JEIBI Journal of Early and Intensive Behavior Intervention VOLUME 5 - NUMBER 3

Families of Children with : A Review of Literature and Recommendations for Interventions

SUSAN L. NEELY-BARNES, MSW, PH.D. David A. Dia, MSW, Ph.D. The University of Tennessee - Memphis Campus

Children with disabilities receive most of their support from families. While most family are mothers or fathers, grandparents are increasingly providing care for children with disabilities. In addition, family caregivers come from diverse cultural backgrounds that impact their views on . This paper reviews the literature on parent and grandparent caregivers of children with disabilities as well as the literature on parenting children with disabilities across cultures. Drawing from a literature review, the paper discusses emerging directions in intervention. Key words: children with disabilities, parent stress, grandparent care, families and culture, intervention

amilies are a critical source of support for below. While parents are the most common Fchildren with disabilities. Family members type of caregivers for young children with absorb the added demands on time, emotional disabilities, there are a growing number of resources, and financial resources (Baker- grandparents who are providing custodial Ericzen, Brookman-Frazee, & Stahmer, 2005) care. The literature on custodial grand that are associated with having a child with a parenting is not as extensive, yet this disability. Yet, rewards from having a family population has some unique needs and it is member with a disability, such as personal important for practitioners to be aware of and spiritual growth, have also been noted these. In addition, there is a growing (Scorgie & Sobsey, 2002). recognition that families who care for children The literature on disability in early with disabilities differ cross-culturally. As our childhood encompasses studies of a broad society is becoming increasingly diverse, it is array of diagnoses. While a few diagnosis- important for practitioners to be aware that specific differences exist, Stein and Jessop culture impacts the ways in which families (1989) found that caregivers of children with perceive childhood disability. all chronic conditions experience similar Although much has been written on issues impacts, concerns, and needs for support. affecting family caregivers, we know of no Thus, this paper will examine family impacts other paper that has attempted to synthesize and approaches to intervention across a broad this literature and speak to the implications range of disabilities and developmental delays for clinicians working in early intervention. building on the assumption that these This paper begins with a review of the diagnoses affect families in similar ways. literature on parents; proceeds to a discussion An extensive amount of research has been of issues affecting custodial grandparents; conducted on the impact of childhood gives special emphasis to the ways in which disability on parents, particularly mothers. families differ across culture; and finally, The findings of this research have important discusses the emerging ideas in intervention implications for practitioners who are working that are relevant for these varied types of with young children and will be discussed family caregivers.

93 JEIBI Journal of Early and Intensive Behavior Intervention VOLUME 5 - NUMBER 3 Parents cancer found higher stress levels in the families dealing with cancer (Hung, Wu, & The view that having a child with an Yeh, 2004). intellectual or creates negative family outcomes including Behavior problems and care needs added stress and parental depression has underpinned much of the research of the past Other studies indicate that it may not be three decades (see Baxter, Cummins, & the diagnosis, but rather the child Yiolitis, 2000; Hayden & Goldman, 1996 for characteristics associated with the diagnosis a review). Yet, research on this subject has (e.g. behavior problems or care needs) that suggested varying outcomes for families. In are the key predictors of negative family support of the view that disability leads to impact. When controlling for behavioral negative outcomes, a couple of comparative problems, Baker, Blacher, and Olsson (2005) studies have noted greater stress in parents of found no differences in depression, well- children with disabilities than parents of being, and marital adjustment for families children without disabilities (Baker-Ericzen, with and without children with disabilities. In Brookman-Frazee, & Stahmer, 2005; Dyson, addition to this comparative study, many non- 1997). Likewise, two studies, focusing comparative studies have noted poorer family specifically on mothers, have found that outcomes associated with child behavior mothers of children with mental retardation problems. Child maladaptive behavior has experience more depression than those of been associated with increased burden and typically developing children when compared stress (Heller, Hsieh, & Rowitz, 1997; using the Beck Depression Inventory (Olsson Saloviita, Italinna, & Leinonen, 2003; & Hwang, 2001) and the Center for Simmerman, Blacher, & Baker, 2001), poorer Epidemiologic Studies Depression Scales parenting efficacy (Kersh, Hedvat, Hauser- (Blacher, Shapiro, & Fusco, 1997). Although Cram, & Warfield, 2006), poorer parental these studies suggest a relationship between (Herring, Gray, Taffe, Tonge, childhood disability and parent stress or Sweeney, & Einfeld, 2006), and poorer marital depression, it is important to note that they adjustment (Simmerman,Blacher, & Baker, did not control for variations related to the 2001). These findings have important diagnosis or care demands associated with the implications for practitioners working in disability. behavioral intervention as they suggest that When the parental experience has been improvements in the child’s behavior may examined across diagnoses, some differences lead to decreased parental stress and improved have been noted. Parents of children with parental mental health. Down syndrome have been found to Aside from behavior, other types of care experience less stress (Ricci & Hodapp, demands can create stress and burden for 2003), depression (Abbeduto, Seltzer, families. Personal care needs (Neely-Barnes Shattuck, Krauss, Orsmond, & Murphy, & Marcenko, 2004; Plant & Sanders, 2007; 2004), and pessimism (Lewis, Abbeduto, Warfield, 2001), adaptive behavior deficits Murphy, Richmond, Giles, Bruno, et. al., (McCarthy, Cuskelly, van Kraayenoord, & 2006) than parents of children with other Cohen, 2006; Saloviita et al., 2003), and diagnoses, particularly . In addition, medical needs (Neely-Barnes & Marcenko, childhood disability may not be as stressful 2004) have been associated with negative for families as childhood illness. A comparative family impact, stress, and burden. Thus, study of families of children with physical research suggests that family outcomes may disabilities versus families of children with not be determined by simply the presence or

94 JEIBI Journal of Early and Intensive Behavior Intervention VOLUME 5 - NUMBER 3 absence of a disability. Maladaptive behavior disability may not experience more difficulties and care needs may be the more important with functioning than other families. Thus, risk factors for family impact and stress. practitioners should not equate poor family functioning with childhood disability. While Marital adjustment and family functioning poor family functioning may be a risk factor In addition, the way the family functions for stress when it is present, many families in response to the child’s disability has a function quite well. critical relationship to family outcomes. Researchers have noted that marital and Parental self-efficacy and cognitive family functioning may be far more important appraisal predictors of parenting stress and depression Several studies have pointed to the than the presence or absence of childhood importance of parental cognitions and coping disability. Abbeduto et.al. (2004) found that styles in predicting outcomes for families. diagnosis-specific differences in parenting Hastings and Brown (2002) found that when stress disappeared when child behavior, controlling for parental self-efficacy, the parental coping style, maternal education, relationship between child behavior problems family income, age of the child, and number and parental stress was non-significant. In of children in the family were controlled. other words, the parents’ belief that they could Kersh, et al. (2006) found when controlling manage the care giving tasks was more for marital quality, neither child functioning important in predicting stress than the child’s nor child behaviors were significant predictors behavior. In addition, Plant and Sanders of maternal and paternal depressive symptoms (2007) noted that when controlling for or parenting stress. Smith, Oliver, and cognitive appraisal of care giving Innocenti (2001) noted that although poor responsibilities, the relationship between social skills in the child were a predictor of child adaptive behavior and stress parent stress, family functioning was a much was no longer significant. When the parents’ stronger predictor. The causal directions cognitive appraisal was accounted for in the between stress and family functioning cannot study, only difficulty of care giving tasks be determined from these findings. Yet, these significantly predicted caregiver stress. studies point to the need for practitioners to Likewise, Lustig (2002) found that families pay attention to parental relationships and who could re-frame the disability in a positive overall family functioning because these can way and perceived themselves as competent be important risk factors for parental stress. rather than passive had better family Although several studies have examined adjustment. Weinger (1999) found that the negative impacts of poor family mothers with a more positive perception of functioning, Lustig (1997) found that most the child with a disability rated their family families of children with disabilities do not functioning higher. Finally, research indicates experience poor functioning. In a study of that how each parent copes with the disability family typologies, Lustig found that most may impact the spouse’s coping. Hastings, families of children with disabilities displayed Kovshoff, Ward, degli Espinosa, Brown, and either a coherent or flexible profile, and that Remington (2005) noted that spousal only 7% of families exhibited a vulnerable depression was a significant predictor of profile which was characterized by a lack of stress in both mothers and fathers. Thus, the functioning, coherence, resources, and literature suggests that practitioners need to adaptability. The results of Lustig’s research pay close attention to how families define suggest that families of children with a their experience of caring for a child with a

95 JEIBI Journal of Early and Intensive Behavior Intervention VOLUME 5 - NUMBER 3 disability. Negative cognitions about the Gray, Taffe, Tonge, Sweeney, & Einfeld, disability may represent risk factors for 2006). Looking comparatively at mother- families. father differences in families of children with There are many ways in which parents can and without developmental disabilities (DD), reframe the disability experience into a Oelofsen and Richardson (2006) found that positive one. In qualitative studies, parents mothers with children with DD experienced have reported that their child’s disability has increased stress, weaker sense of coherence, given them an increased sense of purpose and poorer health than their husbands while (Stainton & Besser, 1998); personal growth the comparison group (with children without (Scorgie & Sobsey, 2000; Stainton & Besser, DD) experienced no mother-father differences. 1998); improved relationships and social Conversely, one study reported that mothers networks (Scorgie & Sobsey, 2000; Stainton have more positive perceptions of care giving & Besser;, 1998 Taunt & Hastings, 2002); than fathers (Hastings, et al., 2005). However, increased spirituality (Stainton & Besser, smaller studies of approximately 30-40 1998; Taunt & Hastings, 2002); increased mother/father pairs did not find significant tolerance and sensitivity (Scorgie & Sobsey, differences on measures of stress (Dyson, 2000; Taunt & Hastings, 2002); and a more 1997; Keller & Honig, 2004; McCarthy, positive future outlook (King, Zwaigenbaum, Cuskelly, van Kraayenord, & Cohen, 2006), King, Baxter, Rosenbaum, & Bates, 2006). A family support (Dyson, 1997; McCarthy, et. positive outlook on childhood disability Al., 2006), family harmony (measured with correlates with decreased feelings of stress the Family Environment Scale) (Keller & and burden (Ylven, Bjorck-Akesson, & Honig, 2004), marital adjustment (McCarthy, Granlund, 2006). Assisting families in finding et. Al, 2006), or family quality of life (Wang, a positive meaning to their child’s disability Summers, Little, Turnbull, Poston, & Mannan, may prove to be an important intervention in 2006). The lack of significant findings in alleviating parent stress. However, further smaller studies suggests that differences research is needed to understand what types between mothers and fathers may be small. of positive appraisals are the strongest Mothers and fathers may also differ in predictors of positive coping and how the what contributes to their stress. Keller and stress affects parents’ behaviors or relationship Honig (2004) found that for fathers, acceptance behaviors such as the frequency of positive of the child with the disability and family reinforcement used. harmony reduced stress. While mothers were also affected by family harmony, lower socio- economic status and greater care demands Mother/father differences predicted stress. These differences may Research suggests that mothers and represent important differences in the way fathers may experience different impacts of practitioners should intervene with mothers childhood disability and have different needs versus fathers. Further research is needed to related to coping with the disability. In better understand what contributes to maternal comparison to fathers, mothers of children and paternal stress. with disabilities have been found to exhibit While most of the stress and burden increased symptoms of depression (Hastings research focuses on parental mental health, et al., 2005; Olsson & Hwang, 2001), increased the economic burden of raising a child with caregiver burden (Heller et al.,1997) and DD has also been examined. This economic increased stress (Dellve, Samuelsson, burden has a particular impact on mothers. Tallborn, Fasth, & Hallberg, 2006; Herring, Comparative studies of parents with and

96 JEIBI Journal of Early and Intensive Behavior Intervention VOLUME 5 - NUMBER 3 without disabilities have noted that mothers deficits, speech or hearing problems, and of children with disabilities work fewer hours neurological problems (Janicki et al., 2000; and have lower earnings than mothers of McCallion, Janicki, & Kolomer, 2000). typically developing children (Olsson & The most common reason for grandparent Hwang, 2006; Parish, Seltzer, Greenberg, & custody is parental child abuse and neglect Floyd, 2004). In addition, mothers report (Dubowitz, Feigelman, Harrington, Starr, & spending more time caring for the child with Zuravin, 1997; Janicki et al., 2000). the disability than fathers (Heller, Hsieh, & Grandparent custody is often sought as an Rowitz, 1997) and that the care giving alternative to foster placement. Other reasons demands associated with the child’s disability included teen mothers not being able to care lead to increased work absenteeism (Warfield, for their child, AIDS, homelessness, 2001). unemployment, , maternal imprisonment, and substance abuse (Burnette, 2000; Janicki et al., 2000; Pinson-Millburg, Grandparents and Schlossberg, & Pyle, 1996). Grandchildren with Disabilities McCallion et al. (2000) identified five Grandparents are also being called upon to challenges for grandparents trying to care for serve as caregivers for their disabled their grandchildren. One issue was related to grandchild(ren). An aging caregiver is often guardianship. Many families had informal thought of as an aging parent caring for an agreements regarding child placement and adult child with a disability. Instead, a new legal guardianship had not been established, and growing population is beginning to garner therefore making it difficult for the the attention of researchers and is being grandparents to access formal services (e.g., referred to as the “skip-generation” (Janick, medical care or school support services). A McCallion, Grant-Griffin, & Kolomer, 2000) second issue was financial. Many grandparents caring for grandchildren and in some cases, had difficulty accessing public assistance or great-grandchildren. Caregivers of emergency cash and . A child staying grandchildren with disabilities are over- in a home with a care-giving relative most whelmingly female (e.g., greater than 90%), often falls outside the formal child welfare primarily minority (e.g., African-American, system making them ineligible for some Latino), mostly in their late 50’s to early 60’s, public benefits such as Temporary Assistance with some high school education or a high to Needy Families (TANF) (Hegar & school diploma, and from urban areas Scannapieco, 2000). A third issue with aging (Burnette, 2000; Force, Botsford, Pisano, grandparents was the lack of time off or Holbert, 2000; Janicki et al., 2000). In respite from the grandchild. A forth issue addition, one study indicates that these surrounded the need for emotional support for grandparent caregivers provide daily care for the grandparents as many grandparents had the grandchild for an average of 7 years not addressed their own feelings about the (Janicki et al., 2000). Most of the children, death, drug addiction, or imprisonment of the who are cared for by their grandparents, are absent parent. The fifth issue was that male (59%) with an average age of 4.83 years grandparents had difficulty navigating the (Janicki et al., 2000). Most of the grandchildren maze of the educational, judicial, and social have multiple problems or disabilities. The service systems. For grandparents caring for most common problems are learning children with disabilities, this maze of service disabilities, developmental delays, attention systems can be particularly complex. Thus, it deficit hyperactivity disorder, intellectual will be important for clinicians to assess these

97 JEIBI Journal of Early and Intensive Behavior Intervention VOLUME 5 - NUMBER 3 five factors when completing a comprehensive themes that have been previously identified assessment. that were confirmed by this study: both groups of grandparents experienced low access to Prevalence of burden and stress in custodial potentially useful services and low levels of grandparents financial supports. This parallels the Similar to the findings concerning McCallion et al. (2000) grandparent study. depression in mothers, grandmothers, who In another comparative study, Burnette make up 90% of grandparent caregivers, are (2000) compared Latino grandparents who also susceptible to depression when they are were caring for a child with to the primary care taker of a disabled grandchild, Latino grandparents who were caring for a due to the additional stress of caring for the grandchild without special needs. Those who child (e.g., Dellmann-Jenkins, Blankemeyer, were caring for a child with special needs & Olesh, 2002; Kelley, Yorker, Whitley, & reported greater levels of depression and more Sipe, 2001; Fuller-Thomson & Minkler, unmet service needs than the grandparents 2000). Scales used for measuring depression who were not caregivers of special needs include the CES-D (Center for Epidemiological children. However, the results of this study Studies Depression Scale (Fuller-Thomson & need to be interpreted cautiously due to the Minkler, 2000) and the depression subscale of high number of comparisons and the risk of the Brief Symptom Inventory (Kelley, et al., an inflated alpha yielding a statistically 2001). Other predictors of stress and burden significant difference due to chance. included being African-American, having Considering these studies together suggest lower family income, having lower levels of that caring for a grandchild is stressful, but , and not receiving welfare the results are mixed regarding the level of support (Burnette, 2000; Kolomer, McCallion, distress experienced if the child has a Janick, 2002; Mills et al., 2005). disability. However, it is not clear if caring for a Research has typically focused on the grandchild with a disability exacts a greater negative aspects or burden to the grandparents burden for the grandparent than caring for a and its effects on their psychosocial grandchild without a disability. In a functioning or health. An equally important comparative study of grandparents who were area of focus is the positive benefits to raising raising a grandchild with a disability to a grandchild with a disability. Positive benefits grandparents who were raising a child without include greater love and intimacy, finding a disability, few differences were found meaning in the experience of care giving, between perception of health status and personal growth, and improved relationships depression (Force et al., 2000). Both groups (Gardner, Scherman, Efthimiadis, & Shultz, of grandparents had high average scores on 2004; Toseland, Smith, & McCallion, 2001). the Center for Epidemiologic Studies- It is still unclear whether a grandparent Depression (CES-D) scale (13.9 for the raising a child with a disability experiences disabled child grandparent and 15.8 for the more stress and burden than a grandparent non-disabled child grandparent, with the raising a grandchild without a disability. clinical cutoff score being 16). One difference Borrowing from the parent research, what found was that grandparents of children with may be most important is how the grandparent a disability were more likely to need help with views the care giving experience. Thus school. This makes sense as there is a greater grandparents who are able to reframe the likelihood that a child with a disability needs situation in a positive way and are more special support services. Two important accepting of the disability could experience

98 JEIBI Journal of Early and Intensive Behavior Intervention VOLUME 5 - NUMBER 3 less stress and burden. However, research levels of social stigma related to disability with grandparents is still needed to substantiate depending on their cultural context. For this assumption. instance, “There are many people in China who continue to think that any child who develops in a non-typical fashion is a shazi – Culture and Disabilities an idiot.” (McCabe, 2007, p. 48). A study There is an increasing understanding focused on children with autism found that among disability scholars that disability is a children and their families experienced social construct, which is defined variably discrimination, limited educational across cultures (Ferguson, 2001; Olkin, 1999). opportunities, and limited support. Culture has implications for how families define and experience disability, how families Culture and stress experience their interactions with the formal Cultural influence can also be a mediator service system, and how parental child rearing of stress. For example, a study examining the values develop. While many examples of relationship between Panamanian cultural differences around disability could be grandmothers and their disabled grandchildren given, we will give a few that highlight issues (Gardner et al., 2004) indicates less emotional that practitioners need to consider. distress was experienced by the grandmothers Culture influences the way families define related to the birth of a grandchild with a disability. Two examples, the first one coming disability than by American grandmothers. from one of the author’s clinical experience, The Panamanian grandmothers focused less illustrate how families from India and China on personal loss, grief, and stigma related to might define a specific condition very having a grandchild with a disability and more differently than a clinician native to the United on the current needs and resources for the States. For example, a clinician from an early disabled child as compared to their American intervention program, targeting children from counterparts. In addition, only about 10% of birth to age 3 with developmental delays or the grandmothers expressed fear about their disabilities, was referred to a family who grandchild experiencing social rejection or recently emigrated from India. The presenting discrimination from the Panamanian problem was that the child was not walking, community. The birth of a disabled child is or even crawling very well. During the viewed as less of a life altering event by assessment, the worker noticed that the child grandmothers in the Panamanian community had extra digits on both hands and feet. When and the focus is more on the needs of the child asked when they planned to schedule surgery and less on the status of the grandmother and to remove the extra digits, the mother indicated thus the perception and reaction to the that no surgery would be scheduled as several disability is related to the amount of stress of their extended family members had extra and burden experienced. digits and were not hampered or hindered by A comparative study of Latina mothers being polydactyl. The clinician identified and Anglo-American mothers with children being polydactyl as a disability based on her with developmental disabilities found culture, while the family identified the depression was higher and morale was lower condition as a family trait based on their with the Latina mothers, but the two groups culture. did not differ on parenting stress ratings A study conducted in China also illustrates (Blacher & McIntyre, 2005). Latina mothers how culture can influence how a problem is reported both greater depression and greater defined. Families may experience different positive impact than Anglo-American

99 JEIBI Journal of Early and Intensive Behavior Intervention VOLUME 5 - NUMBER 3 mothers. This finding is similar to the finding childhood disability is defined and of Hastings et. al. (2005) that regardless of experienced. It is important for clinicians to race and ethnicity, mothers report both greater assess how the family defines the child’s depression and greater positive impacts than disability or the child’s behavior. Considering fathers. While these dynamics are not fully the examples given above, clinicians should understood, it is important to note that parents be aware of the many different ways that can experience both greater positive and families might view a presenting problem. negative outcomes simultaneously. The family’s assessment is an important consideration in how an intervention proceeds. Culture, parental values, and access to care Culture also influences how families, Culture and personal experiences influence primarily the mothers, seek help and support. child-related parental values (Arcia & It is important for clinicians working with Johnson, 1998). Taken a step further, families of young children to recognize that researchers found that acculturated Mexican- families from other cultures may not be aware American mothers were more similar to non- of school policies, school culture, and social acculturated Mexican mothers in their child service agency culture within the United rearing beliefs than to American mothers States. In addition, families from other (Arcia, Reyes-Blanes, Vazquez-Montilla, cultures may have different traditions 2000). This suggests that parental child regarding their relationships to school and rearing values may be influenced more by the agency authorities (e.g., only the father speaks context of the family than the social to authorities on behalf of the family or environment. Therefore, it is important to extended family members are invited to identify parental definitions and values, and school meetings as well as parents). Clinicians not assume that the family has mainstream need to be open to the ways in which families American values, even when the parent seems communicate with them about their needs. At to have acculturated to the Anglo-American the same time, clinicians need to be willing to culture. orientate families to U.S. school culture and Culture can also influence access to care. policies. A study examining Asian mothers and Malay Muslim mothers with children with intellectual Intervention disabilities, found some interesting differences that the researchers attribute to differences in The review of literature points out that culture. The behavior of Muslim mothers caregivers experience different impacts of appears to be guided by Islamic syariah (laws) having a child with a disability and different (Ow, Tan, & Goh, 2004). Roles of the father needs for support related to the needs of the and mother are clearly stipulated and support child, the relationship of the caregiver (e.g. from within the family and community are father, grandmother), and the cultural context. viewed as sufficient. Conversely, Asian One of the needs of caregivers is to be given mothers believe they have options for support opportunities to nurture healthy family beyond the family (Ow, Tan, & Goh, 2004). functioning and find positive meaning in their This has direct practice implications in that care giving experience. As one special Asian mothers may be more willing to seek educator and sibling of a person with a out formal supports while Muslim mothers disability points out, professionals need to may not. allow families to “be a family first, and then The examples in this section highlight the do programming after that”. He further significance of culture and its affect on how explains:

100 JEIBI Journal of Early and Intensive Behavior Intervention VOLUME 5 - NUMBER 3 “[H]ave you ever lived with a person with reinforcement, punishment, extinction) severe disabilities? There isn’t time to do all delivered in both groups and individual these [in-home] programs. You know, I would formats. The aim was to improve child prefer to have a healthy family, one that can behavioral management techniques, which sit at a dinner table… When I talk with ultimately led to decreased parental stress. [families] about that, it’s amazing how much Other interventions including case guilt is released to be able to…be a family management services and respite care also first…have some fun with your children” show some benefit (Chan & Sigafoos, 2001). (Marks, Matson, & Barraza, 2005, p. 214). Another area of research relevant to improving parent well-being involves an Another need is for caregivers to have the understanding of problem-focused coping. opportunity to deal with other family issues Problem-focused coping includes the use of aside from the disability. Families of children cognitive and behavioral problem-solving in with disabilities have all the joys and stresses order to manage the source of stress. That is, of a typical family. Clinicians need not assume with problem-focused coping the person takes that all family problems are related to the some action to reduce their stress. For child’s disability. For example, poor marital example, the person can develop a problem and family functioning have been linked to list and then prioritize the problem list starting parental stress in families of children with with the most pressing issue. Conversely, disabilities (Kersh, et. al., 2006; Smith, et. al., emotional focused coping seeks to change a 2001). Yet, because these studies of parenting person’s negative emotional state by focusing stress and family functioning are not on moderating the negative emotion. These comparative to families of children without could include such techniques as using disabilities, we do not know if these issues are relaxation techniques, rethinking the problem unique. The occurrence of poor family in a more positive light, and denial. Essex, functioning in a family with a child with a Seltzer, and Krauss (1999) found that mothers disability may not always be attributable to who coped with their child’s disability using the disability. Clinicians need to be aware of problem-focused coping experienced less the fact that the child’s disability may not burden and depression than those who always be the presenting problem. employed emotion-focused coping, which simply seeks to manage the emotions Cognitive-behavioral techniques, problem- surrounding the source of stress. However focused coping, and empowerment Essex et al. (1999) found that fathers did not While much literature has examined the get the same benefits from problem-focused risk of stress, burden, and depression in coping and only experienced decreases in families of children with disabilities, less burden when they refrained from emotion- literature has examined interventions that are focused coping. Similarly, Ylven et al. (2006) aimed at ameliorating that stress. Hastings point out that emotion-focused coping is only and Beck (2004) conducted a literature review beneficial in situations that are beyond the and found a few limited, but promising caregiver’s control. These findings suggest approaches for parental stress. Most of the that clinicians may be able to decrease studies of interventions for parental stress caregiver stress by helping the caregiver to utilized some form of cognitive (e.g., focus on aspects of the disability that are enhancing problem solving, cognitive under his/her control (such as asking for restructuring, setting goals) and behavioral assistance and advice when needed or techniques (e.g., operant conditioning, advocating for the child’s needs).

101 JEIBI Journal of Early and Intensive Behavior Intervention VOLUME 5 - NUMBER 3 Another intervention concept closely plan for residential stability; how to deal with related to problem-focused coping is the guardianship and assist the person with a parent’s sense of empowerment. Empowerment disability with life choices; and how to has been defined as “a person’s (1) access to develop a will and plan an estate (Etmanski, and control over needed resources, (2) 2000). Many programs for aging caregivers decision-making and problem-solving have been created. Although few of these abilities, and (3) acquisition of instrumental programs have been evaluated, most anecdotal behavior needed to interact effectively with reports on long-term planning suggest that others to procure resources” (Dunst, Trivette, these approaches are helpful (Heller, 2000). & Deal, 1988, p. 3). Interventions that involve In addition, one small controlled study of empowerment hold promise for helping long-term planning indicated that older families deal with the stress of having a child families who participated in a program were with a disability. Yet, little empirical work has more likely to establish special needs trusts, been done to establish the benefits of to look into residential placement, and to put empowerment. Dempsey and Dunst (2004) their desires for the future of the person with found that families experience greater a disability in writing (Heller & Caldwell, empowerment when they experienced greater 2006). Practitioners working with young comfort and autonomy in their relationships children should know that these types of with professionals. In considering the programs are available and may be particularly outcomes of empowerment approaches, beneficial to older families. Neely-Barnes, Graff, Marcenko, and Weber (2008) have found that when families make Interventions specific to gender, age, and more decisions, they receive more services ethnicity of caregiver and experience greater satisfaction. More Another consideration in planning research is needed to determine if there are interventions for caregivers is whether all other ways in which empowerment improves family caregivers will benefit from the same outcomes for families. However, for types of interventions. As the review of practitioners, it is important to note that literature suggests, fathers may have very preliminary research suggests that giving different concerns and needs from mothers families more control over their services and and grandparents may have different needs creating a greater sense of comfort and from parents. Parents may have different autonomy is beneficial. needs across cultures. Interventions such as support groups that are specifically for Future and long-term planning custodial grandparents, fathers, or parents of As discussed in the literature review, an a particular cultural group may have particular increasing number of grandparents are caring value. for children with disabilities. This increase in For example, one controlled study the number of older caregivers creates a need examined a specific intervention for for information about long-term planning. grandparents caring for a child with a Most long-term planning programs address disability. This intervention focused on both financial planning and living support groups, which provided both support arrangements and provide caregivers with a and education about services available to step-by-step guide. For example, the Planned children with disabilities. The support groups Lifetime Advocacy Network (PLAN) explains were effective in reducing depressive to caregivers how to help the person with a symptomology and improving a sense of disability build informal relationships; how to mastery as compared to the control group

102 JEIBI Journal of Early and Intensive Behavior Intervention VOLUME 5 - NUMBER 3 (McCallion, Janicki, & Kolomer, 2004). programs would be particularly beneficial to Another study regarding grandparents raising mothers. Although concrete services are grandchildren, but not necessarily children beneficial to families, they are often under- with a disability, found multimodal, home- funded and difficult for families to access. based intervention with monthly support Clinicians can assist families by advocating groups significantly reduced stress and that they get adequate services. improved the level of public benefits the family received. This intervention can serve Future Directions as a model for future study with grandparents raising children with disabilities (Kelley et This review of literature points to several al., 2001). Both of these studies suggest future directions for both researchers and potential avenues of intervention and research practitioners. First, it points to the need for with grandparents. In addition, research is more research into the impact of caregivers needed to evaluate the value of support groups positive perceptions of their child with a for fathers or for specific ethnic minorities. disability. While we know that family members have positive perceptions, we do Financial and respite support not know what types of positive perceptions Caregivers of children with disabilities improve family coping. More information benefit from concrete services such as stipend about the benefits of positive perceptions programs and respite care. In two studies of a would assist practitioners, particularly those cash subsidy program, Herman (1991; 1994) who employ cognitive-behavioral found that parents rated the cash subsidy as interventions with caregivers. This line of helpful, as improving their overall family life research could also clarify whether positive and ability to care for their child with a perceptions differ for mothers versus fathers disability, and that they were able to get more and whether gender moderates the relationship respite care and professional services due to between positive perceptions and parental the subsidy. Similarly, Meyers and Marcenko coping. Research on this topic might also (1989) found that cash subsidies reduced clarify whether different interventions are family financial stress and led to fewer needed for mothers versus fathers. families anticipating out of home placement. We need more research into the cultural Chan and Sigafoos (2001) found that respite competency of our interventions with parents care reduced short term stress for mothers and of children with disabilities. Although we had a particularly positive effect on mothers know that families differ across cultures, little of younger children in their review of the research has examined the cultural competency respite care literature. Herman and Marcenko of interventions. In particular, studies of (1997) found that the respite care had an interventions that address needs of specific indirect effect on maternal depression ethnic or cultural groups would be a much mediated by adequacy of time and adequacy needed addition to the literature. In addition, of babysitting resources. When mothers future research could examine whether the received respite care, they felt they had more cultural competency of practitioners improves time and more adequate babysitting resources. family and child outcomes. These more positive perceptions in turn led to Additional research is also needed into a decrease in maternal depression. Since interventions with grandparent caregivers. It mothers bear the brunt of the economic impact is difficult to draw full and valid conclusions of having a child with a disability, it is not due to the limitations of the research. Similar surprising that stipend and respite care to the parent research, most of the studies

103 JEIBI Journal of Early and Intensive Behavior Intervention VOLUME 5 - NUMBER 3 utilized availability sampling, thus making References generalizations difficult. Another significant Abbeduto, L., Seltzer, M. M., Shattuck, P., Krauss, M. limitation of the research is the reliance on W., Orsmond, G., & Murphy, M. M. (2004). self-report measures. For instance, Psychological well-being and coping in mothers of grandparents reported their grandchild’s youths with autism, Down Syndrome, or Fragile X diagnosis. There were no reliability or validity Syndrome. American Journal on Mental Retardation, data pertaining to the accuracy of the self- 109, 237-254. reported diagnosis. Finally, there was only Arcia, E., & Johnson, A. (1998). When respect means one controlled study found examining a to obey: Immigrant Mexican mothers’ values for their specific intervention for this population. children. Journal of Child and Family Studies, 7, 79- Previous researchers have done well to 95. identify a “new” population of need, but Arcia, E., Reyes-Blance, M., & Vazquez-Montilla, E. further research is needed to fully understand (2000). Constructions and reconstructions: Latino parent’s values for children. Journal of Child and the scope of the problem and how best to Family Studies, 9, 333-350. intervene. Further research could clarify Baker, B. L., Blacher, J., & Olsson, M. B. (2005). whether interventions that work with parents Preschool children with and without developmental would also be effective with grandparents. delay: Behavior problems, parents’ optimism and Most importantly, this review of research well-being. Journal of points out that there is a large variation in the Research, 49, 575-590. experience of caring for a child with a Baker-Ericzen, M. J., Brookman-Frazee, L., & Stahmer, disability. Practitioners need to be aware of A. (2005). Stress levels and adaptability in parents of the fact that care giving produces both positive toddlers with and without autism spectrum disorders. and negative experiences. Parents and Research & Practice for Persons with Severe grandparents may react to the care giving Disabilities, 30, 194-204. Baxter, C., Cummins, R. A., & Yiolitis, L. (2000). experience in many different ways. In Parental stress attributed to family members with and addition, practitioners need to keep in mind without disability: A longitudinal study. Journal of that caregivers and other family members Intellectual & Developmental Disability, 25, 105- have needs for support in addition to the needs 118. of the child with the disability. This review of Blacher, J., & McIntyre, L. L. (2006). Syndrome literature points out that healthy family specificity and behavioral disorders in young adults functioning is important and that practitioners with intellectual disability: Cultural differences in need to support the needs of the entire family family impact. Journal of Intellectual Disability and not just the needs of the child with a Research, 50, 184-198. disability. Finally, the research suggests that Burnette, D. (2000). Latino grandparents rearing the way family members perceive their care grandchildren with special needs: Effects of giving experience may be just as important depressive symptomology. Journal of Gerontological Social Work, 33, 1-16. for their coping and functioning as the actual Chan, J. B., & Sigafoos, J. (2001). Does respite care day-to-day demands of care giving. reduce parental stress in families with developmentally Practitioners working with young children disabled children? Child & Youth Care Forum, 30, can play an important role in helping family 253-263. members reframe their care giving experience Dellve, L., Samuelsson, L., Tallborn, A., Fasth, A., & in positive ways and assisting family members Hallberg, L. R. M. (2006). Stress and well-being in feeling like they have the knowledge, skills, among parents with children with rare diseases: A and ability to successfully advocate for what prospective intervention study. Journal of Advanced their children need. Nursing, 53, 392-402. Dellmann-Jenkins, M., Blankemeyer, M., & Olesh, M.

104 JEIBI Journal of Early and Intensive Behavior Intervention VOLUME 5 - NUMBER 3 (2002). Adults in expanded grandparent roles: autism. Journal of Autism and Developmental Consideration for practice, policy, and research. Disorders, 35, 635-644. Educational Gerontology, 28, 219-235. Hastings, R. P., & Beck, A. (2004). Practitioner review: Dempsey, I., & Dunst, C. J. (2004). Help giving styles Stress intervention for parents of children with and parent empowerment in families with a young intellectual disabilities. Journal of Child Psychology child with a disability. Journal of Intellectual & and Psychiatry, 45, 1338-1349. Developmental Disability, 29, 40-51. Hastings, R. P., & Brown, T. (2002). Behavior problems Dubowitz, H., Feigelman, S., Harrington, D., Starr, R., of children with autism, parental self-efficacy, and & Zuravin, S. (1994). Children in : How mental health. American Journal on Mental do they fare? Children and Youth Services Review, Retardation, 107, 222-232. 17, 85-106. Hayden, M. F., & Goldman, J. (1996). Families of adults Dunst, C., Trivette, C., & Deal, A. (1988). Enabling and with mental retardation: Stress levels and need for empowering families: Principles and guidelines for services. Social Work, 41, 657-667. practice. Newton, MA: Brookline Books. Hegar, R., & Scannapieco, M. (2000). Grandma’s Dyson, L. L. (1997). Fathers and mothers of school-age babies: The problem of welfare eligibility for children children with developmental disabilities: Parental raised by relatives. Journal of Sociology and Social stress, family functioning, and social support. Welfare, 27, 153-171. American Journal on Mental Retardation, 102, 267- Heller, T. (2000). Supporting adults with intellectual 279. disabilities and their families in planning and Essex, E. L., Seltzer, M. M., & Krauss, M. W. (1999). advocacy: A literature review. Physical & Differences in coping effectiveness and well-being Occupational Therapy in Geriatrics, 18, 59-73. among aging mothers and fathers of adults with Heller, T., & Caldwell, J. (2006). Supporting aging mental retardation. American Journal on Mental caregivers and adults with developmental disabilities Retardation, 104, 545-563. in future planning. Mental Retardation, 44, 189-202. Etmanski, A. (2000). A good life for you and your Heller, T., Hsieh, K., & Rowitz, L. (1997). Maternal and relative with a disability. Burnaby, BC: Planned paternal care giving of persons with mental retardation Lifetime Advocacy Network. across the lifespan. Family Relations, 46, 407-415. Ferguson, P. M. (2001). Disability studies and the Herman, S. E. (1991). Use and impact of a cash subsidy exploration of parental response to disability. In G. L. program, Mental Retardation, 29, 253-258. Albrecht, K. D. Seelman, & Michael Bury (Eds.), Herman, S. E. (1994). Cash subsidy program: Family Handbook of Disability Studies (pp. 373-395). satisfaction and need. Mental Retardation, 32, 416- Thousand Oaks, CA: Sage. 421. Force, L. T., Botsford, A., Pisano, P. A., & Holbert, A. Herman, S. E., & Marcenko, M. O. (1997). Perceptions (2000). Grandparents raising children with and of services and resources as mediators of depression without a developmental disability: Preliminary among parents of children with developmental comparisons. Journal of Gerontological Social Work, disabilities. Mental Retardation, 35, 458-467. 33, 5-21. Herring, S., Gray, K., Taffe, J., Tonge, B., Sweeney, D., Fuller-Thomson, & Minkler, M. (2000). African- & Einfeld, S. (2006). Behavior and emotional American grandparents raising grandchildren: A problems in toddlers with pervasive developmental national profile of demographic and health disorders and developmental delay: Associations with characteristics. Health & Social Work, 25, 109-118. parental mental health and family functioning. Journal Gardner, J. E., Scherman, A., Efthimiadis, M. S., & of Intellectual Disability Research, 50, 874-882. Shultz, S. K. (2004). Panamanian grandmothers’ Hung, J. W., Wu, Y., & Yeh, C. (2004). Comparing stress family relationships and adjustment to having a levels of parents of children with cancer and parents grandchild with a disability. International Journal of of children with physical disabilities. Psycho- Aging and Human Development, 59, 305-320. Oncology, 13, 898-903. Hastings, R. P., Kovshoff, H., Ward, N. J., degli Janicki, M. P., McCallion, P., Grant-Griffin, L. & Espinosa, F., Brown, T., & Remington, B. (2005). Kolomer, S. R. (2000). Grandparent caregivers I: Systems analysis of stress and positive perceptions in Characteristics of the grandparents and the children mothers and fathers of pre-school children with

105 JEIBI Journal of Early and Intensive Behavior Intervention VOLUME 5 - NUMBER 3 with disabilities for whom they care. Journal of McCallion P., Janicki, M. P., & Kolomer, S. (2004). Gerontological Social Work, 33, 35-55. Controlled evaluation of support groups for Keller, D., & Honig, A. S. (2004). Maternal and paternal grandparent caregivers of children with developmental stress in families with school-aged children with disabilities and delays. American Journal of Mental disabilities. American Journal of Orthopsychiatry, 74, Retardation, 109, 352-361. 337-348. McCarthy, A., Cuskelly, M., van Kraayenoord, C. E., & Kelley, S. J., Yorker, B. C., Whitley, D. M., & Sipe, T. A. Cohen, J. (2006). Predictors of stress in mothers and (2001). A multimodal intervention for gandparents fathers of children with Fragile X Syndrome. Research raising grandchildren: Results of an exploratory study. in Developmental Disabilities, 27, 688-704. Child Welfare, 80, 27-50. Meyers, J. C., & Marcenko, M. O. (1989). Impact of a Kersh, J., Hedvat, T. T., Hauser-Cram, P., & Warfield, cash subsidy program for families of children with M. E. (2006). The contribution of marital quality to severe developmental disabilities. Mental Retardation, the well-being of parents of children with 27, 383-387. developmental disabilities. Journal of Intellectual Mills, T. L., Gomez-Smith, Z., & De Leon, J. M. (2005). Disability Research, 50, 883-893. Skipped generation families: sources of psychological King, G. A., Zwaigenbaum, L., King, S., Baxter, D., distress among grandmothers of grandchildren who Rosenbaum, P., & Bates, A. (2006). A qualitative live in homes where neither parent is present. investigation of changes in the belief systems of Marriage & Family Review, 37, 191-121. families of children with autism or Down Syndrome. Neely-Barnes, S. L., Graff, J. C., Marcenko, M. O., & Child: Care, Health, & Development, 32, 353-369. Weber, L. A. (2008). Family decision-making: Kolomer, S. R., McCallion, P., & Janicki, M. P. (2002). Benefits to persons with developmental disabilities African-American grandmother carers of children and their family members. Intellectual and with disabilities: Predictors of depressive symptoms. Developmental Disabilities, 46, 93-105. Journal of Gerontological Social Work, 37, 45-62. Neely-Barnes, S. L., & Marcenko, M. O. (2004). Lewis, P., Abbeduto, L., Murphy, M., Richmond, E., Predicting impact of childhood disability on families: Giles, N., Bruno, L., Schroeder, S., Anderson, J., & Results from the 1995 National Health Interview Orsmond, G. (2006). Psychological well-being of Survey Disability Supplement. Mental Retardation, mothers of youth with Fragile X Syndrome: Syndrome 42, 284-293. specificity and within-syndrome variability. Journal Oelofsen, N., & Richardson, P. (2006). Sense of of Intellectual Disability Research, 50, 894-904. coherence and parenting stress in mothers and fathers Lustig, D. C. (1997). Families with an adult with mental of preschool children with developmental disability. retardation: Empirical family typologies. Journal of Intellectual & Developmental Disability, Rehabilitation Counseling Bulletin, 41, 138-157. 31, 1-12. Lustig, D. C. (2002). Family coping in families with a Olkin, R. (1999). What psychotherapists should know child with a disability. Education and Training in about disability. : The Guilford Press. Mental Retardation and Developmental Disabilities, Olsson, M. B., & Hwang, C. P. (2001). Depression in 37, 14-22. mothers and fathers of children with intellectual Marks, S. U., Matson, A., & Barraza, L. (2005). The disability. Journal of Intellectual Disability Research, impact of siblings with disabilities on their brothers 45, 535-543. and sisters pursuing a career in special education. Olsson, M. B., & Hwang, C. P. (2006). Well-being, Research & Practice for Persons with Severe involvement in paid work and division of child-care Disabilities, 30, 205-218. in parents of children with intellectual disabilities in McCabe, H. (2007). Parent advocacy in the face of Sweden. Journal of Intellectual Disability Research, adversity: Autism and families in the People’s 50, 963-969. Republic of China. Focus on Autism and Other Ow, R., Tan, T. T., & Goh, S. (2004). Diverse perceptions Developmental Disabilities, 22, 39-50. of social support: Asian mothers of children with McCallion, P., Janicki, M. P., Grant-Griffin, L., & intellectual disabilities. Families in Society: The Kolomer, S. (2000). Grandparent carers II: Service Journal of Contemporary Social Services, 85, 214- needs and service provision issues. Journal of 220. Gertontological Social Work, 33, 57-84.

106 JEIBI Journal of Early and Intensive Behavior Intervention VOLUME 5 - NUMBER 3 Parish, S. L., Seltzer, M. M., Greenberg, J. S., & Floyd, Taunt, H. M., & Hastings, R. P. (2002). Positive impact F. (2004). Economic implications of care giving at of children with developmental disabilities on their midlife: Comparing parents with and without children families: A preliminary study. Education and Training who have developmental disabilities. Mental in Mental Retardation and Developmental Disabilities, Retardation, 42, 413-426. 37, 410-420. Pinson-Millburg, N. M., Schlossberg, N. K., and Pyle, Toseland, R. W., Smith, G., & McCallion, P. (2001). M. (1996). Grandparents raising grandchildren. Helping family caregivers. In A. Gitterman (Ed.). Journal of Counseling and Development, 74, 548- Handbook of social work practice with vulnerable 555. populations, (pp. 548-581). New York: Columbia Plant, K. M., & Sanders, M. R. (2007). Care-giver stress University Press. in families of preschool-aged children with Wang, M., Summers, J. A., Little, T., Turnbull, A., developmental disabilities. Journal of Intellectual Poston, D., & Mannan, H. (2006). Perspectives of Disability Research, 51, 109-124. fathers and mothers of children in early intervention Ricci, L. A., & Hodapp, R. M. (2003). Fathers of programmes in assessing family quality of life. children with Down’s Syndrome versus other types of Journal of Intellectual Disability Research, 50, 977- intellectual disability: Perceptions, stress, and 988. involvement. Journal of Intellectual Disability Warfield, M. E. (2001). Employment, parenting, and Research, 47, 273-284. well-being among mothers of children with disabilities. Saloviita, T., Italinna, M, & Leinonen, E. (2003). Mental Retardation, 39, 297-309. Explaining the parental stress of fathers and mothers Weinger, S. (1999). Views of the child with retardation: caring for a child with intellectual disability: A double Relationship to family functioning. , ABCX model. Journal of Intellectual Disability 26, 63-79. Research, 47, 300-312. Ylven, R., Bjorck-Akesson, E., & Granlund, M. (2006). Scorgie, K., & Sobsey, D. (2000). Transformational Literature review of positive functioning in families outcomes associated with parenting children who with children with a disability. Journal of Policy and have disabilities. Mental Retardation, 38, 195-206. Practice in Intellectual Disabilities, 3, 253-270. Simmerman, S., Blacher, J., & Baker, B. L. (2001). Fathers’ and mothers’ perceptions of father Authors Note involvement in families with young children with a disability. Journal of Intellectual and Developmental Susan L. Neely-Barnes, MSW, Ph.D. is an Disability, 26, 325-338. assistant professor at The University of Smith, T. B., Oliver, M. N. I., & Innocenti, M. S. (2001). Tennessee, College of Social Work, 711 Parenting stress in families of children with disabilities. Jefferson Ave., Room 607W, Memphis, TN, American Journal of Orthopsychiatry, 71, 257-261. 38163, (901) 448-4460, [email protected]. Stainton, T., & Besser, H. (1998). The positive impact David A. Dia, MSW, Ph.D. is an assistant of children with an intellectual disability on the family. professor at The University of Tennessee, Journal of Intellectual & Developmental Disability, College of Social Work, 711 Jefferson Ave., 23, 56-69. Room 607W, Memphis, TN 38163, (901) Stein, R. E. K., & Jessop, D.J. (1989). What diagnosis 448-4431, [email protected]. does not tell: The case for a noncategorical approach to chronic illness in childhood. Social Science & Medicine, 29, 769-778.

107