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Families of Children with Disabilities: a Review of Literature and Recommendations for Interventions

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Families of Children with Disabilities: a Review of Literature and Recommendations for Interventions JEIBI Journal of Early and Intensive Behavior Intervention VOLUME 5 - NUMBER 3 FaMILIES OF CHILDREN WITH DISABILITIES: 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 caregivers 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 disability. 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 developmental disability 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 mental health (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 autism. 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 caregiver 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
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