Authors: Lijing Ouyang, Scott D. Grosse, Catharine Riley, Julie Bolen, Ellen Bishop, Melissa Raspa, and Donald B. Bailey
Read the full article from Research in Developmental Disabilities
A Comparison of Family Financial and Employment Impacts of Fragile X Syndrome, Autism Spectrum Disorders, and Intellectual Disability
There are a variety of factors that play a role in how having a child with a disability, such as Fragile X syndrome (FXS), affects the family. These factors include characteristics of the child (e.g., age, severity of disability, extent of behavior problems), the family status (e.g., parental education, parent mental health, maternal genetic status, financial resources, social support systems, number of children with a disability), educational and employment opportunities for the child with FXS, and life events not directly associated with FXS (death of a parent, divorce, job layoff or transition). These factors inevitably interact in complex ways to shape adaptation, both positively and negatively.
This study shows that family caregivers affected by FXS are significantly more likely to report financial burden and to quit their job or cut working hours because of the condition than family caregivers affected by ASD only or ID only. Despite the complexity of these causative influences on family adaptation, a persistent and largely unanswered question is whether families who have a child with one form of disability as a group are more or less affected by their child’s particular condition than families who have a child with another form of disability. The literature on the family financial and employment impacts of caring for children with disabilities has primarily focused on autism and intellectual disability (ID).[1, 2, 3, 4, 5, 6] It has been shown that caregiver financial and employment impacts are greater in families with children with special health care needs (CSHCN) and autism compared to other CSHCN. [7] Among families of children with ID, such impacts appear to be greater among families of children with autism, cerebral palsy, hearing or vision impairment. There are far fewer published studies of the impacts on families of FXS, perhaps because of the challenges in collecting needed data for rare conditions like FXS. These studies are based on convenience samples and have shown that families affected by FXS experienced a significant negative employment and financial impact, as well as elevated rates of maternal depression, anxiety, stress, and lowered quality of life.[8, 9]
Despite the documented association among FXS, ID, and autism, fine-grained analysis has revealed very different developmental, behavioral, and cognitive profiles of FXS from those found in persons with autism only. Family impacts of FXS may be greater than autism spectrum disorder (ASD) or ID alone because of the complex nature of FXS. Studying the family impact of FXS compared with ASD or ID could help put into context the needs of families affected by FXS, and inform the broader discussion on early and differentiated diagnosis, care, and services for FXS.
This study aimed to compare the family caregiver financial and employment impacts of having children with FXS (total of 189 families) to children with ASD and ID (178 families), ASD only (185 families), or ID only (177 families), using similar questions asked in an FXS caregiver survey and National Survey of Children with Special Health Care Needs (NS-CSHCN) 2009-2010. We tested the hypotheses that familial caregiver economic impacts of children with FXS are similar to those of children with both ID and ASD, but greater than those with ID or ASD alone. We also investigated the role of affected children’s functional limitations (learning, communication, socialization) and co-occurring conditions (depression, anxiety, and seizures) on financial and employment impacts.
Significant differences were observed in reported financial and employment impacts. Overall, more than 60% of caregivers of children with FXS reported that their child’s condition caused an excessive financial burden on their families, compared with 52% of parents of children with ASD and ID, 39% of parents of children with ASD only, and 29% for ID only. With regard to the most serious caregiver employment impact when a parent or other family member feels obliged to quit paid employment because of the child’s condition, approximately 40% of caregivers of children with FXS said that they or another family member had quit working, as did 46% of parents of children with both ASD and ID and 25% of children with either ASD only or ID only. Almost 64% of caregivers of children with FXS reported changes in work hours, as did 48% of caregivers of children with ASD and ID, and 36%of caregivers of children with ASD only or ID only.
Clinicians and other service providers need to acknowledge the multitude of factors that contribute to elevated levels of family financial burden and employment impacts of FXS. When functional and co-occurring conditions were examined, significantly higher percentages of children with FXS (80%) and children with both ASD and ID (85 %) were reported as having fair or poor overall abilities in comparison to ASD only (54%) or ID only (71%). A higher percentage of children with FXS (48%) reported behavioral problems than other groups (range: 16–38%). A lower percentage of children with FXS (37 %) were reported as having a lot of difficulty making or keeping friends compared to children with ASD only (50%) or children with both ASD and ID (60%). As high as 67% of children with FXS were reported as diagnosed with anxiety, significantly higher than any other comparison group (range: 25 3.9%).[10] In contrast, only 5% of children with FXS were reported as diagnosed with depression, significantly lower than any other comparison group (range: 15.3–21.6%). About 12.6% of children with FXS were reported as diagnosed with seizures, higher than children with ASD only (7%), but lower than children with ID and ASD (25.8%) or ID without ASD (20.9%).
When examining group differences, results showed that having a child with FXS was significantly associated with caregiver financial burden and reduced working hours in reference to any of the other three comparison groups for children aged 12 to 17 years. For example, the odds of reporting financial burden for having a child with FXS were 2.61 times as large as the odds of reporting financial burden for having a child with ID only. In contrast, there was essentially no difference across ASD, ID, or both in terms of reported financial burden or change in working hours. For children aged 5 to 11 years, having a child with FXS was significantly associated with caregiver financial burden and reduced working hours in reference to the ID only group, but the odds ratios were insignificantly elevated relative to the ASD only group or ID and ASD group.
When functional difficulties and co-occurring conditions were examined individually, caregivers of children ages 5 to 11 with fair or poor ability in learning/understanding/paying attention were more than twice as likely to report financial burden and more likely to report reducing working hours. Those caregivers who reported their child had higher levels of irritability were more likely to report reduced working hours, whereas caregivers whose children had a harder time making friends reported higher levels of financial burden. Caregivers of children ages 12 to 17 who had depression, anxiety, or seizures were more likely to report financial burden.
In summary, this study shows that family caregivers affected by FXS are significantly more likely to report financial burden and to quit their job or cut working hours because of the condition than family caregivers affected by ASD only or ID only. Co-occurring conditions such as anxiety and seizure, and functional limitations in learning or behavior are important factors in these family impacts. These results point to the importance of acknowledging the interactions of cognitive, behavioral, and psychosocial problems when investigating potential consequences for families of individuals with conditions such as FXS. Both factors related to children with FXS and factors related to their caregivers may be associated with greater family impact in children with FXS. Clinicians and other service providers need to acknowledge the multitude of factors that contribute to elevated levels of family financial burden and employment impacts of FXS.
