Julie L. Ramisch, M.S., Thomas Pavkov, Ph.D., Sesen Negash, M.S., & Joseph Wetchler, Ph.D.,Purdue University Calumet
This investigation sought to compare families with children with disabilities (CWD) concurrently diagnosed with a mental health condition versus families with CWD having no co-occurring diagnoses. Surveys that included a demographic questionnaire, the Family Resource Scale, the Caregiver Strain Questionnaire, and the Family Crisis Oriented Personal Scales were collected from 340 parents. Independent t-test analyses indicated that parents with dually diagnosed children perceived that their family had lower levels of family resources, had elevated levels of caregiver strain, and did not use coping strategies as effectively as compared to families without dually diagnosed children. Implications for future research and limitations of the study are also discussed.
Raising a child with disabilities (CWD) can be a difficult task for parents. The 2002 Americans with Disabilities section of the U.S. Census Report found that there were 235,000 (2%) children under three-years-old and 3.6 percent of children three- to five-years-old with a developmental delay, a physical disability, or both. Finally, 4.0 million (10.9%) children between six- and 14-years-old had a disability (Steinmetz, 2004). Many CWD are also dually diagnosed with a serious emotional disturbance (SED) (Vernberg et al., 2008). Disorders that fall under the term SED include anxiety disorder, bipolar disorder, and major depressive disorder. However, one of the most commonly diagnosed SED disorders in childhood is attention deficit hyperactivity disorder (ADHD; Marsh, 2004). In 2004, it was estimated that six to seven percent of children in the United States were diagnosed with ADHD (Child Trends DataBank, 2006). More recently in 2008, the U.S. Department of Health and Human Services reported that about four percent of children between six and seventeen years old diagnosed with ADHD also had a learning disability. Other studies have also reported SED and behavior problems concurrent with significant language delays (Palmer, 1996) and autism (Boisjoli & Matson, 2009; Simonoff et al., 2008).
Caregiver Strain and Burden of Raising Children with Disabilities
Many studies have found that caring for a child with a disability can be a stressful job for parents (Baker-Ericzen, Brookman-Frazee, & Stahmer, 2005; Boyce, Miller, White, & Godfrey, 1995). Financial strain and stress appear to be present and the most prominent source of stress in many families with CWD. Parish and Cloud (2006) concluded that families that had CWD were significantly more likely to live in poverty than families that did not have CWD. Fujiura (1998) found that families with a member with mental retardation or a developmental disability were above average in household size and dependent on some form of income support. He also found that single parent households, specifically those headed by single parent mothers, had the lowest income and were the most dependent on outside aid. Parish, Seltzer, Greenberg, and Floyd (2004) discovered that the mothers of CWD were less likely to have had a full-time job and even less likely to have had a job for more than five years compared to mothers of children without disabilities. Finally, Wetchler (2005) described his experiences as a single father of his daughter with profound mental retardation. Similar to single mothers, he stated that the financial strain and the struggle to find respite care for his daughter were primary sources of stress.
Parents of CWD also have reported that the more time they are required to care for their child, the more burden that they feel. Haveman, van Berkum, Reijnders, and Heller (1997) found that the time demands averaged 31 to 60 hours a week for parents with children under nine years of age and 15 to 30 hours for parents with an adolescent or an adult. The time demands were greater for families who had a child with fewer adaptive skills, more behavioral problems, and more physical health problems. Those families who had older children with more severe behavioral problems, worse physical health, and fewer adaptive skills reported to have higher levels of burden (Haveman et al., 1997).
Due to the influence of a child's disability, it is important that families adopt appropriate and effective coping methods in adjusting to their child's condition(s). A study by McCubbin and colleagues (1983) suggested that exercising family integration, support, and a positive definition of the situation, in addition to maintaining self-esteem, psychological stability, and social support most effectively helped parents adapt to the stress of managing a household with the addition of a child with an illness. As do all individuals, parents of CWD also must cope with stresses within the context of their interpersonal relationships with one another. Within the partner dyad, coping strategies may engender and fortify resiliency or reduce relationship functioning. Various reports indicate how discrepancies in coping between couples are related to strain in the partner dyad (Hoekstra-Weebers, Jaspers, Kamps, & Klip, 1998; Kupst & Schulman, 1988).
SOURCES OF SUPPORT
Support by partners and related family members has been shown to greatly influence the well-being of parents for CWD. Bennett, DeLuca, and Allen (1995) found that parents in all stages of the family life cycle perceived family members and close friends as sources of emotional support. Parent support groups appeared to be the largest source of social support that parents receive from people outside of their immediate family. These groups can be a source of emotional support, as well as a source of new information and techniques about caring for a person with a disability. For some parents, the level of burden that they experience is directly affected by the levels of frustration and lack of support that they experience from outside services. Often, the more support that is received leads to the perception of a greater level of functioning and coping. Greenberg, Seltzer, and Greenley (1993) found that outside services such as support groups, in-home services, and respite care reduced the level of frustration for parents. Bennett and colleagues (1996) also reported that parents felt that relationships with professionals who were knowledgeable and flexible also contributed to a feeling of support.
Parents Raising Children With Dual Diagnoses
Much less is known about parents who are raising children diagnosed with a disability and SED. In fact, authors of recently published articles have commented that physicians and other professionals often fail to recognize that it is possible for children to have both a disability and a mental illness (Fuller & Sabatino, 1998; Ramisch & Franklin, 2008). Regardless of the difficulty of obtaining a diagnosis, it is important to understand how parents cope when their children are dually diagnosed. Only one recent study was found (Maes, Broekman, Dosen, & Nauts, 2003) on this topic. It suggested that families with children dually diagnosed with a disability and behavioral problems experienced more caregiver burden and feelings of guilt than families where the child suffered from a disability alone. However, how families use resources available to them and how they cope is unknown.
There is a definite gap in the literature about how parents manage to care for their children with disabilities and SED. This article attempts to add to current knowledge about parents raising CWD and SED through a comparative analysis between parents of CWD and those who have a CWD and combined diagnoses of SED. Based upon articles that have reported that families with children with SED have high levels of burden and stress (Kelleher, McInerny, Gardner, Childs, & Wasserman, 2000; McIntyre, Blacher, & Baker, 2002), it was hypothesized that parents of dually diagnosed children would experience greater caregiver strain compared to parents having CWD and no additional SED. Additionally, analyses were performed to compare parents of CWD and parents of dually diagnosed children in terms of their resources and coping strategies. With no previous literature about these topics, it was hypothesized that there would be a significant difference between the two groups in terms of their levels of perceived resources and coping strategies.
The participants of this study were biological parents of a child or children diagnosed with at least one disability recognized by a federal organization or diagnosed by a medical doctor. There was no age limit for the child, and the only inclusion criteria was that the child still had to be living in the parent's home.
The survey packet contained a demographic questionnaire, the Family Resource Scale, the Caregiver Strain Questionnaire, and the Family Crisis Oriented Personal Scales. The demographic questionnaire included questions regarding age, gender, race, income, employment status, education level, number of children, and questions about the child's disability.
Family Resource Scale
The Family Resource Scale (FRS; Dunst & Leet, 1987) includes 30 questions that inquire about the adequacy of resources such as food, shelter, financial resources, transportation, health care, time to be with family, child care, and time for self. The questions are designed to assess if a family has adequate resources to meet the needs of the entire family as well as the needs of each individual member. Each item is measured on a five-point scale ranging from (1) not at all to (5) almost always adequate. The FRS has been found to have good internal reliability with a Cronbach's alpha of .92.
The participants are asked about the extent that resources are available for the family. An example of an item that asks participants to rate the adequacy of food is worded as "Food for 2 meals a day." "Indoor plumbing/water" is an example of an item that asks about the quality of shelter for a family. The FRS also includes items that ask about the resource of time such as "Time to be with children," "Time to be by self," and "Time to get enough sleep/rest." Overall, the FRS was seen as an appropriate assessment tool for this study because it includes objective items that question the amount of physical resources (money, food, and shelter), but it also includes items that are subjective such as the adequacy of time and emotional support.
Caregiver Strain Questionnaire
The Caregiver Strain Questionnaire (CGSQ; Brannan, Heflinger, & Bickman, 1998) includes 21 items that assess three different dimensions of caregiver strain: (1) objective strain, (2) internalized subjective strain, and (3) externalized subjective strain. Objective strain specifically assesses the types and severity of observable disruptions for the caregiver (e.g. "Disruption of family routines due to your child's disability?" or "Financial strain for your family as a result of your child's disability?"), internalized subjective strain measures the negative internal feelings of the caregiver (e.g. "How sad or unhappy did you feel as a result of your child's disability?" or "How guilty did you feel about your child's disability?"), and externalized subjective strain measures the negative feelings that the caregiver has that are directed at the child (e.g. "How angry did you feel toward your child? or "How embarrassed did you feel about your child's disability?").
Participants who complete the CGSQ are asked about how they have felt during the past six months in each of the three different areas. Two sets of questions survey the family as a whole as well as the individual caregiver. Each item is measured on a five-point scale ranging from (1) not at all to (5) very much. For purposes of this specific study, the phrase "your child's emotional or behavioral problem" was replaced with "your child's disability". The three subscales have good internal reliability with alpha coefficients ranging from .73 to .91.
Family Crisis Oriented Personal Scales
The Family Crisis Oriented Personal Scales (F-COPES; McCubbin, Olson, & Larson, 1987) includes 30 items designed to assess and identify problem solving, coping attitudes, and behavioral strategies used by families in difficult or problematic situations. The questions are divided into five different subscales that measure internal and external coping mechanisms. The five subscales are: (1) acquiring social support from relatives, friends, neighbors, and extended family; (2) seeking spiritual support; (3) mobilizing the family to acquire and accept help from community resources and services; (4) reframing and redefining stressful situations in order to make them more manageable; and (5) passive appraisal which is the family's ability to accept problematic issues while minimizing reactivity. Each item is measured on a five-point scale ranging from (1) strongly disagree to (5) strongly agree. The F-COPES has been found to have good internal reliability with a Cronbach's alpha of .87.
Parents were given the survey packets through agencies that provide service to people with disabilities in and around the Chicagoland area, and surveys also were available to be completed online by parents who had access to a computer. In order to collect surveys online, myspace.com was used as a vehicle to contact parents from around the country. A personal myspace.com webpage was created that included a short summary of the purpose of the research and a link to the Purdue Survey Research Center's website where parents could begin the survey. The researchers also located different groups on myspace.com where parents of children with disabilities were active. The online version of the survey was developed by the Institute for Social and Policy Research at Purdue University Calumet and surveys completed online were stored in a secure database to which only the supervising researcher had access. Surveys that were completed by pen and paper were entered into the online survey database by researchers. Approval to conduct this study was provided by the Purdue University Institutional Review Board.
The survey that was used was constructed using principles described by Dillman (2007). In his book, Dillman described a few principles that are necessary to use when designing a survey. In order to get a good response rate from participants, Dillman suggested design features such as using consistent wording and visual appearance of the survey, thoughtfully deciding the order of the questions making the first question appealing and inviting, and using navigational guides to construct a clear and defined path through the survey. All of these aspects were integrated into the construction of the current survey.
There were 340 surveys that were collected from parents. Respondents could choose to leave sections of the survey blank; therefore, criteria was established to determine how to handle the missing data. On the three assessments that were used, if a parent left more than two-thirds of the assessment blank, his or her assessment was excluded from the analysis.
DEMOGRAPHIC INFORMATION ABOUT THE PARTICIPANTS
The surveys were collected over a time period of four months, and overall there were 300 female parents, 19 male parents, 209 male children, and 128 female children that were represented. Twenty-one parents chose not to disclose their gender and three parents chose not to disclose their child's gender. The average age of the parents was 39.81 years (SD = 10.90 years), and the average age of the child was 11.31 years (SD = 9.35 years). A large majority of the parents reported that they were married or partnered (n = 248), 25 were single, 5 were separated, 34 were divorced, and 6 were widowed. Of the parents, 285 identified as being Caucasian, and other participants identified themselves as Black or African-American (n = 9), Hispanic or Hispanic-American (n = 10), Latin American (n = 6), Native American or Alaska Native (n = 1), Asian (n = 1), or as something other than what was listed (n = 4). The income of the parents ranged widely. Nearly a third (n = 114) indicated that their yearly household income ranged between $30,000 and $59,999. Additionally, almost half of the participants (n = 162) had earned a college degree ranging in type from an associates degree to a professional degree (MD, DDS, JD).
On average, each parent had 2.42 biological children (SD = 1.26 children) and 1.27 children (SD = 0.73 children) that had disabilities. The average age for children at the time that they were diagnosed was 2.94 years (SD = 3.05 years). Forty-one of the parents reported that they themselves had a disability. When parents were asked about their opinion of their child's levels of disabilities, 178 reported moderate levels, 93 reported severe levels, and 66 reported mild levels.
For the grouping of parents, an open-ended question was used to ask parents about their child's disabilities. Parents were asked to list all of their child's documented disabilities. Parents of 48 children indicated that their child was diagnosed with a SED in addition to a disability. Exactly 273 parents indicated that their child was only diagnosed with developmental, intellectual, or physical disabilities. Nineteen parents chose not to disclose their child's disability or disabilities, and therefore these surveys were not included in this analysis. The descriptive statistics for information collected about family resources, caregiver strain, and coping of parents with children who have disabilities alone versus those who have a child with both a disability and an SED are presented in Table 1.
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FAMILY RESOURCE SCALE
An independent samples t-test was performed comparing the mean scores on the FRS for parents with CWD (M = 3.76, SD = .64) and parents with CWD and SED (M = 3.48, SD = .70). This test was found to be statistically significant, t (289) = 2.55, p = .01. When compared to parents with a CWD alone, parents with a CWD and SED perceived that their family had significantly less resources to help meet their individual and family needs.
CAREGIVER STRAIN QUESTIONNAIRE
Results from an independent samples t-test determined that parents with dually diagnosed children (M = 2.04, SD = .94) experienced significantly greater externalized subjective strain than compared to the group of parents with CWD and no SED (M = 1.6, SD = .66), t (53) = -3.08, p = .003. There was also a statistical difference in global strain between the two groups, with parents with a CWD and SED experiencing greater global strain (M = 2.93, SD = .88) than did the parents who had a CWD and no SED (M = 2.65, SD = .81), t (305) = -2.164, p = .031. No significant differences were found between the groups relating to objective strain and internalized subjective strain.
FAMILY CRISIS ORIENTED PERSONAL SCALES
Results indicate that reframing was significantly more effective as a coping strategy for parents of CWD and no SED (M = 3.82, SD = .67) than for those parents whose children were dually diagnosed [(M = 3.49, SD = .90), t (304) = 2.78, p = .006].
Together, these analyses lend support to the first proposed hypothesis, that parents having CWD and SED experience lower levels of resources as compared to the comparison group. A lack of expertise and training in the area of dual diagnosis and a lack of joint treatment options may leave families feeling inadequately supported. They may find it more difficult to take time for their self-care or spend time with their loved ones due to the additional time commitments associated with supplementary diagnoses. When the demand on parents increases, parents may experience difficultly managing multiple roles or utilizing their roles compatibly. Moreover, in an effort to regulate the child's negative reactions in social situations, parents may reduce or avoid relationships outside of the home. Families of dually diagnosed children may benefit from services that jointly address their children's disability and behavior problems so that they are not inundated with financial costs and service appointments.
Results from the CGSQ indicated that parents of dually diagnosed children experience greater caregiver strain than the comparison group lending support to the second hypothesis that posited that there would be a significant difference between the two groups in this area. The two specific areas that parents of children with dual diagnoses experienced higher strain were externalized subjective strain and global strain. The externalized subjective strain subscale measures the negative feelings that the caregiver has that are directed at the child. Frequent and challenging emotional outbursts, hyperactivity, or defiance can be emotionally and physically difficult for the parent to manage and may create a negative pattern of interaction between the parent and the child. Consequently, the negative interaction pattern may result in the parent feeling a range of negative feelings (e.g., anger, embarrassment, resentment, etc.).
Finally, the hypothesis indicating that parents of children with dual diagnoses would have significantly different coping skills was partially supported. Parents in the dually diagnosed group were found to have greater difficulty redefining and reframing their problems as a means to cope with difficult feelings and events. The added strain and responsibility associated with the dual diagnosis may increase a parent's emotional reactivity and make it more difficult for them to engage in effective problem-solving. As negative sentiments begin to exceed the number of positive sentiments, it could become more difficult for the parent to exercise more positive thinking about their problems, thus making it less effective as a coping strategy.
Limitations of This Study
There were some limitations of this study that need to be discussed. The first limitation is that this study did not include any controls that reduced the variance in sample. The severity of the disability is a specific area that needs to be controlled in future studies. There were also a disproportionate number of female to male parents in this study, which as a result may provide an inaccurate illustration of how the general male parent population reacts to CWD and CWD with SED. Another limitation of this study is that there was not an emphasis on collecting surveys from parents across the country. Whereas each state has different resources and systems for serving families with disabilities, gathering data from one concentrated area may not provide an accurate picture for parents in general. The limitations of the study give rise to possibilities for future research. An increased number of participants, especially those who are parents of CWD and SED may help draw more generalizable results and may provide more clues as to how to better support parents of CWD and SED.
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About the Authors
Julie Ramisch, M.S. is currently a doctoral student in the Family and Child Ecology department at Michigan State University. This paper is a selection from her master's thesis, which was an investigation of the relationship between family therapy and caregiver burden for parents of children with disabilities.
Thomas Pavkov, Ph.D. is currently the director of the Institute on Social and Policy Research at Purdue University Calumet. He is also an associate professor in the Human Development and Family Studies master's degree program and the Child Development and Family Studies graduate degree program in the Behavioral and Health Sciences department.
Sesen Negash, M.S. received her master's degree at Purdue University of Calumet in Child Development and Family Studies.
Joseph Wetchler, Ph.D. is the program director of the Marriage and Family Therapy program at Purdue University Calumet. He is also an associate professor in the Child Development and Family Studies graduate degree program in the Behavioral and Health Sciences department.
For further information, please contact Julie Ramisch at: firstname.lastname@example.org
Table 1: Descriptive Statistics for FRS, CGSQ, and F-Copes
Parent Strain NMean Standard Deviation
Family Resource Scale *CWD2493.76250.648
*CWD w/ SED423.48330.702
Subjective Externalized Strain*CWD2731.59980.666
*CWD w/ SED462.04350.937
Subjective Internalized Strain*CWD2773.34780.957
*CWD w/ SED483.53820.951
*CWD w/ SED462.93270.887
*CWD w/ SED482.88641.065
*CWD w/ SED443.49430.9
Acquiring Social Support F-Copes*CWD2662.67590.823
*CWD w/ SED462.62080.884
Seeking Spiritual Support F-Copes*CWD2623.05061.215
*CWD w/ SED463.24461.32
Mobilizing Family Support F-Copes*CWD2633.32510.053
*CWD w/ SED453.450.129
Passive Appraisal F-Copes*CWD2673.73130.044
*CWD w/ SED463.88040.099
Global F-Copes Scale*CWD2483.26350.498
*CWD w/ SED433.19730.631
* Children with Disability (CWD), Children with Disability with Serious Emotional Disturbance (CWD w/ SED)