter will discuss modification of the
COPE program for the development of evidence-based best practice recommendations for
39
CHAPTER 3
Best Practice Recommendations: Parents of Children Diagnosed with a Developmental
Disability
Introduction
The purpose of this best practice thesis is to compile a list of evidence-based
recommendations to effectively improve nursing care for parents of children with DDs. The
following chapter will detail the best practice proposal recommendations to help nurses and other
pertinent healthcare professionals provide adequate support to parents of children with DDs
through the process of empowerment.
The literature reviewed in the previous chapter details important information regarding
the common experiences of parents of children with DDs. As there is a lack of adequate research
available regarding the use of specific interventions to improve anxiety and stress of parents of
children with DDs, the COPE program will be modified to be used as an intervention for this
population. The overriding principle that appears within the literature review is family-centered
care (FCC) as an effective health care approach to decrease stress and anxiety for parents rearing
children with DDs. FCC encourages the development of mutually beneficial partnerships
between families and health care providers (HCPs) to which parents are active participants and
decision-makers in their childs care (Miller et al., 2009). According to Dunst and Trivette
(2009), the development of a partnership through FCC increases parental self-efficacy beliefs,
promoting parental psychological health, thus indirectly promoting child health. In addition to
increasing parental self-efficacy, FCC promotes continuity of care, which further enhances
parental psychological well-being as it improves access to services, physician-client
communication, and satisfaction with care (Wakimizu et al., 2010). Thus, FCC will act as the
40
overarching framework within which the COPE program will be implemented as it is shown to
be effective in improving health and well-being of the parents, which indirectly improves the
health and well-being of the child.
The State-Trait Anxiety Inventory (STAI) (Spielberger, 1983) will be used to measure
parental anxiety symptoms both prior to and following implementation of the COPE program.
The valid and reliable State-Trait Anxiety Inventory (STAI) is a well-established construct
comprised of two self-report scales (Spielberger, 1983). Current feelings of anxiety are measured
with the first scale (A-State), which will be used to measure baseline stress and anxiety (i.e. prior
to implementation of the intervention) and again to measure change in stress and anxiety
following completion of the intervention. The individuals inclination toward anxiety is
measured in the 20-item trait scale (A-Trait), which will only be measured at baseline. Reviewed
articles on caregiver coping revealed a Cronbachs alpha for the A-Trait and A-State Scales that
has exceeded .86 (Shewchuck, Richards, & Elliott, 1998; Melnyk, 1994; Melnyk, et al., 1997;
Melnyk, et al., 2004).
Evidence-Based Recommendations
COPE-PDD Intervention (a)
COPE for Parents of Children Diagnosed with a Developmental Disability (COPE-PDD)
is a one-session intervention designed to be used by healthcare providers to facilitate positive
coping outcomes as measured by parental stress (i.e. STAI). The intervention is based on the
COPE-PICU 3-session intervention in which findings from three full-scale randomized
controlled trials, which used COPE, demonstrated that parents who received the COPE program
versus those who received the attention-control programs reported significantly less parental
stress, depression, anxiety, and fewer posttraumatic stress symptoms during their hospital
41
experience and up to twelve months following hospitalization (Melnyk, 1994; Melnyk, et al.,
1997; Melnyk, et al., 2004). The COPE-PDD intervention will be modified to include only the
parent intervention from the original COPE-PICU based on the severity of developmental delays
of the children in the proposed study.
This intervention will be adapted for delivery to parents of children diagnosed with a DD
and will consist of a one in-person session with digital versatile discs (DVDs) for content
delivery that are approximately 30 minutes in length. DVDs will be left with the participants for
later review. The COPE-PDD will focus on anticipatory educational and skill-building
information about frequently encountered parental emotional responses to the developmental
disability diagnosis. The program and activities will be manualized to ensure proper replication
in clinical practice and future research studies. The COPE-PDD will consist of an in-person
DVD information session, which will be left with the participant for additional review. A written
copy of the information will also be provided for parents to have for review and reflection. The
parenting activities in this session will consist of: (1) identifying special characteristics, stressors,
and coping strategies of their child with the DD diagnosis and (2) common emotional responses
in parents of children with a DD (Melnyk et al., 2004).
Identification of the childs characteristics enhances the ability of the parents to provide
essential information to their healthcare providers, promoting formation of a partnership with
their provider(s) in which critical information sharing between the parents and provider(s) takes
place (Miller et al., 2009). In the previously reviewed studies, parents reported a strong
importance of a thorough knowledge of the child on part of the service providers, supported by a
need for continuity of a personal relationship with their healthcare providers in order to stimulate
greater communication and information sharing, which in turn promotes FCC (Dunst & Trivette,
42
2009 and Fereday et al., 2010). FCC was associated with improvements in efficient use of health
services, access to specialized resources and information, and subsequent improved
psychological and physical well-being of both the parents and their children (Kuhlthau et al.,
2011).
COPE-PDD Intervention (b)
This intervention will consist of a one in-person session with DVDs for content delivery
that are approximately 30 minutes in length. A written copy of the information will be provided
in addition to the DVDs to allow parents to have review and reflection of the material discussed.
The content will contain (1) child behavior information describing the typical range of behaviors
associated with the childs DD and (2) parental role information suggesting how parents can be
involved in their childs care, especially how parents can assist their child in coping with a
hospital or clinical experience. Parents will be encouraged to compare the characteristics of their
child as identified during COPE-PDD intervention (a) to the information processed from COPEPDD intervention (b) regarding child behaviors typical to their childs DD to promote enhanced
understanding of their childs unique behavioral characteristics as compared to the general
behavioral characteristics seen with their particular DD.
Child behavior problems are associated with greater parental stress and increased risk for
parental depression; therefore, better knowledge of the childs behaviors (i.e. behavior problems)
and enhanced knowledge of the parental role in helping the child cope, empowers the parents to
predict triggers for child behavior problems and better determine successful coping strategies for
their child (Melnyk, 1994; Melnyk, et al., 1997; Melnyk, et al., 2004). According to Dunst and
Trivette (2009) and Wakimizu et al. (2010), empowerment of parents rearing children with DDs
is associated with decreased parental stress and overall anxiety.
43
Additionally, by creating awareness of parental stress in this population and empowering

parents to better rear children with DDs through the COPE program, FCC is established. The
COPE program not only addresses the professionals need to better understand the child with the
DD, but also the parents need for education, empowerment, and stress reduction. Thus, parents
needs are better addressed, they themselves are better cared for, and ultimately, the child is better
cared for as their primary caregiver (i.e. parent) is better equipped to care for the childs unique
healthcare needs. According to Kuhlthau et al. (2011), family centered care is associated with
improvements in efficient use of services and satisfaction with services and care, all of which
decrease parental stress and promote improved health and well-being within this population, the
ultimate goal of this thesis project.
Summary
Use of the COPE-PDD intervention within the overarching framework of FCC will be
directed toward improvement of parental stress, a common health complication of parents
rearing children with developmental disabilities (Eisenhower et al., 2009; Gallagher et al., 2010;
Hobson & Noyes, 2011; and Kobayashi et al., 2012). The suggested interventions for the best
practice recommendations for parents of children with developmental disabilities are based on
the previously reviewed studies, which are limited in that they fail to include appropriate
representation of paternal health and well-being and lack adequate research on support tools and
interventions specifically for parents rearing children with DDs. Appendix B depicts a compiled
list of the proposed interventions and the level of evidence supporting the associated literature,
while Appendix C provides definition of the applied levels of evidence.
44
CHAPTER 4
Implementation and Evaluation
The initial portion of this chapter will concentrate on implementing the COPE tool within
the framework of family-centered care for decreasing stress for parents of children diagnosed
with a DD. Physicians, nurses, and other participants will use the COPE tool to encourage
increased awareness of child behaviors specific to the DD and those specific to the child
themselves. This will promote empowerment of parents rearing children with DDs as they may
be better equipped to anticipate, thus cope with, child behavior problems (Dunst & Trivette,
2009). By implementing the COPE tool, parents of children with DDs will be better informed of
their childs disability; therefore, will better care for their childs specific healthcare needs, which
ultimately promotes family-centered care and decreased parental stress (Kuhlthau et al., 2011).
In order to implement the COPE tool, research on the Theory of Diffusion of Innovations
will be used as the framework for implementation and evaluation. The Diffusion of Innovations
Theory outlines a process consisting of a series of different actions used to guide implementation
of evidence-based research into clinical practice (Rogers, 2003). The theory models the
innovation-decision process, which is separated into five essential stages: knowledge,
persuasion, decision, implementation, and confirmation. The latter portion of this chapter will
discuss evaluation of implementing the COPE tool. The confirmation stage of the Diffusion of
Innovations Theory will be used to elucidate the evaluation process of the COPE tool. Lastly, the
final portion of this chapter will depict the strengths and limitations of the best practice project
and recommendations for future research related to parents of children with DDs.
45
Implementation
Diffusion of Innovations
The Diffusion of Innovations Theory will be applied to the theoretical implementation of
this evidence-based project into the health care environment of an outpatient facility that
provides care to children with DDs. The theory was established by Everett M. Rogers and is
commonly used for the implementation and evaluation of evidence-based practice into the
current clinical setting (Rogers, 2003). The first four stages include knowledge, persuasion,
decision, and implementation, which will be discussed during the implementation phase (Rogers,
2003). The organization that this intervention will be theoretically implemented within is the
Square & Compass Childrens Clinic (S&C), which delivers comprehensive, multi-disciplinary
medical care to children with complex medical conditions and their families (Square & Compass
Childrens Clinic, 2008).
Knowledge. Knowledge, the first stage of the innovation-decision process, involves the initial
exposure of the innovations existence to the facility (Rogers, 2003). The knowledge stage begins
when the S&C clinic is exposed to the COPE tool and gains understanding of the innovations
general function and purpose (Rogers, 2003). The S&C clinic would designate two registered
nurse (RN) case managers to be the educators who would facilitate education of the COPE tool.
The RN educators would need to recognize a general trend in increasing stress among parents of
children diagnosed with a DD within their community. The educators may then attribute the
increase in parental stress within this population to a lack of knowledge, for both health care
providers and parents, of the specific characteristics of the DD in relationship to the childs
unique characteristics and needs.
46
The educators working for S&C would then need to recognize this lack of knowledge as
contributory to a lack of continuity of care, family-centered care, and parental empowerment, all
of which are associated with decreased parental stress within this population. Furthermore, the
educators would need to distinguish the importance of implementing an education-based
resource to both the health care providers and the parents/family. The RN educators could obtain
knowledge of the lack of continuity of care, family-centered care, and parental empowerment
through accredited pediatric journals. These journals may illustrate this overall deficiency in the
health care setting and its association to increased parental stress among parents of children with
DDs. RN educators would offer a workshop to S&C staff and other stake holders to introduce
this issue that is illustrated by the literature and to introduce the COPE tool as an intervention to
address this issue. Additionally, how-to knowledge consisting of information necessary to
properly use the COPE tool and its advantages for decreasing parental stress could be obtained
through an educational video created by a COPE tool expert who has previously implemented
this tool in a health care setting. Providing the how-to information of the COPE tool through a
video provides ease of accessibility for physicians, other nurses, and families to become familiar
with the COPE tool. This increases the likelihood that further details of the COPE tool
intervention would be obtained, which is a crucial aspect of initiating the persuasion stage
(Rogers, 2003).
Providing this information of the COPE tool will facilitate the sense of a need, which is
defined as a state of dissatisfaction that occurs when an individuals desires outweigh their
realities (Rogers, 2003). According to Rogers (2003), an individual or organization often
develops a need once knowledge of existence of an innovation occurs. Thus, knowledge of the
COPE tool and its relevance to the individual needs of this population creates a need for the S&C
47
clinic that generates motivation to learn more about it and, ultimately, adopt it (Rogers, 2003).
Once S&C perceives that there is a need to intervene on this particular health care problem, the
implementation process can move forward to the persuasion stage of implementation (Rogers,
2003).
Persuasion. The persuasion stage of the innovation-decision process occurs when the S&C
educators develop either a positive or a negative attitude toward the COPE tool intervention to
decrease stress for parents of children with DDs (Rogers, 2003). Development of a positive
attitude toward the COPE tool would indicate that S&C developed a sense that the population of
parents of children with a DD are in need of education, empowerment, and ultimately stress
reduction. This understanding of a need would likely be established during the knowledge stage
in which the RN educators provided a workshop introducing the literature that supports a need
for an intervention such as the COPE tool. Through acknowledgement of this need, development
of a positive attitude toward the COPE tool would likely occur, which would predispose S&C
stakeholders to take the knowledge they obtained about the COPE tool and put it into action
(Rogers, 2003). The S&C educators may confirm that there is an overall lack of family-centered
care and/or parental empowerment and an increase in parental stress. This conclusion may
encourage them to believe there is a need within their facility to implement an evidence-based
intervention for parents of children diagnosed with a DD to improve quality of care and decrease
parental stress.
The two S&C RN educators would have the ability to communicate the need for
education about parental stress and the advantages of the COPE tool to decrease that stress to the
stakeholders of the facility. A stakeholder is defined as a person or group that has conferred
interest in a clinical decision and the evidence that supports that decision (U. S. Department of
48
Health & Human Services, 2014). The stakeholders that would be involved in the persuasion
stage of the implementation process of the COPE tool would likely include physicians, other
nurses, and the parents of the children with DDs. The RN educators would initiate a facility-wide
discussion about the importance of family-centered care, information-sharing, and parental
empowerment for decreasing stress among parents of children with DDs. This could be initiated
through access to the online COPE tool video, which could be viewed by physicians, nurses, and
families at their own convenience. This educational awareness would play an essential role in
persuading all members of the S&C facility, including clients, to recognize the significance of
utilizing the COPE tool within their clinical setting. The RN educators must ultimately impart the
belief to all stakeholders that the intervention would positively affect their clients (Rogers, 2003).
Furthermore, the uncertainty of the interventions compatibility, relevance, and advantages
would need to be negated with evidence supporting the COPE tools ability to reduce stress
among the parents (Rogers, 2003).
Decision. The decision stage of the innovation-decision process occurs when an individual or
group engages in behaviors or activities that lead to either adoption or rejection of the innovation
(Rogers, 2003). The S&C administration would determine that implementing the COPE tool as
an intervention to decrease stress for parents of children with DDs would be both feasible for the
facility and beneficial to the clients. The economic and time constraints of training educators
about the evidence-based information supporting the COPE tool would have to be considered
during this stage. This intervention would need to be portrayed as not conflicting to the current
practice carried out in S&C, but as conducive to it (Rogers, 2013). As this specific intervention
has yet to be performed within this population or this setting, S&C would have the freedom to
determine the most feasible way to implement the COPE tool so that it may not interfere with
49
and be integrated into current practice. This could be attained through holding a workshop
between staff members and the RN educators to allow all facility stakeholders to provide
suggestions for implementing the COPE tool prior to initiating the implementation process. By
allowing S&C the freedom to customize the implementation process, the intervention is more
likely to fit the individual needs of the facility and their clients, which decreases the risk of
rejection or discontinuance during trial and adoption (Rogers, 2003).
Implementation. The implementation stage of the innovation-decision process occurs once the
S&C educators and stakeholders put the COPE tool intervention to use (Rogers, 2003). This
involves an evident change in behavior, as the physicians and RN case managers begin to use the
COPE tool for clients (Rogers, 2003). While training workshops would occur prior to
implementing the COPE tool, the RN case managers would continue to incorporate training
sessions about the intervention and how best to present the information to the parents and track
their progress through the various stages of the intervention. The two RN case managers would
be designated as the evidence based practice (EBP) champions to which stakeholders and parents
could use as a resource to troubleshoot any possible issues during progression through the COPE
tool intervention. These EBP champions would also act as mediators between the families and
health care providers by relaying any concerns, feedback, or suggestions the families have about
the COPE tool to the providers.
The parents would be asked to reflect on child behavior patterns, unique characteristics of the
child, and/or any concerns with the childs well-being in a journal during progression through the
COPE tool intervention. The parents would also be asked to journal their own emotions and
thoughts throughout their day, especially regarding any child behavior patterns of concern. This
provides opportunity for the parents to reflect on their level of stress throughout the day, which
50
they may identify to be directly related to child behavior problems. Journaling the childs
behavior patterns, including particularly undesirable behaviors, allows opportunity for the
parents to retrace the steps or activities that preceded the troublesome behaviors, which may
reveal triggers to child behavior problems. By isolating triggers for child behavior problems
specific to the child, the parent may then develop successful coping strategies for their child,
which may decrease child behavior problems in the future, thus decrease overall parental stress
(Melnyk, 1994; Melnyk, et al., 1997; Melnyk, et al., 2004).
During outpatient visits, the EBP champions would be available to the parents prior to their
appointment time to discuss potential child behavior problems and assist the parents in
determining possible causes for the behavior such as the environment (i.e. noise, presence of
other children, foreign environment, etc.) or level of exhaustion of the child and/or parent(s)
during that time. This would allow adequate time for the parents to reflect on any concerns with
the EBP champions, while avoiding interference with S&C routine visits during the
implementation process. Focus groups for the parents would be held during the implementation
process to allow sharing of experiences between parents of children with various DDs to discuss
possible similarities or differences in child behavior patterns. This would allow parents to better
distinguish child behavior patterns related to the particular DD versus child behavior patterns
specific to the child, which would help solidify knowledge of the childs unique characteristics,
thus provide better anticipation of possible behavior problems (Melnyk, 1994; Melnyk, et al.,
1997; Melnyk, et al., 2004).
Throughout the implementation process, physicians and nurse case managers will chart on
each familys progression through the COPE tool either as a progress note or under the patients
care plan within the electronic health record system. At routine visits to S&C, the physicians and
51
nurse case managers will chart parental concerns, identified triggers of child behavior problems,
potential coping strategies for the child behavior problems that will or have been used, and
whether tried coping strategies have worsened or alleviated child behavior problems. This will
provide a basis for tracking child and parental progress through the COPE tool intervention and
for identifying solutions to child behavior problems that may decrease parental stress and
anxiety. Finally, during the implementation process, physicians and nurse case managers will
hold focus groups to discuss ease of implementation and troubleshoot any issues. This allows
room for modification of the COPE tool intervention so that it may fit more appropriately to the
S&C facility (Rogers, 2003). Flexibility during the process of implementation of an innovation
may reduce mistakes and leads to a higher degree of sustainability of the innovation, thus
decreasing the likelihood of discontinuance after adoption (Rogers, 2003).
Summary
The implementation process for the best practice recommendations for decreasing stress
for parents of children with DDs was developed from the Diffusion of Innovations Theory. The
Diffusion of Innovations is a theory that provides steps for effective implementation of evidencebased research into clinical practice (Rogers, 2003). The initial steps that have been illustrated
include knowledge, persuasion, decision, and implementation (Rogers, 2003). The following
section of this chapter will detail the final step of the Diffusion of Innovations process, which
involves the evaluation of implementing the COPE tool intervention in the S&C setting.
Evaluation
Evaluating an evidence-based intervention is the final portion that will be discussed
regarding theoretically implementing this best practice thesis into a clinical setting. The
52
confirmation stage is the final stage of the innovation-decision process to which the effectiveness
of a particular intervention is determined (Rogers, 2003).
Confirmation
During the confirmation stage, the RN educators and S&C stakeholders evaluate the
efficacy of implementing the COPE tool intervention and seek reinforcement for the decision to
implement the intervention, which may or may not lead to reversal of that decision (Rogers,
2003). Two aspects of the implementation process would be evaluated: 1) whether S&C
stakeholders and parents were participating in and progressing through the COPE tool
intervention and 2) whether the COPE tool was successful in decreasing stress for parents of
children with DDs. In order to evaluate the first piece of the implementation process, the two
EBP champions would perform a chart audit of all of the S&C caregivers participating in the
COPE tool intervention. The chart audit would provide a means for confirming that parents and
providers are participating in and progressing through the COPE tool intervention. Additionally,
the chart audit would allow the EBP champions to determine if the health care providers are
recognizing a demand for stress reduction for the parents. Recognition of this demand would
confirm the knowledge and persuasion stages of the implementation process by creating
awareness of the value of the COPE tool intervention (Rogers, 2003). Furthermore,
acknowledgement of the value of the best practice intervention would ultimately confirm their
decision to implement the COPE tool (Rogers, 2003).
The second piece of evaluating the best practice intervention involves determining the
effectiveness of the COPE tool. This would be accomplished through a collection of the parents
journals, which provide qualitative data critical to the evaluation process. The journals would
offer reflective information regarding the parents experiences and emotions related to their
53
childs behaviors, as well as a basis for parents thoughts toward the COPE tool intervention. In
addition to the qualitative data collection, the parents would fill out a questionnaire concerning
the effectiveness of the COPE tool intervention in decreasing parental stress. The parents would
also be given the opportunity to provide details of any information they would have desired to be
omitted or included in the educational information provided by the COPE tool. This would
ultimately assist the EBP champions and S&C stakeholders in determining what exactly was
provided by the COPE tool and what, if anything, could be done better (Rogers, 2003).
The intended outcome of implementing the COPE tool intervention would be to provide a
basis for parental empowerment and stress reduction through enhanced knowledge of various
DDs, their associated behavioral tendencies, and the relationship of those tendencies to the
unique behaviors of the individual children. The confirmation stage of the implementation
process would verify that parents of children with DDs have the opportunity to better recognize
their childs behaviors, behavior problems, and possible triggers to those behaviors. This
empowers the parents to better predict triggers to child behavior problems through a
collaborative process with RNs and providers, thus providing a basis for the formation of
successful coping strategies that may reduce the severity of child behavior problems and
ultimately reduce parental stress (Wakimizu et al., 2010). The parents would be expected to
report that the COPE tool created awareness of child behaviors and behavior problems, which
provided a foundation for forming coping strategies that assisted in overall stress reduction. The
parents would also be expected to report increased information sharing between themselves and
providers, a greater sense of partnership with the health care providers, and an emphasis on
family-centered care (Kuhlthau et al., 2011).
54
Strengths/Limitations and Recommendations for Future Research

The strength of this best practice thesis is that it included a comprehensive review of
literature that indicated a need for an intervention to address the high rates of stress among
parents of children with DDs. Additionally, the recommendations proposed by this best practice
thesis project are generalizable to a wide range of parents of children with DDs as much of the
research included children of various types of DDs; therefore, it is not limited to parents rearing
children with a single or particular type of DD. Finally, the recommendations proposed by this
best practice thesis are supported by the reviewed literature as it provides countless statements of
an essential need for consistent child-rearing information, family-centered care, and continuity of
care, all of which are promoted by the COPE tool intervention (Melnyk, 1994; Melnyk, et al.,
1997; Melnyk, et al., 2004).
However, this thesis project is limited in that much of the literature obtained regarding
parents of children with DDs lacked specific interventions geared toward parental stress
reduction. As a result, the author suggested using a modified COPE tool intervention, which was
originally tested as a stress reduction intervention for parents of children unexpectedly admitted
to a PICU. Although the COPE tool has been used for parents experiencing stress, it has yet to be
performed for parents experiencing stress specific to rearing a child with a DD. Thus, this
particular thesis project is limited in that it does not provide recommendations that are supported
by research studies conducted in this specific population.
Recommendations for future research include conducting studies that determine the
effectiveness of the COPE tool intervention and other stress-reduction methods for parents of
children with DDs. This could help solidify the successfulness of the COPE tool intervention in
addressing the needs of parents of children with DDs and may determine other areas of need
55
regarding stress reduction, and improved overall well-being. Furthermore, the author
recommends that future research on parents of children with DDs explore other possible factors
associated with increased parental stress such as lack of sleep or presence of other children,
which may significantly influence the level of parental stress.
Summary
The purpose of this thesis was to develop best practice recommendations for decreasing
stress for parents of children with DDs. Current research indicated high rates of stress and a
critical need for increased family-centered care, continuity of care, and parental empowerment.
An extensive review of literature supported the need for the best practice recommendation of
family-centered care to which the proposed COPE tool intervention would be implemented
within. The evaluation process during implementation of the COPE tool intervention would
allow for parents to provide feedback about the information they received and whether or not the
COPE tool had an influence on decreasing parental stress. Overall, the implementation of the
best practice recommendation of family-centered care provided through the COPE tool
intervention will serve to empower parents to better rear children with DDs, ultimately leading to
improved physical and psychological well-being for both the parents and their children.
56
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Samuel, P., Rillotta, F., & Brown, I. (2012). Review: The development of family quality of life
59
concepts and measures. Journal of Intellectual Disability Research, 56(1), 1-16.

Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/22151130
Shewchuk, R., Richards, J., & Elliott, T. (1998). Dynamic processes in health outcomes among
caregivers of patients with spinal cord injuries. American Psychological
Association, 17(2), 125-129. Retrieved from http://psycnet.apa.org/journals/hea/17/2/125/
Spielberger, C. D., Gorsuch, R. L., Lushene, R., Vagg, P. R., & Jacobs, G. A. (1983). Manual for
the State-Trait Anxiety Inventory. Palo Alto, CA: Consulting Psychologists Press.
Square & Compass Childrens Clinic. (2008). Retrieved from
http://www.squareandcompassclinic.com/about%20us/about.htm
U. S. Department of Health & Human Services, Agency for Healthcare Research and Quality.
(2014). The effective health care program stakeholder guide: Chapter 3: Getting
involved in the research process. Retrieved from
http://www.ahrq.gov/research/findings/evidence-basedreports/stakeholderguide/chapter3.html
Wakimizu , R., Fujioka, H., & Yoneyama, A. (2010). Research article: Empowerment process
for families rearing children with developmental disorders in japan. Nursing and Health
Sciences, 12(3), 322-328. doi: 10.1111/j.1442-2018.2010.00533.x
60
Appendix A
Evidence-Based Recommendations for Parents of Children with Developmental Disabilities
Author (s)
and date
Kobayashi
et al., 2012
Questions,
variables,
objectives,
hypotheses
Professional
workers,
Distressed
parents, mental
health, parents
of children
with ID and/or
developmental
disabilities
Design, sample,
setting
Quantitative
Descriptive
Questionnaire and
statistical analysis
Response rate=
41.7%
460 facilities with
respondents
remained
anonymous
Average age=
44.7 (ID group)
53.0 (PDD group)
48.3 (PIMD
group)
55.3 (Physical
disability group)
Findings
1. Difficulty communicating
with the clients parents,
especially the mothers
2. Mental health,
socioeconomic status, and
level of care needed for
the child effect
communication difficulty
3. Parents showed signs of
depression with highest
occurrence in PDD group
4. Maltreatment experienced
by children of mentally
disturbed parents
5. Lack of support or
participation in support
programs, existence of a
prior medical condition in
the parent, and severity of
childs disability effect
parents mental health
Notes
Chi-square and
SPSS
Limitations:
Unconfirmed
data
Need for further
mental
diagnosis of
parents
More difficulty
communicating
with mothers
may be due to
service
providers
usually
contacting the
mother more
than the father
Japan
Kobayashi, T., Inagaki, M., & Kaga, M. (2012). Professional caregiver's view on mental health in parents of
children with developmental disabilities: A nationwide study of institutions and consultation centers
in japan. ISRN Pediatrics, doi: 10.5402/2012/121898
Author (s)
Questions,
Design, sample,
Findings
and date
Variables,
setting
objectives,
hypotheses
Gallagher et Sleep quality
Correlational
1. Poor sleep quality
2. Parental stress predicts
al., 2010
and stress,
Notes
Pittsburg Sleep
Quality Index,

parents of
children with
DDs, parents
of TDC,
parental stress,
child problem
behaviors,
social support,
Questionnaire
poor sleep quality
Response rate =
55%
67 parents of
children with
DDs (recruited
via respective care
facility and
support groups)
42 parents of TDC
(recruited via local
schools and local
newspaper)
55% Autism
33% Down
syndrome
12% other
syndromes
8 couples in DD
group
5 couples in TDC
group
61
Registrar
Generals social
class
classification,
Resources and
Stress Freidrich
Short form,
Strengths and
Difficulties
Questionnaire,
Support
Functions Scale,
Chi-square and
univariate
ANOVA, and
ANCOVA
Limitations:
Poor sleep may
be transitory,
possibility of
reverse
causation, more
women than
men, lack of
information on
non-participant
parents
USA
Gallagher, S., Phillips, A. C., & Carroll, D. (2010). Parental stress is associated with poor sleep quality in
parents caring for children with developmental disabilities .Journal of Paediatric Psychology, 35,
728-737. Retrieved from
http://eprints.bham.ac.uk/1205/1/Phillips_2010_Journal_of_Pediatric_Psychology.pdf
Author (s)
and date
Eisenhower
et al., 2009
Questions,
Variables,
objectives,
hypotheses
Maternal wellbeing, Physical
Design, sample,
setting
Correlational
Findings
1. Child behavior problems,

especially when
Notes
Baron and
Kenny (1986),

health,
Delayed
development,
Behavior
problems
Raising a child
with delayed
or high
behavior
problems leads
to a decline in
maternal
health
Questionnaire
218 families with
a 3-year-old child,
126 boys and 92
girls
Delayed
development (n=
91) recruited
through
community
agencies that
provide diagnostic
and intervention
services for
developmental
disabilities
associated with
developmental delay,
effect maternal health
2. Mothers with both clinical
signs of depression and
child behavior problems
had the poorest physical
health
3. Association of child
behavior problems and
maternal physical health
was moderated by
maternal stress and
mediated by maternal
depressive symptoms
62
Bayley Scales of
Infant
Development-II,
Child Behavior
Checklist,
Center for
Epidemiologic
Studies
Depression
Scale, Family
Impact
Questionnaire,
ANCOVA
Limitations:
Relied on selfreport measure
of health,
possible
Typical
maternal recall
development (n=
bias, lack of in127) recruited
depth subjective
through preschool
and objective
and daycare
reports,
programs
biological
pathways may
USA
account for
child-related
stress effect on
maternal health
Eisenhower, A. S., Baker, B. L., & Blacher, J. (2009). Childrens delayed development and behavior
problems: Impact on mothers perceived physical health across early childhood. Social Science and
Medicine, 68(1), 89-99. doi: 10.1016/j.socscimed.2008.09.033
Author (s)
and date
Questions,
Variables,
objectives,
hypotheses
Design, sample,
setting
Findings
Notes

Hobson and
Noyes,
2011
Father nursing
care for
disabled
children,
fathers
experience,
Exploratory
Phenomenologic
Face-to-face
Interviews
8 fathers providing
significant amount
of childs complex
care (recruited via
CCN team)
Biological fathers
(n=7); Stepfather
(n= 1); Full time
carers (n= 4); Full
time employed
(n=4)
7 fathers had other
children; 6
families had other
children living at
home; 2 families
had children who
had left home
Child Health
Need:
Gastrostomy fed
(7); Home oxygen
(6); Overnight
ventilation (1);
Severe epilepsy
(2); Complex
medication regime
(8)
Child age: 16mo16yr
5 children
attending special
1. Shift from breadwinner

to main care provider
2. Difficult to distinguish
parenting and technical
caring roles
3. Additional support needed
to help work through
anxieties of providing
intimate personal care for
the child
4. Experienced rewarding
aspects of providing care
5. Caring was stressful,
which fathers strived to
overcome
6. Limited support due to
childs complex health
needs
7. Experience guilt at
receiving support
63
Limitations:
Fathers are
critically underrepresented in
studies on
children and
complex
disability,
recruitment
limited
64
school; 2 children
attending
mainstream
school; 1 child
attending
preschool
4 mothers fulltime carers
4 mothers full- or
part-time jobs
UK
Hobson, L., & Noyes, J. (2011). Fatherhood and children with complex healthcare needs:
qualitative study of fathering, caring and parenting. BMC Nursing, Retrieved from
http://www.biomedcentral.com/content/pdf/1472-6955-10-5.pdf
Author (s)
and date
Wakimizu
et al., 2010
Questions,
Variables,
objectives,
hypotheses
DDs,
empowerment
process,
mothers
Design, sample,
setting
Modified
Grounded Theory
Narrative
interviews
20 mothers from
single
rehabilitation
center for children
with DDs in
Tokyo
Mean age of
mothers = 40.4
years
Children: age 8-19
yrs, diagnosed
with DD, enrolled
in a special needs
Findings
1. Mothers needed child

rearing information from
the time the child was 2-3
yrs old
2. Confusion over caring for
the child, confrontation
with the child with the
disorder, expectations of a
valuable life for the child
3. Families were able to
collaborate with
professionals by
approaching the local
administration.
4. Families were able to shift
their stance on childrearing depending on their
childs growth.
5. Promotion of the
empowerment process
requires crossjurisdictional/cross-
Notes
M-GTA
Limitations:
recruitment
method
limited, limited
information on
the
empowerment
process is
available as
this is the first
study in Japan
that focused
on the
empowerment
process

class
65
occupational collaboration
among local care teams.
Mean age of
children= 12.4 yrs
Mean duration
between diagnosis
and interview= 6.5
yrs
Japan
Wakimizu , R., Fujioka, H., & Yoneyama, A. (2010). Research article: Empowerment process
for families rearing children with developmental disorders in japan. Nursing and Health
Sciences, 12(3), 322-328. doi: 10.1111/j.1442-2018.2010.00533.x
Author (s)
and date
King et al.,
1999
Questions,
Variables,
objectives,
hypotheses
Hypothesis:
Better
demographic
factors, lower
severity of the
childs
disability,
more familycentered
caregiving,
and better
family
functioning
and social
support would
be related to
fewer parental
psychosocial
life stressors.
Design, sample,
setting
Quantitative study
164 parents of
children primarily
with cerebral
palsy, spina bifida,
or hydrocephalus
Six publicly
funded childrens
rehabilitation
centers in Ontario,
Canada.
Findings
1. A more family-centered
approach to caregiving
was a main predictor of
parents well-being with
child behavior problems
and protective
environmental factors as
the most important
predictors of well-being
2. Caregiving services are
most valuable when
delivered in a familycentered manner that
addresses availability of
social support, family
functioning, and child
behavior problems
Notes
WeeFIM,
Measure of
Process of Care
questionnaire,
General
Functioning
scale of the
Family
Assessment
Device, Social
Support
Questionnaire-6,
Impact on
Family Scale,
Survey
Diagnostic
Instrument,
Coping Health
Inventory for
Parents, Client
Satisfaction
Questionnaire,
Global Severity
66
Index from the
Symptom
Checlist-90Revised, and
Centre for
Epidemiological
Studies
Depression
Scale
Limitations:
Possibility of
reciprocal
causation (i.e.
parental
depression may
contribute to
higher incidence
of child behavior
problems).
King, G., King, S., Rosenbauum, P., & Goffin, R. (1999). Family-centered caregiving and wellbeing of parents of children with disabilities: linking process with outcome. Journal of Pediatric
Psychology, 24, 41-53.
Author (s)
and date
Dunst &
Trivette,
2009
Questions,
Variables,
objectives,
hypotheses
Hypotheses:
Familycentered care
would have
direct effects on
parental selfefficacy beliefs
and
psychological
health and
indirect effects
on parent
psychological
health mediated
Design, sample,
setting
Meta-analysis
Over 2900
parents and other
caregivers in 15
studies
Findings
Family-centered care had indirect

effects on parent and child
psychological health, which was
mediated by self-efficacy.
Notes
Structural
equation
modeling,
pooled
correlation
matrix,
confirmatory
factor analysis
Limitations:
Use of selfreport scales,
which may have
influenced the

by self-efficacy
beliefs.
Self-efficacy
would have a
direct effect on
parent and child
psychological
well-being, but
an indirect
effect on child
health mediated
by parent
psychological
well-being.
Psychological
well-being of
the parent was
expected to
have a direct
effect on child
health based on
the parent and
child affective
behavior
relationship.
67
data since the
respondent
providing the
measure of the
different
variables was the
same.
Studies used in
the metaanalysis were
conducted by the
authors
themselves. The
studies included
families from
mainly two
states in the
United States,
which weaken
the
generalizability
of the findings.
Higher
complexity of
the childs
healthcare
needs was
expected to
negatively
affect parent
and child
psychological
health.
Dunst, C. J., & Trivette, C. M. (2009). Meta-analytic structural equation modeling of the influences of
family-centered care on parent and child psychological health. International Journal of
Pediatrics, 2009, 1-9.

Author (s)
and date
Miller et al.,
2009
Questions,
Variables,
objectives,
hypotheses
Questions:
To what extent
can the
constructs of
relational,
informational,
and
management
continuity be
distinguished in
the narratives of
parents?
What aspects of
services are
particularly
significant to
these parents
perception of
care as
continuous and
connected?
Design, sample,
setting
Findings
Qualitative study
1. Existence of relational,
informational, and
management continuity
among the parents
narratives.
Parents (26
mothers and 2
fathers) of 47
elementary
school-age
children with
spina bifida (n =
9), Down
syndrome (n =
11), attentiondeficit/hyperactiv
ity disorder
(ADHD, n = 11),
Duchenne
muscular
dystrophy (DMD,
n = 9), and cystic
fibrosis (n = 7).
2. Strong importance on a
thorough knowledge of
the child on part of the
service providers.
3. Need for continuity of
personal relationships and
communication among
the entire spectrum of
service providers to
provide continuity of care.
Participants
contacted through
specialized
hospital clinics,
physicians
offices, and
patient support
and advocacy
programs.
68
Notes
ATLAS.ti,
comprehensive
coding scheme,
Reid and
Haggerty
continuity
model.
Limitations:
The recruitment
strategy may
have oversampled families
receiving
hospital-based
care; therefore, it
is possible that
other
perceptions of
continuity of
services was
underrepresented
Miller, A. R., Condin, C. J., McKellin, W. H., Shaw, N., Klassen, A. F., & Sheps, S. (2009). Continuity of
care for children with complex chronic health conditions: parents' perspectives. BMC Health
Services Research, 242. Retrieved July 24, 2014, from http://www.biomedcentral.com/14726963/9/242/
Author (s)
Questions,
Design, sample,
Findings
Notes

and date
Fereday et
al., 2010
Variables,
objectives,
hypotheses
Advocacy,
disability,
generic health
professional,
partnership
69
setting
Qualitative
exploratory study
27 parents/carers
(88 percent
female), ages 31
to 50 years-old;
most children
under the age of
10
1. Parents ultimately wanted

partnership from GHPs
(i.e. GHPs coordinating
services for their children
and communicating with
other specialist to provide
continuity of care.
2. Lack of continuity of care
among various health
services for the child was
related to poor emotional
well-being of the parent.
Individual
interviews
audiotaped;
tapes transcribed
verbatim and
then coded using
thematic
analysis; Coding
assisted by the
QSR NVivo 7
Purposive
Limitations:
sampling from 34
Minimal amount
disability and
of demographic
3.
A
need
for
more
familyparent/carer
information was
centered
care
among
organizations to
collected.
GHPs as many GHPs
ensure the use of
Future research
proposed
treatments
that
participants who
exploring the
negatively
affected
the
had direct
impact of
ability of the family to
experience caring
various
function
as
a
whole.
for a child with a
demographics
disability and
such as ethnicity
interacting with
and disability of
generic health
the child may
professionals
strengthen the
(GHPs).
findings.
Fereday, J., Oster, C., & Darbyshire, P. (2010). Partnership in practice: what parents of a disabled child
want from a generic health professional in Australia. Health & Social Care in the Community, 18,
624-632.
Author (s)
Questions,
and date
Variables,
objectives,
hypotheses
Kuhlthau et Children with
al., 2011
special health
care needs;
family-centered
care
Design, sample,
setting
Systematic
Review
24 articles: eight
cross-sectional
Findings
Family centered care was found

to be positively associated with:
improvements in efficient use of
services, health status for both the
parents and children, satisfaction
Notes
Limitations:
Possibility of
publication bias
70
studies from the

with services and care, access to
Examination of
Objective: to
National Survey
specialized resources and
studies only in
determine if
of Children With information, communication with the United States
family-provider Special Health
professional care providers,
that were
partnership
Care Needs and
patient-provider partnership, and published in
constituted
seven randomized family functioning for children
English, which
family-centered controlled trials.
with special healthcare needs.
weakens the
care
Of the 24 articles,
generalizability
13 examined
of the findings
populations of
children with
special healthcare
needs (CSHCN),
six examined
children with
asthma, and the
remaining
examined
children with
other specific
conditions.
Kuhlthau, K. A., Bloom, S., Cleave, J. V., Knapp, A. A., Romm, D., Klatka, K., et al. (2011). Evidence for
Family-Centered Care for Children With Special Health Care Needs: A Systematic
Review. Academic Pediatrics, 11, 136-143.e8.
Author (s)
Questions,
Design, sample ,
Findings
and date
Variables,
setting
objectives,
hypotheses
Resch et al., Questions:
Qualitative study Parents wellbeing was
2010
influenced by four major themes:
What are the
40 parents (four
lack of access to important
principle
male and 36
information and support services,
stressors and
female) who were financial barriers to acquiring
challenges for
primary care
support services (generally health
parents of
providers to
care services), lack of inclusion
children with
children with
in school and community
disabilities?
physical,
activities due to adverse reactions
developmental, or from the community, and lack of
What supports
intellectual
support for the entire family.
and services do disabilities
parents identify
Notes
QSR NVivo 7,
multilayered
coding process
Limitations:
The studys
sample was
comprised of
nearly all
women, lacked
participants from
multiple states,
and lacked a

as being needed
to deal with the
stress and
challenged of
their
responsibilities?
Participants were
of multiple
ethnicities,
education levels,
income levels,
and community
sizes, with
children of
various primary
disabilities such
as Autism, Down
syndrome, and
Muscular
Dystrophy who
participated in a
wide range of
classroom
settings such as
home school,
regular
classroom, or a
school for special
needs students
71
representative
sample of Asian
Americans and
Native
Americans,
which weakens
the
generalizability
of the findings.
The studys use
of a single
method for
collection of
data possibly
limits the study
to capturing only
a piece of the
actual parent
experience.
Seven
communities
across a
southwestern
state in the
United States
Resch, J. A., Mireles, G., Benz, M. R., Grenwelge, C., Peterson, R., & Zhang, D. (2010). Giving parents a
voice: A qualitative study of the challenges experienced by parents of children with
disabilities.. Rehabilitation Psychology, 55, 139-150. Retrieved July 24, 2014, from
http://psycnet.apa.org/journals/rep/55/2/139/
Author (s)
Questions,
Design, sample,
and date
Variables,
setting
objectives,
hypotheses
Findings
Notes

Shewchuck
et al., 1998
Objective:
Identify and
describe
systematic
patterns in the
development of
depression,
anxiety, and
physical
symptoms
within family
caregivers of
persons with
spinal cord
injury (SCI)
and examine
the processes
involved in
their health and
adjustment to
caregiving
responsibilities.
Quantitative
descriptive study
Eight men (ages
26 to 55 years)
and 54 women
(ages 21 to 69)
providing care to
a family member
with a spinal cord
injury (SCI)
Patients receiving
care from
participants were
primarily male
(87 percent) and
Caucasian (76
percent; the
remainder
African
American).
Types of spinal
cord injury
included
incomplete
lesions with
paraplegia
(bilateral
paralysis of lower
extremities) (13
percent),
complete lesions
with paraplegia
(35 percent),
incomplete
lesions with
tetraplegia
(muscle paralysis
of all four limbs)
(31 percent), and
complete lesions
1. Physical symptoms and

anxiety were highly
interdependent.
2. Level of anxiety detected
by the STAI was a major
predictor of initial levels
of change in physical
symptoms of caregivers.
3. Changes in physical
symptoms predicted
initial levels of depressive
behavior over time.
72
Hierarchical
linear modeling
Limitations:
The study failed
to account for
personality traits
or environmental
and cultural
variables that
could have a
significant effect
on the coping
ability and
subsequent
stress or anxiety
level of each
caregiver,
decreasing the
validity of the
findings.
73
with tetraplegia
(21 percent).
Shewchuk, R., Richards, J., & Elliott, T. (1998). Dynamic processes in health outcomes among caregiver of
patients with spinal cord injuries. American Psychological Association, 17(2), 125-129. Retrieved
from http://psycnet.apa.org/journals/hea/17/2/125/
Author (s)
Questions,
Design, sample,
and date
Variables,
setting
objectives,
hypotheses
Melnyk,
Objective:
Randomized
1.
1994
controlled trial
Examine the
effects of
108 mothers
providing child (ages 21-44
behavior
years) with
information and children (ages 2
parental role
to 5 years old).
information
Most mothers
(both separately were Caucasian
2.
and in
(72.2 percent)
combination)
Distribution
on the coping
between male and
ability mothers female children
with children
was equal. Three
who were
major reasons for
unexpectedly
hospitalization
3.
hospitalized in
included
an intensive
respiratory
care unit for
conditions,
more than 48
gastrointestinal
hours.
illnesses, and
orthopedic issues
with 88 percent
of children
having no prior
Findings
Mothers who received

child behavior
information reported
significantly higher
knowledge of their childs
behaviors during and after
hospitalization than
mothers who did not
receive this information
parental role information
reported greater
knowledge than those
who did not receive this
information.
either type of information
reported less anxiety and
greater participation in
their childs care during
hospitalization than those
who did not receive the
information.
Notes
IPP, IPS, PBQ,

Parental Support
during the
Intrusive
Procedure, and
Parental Belief
Scale
Limitations:
The sample
consisted
primarily of
Caucasians.
Replication of
the study with
different ethnic
groups may
strengthen the
validity and
generalizability
of the findings.

hospitalization.
Pediatric units of
two acute care
institutions.
74
4. Mothers who received

combined information
provided significantly
more support for their
child during invasive
procedures than mothers
who only received
parental role information.
5. Children of mothers who

received the child
behavioral information
displayed significantly
less negative behavioral
change than children of
mothers who did not
receive this information.
Melnyk, B. M., (1994). Coping with unplanned childhood hospitalization: Effects of informational
interventions on mothers and children. Nursing Research 43(1), 50-55.
Author (s)
and date
Melnyk et
al., 1997
Questions,
Variables,
objectives,
hypotheses
Objective:
Determine the
effects of the
Creating
Opportunities
for Parent
Empowerment
(COPE)
intervention on
the coping
outcomes of
critically ill
children and
their mothers.
Design, sample,
setting
Randomized
controlled trial
A convenience
sample of 30
mothers (16
experimental and
14 control group)
of children ages
one to six yearsold admitted to a
PICU.
23 Caucasian,
five African
American, and
two Hispanic
mothers, ages 18
to 43 years-old.
Sample of
Findings
1. Mothers in the COPE

group had a clear
understanding of their
childs likely behavioral
and emotional responses
as they recovered from
critical illness, resulting in
significantly less parental
stress related to their
childs behaviors and
emotions compared to
mothers in the comparison
group.
2. Mothers in the COPE
program supported their
children significantly
more and were rated by
PICU nurses (blind to the
Notes
PTSD, IPS,
VAS-PC, VASEC, POMS,
PSS:PICU, PSIP, PSI- C, DSMIV, PBQ, PRQ,
IPP
Limitations:
Use of a small
sample size
resulted in large
variances and a
lack of statistical
significance.
The sample was
limited to
English speakers

patients included
14 males and 16
females with 80
percent being
unplanned
admissions.
Two major
reasons for
hospitalization
included
accidental trauma
(n= 11) and
respiratory
conditions (n= 9)
with an average
length of stay of
82.8 hours.
Criteria for
participation:
No prior PICU
admissions,
expected
survival, and no
suspected or
diagnosed
physical or sexual
abuse
study) as more involved

in their childs care than
group.
75
only, which
decreases the
generalizability
of the findings.
3. Greater involvement in
and support during
invasive procedures of
mothers in the
experimental group
resulted in more effective
coping ability of their
children as compared to
children of mothers in the
comparison group.
4. Following hospitalization,
mothers in the COPE
group reported less
parental role change than
group.
PICU in Upstate
New York
Melnyk, B. M., Alpert-Gillis, L. J., Hensel, P. B., Cable-Billing, R. C., & Rubenstein, J. (1997). Helping
mothers cope with a critically ill child: A pilot test of the COPE intervention. Research in Nursing
and Health, 20, 3-14.
Author (s)
Questions,
and date
Variables,
objectives,
hypotheses
Design, sample,
setting
Findings
Notes

Melnyk et
al., 2004
Objective:
Evaluate the
effects of the
COPE program,
as a
continuation of
the previous
study (Melnyk
et al., 1997).
Randomized
Control Trial
163 mothers
(ages 18 to 52
years-old) and
their children
(ages two to 7
years-old) who
were admitted to
the PICU.
Mother
characteristics:
Caucasian (71.2
percent), African
American (20.3
percent),
Hispanic (1.8
percent), and
Native American
(1.2 percent)
mothers.
99 children (60.7
percent) male and
64 (39.3 percent)
female.
Major reasons for
hospitalization:
Respiratory
problems,
accidental
trauma,
neurologic
problems, and/or
infection.
57% (n = 93) of
children never
been hospitalized
overnight and
none had
1. COPE mothers reported

significantly less parental
stress and participated
more in their childs
physical and emotional
care compared to controlgroup mothers
2. COPE mothers also had
less negative mood
state/depression and fewer
PTSD symptoms at
follow-up assessments
after hospitalization.
stronger beliefs of their
childrens likely responses
to hospitalization and how
they could enhance their
childs adjustment, which
may have mediated the
significantly fewer
withdrawal symptoms (six
months posthospitalization) and
negative behavioral
symptoms (12 months
post-hospitalization) of
children of COPE mothers
less hyperactivity and
greater adaptability of
their children at 12
months compared to
control-group children.
76
COPE, BASC,
and Parental
Belief Scale for
Parents of
Hospitalized
Children
Limitations:
The sample
contained largely
Caucasians and
failed to include
fathers, which
weakens the
generalizability
of the findings.
The rate of
attrition through
12 months postdischarge
threatens the
internal validity
of the study.
77
experienced a
prior PICU
hospitalization.
PICUs of two
childrens
hospitals
Melnyk, B. M., Alpert-Gillis, L., Feinstein, N., Crean, H., Johnson, J., Fairbanks, E et al. (2004). Creating
opportunities for parent empowerment: Program effects on the mental health/coping outcomes of
critically ill young children and their mothers. Pediatrics, 113(6), 597-697.
Key:
SPSS = Statistical Package for the Social Sciences
IPP = Index of Parent Participation/Hospitalized Child
IPS = Index of Parental Support during Intrusive Procedures
PDD = Pervasive developmental disorder
PIMD = Profound intellectual and multiple disabilities
BESPP = Blackpool Early Support Pilot Programme
PBQ = Post-hospital Behavior Questionnaire
PICU = Pediatric intensive care unit
VAS-PC = visual analogue scales-physical care
VAS-EC = visual analogue scales-emotional care
PSS:PICU = Pediatric Stressor Scale: Pediatric Intensive Care Unit
PSI-P = Post-Hospital Stress Index for Parents
PSI-C = Post-Hospital Stress Index for Children
DSM-IV = Diagnostic and Statistical Manual of Mental Disorders
COPE = Creating Opportunities for Parent Empowerment
BASC = Behavioral Assessment System for Children
ID = Intellectual disability
DD= Developmental disorder
TDC = Typically developing children
NGT = Nominal group technique
Mo= month
Yr = year
PTSD = Post-traumatic Stress Disorder
POMS = Profile of Mood States
PRQ = Parenting Role Questionnaire
Appendix B
Best Practice Recommendations: Parents of Children Diagnosed with a Developmental
Disability
Aspect of
Characteristics
References
Recommendations
Level of
Evidence
78
FCC
Planning,
evaluating, and
delivering health
care based on
mutually beneficial
partnerships and
collaborations
between families
and health care
professionals.
Dunst, C. J., & Trivette, C. M. (2009). Metaanalytic structural equation modeling of the
influences of family-centered care on parent
and child psychological health. International
Journal of Pediatrics, 2009, 1-9
Kuhlthau, K. A., Bloom, S., Cleave, J. V.,

Knapp, A. A., Romm, D., Klatka, K., et al.
(2011). Evidence for Family-Centered Care
for Children With Special Health Care
Needs: A Systematic Review. Academic
Pediatrics, 11, 136-143.e8.
Fereday, J., Oster, C., & Darbyshire, P.
(2010). Partnership in practice: what parents
of a disabled child want from a generic
health professional in australia. Health &
Social Care in the Community, 18, 624-632.
King, G., King, S., Rosenbauum, P., &
Goffin, R. (1999). Family-centered
caregiving and well-being of parents of
children with disabilities: linking process
with outcome. Journal of Pediatric
Psychology, 24, 41-53.
Wakimizu , R., Fujioka, H., & Yoneyama, A.
(2010). Research article: Empowerment
process for families rearing children with
developmental disorders in japan. Nursing
and Health Sciences, 12(3), 322-328. doi:
10.1111/j.1442-2018.2010.00533.x
STAI
Measure of current
feelings of anxiety
(A-State) at
baseline and
following
completion of
intervention.
Level I
Level I
Level VI
Level VI
Level VI
Level II
Melnyk, B. M., (1994). Coping with
unplanned childhood hospitalization: Effects
of informational interventions on mothers
and children. Nursing Research 43(1), 50-55.
Melnyk, B. M., Alpert-Gillis, L. J., Hensel,
P. B., Cable-Billing, R. C., & Rubenstein, J.
Level II

(1997). Helping mothers cope with a
critically ill child: A pilot test of the COPE
Measure the
intervention. Research in Nursing and
individuals anxiety Health, 20, 3-14.
proneness at
baseline.
Melnyk, B. M., Alpert-Gillis, L., Feinstein,
N., Crean, H., Johnson, J., Fairbanks, E et al.
(2004). Creating opportunities for parent
empowerment: Program effects on the
mental health/coping outcomes of critically
ill young children and their mothers.
Pediatrics, 113(6), 597-697.
79
Level II
Level VI
Shewchuk, R., Richards, J. S., & Elliott, T.

(1998). Dynamic processes in health
outcomes among caregivers of patients with
spinal cord injuries. Health Psychology, 17,
125-129.
COPE-PDD (a)
One in-person
session with DVDs
for content delivery
of approximately
30 minutes in
length.
Journal of Pediatrics, 2009, 1-9.
Level I
Kuhlthau, K. A., Bloom, S., Cleave, J. V.,

Knapp, A. A., Romm, D., Klatka, K., et al.
DVDs contain
(2011). Evidence for Family-Centered Care
Level I
education and skill- for Children With Special Health Care
building
Needs: A Systematic Review. Academic
information of
Pediatrics, 11, 136-143.e8.
common parental
emotional
responses to a
unplanned childhood hospitalization: Effects Level II
developmental
disability
diagnosis.
Written copy of
information for
reflection and
review.

Level II
80
Health, 20, 3-14.

Parenting
activities: (1)
identifying special
characteristics and
coping strategies of
their child and (2)
common emotional
responses of
parents of children
with developmental
disability
COPE-PDD (b)
Parents who
received the COPE
program in
previous studies
reported decreased
parental stress,
depression, anxiety,
and fewer PTSD
symptoms during
hospitalization of
their child as well
as up to 12 months
following
hospitalization.
One in-person
session with DVDs
for content delivery
of approximately
30 minutes in
length.
Written copy of
information for
reflection and
review.
Information:
(1) Child behavior

Pediatrics, 113(6), 597-697.
Level II
Miller, A. R., Condin, C. J., McKellin, W. H.,

Shaw, N., Klassen, A. F., & Sheps, S. (2009)
Continuity of care for children with complex
chronic health conditions: parents'
Level VI
perspectives. BMC Health Services
Research, 242. Retrieved July 24, 2014, from
http://www.biomedcentral.com/14726963/9/242/
Fereday, J., Oster, C., & Darbyshire, P.
(2010). Partnership in practice: what parents
of a disabled child want from a generic
health professional in Australia. Health &
Social Care in the Community, 18, 624-632.
Journal of Pediatrics, 2009, 1-9.
Level VI
Level I

unplanned childhood hospitalization: Effects
Level II


information
describing the
typical range of
behaviors
associated with the
childs
developmental
disability and (2)
parental role
information
suggesting how
parents can be
involved in their
childs care.

Health, 20, 3-14.
Pediatrics, 113(6), 597-697.
Wakimizu , R., Fujioka, H., & Yoneyama, A.
(2010). Research article: Empowerment
process for families rearing children with
developmental disorders in japan. Nursing
and Health Sciences, 12(3), 322-328. doi:
10.1111/j.1442-2018.2010.00533.x
81
Level II
Level II
Level VI
82
Appendix C
Levels of Evidence Defined
Level of Evidence
Definition
Level I
Evidence from systematic reviews or meta-analyses that in

include relevant randomized controlled trials (RCTs), or
evidence-based clinical practice guidelines based on systematic
review of RCTs.
Level II
Evidence from at least one well designed RCT.
Level III
Evidence obtained from well-designed control trials without

randomization.
Level IV
Evidence obtained from well-designed case control studies and

cohort studies.
Level V
Evidence obtained from systematic literature reviews of

descriptive qualitative studies.
Level VI
Evidence obtained from a single descriptive or qualitative study.
Level VII
Evidence obtained from the opinion of authorities and/or reports

of expert committees.
Melnyk & Fineout-Overholt, 2011

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Running head: PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

Evidence-Based Recommendations for Parents of Children with Developmental Disabilities

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

Significance of the Problem

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

Measurements used include WeeFIM, Measure of Process of Care questionnaire, General

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

State-Trait Anxiety Inventory

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

Melnyk (1994) conducted a randomized controlled trial to examine the effects of

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

Additionally, by creating awareness of parental stress in this population and empowering

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

Strengths/Limitations and Recommendations for Future Research

PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES