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A Contextual Analysis of Caregivers of
Children With Disabilities
Leon Washington PhD and LMSW and OTR
a
a
Kidz and Caregivers at Heart, PC, Humble, Texas
Version of record first published: 07 Aug 2009.
To cite this article: Leon Washington PhD and LMSW and OTR (2009): A Contextual Analysis of
Caregivers of Children With Disabilities, Journal of Human Behavior in the Social Environment, 19:5,
554-571
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Journal of Human Behavior in the Social Environment, 19:554571, 2009
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ISSN: 1091-1359 print/1540-3556 online
DOI: 10.1080/10911350902983093
A Contextual Analysis of Caregivers of
Children With Disabilities
LEON WASHINGTON
Kidz and Caregivers at Heart, PC, Humble, Texas
When a child is born with a disability, the caregivers life is altered.
With the numerous challenges caring for a child with disability
brings, caregivers may feel devastated. These challenges often re-
sult in increased stress on the caregiver, which, in many cases,
places the child at risk for maltreatment. The purpose of this study
is to explore issues a caregiver faces when caring for his or her
child. In this contextual analysis, seven caregivers of children with
moderate-to-severe disabilities completed a questionnaire, were in-
terviewed individually, and assisted the researcher in constructing
an ecomap of their current living environment. Content from the
interviews was analyzed and several themes developed from the
data. Implications for clinical practice and future research ideas
are discussed.
KEYWORDS Stress and coping, ecology, qualitative research, dis-
abilities, relationships
INTRODUCTION
Children with disabilities can have significant developmental delays. Accord-
ing to Crowe (1993), caring for children with disabilities takes an excessive
amount of time and energy and places enormous demands on the caregivers
At the time this article was written the author was a doctoral candidate at Texas Womans
University, Denton, Texas, in the School of Occupational Therapy.
The author extends appreciation to the caregivers in this research who were excited to
participate and openly shared their stories. I also thank the peer reviewers from the School
of Occupational Therapy at Texas Womans University (Gayle I. Hersch, PhD, OTR; Evelyn
Andersson, PhD, OTR; Sally Schultz, PhD, OTR, LPC; and Cathy Candler, PhD, OTR). My
thanks go also to outside reviewers Rose Marie Penzerro, PhD; Emily Shultz, PhD, OTR; and
Celia Shultz, PhD, OTR.
Address correspondence to Leon Washington, PhD, LMSW, OTR, Kidz and Caregivers at
Heart, PC, PO Box 3203, Humble, TX 77347-3203. E-mail: kidzandcaregivers@yahoo.com
554
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A Contextual Analysis of Caregivers 555
(usually mothers). Case-Smith (2004) found that the demands and respon-
sibilities of caring for a child with a disability are different from those of
caregivers of typically developing children. Additionally, there are several
accommodations that caregivers and the families must make when there is
a child with a disability. Caregivers are often required to stay home to care
for their child, and many times the families financial resources, personal
well-being, self-identity, and social network are negatively affected. This
study explores the challenges and contexts of caregivers of children with
disabilities. Specifically, this proposed study examined possible associated
contextual factors that might affect the caregivers adaptation process that
could possibly lead to child maltreatment. The research questions for this
study were as follows:
1. What is the reciprocal relationship between the caregiver and the com-
munity?
2. What are the supports and what are the stressors of the relationship
between the caregiver and the community?
3. How does having a child with a disability affect the caregivers relationship
with others in the community?
4. How does having a child with a disability affect the family and their
relationship with the community?
CHALLENGES RELATED TO STRESS
Caregivers often feel overwhelmed with the responsibility of caring for a
child with a disability. In addition, they feel that there is a disconnection
from the rest of the world. Because of social isolation, caregivers have limited
access to extended family and community resources, such as family support
services as well as medical assistance for their child. Helitzer, Cunningham-
Sabo, VanLeit, and Crowe (2002) found that caregivers of children with
disabilities often experience social isolation because there is difficulty having
close ties with family members or friendship relationships; feeling over-
whelmed due to such things as domestic workload and child care; and loss
of identity such as being trapped and unable to pursue personal dreams.
Mothers of children with a chronic or hidden impairment often spoke of
being overwhelmed because of a high degree of variability in a typical day.
In addition, these mothers reported feeling isolated and experienced limited
social support (Cronin, 2004).
Parents of children with an intellectual disability often deal with issues
related to coping and adaptation to the childs behavior. Further, these
parents of children with behavioral or emotional deficits may respond dif-
ferently than parents of children with a physical disability (Hassall & Rose,
2005; Hassall, Rose, & McDonald, 2005). In a study by Hartley, Ojwang,
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556 L. Washington
Baguwemu, Ddamulira, and Chavuta (2005), stress was one of the main
consequences that caregivers faced because of time spent attending to a
child with a disability. In a similar vein, these researchers suggest that other
stress-related issues that affect a caregivers ability to cope are related to
financial hardships, the stigma of having a child with a disability, demands
on the caregivers time, and difficulty with certain caregiving responsibilities.
According to Cant (1993), caregivers of children with disabilities have limited
time to participate in various activities. Because of their limited time, many
family members felt they had no friends. There seems to be little research
related to how much time is spent in caring for a child with a physical
disability. According to Johnson and Deitz (1985), the more severe a childs
disability, the more time it takes to meet the childs needs; the resulting
physical demands increase the stress on the mothers. Crowe (1993) indicated
that mothers of young children spent considerably more of their time in
child-related activities than those of typically developing children.
Another challenge that caregivers of children with disabilities face is
changes in roles. It is important for social workers, occupational therapists,
and other health care providers to consider perceived past, present, and
future roles of caregivers with children with disabilities and the affect of the
childs disability upon their lives. Caregivers of children with disabilities are
expected to enact a complex role. They are often asked to assume roles
and take on responsibilities placed on them by many professionals. Crowe,
VanLeit, Berghmans, and Mann (1997) document that mothers of children
with multiple disabilities may assume multiple roles compared to those of
typically developing children. Not only do these caregivers take on unusual
roles but these unusual roles are often stressful and over-demanding. As
a result, caregivers often experience role confusion and role conflict while
attempting to manage multiple roles. Esdaile (1994) reported that additional
role strains are imposed on caregivers of children with special needs.
Research supports that caregivers of children with disabilities often ex-
perience numerous issues such as social isolation, challenges with adaptation
and coping, temporal constraints, and various role changes compared to
caregivers of typically developing children.
Abuse of Children With Disabilities
According to Alexander and Slay (2002), as a result of technological ad-
vances, there are more children with both profound and subtle disabilities
requiring special services. Additionally, Goldson (1998) found that there is an
increase in the survival rate of prematurely born infants due to technological
advancements. Because of these advancements, there is an increased survival
of children with disabilities and other developmental delays, and many of
these children live in environments or with families with limited financial
resources. Consequently, due to the burden and stress that is placed on the
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A Contextual Analysis of Caregivers 557
caregivers, many of these children are at risk for maltreatment. These changes
in attitudes and advancements affect several areas. First, many of these
children live at home and require extensive educational, social, and medical
services. Second, because there is an increased survival rate of children
premature or with low birth weight, more and more children with profound
and subtle disabilities are in the school environment. Third, research suggests
that children with disabilities are often victims of medical, educational, and
social systems that are unable or unwilling to meet their needs. Fourth, many
children with disabilities come from families with limited financial resources
and live in environments wherein violence is a typical part of their lives.
Fifth, children with disabilities in families dealing with these issues are the
ones who are at greater risk for maltreatment.
Ammerman and Campo (1998) document the controversy of what con-
stitutes a clear definition of child maltreatment. In general, maltreatment
refers to acts of commission or omission that result in or have a substantial
risk, in causing harm such as physical abuse, neglect, sexual abuse, or
emotional abuse. There is a sizeable body of literature regarding caregivers
and their children with disabilities who are at risk for abuse. According to
the Centers for Disease Control and Prevention (2006), in the United States,
872,000 (1,200 per 100,000 children) were classified as victims of abuse
from Child Protective Services. Of these children reported, some had higher
rates of fatal and nonfatal victimization owing to child abuse and neglect.
Approximately 1,500 children ages 0 to 17 years old died because of child
abuse and neglect (rate of 2.3 per 100,000 children). According to Cohen
and Warren (1990), the intersection of stress and child abuse has been given
considerable recognition by the federal government and has been reported
by researchers worldwide. Furthermore, all types of people may become
involved in the care of children with disabilities, such as bus drivers, foster
parents, and social service workers, and this wider involvement increases
the opportunity for abuse.
Stress in the lives of the caregiver and the family affects the physical,
spiritual, emotional, and financial dimensions of their lives individually and
communally. Moreover, many environmental stressors such as poverty, so-
cial isolation, unemployment, and limited education may negatively affect
the adaptation process and could be precipitating factors leading to child
maltreatment. Studies suggest that families are more likely to report higher
levels of stress associated with the care of their child with a disability as
compared to families of a child without a disability (Dyson, 1997).
A child with a disability may have an affect on the caregiver or family
in various ways. Very often, children with a disability may be a source of
embarrassment for their caregivers and for those who see the disability as a
personal failure and serve as a reminder to the parents of personal failure.
Also, the presence of a child with a disability affects family patterns, roles,
and routines, and these changes can be particularly stressful. Furthermore,
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558 L. Washington
the costs associated with caring for a child with a disability strains socio-
economic and social resources of the family, increasing the stress within the
family. As a result, children may not only be at a greater risk for abuse when
compared to those of typically developing children but they may be at risk
for abuse for longer periods of time (Burrell, Thompson, & Sexton, 1994).
Environmental and/or Ecological Perspective
In this study, a supporting foundation of this research is focused on the con-
text of caregivers of children discussed from an ecological systems perspec-
tive (Bronfenbrenner, 1979). The ecological perspective can be a valuable
tool in analyzing and addressing factors affecting caregivers and children
with disabilities. It is important to understand that environmental structures
are not separated or distinguished by linear variables but as a system with the
principle of interconnectedness or linkages between the different systems.
Furthermore, in the study of human behavior from an ecological perspective,
it is equally important to appreciate the relationship between science and
public policy (Bronfenbrenner).
METHOD
Design
The data collection procedure utilized for this study was a mixed design
that included qualitative and quantitative research methods. According to
Creswell (2003), the mixed method approach to research employs strategies
of collecting data sequentially or simultaneously to better understand the
research problem. The rationale for using a mixed approach for this study
was that it allowed the researcher the opportunity to compare with greater
accuracy each participants response to specific questions. Qualitative re-
search, as described by Denzin and Lincoln (2002), deploys a wide range
of interconnected interpretive practices to get a better understanding of the
subject. Patton (2002) posits one of the strengths of qualitative designs is
that it is naturalistic and allows interviews and observations to take place
in real-world settings. The quantitative portion of this study involved the
use of a questionnaire and transforming the numerical responses from the
questionnaire for interpretation and to support the themes in the study.
This study utilized a phenomenological tradition to gain a deeper un-
derstanding of the participants experiences (Patton, 2002). Speziale and
Carpenter (2003) found that the lived experience gives meaning to individual
perception of a phenomenon and experiences of the world of everyday
life. Specifically, a phenomenological approach seemed best suited in this
research as a means of uncovering the lived experiences of caregivers of
children with disabilities.
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A Contextual Analysis of Caregivers 559
TABLE 1 Demographic Data of the Study Participants
Name Gender Age Ethnicity
Marital
status Position Education Occupation
Jeanette Female 60 African
American
Married GGM Some college Caregiver
Sandy Female 59 White Married M 12th Grade Caregiver/
hairdresser
Willie Male 53 White Married F B.S. Engineer/
caregiver
Teresa Female 49 White Married M B.S. Caregiver
Zippy Female 56 White Married M Some college Caregiver/
secretary
Mary Female 34 White Single M 12th Grade Caregiver
Blessed 2 Female 53 African
American
Divorced G B.S. Caregiver/RN
Note. GGM, great-grandmother; M, mother; F, father; GM, grandmother.
Participants
Purposeful sampling was used to provide rich information and illuminate
the research questions (Patton, 2002). Seven participants who were caring
for children with disabilities participated in this study. The seven included
one father, four mothers, one grandmother, and one great-grandmother. The
ages of the participants ranged from 34 to 60 years, and the childrens ages
ranged from 4 to 23 years with varied diagnoses. Table 1 provides the
demographics for the participants in this study. The names used for this
study are pseudonyms and were selected by the participants.
Procedures
Prior to initiating the study, this researcher obtained approval of the study
from the Texas Womans University Institutional Review Board. The partic-
ipants were recruited by an occupational therapist who works in a special
school for children with severe and profound disabilities and who also served
as a gatekeeper for this researcher. The school was selected because it is
the only special public school in the area specifically designed for children
with disabilities. A letter giving permission was obtained for this purpose
from the principal. This researcher informed the gatekeeper to select specific
participants based on criteria that were most representative or informative.
Inclusion criteria for the study were (a) participants must be caregivers
of children with a disability (any disability or age can be included in this
study), (b) the primary caregiver may be a single parent (mother or father),
grandparent, or foster parent, (c) the caregiver must be able to agree to
participate in the research, and (d) caregivers must be able to speak English.
There was one exclusion criterion: Caregiver does not have a child with a
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560 L. Washington
disability. The occupational therapist was given brochures created for this
study describing the purpose of this study and self-addressed, stamped cards
(researchers address). The gatekeeper handed out brochures to prospective
participants. The participants notified the researcher on the self-addressed
card whether they agree or do not agree to participate in the research. After
approval, all participants were informed about the study, and the researcher
obtained initial verbal permission from each participant prior to the first face-
to-face meeting. At the first meeting, the investigator reviewed information
about the research with the participants, answered questions, and received
an agreement to participate via written consent. The written consent form
was completed prior to beginning the interview and included a statement
about privacy and confidentiality.
Data Collection
Each participant completed a questionnaire at the beginning of the first
meeting. The questionnaireFamily Index of Regenerativity and Adaptation-
General (FIRA-G)is divided into three sections: (a) family stressors, (b) rela-
tive and friend support, and (c) family coping coherence (McCubbin, Thomp-
son, & McCubbin, 1996). The results from this questionnaire are descriptive.
A frequency distribution was utilized in each section to compare participants
responses to each question. Although it is recognized that frequency data
are considered to have the lowest power for data analysis, using a frequency
distribution helps to organize and summarize information related to the three
sections of the questionnaire. Results from the questionnaire should provide
useful information and provide an opportunity for comparison of responses.
After the completion of the questionnaire, each participant was asked to
join the researcher in constructing an ecomap. The ecomap was developed
as a tool used in social work practice to measure social support (Hartman,
1995). Ray and Street (2005) document that an ecomap is a visual representa-
tion of the family members and the larger world in which the family resides.
Various symbols are used to denote a relationship and the strength of that
interaction between the family and the community. The community may
include work, school, law enforcement agencies, mental health agencies,
and the spiritual community. An ecomap serves as a graphic representation
of the relationships for both the researcher and the participant and leads
to better understanding of significant contextual factors in the familys life.
Furthermore, Ray and Street state that an ecomap allows the researcher and
participant to work together, increase their awareness of the familys social
network, and achieve a better understanding of the types of relationships.
Ecomaps have the potential for use at multiple-system levels such as
with an individual and with community organizations (Mattaini, 1993). At
the center of each ecomap presented in this study is a basic genogram of
the immediate family structure. McGoldrick and Gerson (1985) describe a
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A Contextual Analysis of Caregivers 561
genogram as a design similar to a family tree that lists additions and losses in
family, communication, and relationship patterns and other important events.
The use of a questionnaire, construction of an ecomap, and accom-
panying interview guide served as methods of triangulation to generate a
thick description of lived experiences (Patton, 2002). The researcher and the
participant constructedan ecomap that included the people, agencies, and/or
organizations that he or she had contact with outside of the family in the
last 6 months. The participants were encouraged to identify and discuss the
relationship and interaction with each entity. While designing the ecomap,
the participants were asked to think about their experience as a caregiver and
their perspectives of the interaction between the family and the community
as it relates to caring for their child with a disability.
Data Analysis
Both manual and computer-assisted analyses were utilized for this research.
The computer-assisted analysis used was NVivo 7, a qualitative software
program. This researcher participated in individual training to learn and
to utilize the NVivo 7 software program for this study. Content from the
individual interviews was analyzed by assigning codes to specific issues and
developing prominent themes.
Coding Procedure
The data from the interviews and field notes were transcribed, read thor-
oughly and reread, and manually coded. Additionally, the transcribed inter-
views and field notes were imported into the NVivo 7 software program.
This program allowed the researcher to gather all the content and place it
into a virtual container called tree nodes available through N-Vivo 7. Tree
nodes were created in a hierarchical structure for themes and sub-themes.
On the basis of information received from the ecomap, questionnaire,
and field notes, content was analyzed by assigning codes to specific issues,
and prominent themes developed. According to Krefting (1991), a method of
assessing trustworthiness and establishing rigor is through member checks
with the participant(s). This researcher conducted member checks through-
out this study. Member checks help to establish credibility in the results
of the data. One way this was accomplished was by asking participants
whether the information (i.e., questionnaire, field notes, and ecomap of
their current situation) appeared accurate and the themes reflected what
they intended to say. Additionally, participants were encouraged to discuss
their personal thoughts of themes. As another method of triangulation called
peer review, this researcher used experienced coders including dissertation
committee members and colleagues. The themes that emerged from the data
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562 L. Washington
were identified and confirmed by multiple coders. Triangulation helped to
illuminate inquiry questions and strengthen the study (Patton, 2002).
RESULTS
These are the results from both the questionnaire and the ecomap. The
questionnaire was designed to address overall family support, relative and
friend support, and family coping-coherence. The themes and sub-themes
that emerged from the ecomaps are discussed in a separate section.
Questionnaire Results
ISSUES RELATED TO FAMILY STRESSORS
According to the participants response from this section of the questionnaire,
work was identified more as a stressor compared to other family concerns.
ISSUES REGARDING RELATIVE AND FRIEND SUPPORT
Although there were varied responses regarding relative and friend support,
there was a greater cluster of responses regarding support from friends
compared to support from relative or family members.
ISSUES DEALING WITH FAMILY COPING-COHERENCE
All of the participants (100%) reported that they cope with family issues by
having faith in God.
Ecomap Results
An ecomap of each caregiver was constructed for this research. However,
an example of only one participant will be presented. Ecomaps not only
served as a visual representation of each participant but provided supporting
data to themes that emerged from each caregivers interview. Within each
ecomap is a basic genogram (family tree) of the caregivers immediate family
within each ecomap as explained in Figure 1. See explanation of the ecomap
symbols in Figure 2.
Explanation of Ecomap Symbols
In an ecomap, lines are drawn from the family to the outer circles to show
relationships. According to Wright and Leahey (2000), the line drawn demon-
strates the nature and strength of the relationship such as strong connection,
tenuous connection, or stressful relations; the wider the line, the stronger
the connection.
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A Contextual Analysis of Caregivers 563
FIGURE 1 Genogram symbols.
Example of a Caregivers Ecomap with Explanation
Jeanettes ecomap demonstrates that she lives with her husband and great-
granddaughter Beth. Jeanette has a very stressful relationship with her daugh-
ter Anna. She has weak relationships with her son Max and her neighbors.
Additionally, Jeanette has a weak relationship with her extended family
FIGURE 2 Ecomap symbols.
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FIGURE 3 Jeanettes ecomap.
members, with the exception of her granddaughter. She reported that her
biological brothers are not very supportive. Jeanette has a strong reciprocal
relationship with her three friends. The strongest relationship is with the
church. See Jeanettes ecomap, Figure 3.
Caregivers Perspective in Context
Looking at the caregiver from an ecological perspective in the context of
caring for their child with a disability, many stressors were identified. Two
recurring themes and sub-themes emerged from the interview data and from
the ecomaps constructed with the participants. The two major themes were
relationships and context. The sub-themes were (a) support from family, ex-
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A Contextual Analysis of Caregivers 565
tended family, and friends, (b) lack of support and social isolation, (c) stress,
and (d) spirituality.
Gallimore, Weisner, Bernheimer, Guthrie, and Nihira (1993) document
that there are many constraints related to accommodation that families of
children with disabilities face in the world around them (e.g., family sub-
sistence and financial base, home and domestic task and chore workload,
child care tasks, accessibility of health and educational services, marital role
relationships, fathers role, and social support).
Support From Family, Extended Family, and Friends
Several participants reported similar experiences of support from family
members, extended family members and friends.
Blessed 2 was a grandmother who received custody of her grandchild
diagnosed with cerebral palsy, shaken baby syndrome, and autism. She
reported that she had great support from a daughter-in-law who is not the
biological mother of her grandchild.
I have a daughter-in-law who is married to Jacobs dad and she has been
great. Shes been great because shes been there from day one. She was
involved with my son and since I had the accident in 2004 shes been in
his life because shes been helping me take care of him.
Lack of Family Support and Social Isolation
In contrast, several participants stated that they often felt as if they did not
have family support. Jeanette is a great-grandmother who has custody of her
4-year-old granddaughter who has autism; Jeanette reported lack of family
support. The childs biological mother is in prison, and Jeanette has very
little support from other family members. Jeanette put it this way:
I get very little support from my son. No, hes not supportive. Hes there;
you know how people can be there if you need them but an encouraging
word along the way you might not get that from him.
Stress
Stress resulting from interaction within the environment was a concern for
all of the participants. Here are a couple of examples of supporting data
from the sub-themes discussed in the interviews.
Two caregivers discussed how work has been a very big stressor in
their lives. The stress of working full-time had a negative affect on their
relationships with their spouse and their entire family. Teresa put it this
way, regarding her spouse:
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Yes, he works, and he works out of town. So thats a little more stressful
situation for me : : : that he lives out of town four days out of the week at
least : : : hes got quite a bit and the work, he also travels with his work.
Willie, the only male caregiver in this study, stated during the interview
that he really regrets having to leave his family during the week because of
work. He stated that he especially feels bad because he realizes that his wife
has to bear the bulk of the responsibility of caring for their daughter when
he is not there, and it is a tremendous burden on her.
My job is very, very demanding. My type of job is kind of like being an
air traffic controller. If you make a mistake, people die or get injured.
So, theres a lot of pressure when I create a well plan or a design : : :
Theres a lot stress and a lot of pressure, the way it affects the family is
that when I am the breadwinner, my wife is 100% responsible for our
daughter.
Spirituality
A consistent sub-theme among all of the caregivers in this study was prayer.
During the interviews, many of the caregivers said that their spirituality is the
only thing that has helped them through difficult times especially in terms
of caring for their child with a disability. The spiritual connection associated
with a church affiliation, including bible study and prayer, served as a safe
haven for many of these caregivers.
Sandy believes that church and prayer is a strong viable part of her life.
She stated:
We have church and work and thats basically the biggest part of my
social life. Prayer is very important. When I get so totally, think Im getting
too frustrated or I get frustrated at her and thats something weve tried
to not ever, ever do because she cant help it. But you know when shes
sick or irritable like with some medications, they make her so irritable
that you just dont touch her or shes going to swing at you. You have
to kind of walk away and take a breath and pray, Lord, help her, touch
her, and it works.
DISCUSSION
This qualitative study was a phenomenological exploration of the lives of
seven caregivers and their experiences caring for children with a disabil-
ity. Through the lens of the ecological perspective, an appreciation and
understanding of human behavior in the social environment was demon-
strated. Additionally, this perspective grounded a contextual analysis for each
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A Contextual Analysis of Caregivers 567
caregiver. Caregivers and their families are often affected both positively
and negatively when a child is born with a disability. Not only is there
stress on individual family members but there is added stress when a family
member assumes the primary role of caring for the child. As evident from
this research, the stress of caring for a child with a disability encompasses
many areas such as dealing with immediate family and daily routines and can
intensify when a caregiver has to deal with various social systems outside
of the family. Jeanette, the great-grandmother, describes the stress of a
caregiver:
I feel as though Im about to lose my mind at times. It is so stressful caring
for a child with autism and behavior problems like her. I never had to
deal with things like this with my own children. None of my children did
this. Being a great-grandmother caring for a child at this time in my life
is really hard. I know that in the past I slap my child but I had to change
that and not let her get to me like that.
More than 12% of African American children are in the care of a grand-
parent as compared to 3% of European-heritage children and 6% of Latino
children. Further, grandparents who care for a child with a disability report
receiving less support and experience more life disruption than custodial
grandparents raising children without problems or traditional grandparents
(Kolomer, McCullion, & Janicki, 2002).
Research suggests that a combination of factors such as financial and
emotional strain, lack of support, and social isolation can lead to children
with disabilities being the target of abuse and neglect. These same factors
were experienced by the participants in this study. Furthermore, Cadzow,
Armstrong, and Fraser (1999) found that there is a link between a variety of
ecological factors, such as limited education and poverty, and various forms
of abuse and neglect.
Several themes emerged from the data produced by this study. A key
theme was relationships. During the interviews and at the start of the ecomaps,
most of the caregivers reported that there was limited involvement or contact
with entities or people outside of their homes. As the ecomaps took shape,
several caregivers found that they were involved with many community orga-
nizations and were not aware that there were so many people and agencies
involved in their personal life. All of the caregivers said that a diagram of
their relationships with others outside their immediate surroundings was
different than what they expected and helped them to better understand
why they felt so overwhelmed. A casual observer looking at the ecomaps
might think that multiple connections within the community would suggest
there are many meaningful relationships with the communities. Conversely,
it is apparent from the ecomaps and the interviews with these caregivers that
a lot of the relationships with others outside of the family unit either lacked
reciprocity or were very superficial. Having a relationship with others does
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not necessarily mean that the relationship is supportive. This is particularly
true where the majority of the caregivers shared with this researcher that
they did not perceive themselves as being well-supported. A couple stated
on numerous occasions that in the 18 years of their daughters life, no
one has ever asked how they deal with personal stress or issues related
to caring for their child with a disability. They went on to say that they did
not have many friends. This opinion was shared among the other partici-
pants. Several of the caregivers commented that they have limited friends or
no friends and dealing with outsiders is extremely stressful. Unfortunately,
many caregivers said it is even more difficult when they feel isolated from
their own family members. Though supportive relationships with extended
family members are essential for these caregivers, the strength and consis-
tency of the relationship are of greater importance. It is important to notice
the variation in the thickness of the lines of the ecomaps that denote the
strength of the relationship between the caregivers and various entities and
the flow of the relationship. All of the caregivers reported that the lack of
a supportive relationship affected their trust in the system to meet basic
needs.
One key component that is consistent among all of the caregivers is the
strong connection to a spiritual foundation. Hodge (2000) found that the use
of spirituality in ecomaps develops a clear and concise understanding of a
familys relationship to spiritual systems. In addition, spirituality is often a
personal concern both for family and therapists. Speraw (2006) stated that a
sense of place and a grounding of faith that religious traditions provide are
often negatively affected by the occurrence of a disability in all aspects of
daily life as it is lived by families. Spirituality has diverse meanings such as
prayer, meditation, and bible study. All of the caregivers stated that having
some sort of spiritual connection was the only way that they were able to
cope or to adapt to the issues related to caring for themselves and their child
with a disability.
Implications and Lessons Learned
According to these research findings, caregivers and families caring for a child
with a disability seem stressed by the responsibility and the challenges within
the family structure and in the environment. These varieties of stress-related
issues often place the child at risk for maltreatment. This study has important
implications not only for social workers but for others, including health care
professionals working with caregivers of children with disabilities. This re-
searcher has a heightened awareness of the importance of understanding and
appreciating the role and concerns of the caregiver from an environmental
perspective, specifically as it relates to issues that may be contributing factors
to abuse and neglect. It is unfortunate that child abuse and neglect occur;
it is even a greater tragedy that children with disabilities are often the ones
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A Contextual Analysis of Caregivers 569
targeted for abuse. All too often the perpetrators are known to the child
and are typically the family caregiver or biological parent (Schormans &
Brown, 2005). Focusing on the caregiver from an environmental perspective
accentuates the need for prevention of abuse and neglect. Parenting is a role
that is replete with many responsibilities such as safety, health, development,
and well-being of the child (Jones, 2006). This is particularly true when a
child has an illness or disability.
Well, what does this mean in practice? For health care providers and
therapists, it is important to acknowledge and appreciate the caregivers
perspective in the context of his or her environment. In clinical practice,
therapists often assume because a relationship exists that the relationship is
strong and/or supportive. This point of view may be considered perceived
support. Conversely, the caregiver, client, patient, or family is the entity
that defines the relationship, the strength of the relationship, whether there
is reciprocity in the relationship, and whether the relationship is supportive.
One way that therapists can respond is through active listening and thera-
peutic use of self in exploring and understanding the person in his or her
environment.
Study Limitations
There were several limitations in this study. First, this sample is biased toward
a middle-class, older, educated, and fairly affluent group (with the exception
of Mary). Second, the majority of caregivers in this study are not only more
educated but do have more resources, had more experience dealing with
stress, and have been around longer with time to build up a support system.
Even still, these caregivers are not only overwhelmed by the stress of caring
for a child with a disability but have increased stress related to day-to-day
interactions with various entities in the community. Third, had this study
been composed of less-affluent samples or participants of significantly lower
income, there may have been more stress observed and reported.
CONCLUSION
The intent of this research was to create a better understanding of the
perspective of the caregiver in context of caring for a child with a disability.
Ecomapping can be an effective research tool and used by professionals
from various disciplines such as social workers and occupational therapy
practitioners to better understand human behavior in the social environment.
This can also be an effective strategy for assessment and intervention with
families and perhaps a step to understanding stressors that can lead to abuse
and neglect of children with disabilities.
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