Examining distress of parents of children with and without special needs.
There is a growing literature supporting the notion that birth of a child with a disability generates intense emotional distress for the family (Hughes, 1999; Pelchat & Lefebvre, 2004). Spratt, Saylor, and Macias (2007) discussed the stigma of having a child with a disability as one stressor for parents. Beyond the initial impact, "a child with a disability poses many crises over his/her lifetime.... Parents of children with disabilities must continually adapt to changing circumstances and needs of the child, with stress being a frequent consequence" (Hughes, 1999, p. 271). For this reason, Thompson and Upton (1992) reported that parents of children with a disability experience high levels of emotional distress, which can lead to symptoms of anxiety and depression that have social and emotional ramifications for the entire family (Pelchat & Lefebvre, 2004). While most people prepare for the additional financial cost of child rearing and physical changes in their living space, the emotional and psychological adjustments are often not anticipated. Even with a child who follows a typical developmental path, parents have to restructure their finances and time and redefine each family member's role (Pelchat & Lefebvre, 2004). The restructuring process presents even greater challenges for parents of a child with a disability, compounding the stress these parents experience (Harrison & Sofronoff, 2002; Hughes, 1999; Scherzer, 1999).
Although parents of children with special needs experience additional emotional distress, most families tend to regain healthy family functioning, or even thrive, and the quality of their lives resembles that of families in general (Ferguson, Gartner, & Lipsky, 2000; Stoneman & Gavidia-Payne, 2006; Van Riper, 2007). Yet despite such research findings, the notion that birth of a child with a developmental disability presents significant hardship for a family continues to frame the discourse on parenting a child with a disability (Lalvani, 2008; Marshak, Seligman, & Prezant, 1999). Parents of children with developmental disabilities do typically experience greater stress than parents with typically developing children (Hendriks, DeMoor, Oud, & Savelberg, 2000; Knapp, 2005; Smith, Oliver, & Innocenti, 2001; Spratt, Saylor, & Macias, 2007). The challenges range from the emotional distress of a diagnosis of a disability for their child (Ho & Keiley, 2003; Pelchat & Lefebvre, 2004) to coping with practical details, such as obtaining access to services for the child.
Beyond the resources that parents of a typically developing child have to seek out (e.g., pediatric care, child care, education), parents of a child with a disability must also seek out specialized resources (e.g., medical specialists, respite care, specialized child care, nursing assistance, nutritionists, and assistive devices, such as wheelchairs) tailored to the unique needs of the child. Pimm (1996) found accessing specialized resources is also likely to add financial burdens. For families already struggling financially, caring for a child who is disabled causes an even greater financial burden, ultimately increasing marital stress (Park, Tumbull & Tumbull III, 2002). Professionals working with families can benefit from a better understanding of the differences between parents of children with special needs and those without, and the unique stressors the former face. To this end, this study examines differences in individual distress, marital distress, and engagement in community support services between parents of children with special needs and those without.
In this exploratory study, 29 participants contributed data. Of these, parents of children with special needs (n = 15) represented 51.7% (mean age 40.1), and the comparison group (n = 14) represented 48.3% (mean age 35.1). The mean age for all participants was 37.7. (See Table 1 for additional demographic information.)
Marital Satisfaction Inventory-Revised. The Marital Satisfaction Inventory-Revised (MSI-R; Snyder, 1997) is a self-report instrument that identifies the type and degree of couple distress. Distress is measured separately for each partner along several dimensions of their relationship through true or false responses to 150 MSI-R inventory items. The MSI-R has proved to be useful for identifying relationship strengths and deficits and assessing families that have children with emotional or behavioral concerns. The instrument provides two validity scales (Inconsistency and Conventionalization), which require responses from both members of the couple; one Global Distress scale; and 10 scales measuring specific dimensions of relationship distress (Affective Communication, Problem-Solving Communication, Aggression, Time Together, Disagreement About Finances, Sexual Dissatisfaction, Role Orientation, Family History of Distress, Dissatisfaction with Children, and Conflict over Child Rearing).
The reliability and validity of the MSI-R have been analyzed (Snyder, 1997); the Cronbach alpha was .82. The MSI-R has also demonstrated strong convergent validity with other measures, including the Locke-Wallace Marital Adjustment Test (Locke & Wallace, 1959) and the Dyadic Adjustment Scale (Spanier, 1976). This study utilized the MSI-R's Global Distress scale; the internal consistency for that scale was .93.
Brief Symptoms Inventory (BSI). The Brief Symptoms Inventory is a 53-item assessment that measures reported levels of distress (BSI; Derogatis, 1993) using a five-item Liken scale response set, from "0" indicating "not at all" to "4" indicating "extremely." It has nine subscales and three global distress indices: Global Severity Index (GSI), Positive Symptom Total (PST), and Positive Symptom Distress Index (PSDI). The GSI was the variable used here to measure the level of individual distress. This GSI has also been used in previous studies with family caregivers (Daire, 2004; Dilworth-Anderson, Williams, & Cooper, 1999). The Cronbach alpha for the GSI was .89, and test-retest was .90 (Derogatis, 1993), suggesting high reliability.
Demographic Information Survey (DIS). The Demographic Information Survey is a researcher-designed instrument consisting of 12 items to obtain participants' demographic information, including information about their children and their family's involvement in professional services. The first 10 questions captured demographic information on age, gender, ethnicity, educational level, total number of children, and number of children with developmental or physical disabilities. Question I 1 inquired about the type and frequency of professional services received by the parent, and question 12 about the type and frequency of professional services received by their child with a special need. Question 11 asked the respondent to check one of five boxes corresponding to the number of visits in the previous six months (0-5, 6-10, 11-15, 16-20, and 20+) with different professionals (individual, couple, or family counseling; group counseling; religious support from clergy; psychiatric care; medications; and other). Each box was coded 1 through 5 and the codes were summed to create a total score for utilization of professional assistance (PPROF). Question 12 asked the respondent to check one of five boxes corresponding with the number of visits in the previous six months (0-5, 6-10, 11-15, 16-20, and 20+) their child had with different professionals (individual, couple, or family counseling; group counseling; religious support from clergy; psychiatric care; medical care; occupational therapy; physical therapy; speech therapy; and other). Each box was coded 1 through 5 and the codes were summed to create a total score for the child's utilization of professional assistance (CPROF).
We also created two variables, parent total visits (PTV) and child total visits (CTV). PTV and CTV represented the sum of the minimum number of visits within the visit range categories. For example, if a parent indicated that within the past six months their child had 15-20 visits with the speech therapist, 6-10 visits with the occupational therapist, and 1-5 visits with a physical therapist, we recorded the CTV score as 22 (15 + 6 + 1). The last question on the DIS asked how often participants used the Internet and magazines or books for information or support.
After the Institutional Review Board at the primary researchers' university approved the study, the research team identified parents of children with special needs as potential participants using a random sampling approach at select sites. We created research packets that contained two copies of the informed consent form, instructions, one copy of the DIS, one copy of the BSI, and one copy of the MSI-R along with a self-addressed stamped envelope and instructions to return one signed copy of the informed consent and the two instruments to the primary researcher. To find parents of children with special needs who might participate, we identified eight organizations in a southeastern metropolitan city that provided services and support for parents of children with physical or developmental disabilities. We randomly selected four of these and asked if they would be willing to distribute study-related materials to parents of children with special needs. We mailed 20 research packets to each of the two organizations that agreed. To obtain participants who were parents of children without physical or developmental disabilities, we identified organizations that offered parenting groups and randomly selected five for participation, which all agreed to distribute them to parents. We mailed 20 research packets to each of the five. The organizations were asked to provide an initial screening by distributing the surveys only to parents that met the criterion of being a parent of a child with or without special needs. In all, 140 packets were sent out.
From this convenience sample, 29 participants contributed data, a 20.7% participation rate. The participation rate for parents of children with special needs was 37.5%, with 15 parents returning the research packets. Of parents of typically developing children that received research packets, 14 returned completed packets, a 14% participation rate.
We conducted independent t-test analyses to examine differences between the two groups related to the independent variables of individual and relationship distress and the dependent variable of whether or not their children had special needs. We conducted a one-way between-groups analysis of variance to explore differences between the two groups related to the independent variable of number of health-related visits for children during a six-month period and the dependent variable of whether the children had special needs.
Variables of interest in this study included the BSI's Global Severity Index, the MSI-R's Global Distress Scale, and the PTV and CTV for both groups. Table 2 presents means, standard deviations, and confidence intervals for these variables. The study had one research question: What differences exist among variables for individual distress, marital distress, and engagement in community services between parents of children with and without special needs? According to Stevens (1996), when working with smaller sample sizes it may be necessary to adjust the alpha level from the traditional .05 to .10 or .15. Thus, for the two analyses we conducted, we adjusted the alpha level for significance to. 15.
The first analysis investigated differences in individual distress, as measured by the BSI-GSI, and marital distress, as measured by the MSI-GDS, between parents of children with special needs and those without. We conducted a one-way between-groups analysis of variance to explore differences in BSI-GSI and MSI-GDS. There were no statistically significant differences for the BSI-GSI, F(1, 27) = 1.08, p = .31, or the MSI-GDS, F(1, 27) = .34, p = .56. Thus, there were no differences in global distress scores between the two groups. However, the post hoc power analyses conducted using GPOWER (Erdfelder, Faul, & Buchner, 1996), a statistical software package, indicated that the power was .36, suggesting only a 36% chance of detecting a difference. Thus, caution should be exercised in failing to reject this first null hypothesis.
The second analysis tested for differences in the total amount of support services used in the previous six months by the parents, as measured by the PTV, and by the child, as measured by the CTV. In a one-way between-groups analysis of variance to explore differences, we found no significant difference for PTV, F(1, 27) = 1.80, p = .191. The post hoc power analysis using GPOWER indicated a power of 47%. However, there was a statistically significant difference in the CTV scores, F(1, 27) = 49.98, p < .001, between parents of children with special needs (M = 13.07, SD = 6.83) and those without (M = .29, SD = .47). With a large effect size for this finding using eta squared of .65 (Cohen, 1988), approximately 65% of the variance in the CTV number can be attributed to whether or not a parent has a child with special needs.
Research has established a need for studies examining specific factors that contribute to marital distress among those parenting children with special needs to identify areas of support (Risdall & Singer, 2004). Risdall and Singer also pointed to the need for research directed to identifying specific areas where family support should be provided. The purpose of the present study was to examine dimensions of distress between parents of children with disabilities and parents of children without. Although previous research indicated that parents of a child with special needs experience significantly higher marital distress than parents of children without (Knapp, 2005; Witt, Riley, & Coiro, 2003), our findings found no significant difference in individual and marital distress. However, there were problems with the power in this analysis. These findings should be interpreted with caution, especially considering research with larger sample sizes that found different results. It is unclear what contributed to the lack of statistically significant difference beyond sample size. From a power perspective, there was only a 36% chance of detecting any difference related to the global distress scores of the two groups.
However, parents who are raising a child with a disability experience caregiving demands that go beyond the typical demands of parenting. Despite the small sample size, we found a significant difference, with a very large effect size, between parents of children with special needs and those without in the number of visits to healthcare professionals. The mean number of healthcare visits in a six-month period for children with special needs was 50.47 compared to 0.29 for children without special needs. This statistically significant difference underscores how caring for a child with special needs can affect other areas of family functioning. This finding supported previous studies indicating that parents of children with special needs face disproportionate time constraints. Further, time together was previously identified as a crucial element in marital satisfaction (Russell-Chapin, Chapin & Sattler, 2001).
A high number of healthcare visits would also imply additional costs. In a survey of more than 1,100 families who had a child with a disability, Beresford (1995) found that families with children who have special needs incurred added costs related directly to the child's disability for medical treatment, special equipment, hospital visits, babysitting, and even special treats for the other children to make up for the lack of attention to them as a result of preoccupation with the child that has a disability. A study in the United Kingdom found the average cost of raising a child with a disability to be three times higher than that of raising a typically developing child (Dobson & Middleton, 1998). The reduction in wages and reduced career fulfillment issues for a partner who may have to give up a job to stay home and care for the child with a disability may also have far-reaching negative effects on marital relationships and increase discord between partners. The extensive time commitments for healthcare visits for children with special needs in addition to the costs and the time lost from work present opportunities for intervention.
Implications for Practice
The results of this study can help counselors empathize with the demands on the time of parents of children with special needs. Counselors can help struggling parents and families by assessing for strengths, such as social support, coping skills, effective parenting, and parental relationships, and then use the strengths identified to improve areas that are less strong. An anticipated outcome of this kind of intervention would be improved marital relations between couples, which would in turn enhance family interactions.
In offering support services for parents of children with a disability, it is important that counselors have a clear understanding of what kind of help will be beneficial. According to Kerr (1984), offering help does not depend solely on the good intentions of the helper but should be informed by the needs of the recipients. Counselors working with parents of children with special needs should use the literature, experts, and advocacy groups to educate themselves on the needs of parents raising children with special needs and on viable helping options. Prenzant and Marshak (2005) noted that while parents of children with disabilities need a wide range of support services, they may not always agree with service providers about what constitutes helpful actions by providers. Thus, counselors should integrate what they learn from the literature and their experiences with what parents communicate as their needs.
One approach is for counselors to focus their work with families of children with special needs on identifying strengths within the couple or the family (Daire, Wade, Carlson, Munyon, & Robertson, 2010). Daire and colleagues identified four domains that are present in well-adjusted parents of children with special needs: (a) social support, (b) positive coping skills, (c) parental relationship adjustment, and (d) effective parenting. They recommend using a model such as the integrative model for brief couples counseling (Young & Long, 1998) to assess for strengths within each domain, identify areas of growth, and create a treatment plan to build each domain within the family (Daire et al., 2010). Utilization of the integrative model requires that the counselor help the couple externalize the problem and form a shared goal (Young & Long, 1998), so that the couple works as a team to alleviate the stressors associated with parenting a special needs child.
The findings of this study show that parents of children with special needs attend a significant number of medical appointments, which likely reduces the time they have to spend together. As a result, they may struggle to find time to incorporate social support into their family structure. It is likely the counselor will need to work with the client on ways to increase social support and create opportunities for the couple to spend more time together. To assist with competing caregiver demands, Daire, Torres, and Edwards (2009) suggested helping family members cope by "reestablishing equilibrium" (p. 75) and adjusting to new roles. They also suggested that counselors work with parents to increase problem-focused coping skills in order to change stressful situations and decrease emotion-focused coping skills, such as denial, avoidance, or suppression (Daire et al., 2009).
The developmental needs of children, especially those who are developing atypically, are numerous and complex, often requiring that numerous people, starting with the parents, be involved in assessment, treatment, and nurturing (Woodruff & McGonigel, 1988). Transdisciplinary assessment gives parents and professionals an opportunity to be involved together in assessing and planning treatment for children. Assessment by transdisciplinary teams is characterized by parents and professionals from various fields (e.g., physical, occupational, and speech therapy) working together in one location to achieve, communicate, and understand the issues and to plan and implement coordinated treatment (King et al., 2009). Transdisciplinary teams are recommended for assessing and intervening with children with multiple needs (American Speech-Language-Hearing Association, 2005; Pena & Davis, 2000). Related to the findings in this study, such teams could act as a one-stop assessment and treatment approach that could cut down on the average of 50 visits that children with special needs make during a six- month period. Moreover, the mean number of PTV over a six-month period to address their own parental or relational needs (individual, couple, or family counseling; group counseling; religious support from clergy; psychiatric care; medications; and other) was 1.93. Fewer CTV may release time for parents to care for their own and other family needs.
Limitations and Future Research
One limitation of the study is the lack of diversity among participants. More than 65% were White females and only 7% African American/Black. Another limitation was the small sample size, 29, which limits the extent to which the findings can be generalized. However, this is a difficult population to sample due to the time and other challenges of their caregiving role. The results still have value in pointing a direction for intervention and as a model for future study. Successfully addressing the unique recruitment challenges would allow future research to benefit from a larger sample, permit more in-depth examination across different populations, and be more representative.
This study nevertheless serves as a launching point for future research, which should not only utilize larger samples but also focus on the outcomes of specific approaches. For example, although a literature review has identified domains present in well-adjusted families of children with special needs, what approaches are effective at establishing these domains? There is also a need to identify which domains are present within families, and to what extent. Such an assessment would give counselors enough information to develop a treatment plan aimed at using the strengths of a couple or family to promote needed growth. Finally, more research should be conducted on best practices to recruit and retain families of children with special needs in research. As these findings show, parents of children with special needs must make large numbers of medical and therapeutic visits. Strategies to partner with or collect data at centers that serve children, especially while parents wait, might generate greater response rates and larger samples. Additionally, partnerships with centers that take a variety of insurance carriers, including Medicaid, and with both rural and urban centers can help make samples more diverse. A common clinical phrase is to "meet clients where they are." Counselors and researchers need to embrace this literally as well as figuratively.
Helping couples decrease the parental demands on them can increase their marital satisfaction and the overall family interaction, especially when parents are caring for a child with special needs. Support for this population should aim to enhance the amount and quality of time parents spend together as a couple. Some examples include marriage and relationship education (Hawkins, Blanchard, Baldwin, & Fawcett, 2008) and date nights (Aria & Alp, 1997, 2008), as well as financial advice and respite care (Hendriks, DeMoor, Oud, & Savelberg, 2000; Palisano et al., 2010). Counselors might challenge parents to draw up a self-care plan that addresses these two areas. Spending time together every week, seeking out support systems for child care, and taking time to evaluate their marital satisfaction may improve the quality of their relationship.
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Andrew P. Daire, Matthew D. Munyon, and Ryan G. Carlson are affiliated with the Department of Educational and Human Sciences, University of Central Florida; Muthoni Kimemia with the Department of Educational Psychology & Special Education, Southern Illinois University; and Michelle Mitcham with the Department of Psychological and Social Foundations, University of South Florida. Correspondence regarding this article should be addressed to Andrew P. Daire, Ph.D., UCF Counselor Education & UCF Marriage & Family Research Institute, P.O. Box 161250, Orlando, Florida 32816-1250. E-mail: email@example.com.
Table 1. Participant Demographic Information (N=29) Parents of Parents of Children Children With Without Special Special All Needs Needs Participants Variable % N % N % N Gender Male 40.0 6 21.4 3 31.0 9 Female 60.0 9 78.6 11 69.0 20 Education High school 20.0 3 35.7 5 27.6 8 College 46.7 7 35.7 5 41.4 12 Graduate 33.3 5 28.6 4 31.0 9 Ethnicity White 80.0 12 50.0 7 65.5 19 Black 0 0 14.3 2 6.9 2 Hispanic 13.3 2 35.7 5 24.1 7 Asian/ Pacific Isl. 0 0 0 0 0 0 Not known 6.7 1 0 0 3.4 1 Marital status Married 93.3 14 85.7 12 89.7 26 Single 0 0 0 0 0 0 Separated 0 0 0 0 0 0 Widowed/ Divorced 6.7 1 14.3 2 10.3 3 Table 2. Means (M), Standard Deviations (SD), and Confidence Intervals (CI) of Variables of Interest Parents of Children With Special Needs M (SD) [CI] Brief Symptom Inventory Global Severity Index .75(.86) [.27,1.221 Marital Satisfaction Inventory-R Global Distress Scale 52.2(10.9) [1.72, 9.6] Parent total visits (PTV) 1.93(5.1) [-.88, 4.75] Child total visits (CTV) 50.47(26.5) [35.8, 65.2] Parents of Children Without Special Needs M (SD) [CI] Brief Symptom Inventory Global Severity Index .47(.56) [.14,.79] Marital Satisfaction Inventory-R Global Distress Scale 50.5(8.7) [1.19, 7.4] Parent total visits (PTV) .9(1.9) [-.47, 2.3] Child total visits (CTV) .29(.47) [.02, .56]
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|Author:||Daire, Andrew P.; Munyon, Matthew D.; Carlson, Ryan G.; Kimemia, Muthoni; Mitcham, Michelle|
|Publication:||Journal of Mental Health Counseling|
|Date:||Apr 1, 2011|
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