A focus group study was conducted to develop an understanding of the experiences of mothers who are trying to balance employment with caring for an adolescent with developmental disabilities. Mothers reported facing considerable difficulties balancing work and caregiving responsibilities because support services rapidly declined when their child reached adolescence. Service cuts were related to the fact that adolescents are expected to be able to care for themselves, despite the fact that for many adolescents with disabilities, this is not possible. The mothers also reported that the preponderance of the responsibility for arranging care for their children was theirs and was not shouldered by their partners. Policy implications are discussed.
Working mothers have become a permanent fixture across all socioeconomic strata of U.S. society. Consequently, in the burgeoning literature, researchers describe the juggling act of balancing mothers' employment, caregiving, and household tasks; and they acknowledges the interconnectedness of these multiple roles. The roles of parent, partner, and keeper of the household influence an individual's employment, just as the role of employee affects one's home life. The intertwined connections of the multiple roles assumed by most U.S. adults are at the crux of this interest.
The notion of mothers' lives as juggling acts— where competing work and family responsibilities exist in a dynamic struggle that must somehow be balanced—has become common parlance. Feature articles in popular magazines and daily newspapers routinely describe the enormous challenges that mothers of typically developing children face in trying to achieve some sort of balance between their work and family responsibilities. Yet very little evidence exists related to the same issues faced by mothers raising children with developmental disabilities. Moreover, the challenges faced by families of adolescents with developmental disabilities are even less well-understood. Unlike typically developing children, who are expected to be able to supervise themselves as they age, children with developmental disabilities often require support and supervision throughout adolescence and adulthood. Even though the care needs of children with developmental disabilities do not necessarily diminish with increasing age, traditional support services, such as child care and after-school programs, often cease when children reach adolescence.
This preliminary study was undertaken to develop an understanding of how mothers of adolescents with developmental disabilities balance their work and family responsibilities. This inquiry was focused on two primary research questions: What forms of child care are available to working mothers of adolescents with developmental disabilities? How do mothers of adolescents with developmental disabilities balance their work and caregiving responsibilities?
Extensive research has documented the psychosocial consequences of raising children with disabilities as well as the coping mechanisms parents use to mitigate associated stressors and fulfill their caregiving responsibilities (e.g., Neely-Barnes & Marcenko, 2004; Noojin & Wallander, 1997; Seltzer, Greenberg, Floyd, Pettee, & Hong, 2001).
Somewhat less attention has been focused on how parents manage the financial impact of raising children with disabilities. However, the limited existing research makes clear that the costs of childhood disability are high in the United States (e.g., General Accounting Office, 1999; Kuglthau, Hill, Yucel, & Perrin, 2005; Newacheck & Kim, 2005). There is some evidence that the high costs persist as the child ages, and the elevated costs are related to maternal employment (Parish, Seltzer, Greenberg, & Floyd, 2004). Absent from the research is evidence of how mothers manage employment and caregiving when their children with disabilities become adolescents. The development and design of this study was influenced by two primary domains of research: work–life theoretical perspectives and the existing evidence of maternal employment in families raising children with disabilities.
The evidence that describes the interface between employment and home life is characterized as work–life research. Much of the work in this field has been conducted from the theoretical approaches of role conflict and role enhancement. Prominent analysts in the work–life field have argued that a life course perspective must be considered by researchers in this area (Sweet & Moen, 2006); therefore, this is the standpoint I describe here.
Role conflict theory is the more frequently employed standpoint in work–life research. Based on the premise of limited parental resources, theorists in this tradition argue that work and home life are inherently incompatible (Barnett & Gareis, 2006). Within this framework, work and family responsibilities are viewed as competing demands on a parent's time and, thus, are most acute for women because they still shoulder the vast proportion of responsibility for caregiving and housework (Williams, 2000).
If role conflict theory has currency in families of children with developmental disabilities, the discordant roles of mother and worker are likely to be particularly acute. Heightened levels of incongruity may exist because of the elevated care needs of children with developmental disabilities coupled with the fact that these care needs typically continue through adolescence and into adulthood. This perspective is supported by past studies in which researchers reported that mothers often reduce their work hours solely to accommodate the care needs of their child with developmental disabilities (e.g., Shearn & Todd, 2000).
The role enhancement hypothesis is an alternate theoretical framework (Barnett & Gareis, 2006) that assumes the multiple roles of caregiver, homemaker, and employee are not inherently negative. These theorists argue that individuals with multiple roles accrue numerous benefits, including positive mental and physical health as well as better relationship outcomes. Carmichael and Charles (1998) theorized that employment offered working mothers of children with disabilities respite from the demands and stresses associated with their caregiving duties. If role enhancement perspectives are evident in families raising children with developmental disabilities, parents might exhibit less stress in their caregiving roles because of their work.
Finally, there is a critical need to center work– life research in families' developmental trajectories because family life changes over time as children age and their care needs alter. Similarly, parents who take on caregiving for elders undergo further changes to their home roles and responsibilities. The life course perspective (Sweet & Moen, 2006) requires researchers to consider the family life cycle context in which parents and children are situated. Understanding families' varying circumstances as children age is the most prominently employed mechanism for approaching life course research. However, when such work is related to people with developmental disabilities, a more nuanced understanding of family trajectories is required that also considers parental milestones (Seltzer, Greenberg, Floyd, Pettee, & Hong, 2001) because the care needs of these children do not diminish as they age.
In the present study I addressed these theoretical perspectives by investigating whether support exists for both the role conflict and role enhancement theories in families raising children with developmental disabilities. I chose to examine the perspective of mothers raising adolescent children with developmental disabilities not only to address the paucity of research in that area, but also because adolescence represents a point of major divergence in the life courses of families raising typically developing children and those raising children with disabilities.
Several factors influence the likelihood that mothers of typically developing children are employed. Research shows that maternal employment levels tend to be reduced by having more and younger children (Waldfogel, 1997), whereas higher wage rates, which are closely associated with educational level, tend to increase rates of maternal employment (Blau & Robins, 1991).
To accommodate their responsibilities as both mothers and employees, women typically use three mechanisms beyond securing paid child care: They reduce their work hours, terminate their employment, or shift to positions with fewer responsibilities (Moen, 1992). However, these strategies also substantially reduce women's income.
Although the impact of children on women's employment is well-understood (Waldfogel, 1997), few researchers have examined maternal employment when children have disabilities. Caring for a child with disabilities typically affects maternal employment in ways that parallel having multiple young children with no disabilities, including reducing the likelihood of employment or substantially reduced hours of employment. Recent research established evidence of diminished work participation among families raising children with disabilities (e.g., Heck & Makuc, 2000; Kuglthau & Perrin, 2001; Thyen, Kuhlthau, & Perrin, 1999). In addition, other investigators found reduced employment among parents of children with severe, but not moderate, disabilities (Lukemeyer, Meyers, & Smeeding, 2000; Wolfe & Hill, 1995).
Mothers of children with disabilities most frequently have reported two primary obstacles to working: unavailable, unaffordable child care (e.g., Shearn & Todd, 2000) and the elevated time demands of their caregiving responsibilities (e.g., Einam & Cuskelly, 2002; Read, 2000; Thyen et al., 1999).
However, other research evidence contradicts the notion that having children with disabilities automatically confers employment penalties to the mothers. Walker, Ortiz-Valdes, and Newbrough (1989) found no differences when the employment among mothers raising children with mental retardation or chronic illnesses was contrasted with employment of mothers raising typically developing children. Loprest and Davidoff (2004) found that parental employment was reduced in families of children with activity limitations, but not in families of children with other disabilities. In a study examining employment in a nationally representative United States sample, Porterfield (2002) not only found that the negative effect of having a young child with disabilities diminished as the children aged, but also found that no significant differences existed among mothers of children older than 6 years.
In other research, Carmichael and Charles (1998) found that mothers reported benefits associated with employment. Using a nationally representative sample of British women, they reported that unpaid caregiving responsibilities were shown to increase the likelihood of employment, a finding attributed to the incentive of added income as well as the respite from caregiving offered by employment. In another study, Lewis, Kagan, and Heaton (2000) reported that mothers raising children with disabilities reported that both the financial and psychological benefits of working motivated them to continue their employment.
In a longitudinal study, Parish et al. (2004) investigated how the employment of mothers of children with developmental disabilities diverges from employment patterns of other mothers over the life course. Following the birth of their child, mothers of children with developmental disabilities returned to full-time employment more slowly than did mothers of children without disabilities and were less likely to have employment durations of more than 5 years.
This latter study is the exception because Parish et al. (2004) examined the mother's entire employment career, including the period when the children with disabilities were adolescents, whereas most researchers had focused on the employment of mothers of young children. Research has not yet illuminated how women manage employment and caregiving while their children with developmental disabilities are adolescents.
I conducted a focus group study with mothers of adolescents with developmental disabilities. Two focus groups with two sets of participants were carried out in a single suburban county. One session was held in a local library's private meeting room; the other was held in a private meeting room at a local university.
A focus group methodology (Krueger & Casey, 2000) was chosen to yield an array of perspectives and attitudes. In past research, mothers of children with developmental disabilities reported feeling isolated; therefore, the focus groups served a dual purpose of connecting the participants and enabling them to build on others' experiences and to share their own. Small groups have great potential to elicit nuanced and unanticipated responses, as well as group viewpoints.
Demographic data were gathered through brief written questionnaires that participants completed after providing informed consent and agreeing to maintain their group's confidentiality. The interview guide included open-ended questions addressing the central research questions related to maternal employment, social support, leave time, and child care for the child with disabilities. Questions were designed to encourage participants to provide expansive responses. In addition, polling techniques (Vaughn, Schumm, & Sinagub, 1996) were employed to ensure that all participants contributed to the discussion. Identical questions were posed to both groups, with individualized probes and clarifying questions used as necessary.
A consultant on the project helped formulate the focus group protocol and subsequently served as the facilitator for both focus groups. This facilitator has considerable years of experience leading focus groups related to an array of health care and intervention research projects. The author, who served as observer and note taker, also participated by clarifying questions as necessary. The focus groups were audiotape recorded and transcribed; the accuracy of the transcript was verified by the author.
Focus group participants were recruited via flyers mailed from a local disability service organization to all mothers of children with developmental disabilities ages 13 to 18 years served by the agency. Approximately 30 invitation letters were mailed. Women were eligible for inclusion in the study if they were the biological or adoptive mothers of a child with developmental disabilities and lived with their child with disabilities. A total of 10 mothers responded to the flyers and contacted the author by telephone. All 10 were eligible and invited to join the focus groups, and they all confirmed their intent to participate. Eight women subsequently participated. Five mothers participated in the first focus group, and 3 in the second.
Supervised activities were provided for the children by the local service organization during the focus group sessions to encourage the mothers to participate in the study. The mothers also received a $25 honorarium to compensate them for their time.
Table 1 provides demographic details of the sample. All mothers who participated were White. Two lived in households with total income below twice the federal poverty level (which is traditionally termed low income in the United States). The children's impairments were autism spectrum disorders, mental retardation, Down syndrome, and/or multiple impairments. Two of the adolescents with autism spectrum disorders had Asperger syndrome and were fairly independent in their functioning. All of the other children had severe impairments across several functioning domains. The women ranged in age between 45 and 67 years; their children's ages, from 13 to 17 years.
I developed an initial coding framework based on the role-conflict and role-enhancement theories that underpin the study. Along with another investigator, I then used this framework to independently code the transcripts for themes relevant to the research questions. Although the framework was used as a starting point, it was not exclusive, and new codes were generated as needed. Working definitions were iteratively assigned to each code, then expanded, and ultimately collapsed, to encompass all relevant themes as coding ensued. The constant comparative method was used (Glaser & Strauss, 1967). With this method, the codes and working definitions were iteratively evaluated against the data and against one another to confirm that they captured participants' meanings. When saturation was achieved and new codes ceased to emerge, the two investigators reviewed the coded transcripts and reached agreement on the coding of all passages. Refinements were made until consensus was achieved regarding the coding of all transcripts. The codes were then divided into four organizing categories.
Four categories of themes emerged from my analysis of the focus group data: service issues, work-related issues, care-related issues, and maternal responsibility. These categories are substantively interrelated; the delineation of categories is not meant to create the impression of distinct compartments in the women's lives but, rather, to simplify presentation and interpretation of the findings.
A number of themes emerged related to the receipt of family support and other services, including services received specifically for the women's adolescent child with developmental disabilities. These themes included gratitude for services, the inadequacy of existing services, the perception that service agencies are unresponsive to families' needs, the need for advocacy skills to secure services, and a decline in available services for adolescents.
Both focus groups expressed uniform opinions about the services available to support families caring for children with developmental disabilities. All mothers agreed that receipt of support services was extremely helpful for them and for their families, and several participants expressed gratitude for the services they received. However, all participants concurred that the existing services were inadequate. Service inadequacies were particularly acute during the summer and on days when schools are closed because finding child care posed recurring problems. Mothers of children with the most severe behavioral or physical impairments faced additional challenges getting support for their children when school was closed. In addition, participants agreed that securing services and caregivers caused ongoing stress.
Mothers concurred that the supports they received from local disability service organizations were critical to managing family life. Helpful services included respite care, summer programs, after-school care (available for younger children), and training services funded through Medicaid. Discussion of the services and support received from their child's school and from the vocational rehabilitation system revealed greater degrees of divergence among the mothers. Although the focus groups were held in a single county, the children were enrolled in several different schools across various school districts that did not offer uniform services. However, only one mother felt the services she received from her son's school were satisfactory; all other mothers perceived the school programs as inadequate. Mothers identified such inadequacies as inappropriate curricula for the child's needs, late or missing transition planning, and a failure to provide individualized plans.
The mothers also described inadequacies related to the spectrum of services available, including those from local disability services providers, schools, and vocational rehabilitation. The most critical and commonly voiced concerns were related to the difficulties encountered in securing care or services for their child, the absence of child care or services when school was closed, and the drastic decline of services when the child reached adolescence.
The participants also expressed frustration with the failure of service providers to recognize that their child's needs were lifelong. The women felt that nearly all services were designed using the model of typically developing children, ignoring the extended care requirements of children with developmental disabilities. In addition, the mothers felt that government had a responsibility to provide funding and support for families with children who have developmental disabilities. One mother spoke for many when she explained:
The thing that is so frustrating … is that it doesn't end. Our children who are not disabled … I'm not arranging things for her. … at 10 years old she came home and did what she needed to do, and I did not have to supervise someone else to oversee her activities. I don't see any end in sight of this, and I have a high functioning kid who is very independent, but there is so much planning involved … Why are the services for people like us and our families not provided by our government? [The Medicaid program] is somewhat a response to that, but … it is not consistent.
The women concurred that they faced ongoing struggles to ensure that their child continued to receive services. A comment of one mother was typical, “You have to do all the legwork, you have to … keep calling until you find somebody. … it's putting much more of the onus on the parents.” Another mother added, “If the parents didn't have to spend all their time figuring out the system, it would be easier for us to work.”
High turnover rates among careproviders were reported as another burden unique to working mothers of children with disabilities. Frequent caregiver turnover added to the mothers' own caregiving responsibilities and heightened their anxiety about the continuity of care their child received.
The women reported wanting improved communication and seamless services among the different organizations that provided services, but none had experienced any form of coordination of care or support services. The mothers frequently served as conduits between the different organizations that served them and their families. Many participants expressed the desire for a centralized system that could respond more quickly to their needs as well as show greater resilience to unforeseen circumstances, such as illness or weather emergencies.
Respondents overwhelmingly agreed that adolescence posed new challenges related to receiving supports because of the abrupt age-related decline in available services. The decline in services included aging out of Saturday programs, long waiting lists for teen nights, and aging out of after-school programs. Several mothers noted that they were able to maintain employment when their children with disabilities were eligible for after-school programs, but they were not able to continue working when their child aged out of such programs. The women's concerns about the precipitous end of programs when children reached adolescence were universal. One woman reported: “[The programs] stop when you're 12 years old, and … it's like, ‘Well, too bad—you can't have that.’” Another mother explained how her son was expected to have the same needs and abilities as typically developing, same-age peers:
I think middle school years and high school years are really much more difficult because there are so many less services provided for kids in general of those ages. It's just assumed if you have a 14-year-old, they come home with a key after school and go home, and are either unsupervised or have some other kind of programming that's just totally inappropriate for our kids.
One mother summed up the group consensus: “We were given the supports when [the children were] younger. Get to high school, it disappears. We need supports more when the kids are in high school, but it's gone.”
Three key work issues emerged: (a) the mother's work responsibilities directly conflicted with their caregiving responsibilities, (b) women viewed work as emotionally important as well as financially critical, and (c) women had reduced their work hours or work responsibilities in order to meet their caregiving responsibilities.
The mothers most frequently reported that the enormous stresses associated with balancing work and managing their family responsibilities arose from difficulties in finding consistent, quality care for their child with developmental disabilities. A common thread in the discussion was that mothers not only had to juggle their own schedules, but also had to juggle the schedules of various careproviders to successfully piece together child care. The inability to secure adequate child care was given most frequently as the reason why women reduced or ended their employment. A typical comment included the following:
I've missed a lot of work, I've had to cut back my hours. … I guess it kinda depends on your child's disability. … I take off almost every teacher workday … because I just get so exhausted trying to find people and piece things together—this sitter has morning classes and this sitter has afternoon classes, so maybe we can kinda sorta piece something together … I cut back my work to three-quarter time when Evie was in I guess 7th grade. … I just couldn't find sitters that were reliable. … it's very stressful, you just never know when a sitter is going to fall through, or you're going to get a call to pick up your child, or you know, same thing if your kid is sick or whatever, you can just leave them at home if they're 14, but I can't leave her at home. There have been so many times that I have missed work because of whatever careprovider arrangements falling through, or just no careproviders.
Participants noted that trying to balance work and child care not only influenced their work hours but also the type of employment they sought and the level of work responsibility. One mother explained the stresses of trying to combine work and caregiving:
I substitute teach, I taught part-time, I tried being a realtor, I tried to do all those rounds. … It's just all these jobs that were just too demanding to try to hold things together at home, because I'm the one who holds things together. … I got a 20 hour a week job, it's very simple.
Attempting to fit a work schedule around their child's care needs was a commonly reported strategy. One mother shared:
I work part-time. I've worked in the past, but it would only be just for [a] limited amount of time because child care specifically for him was not available. I work part-time now, but I work self-employed so that I can work around his schedule.
Two of the women took advantage of flexible work schedules to accommodate their child's care needs. However, the other women did not have employers who permitted flexible work schedules.
The limited availability of care in the hours before school became a prominent problem as the children reached adolescence and entered high school. Privately hiring careproviders was an option for a few women, but most mothers indicated that this was not financially feasible. One mother reported keeping her daughter in middle school for 2 extra years because the school's earlier start time provided sufficient care and supervision in the morning. Participants expressed frustration that even their caseworkers failed to recognize the level of care required by children with developmental disabilities. One mother spoke of the inappropriate care option suggested by her daughter's caseworker:
When we thought [our daughter] was going to go to high school last year, our caseworker said, “See if you can get a high school student that can come pick her up, and there's a zero period, like elective classes start at 8, see if you can get her into art or somebody that'll take her, you know, in order to kinda make up child care, and have a high school student like walk her over.” But you know, if my kid has a seizure in the middle of the sidewalk, I don't think your average 17-year-old is going to be able to handle that.
The final strategy that the women reported using to provide care for their child while they worked was sharing caregiving responsibilities with their spouse or ex-spouse. However, only 3 of the women reported doing so. Two women reported that they and their partners split their work shifts so that one could always care for their child with disabilities. One mother explained the way she shared work and caregiving with her ex-husband:
So his dad works evenings, and a lot of times if there was a school day off, he'd pick [our son] up the night before, he would spend the night, … he'd be all day with his dad, and his dad would give him back to me late in the afternoon.
The mothers agreed that work was important for them, both financially and emotionally. When one mother indicated that the stresses related to work led her to consider quitting, other mothers in the group urged her not to. One mother, currently unemployed because of her responsibilities for her son with disabilities, spoke of her fears that she would not work again:
I'm 53 years old, and if I don't get back to work [soon], I'll never get back to work. I have a 14-year-old daughter saying, “Mom, you need to get back to work.” She knows who I am when I'm working.
Several mothers reported that their children's healthcare providers encouraged the women to continue working because of the emotional and psychological benefits of employment. One mother shared her pediatrician's insight about the consequences of stopping work, “I would be crazy and poor instead of crazy and not poor, you know?” One mother was told by her child's psychologist not to quit working when her son was still an infant. This mother said, “A very wise psychologist told me not to stop working when he was born. She was very serious, ‘Don't you dare quit … you'll need it later.’ And she was right.” Participants spoke of the satisfaction derived from work and having supportive coworkers. The women agreed on the benefits of working related to emotional and financial well-being as well as self-esteem.
Despite the burden of their caregiving responsibilities, many of the women expressed concern about a future without such responsibilities. For these women, work was also seen as a buffer to the eventual end of caregiving responsibilities. One woman spoke of trying to develop a career as an emotional investment for her future, “I'm busy now trying to get a career going, because when I face that empty nest, I'll just be a basket case.”
When asked if they had familiarity or experience with the federal Family and Medical Leave Act (FMLA), nearly all of the women knew of it and had some understanding of its provisions. However, none of the women had used it, and all felt that they would not qualify for such leave solely on the basis of having a child with disabilities. One mother's explanation of the Act was echoed by nearly all of the mothers:
But you also have to have a qualifying event. So you have to have a child with an illness, you can't just say well my kid has autism, and you get to take some time off, that doesn't qualify. … One time, my daughter went on the ketogenic diet for seizures … so she was hospitalized for a week, and then I thought I may need to stay home for a month to get this diet going, and I thought about it [FMLA leave] … because that would have been a hospitalization and a medical condition.
However, it appears that participants did not feel protected by the provisions of FMLA because most reported believing that taking leave would jeopardize their jobs. One woman stated, “I've always dreamed of it. … I don't know the details, but I don't know if I'd have the wherewithal in an emergency to say [I need to take leave] and still have a job.” Rather than requesting leave, participants were more likely to downplay their caregiving responsibilities when seeking employment. One mother underscored this perspective, “I know if you are applying for a job and you bring the subject [of leave] up, you're not going to get the job.”
Two prominent themes emerged related to the women's responsibilities as caregivers for their children: (a) the support received from extended family living nearby was critical to the mother's well-being and (b) securing and arranging care for their children was an ongoing source of stress and agitation.
Mothers in the focus groups had two situations related to the proximity of their extended families: those with extended family living nearby who provided assistance and those who wished they did. Mothers noted that the siblings of their child with developmental disabilities were often important supports as well.
Not surprisingly, the women who expressed the fewest problems balancing work and caregiving were those who relied on assistance from extended family. However, the majority of participants did not have family living nearby and had to manage on their own. A typical comment included, “I think it makes a huge difference that you have family. We have nobody.”
Directly related to services, work, and caregiving was the issue of maternal responsibility. All of the mothers concurred that they shouldered the burden for managing the needs of their adolescent child. Even among women with partners living in the home, the partners were often viewed as supportive and helpful, but the mothers bore direct and nearly complete responsibility for ensuring that their child received care while they worked. One mother reported that her spouse had a flexible job, and they often shared responsibility for their son, particularly when he was in crisis. However, this woman's report was the exception. Another woman's feelings summed up the group's consensus: “It's all on women.”
A second theme related to the issue of maternal burden was the sense of isolation, depression, and the feeling of being overwhelmed. These negative experiences were directly related to the stressors of balancing work and family responsibilities. A typical comment was offered by a mother who spoke about not being able to pursue her interests because she bore complete responsibility for her son with disabilities.
I would like to teach, but it was just out of the question. Because my husband … he's a very nice father, and he's a good father … you know some people just don't have a knack, it doesn't come natural, so it kind of fell into my lap.
In addition to daily caregiving responsibilities, one mother reported feeling a larger responsibility of preparing her children for greater life roles, which was supported by several other respondents. One mother described the responsibility she felt toward creating a full life for her son and helping him to realize his potential and dreams.
No, you are not targeting him to sit at home, you're targeting him to have jobs, and a home, and a life, and friends, and just getting that done is full-time and depressing work. … there's no one else I can give it to … it goes beyond just hiring help, it goes to the work of … creating lives for these kids that are as big as they can be, or as full as they can be. Who is going to do that work other than mom?
Discussion and Conclusions
In this preliminary study I examined the issue of work–life balance for mothers raising adolescents with developmental disabilities. Consistent with past research, study mothers reduced their work hours to accommodate their children's care and supervision needs (e.g., Heck & Makuc, 2000; Kuglthau & Perrin, 2001; Shearn & Todd, 2000). Also comparable with past research were the sample mothers' reports that existing services had systematic inadequacies and the ongoing role mothers must assume as the person who secures services for their children (e.g., Freedman & Boyer, 2000; Read, 2000). In addition, some evidence emerged from this study supporting past research showing the responsibility of caring for children with disabilities remains primarily the mother's job (e.g., Cohen, & Petrescu-Prahova, 2004; Heller, Hsieh, & Rowitz, 1997; Read, 2000; Traustadottir, 1991).
Moreover, results of the present study suggest an extension of previous findings in three ways. First, it builds on previous research in which investigators found that balancing work and caregiving for children with developmental disabilities remains primarily a job for mothers (e.g., Cohen & Petrescu-Prahova, 2004; Read, 2000; Traustadottir, 1995) as their children move through adolescence. Although partners were sometimes felt to be supportive, the chief responsibility for managing work and caregiving, and particularly securing paid services to care for children in their mothers' absence, was the women's exclusive responsibility. In the present study I found that caregiving labor within families of adolescents with disabilities is distributed along traditional gender lines. In past research, Traustadottir argued that “the pressure to construct an ordinary family pulls fathers and mothers toward very traditional [gender role] patterns” (p. 62). Although the mothers in the present study did not discuss the roots or causes of the gendered distribution of caregiving labor, their reports corroborate Traustadottir's conclusions.
Results of the present study also suggest that the stress previous researchers found among parents of young children with disabilities (e.g., Noojin & Wallander, 1997; Read, 2000) continues for the mothers into their child's adolescence. This point is important because the study mothers overwhelmingly reported strains and frustration with balancing caregiving with work and with the task of securing care for their children. Finally, these results provide a tentative description of the particular concerns of mothers of adolescent children with developmental disabilities in piecing together services while juggling work and family life, echoing earlier findings by Traustadottir (1995), in which mothers reported having sole responsibility for coordinating their child's care and struggling to secure services. Mothers raising adolescents with developmental disabilities grapple with unique challenges. Foremost among these challenges is the abrupt decline in available supports and services for adolescent children with developmental disabilities.
This study has a number of limitations. First, the sample is small and not representative of the experiences of all mothers of adolescents with developmental disabilities. Second, all of the mothers in the sample were receiving at least some supports from a service provider agency. As such, these women's experiences are likely quite different from those of women whose families are not receiving any services. Finally, the study sample included only White women and, therefore, does not include the experiences of mothers of color. Previous researchers have found that there are important cultural differences in caregiving between women of color and White women, and, therefore, this is a serious limitation. Despite these limitations, the present research provides some new evidence of how mothers of adolescents juggle their work–life responsibilities.
Suggestions for Further Research
The limited scope of this preliminary study means that further research is necessary before concrete policy changes can be confidently advocated. In such future research, investigators should examine how the issues of role conflict and role enhancement together influence maternal employment patterns and stress associated with balancing work and family responsibilities. Testing the apparent interrelatedness of these two theories with a larger and more culturally diverse sample is needed. Attempts to understand the factors that mediate the mother's perceived role conflicts and further mothers' feelings of role enhancement would also be useful. Examination of fathers' caregiving behaviors, and how partner behaviors can be strengthened to provide more relational support to mothers, also seems relevant.
My study findings must also be considered in light of Temporary Assistance to Needy Families, which mandated greater levels of work from welfare recipients as part of the Personal Responsibility and Work Opportunity Reconciliation Act of 1996, and has new work requirements that took effect in October 2006. Although some of the sample mothers lived in low-income households, all of them presented evidence of the difficulty of balancing work and family responsibilities—with or without a partner. For poor single mothers—the purported targets of welfare reform—and particularly for those raising adolescents with disabilities, the challenges may be considerably greater than those presented here. Further research is necessary to understand the types of supports and policy changes that would assist the employment efforts of low-income mothers of adolescents with disabilities.
If these preliminary findings are consistent with the experiences of larger and more diverse samples, however, policy solutions should be sought. Policy interventions that provide greater levels of support, designed by mothers who provide care for adolescent children with developmental disabilities, would be a sound first step. Building on the reports of the mothers in this study, such interventions should be designed to offer seamless supports that are easy for mothers to access, do not diminish as the children age, and are individualized to families' needs.
Support for Previous Theory
The evidence from this study supports all three of the theoretical positions described at the outset of this paper. First, the mothers unanimously articulated that their child's adolescence presented new challenges. Although adolescence is an important developmental milestone for all children, for the sample mothers it also represented a period in which available services declined sharply, and the stressors associated with juggling work and caregiving increased. This unique experience in the familial trajectory lends credence to the importance of situating work–life research in a life course perspective (Sweet & Moen, 2006). These findings support prior arguments that a life course perspective is essential to understanding the unique experiences of families raising children with developmental disabilities (Seltzer & Heller, 1997).
In addition, this study provided some support for the role conflict perspective, whose theorists posit that balancing the demands of work and family pits competing objectives in the mother's life (e.g., Williams, 2000). All mothers in the present study voiced concerns and related experiences that support this proposition. Furthermore, they reported struggling to maintain their jobs when they also had primary caregiving responsibility for their adolescent with disabilities. These findings suggest that time spent caring for their children impeded the mothers' ability to manage as competent workers, and, likewise, work hindered their caregiving.
However, the mothers' experiences and reported feelings also provided support for the role enhancement theory and the notion that having multiple roles is good for individual well-being (e.g., Barnett & Gareis, 2006). All respondents felt that work added to their emotional well-being beyond its financial advantages. Despite the burden motherhood placed upon them, participants expressed deep levels of satisfaction with their caregiving responsibilities.
The fact that the present study supports both role conflict and role enhancement theories makes intuitive sense. Family life and working life are complicated, and the relationship between them is nuanced. Therefore, it is not surprising that although the women in this study derived pleasure and immense satisfaction from both roles, they also experienced strain associated with meeting the demands of their multiple roles.
Policy and Practice Implications
These findings suggest that several policy- and practice-related changes to existing support services may be useful to mothers who are raising adolescents with developmental disabilities. Policies that would likely assist these mothers in meaningful ways include expanding existing services to accommodate adolescent children's care needs during school closures; making services seamless between providers, including schools and other service providers; and making it easier for the mothers to access care for their children with developmental disabilities. The overarching inadequacy of available services begs a coordinated, comprehensive approach.
When describing the changes that would most help them manage their work–life responsibilities, all of the mothers concurred that an expansion of services targeted specifically toward families of adolescents with developmental disabilities was necessary. Such an expansion appears warranted based on these mothers' experiences and reports. The mothers expressed a common experience of a sharp decline in services when their child reached adolescence. Working with families to create appropriate, individualized services will require policy makers and service providers to improve upon the provision of services that have been modeled on the experiences of typically developing adolescents. Arguably, continuing to situate the issue of work–life balance as the personal problem and private choice of mothers of adolescents with disabilities is unlikely to yield the types of changes that will significantly improve the quality of these mothers' lives or their ability to fully nurture their child.
Cohen and Petrescu-Prahova (2004) have suggested another approach that would mitigate the burden borne by the mothers of adolescents with disabilities in this study. Care work could be redistributed within families to more equitably involve male partners. This proposition, one also sought by feminist researchers who seek gender equality and analyze all types of family caregiving (e.g., Folbre, 2001; Fraser, 1994; Hooyman & Gonyea, 1995), would require somewhat of a revolution in the distribution of labor within households (Kershaw, 2005). Although this approach might be a feasible long-term solution, it is important to note that the mothers in the present study did not request or even express hope that their partners would shoulder a greater portion of their care burdens. The policy expansions advocated by the mothers in the present study are likely a more fruitful strategy to support them in the short-term.
Author: Susan Parish, PhD, Assistant Professor, School of Social Work, University of North Carolina at Chapel Hill, 301 Pittsboro St., CV 3550, Chapel Hill, NC 27599-3550. email@example.com