Family Relations

Farrell, Anne F.; Krahn, Gloria L.

2014 Family Relations

doi: 10.1111/fare.12053pmid: 26185356

Disability is part of life for most contemporary families, but to date the literature on disability in families is fragmented and narrow. This editorial commentary introduces the content and findings of peer‐reviewed articles appearing in a special issue of Family Relations. The editors outline unanswered but core research questions and preview the themes present in the issue: families with disabilities are diverse; economic hardship disproportionately characterizes their lives; family life with disabilities is a journey that includes stress and resilience, with support contributing significantly to the latter; and that work benefits and taxes family life. Articles extrapolate beyond findings to explore implications for family policy and practice. The editors assert that developing understanding of how disability influences families requires a more diverse and rigorous research portfolio. They further cite the need to embed disability as a variable in a range of family studies and advocate more outlets for publication.

Fujiura, Glenn T.

2014 Family Relations

doi: 10.1111/fare.12051

Demographic summaries of family households are used to draw a portrait of disability in the family. The vast majority of persons with disabilities live in a family setting, and families with a disabled member represent a significant share of all families in the population. The observed prevalence of disability within a family ranged from 22 to 37 per 100. No prototypical family type emerges in the data; household structure was variable and interacted in a complex fashion with key demographics. Economic hardship is exacerbated among families with disabilities and especially among racial or ethnic minority households, families headed by a single parent, and households that had multiple members with a disability. Related statistics on caregiving among family members indicates that the need for support from other family members is considerable. The implications for policy of selected demographic features of family households are discussed.

Altman, Barbara M.; Blackwell, Debra L.

2014 Family Relations

doi: 10.1111/fare.12044pmid: 26962270

Understanding the demographic structure of households containing members with disabilities is of key importance in policy planning for populations with disabilities at state and national levels. Yet most, but not all, previous family‐level studies of disability have excluded persons living alone or with unrelated persons (e.g., a housemate or an unmarried partner) because they are not considered families. To address this gap, the authors utilize National Health Interview Survey data to produce household‐level estimates of disability using a detailed household type variable that includes households omitted from previous reports. Findings indicate that one‐person households made up 24.7% of all households with an adult age 18 to 64 with a disability, and 42.9% of all households with an adult age 65 or older with a disability. Including nonfamily households provides a clearer picture of the association between living arrangements and disability in the United States.

Woodman, Ashley C.

2014 Family Relations

doi: 10.1111/fare.12049

Parents of children with developmental disabilities (DD) face greater caregiving demands than other parents, which may lead to heightened levels of stress. Characteristics of the child with DD as well as family resources may explain the extensive variability observed in parental adjustment. This study examined trajectories of parenting stress among 108 mother–father dyads parenting a child with DD, from early childhood (age 3) through adolescence (age 15). Using multilevel dyadic analyses, stress was found to increase from early to middle childhood then subsequently decrease through adolescence. Child‐related stressors (behavior problems, adaptive behavior) and family resources (social support, positive family climate) in early childhood predicted initial levels and change in stress. Mother–father differences and recommendations for intervention are discussed.

Farrell, Anne F.; Bowen, Gary L.; Swick, Danielle C.

2014 Family Relations

doi: 10.1111/fare.12045

Understanding how military families who have children with special health care needs (CSHCN) successfully cope in the context of exceptional demands of the military lifestyle can inform scholarship, policy, and practice to the benefit of families. Using data from 775 female civilian parents (mothers serving as Key Spouses) married to active duty Air Force members, this study examined differences on dimensions of network support and spouse resiliency between mothers who do and do not have CSHCN, as well as the relative contribution of formal and informal network support to variation in self-reports of resiliency among mothers with CSHCN. Mothers with CSHCN experience significantly less formal and informal network support than their counterparts. Despite this, they reported equivalent overall resiliency, with lower perceived resiliency on only one of four resiliency outcomes. More formal and informal network support was generally associated with higher resilience. Implications for policy, practice, and research are discussed.

Smith, Ashlyn L.; Romski, MaryAnn; Sevcik, Rose A.; Adamson, Lauren B.; Barker, R. Michael

2014 Family Relations

doi: 10.1111/fare.12048pmid: 24753637

This study extended research on the Down syndrome advantage by examining differences in parent stress and parent perceptions of language development between 29 parents of young children with Down syndrome and 82 parents of children with other developmental disabilities. Parents of children with Down syndrome reported lower levels of total stress, child‐related stress, and stress surrounding the parent–child interaction. Parents of children in both groups reported that they felt successful in their ability to affect their children's communication development but did differ on perceptions of difficulty such that parents of children with Down syndrome perceived their children's communication difficulties as less severe despite the children exhibiting similar language skills. Finally, after accounting for potential explanatory confounding variables, child diagnosis remained a significant predictor of parent stress and perceptions of language development. Results highlight the importance of considering etiology when assisting families raising a child with a disability.

Bailey, Donald B.; Lewis, Megan A.; Roche, Myra; Powell, Cynthia M.

2014 Family Relations

doi: 10.1111/fare.12054

Interest in the familial aspects of disability has heightened in recent years. Three forms of disability—hearing loss, Fragile X syndrome, and autism spectrum disorders—are used here to illustrate the complex and rapidly evolving understanding of the meaning and nature of heritability and carrier status for disability. The authors raise six questions to address if the promise of genomic research leads to real benefits for families: (a) Is the public interested in carrier testing? (b) Who is responsible for carrier testing? (c) Is the public prepared to use genomic information? (d) Should genomic testing or information about testing be tailored to specific audiences or target populations? (e) What strategies can be used to enable informed decision‐making? (f) How will carrier testing affect family relationships and communication patterns? These and other factors will require a comprehensive analysis of the individual and societal implications for family relations in the genomic era.

Morris, Lisa A.

2014 Family Relations

doi: 10.1111/fare.12050

There is a growing literature examining the impact of work and family responsibilities on the psychological well‐being of parents of children with disabilities and other special needs. A number of studies using small, nonprobability samples of mothers find that work provides a respite from the stressful effects of caregiving. Using data from the National Survey of American Families, this study found higher mental health among working mothers of older children with disabilities compared to their nonworking counterparts and mothers of typically developing children, a result consistent with caregiver‐specific positive spillover. No significant differences in mental health were found among working and nonworking mothers of younger children with disabilities or among fathers. Results also indicate that caregiver mothers who are experiencing high levels of parent‐role stress benefit more from work, and that the beneficial effects from work persist until rather high levels of work (50 or more hours per week).

Song, Jieun; Mailick, Marsha R.; Greenberg, Jan S.

2014 Family Relations

doi: 10.1111/fare.12043pmid: 24489424

This study examined the effects of work schedule flexibility and the spillover of work stress to family life on the health of parents of adult children with serious mental illness (SMI). The authors compared 100 parents of adult children with SMI to 500 parents with nondisabled adult children using data from the Wisconsin Longitudinal Study. The detrimental impact on health of a lack of work flexibility and of higher levels of negative work‐to‐family spillover was more pronounced among parents of adult children with SMI than parents with nondisabled adult children. The results have significant implications for developing interventions to help midlife families of persons with SMI cope with work‐related stress and for policies that provide for greater work schedule flexibility.

Wong, Jen D.; Mailick, Marsha R.; Greenberg, Jan S.; Hong, Jinkuk; Coe, Christopher L.

2014 Family Relations

doi: 10.1111/fare.12055pmid: 25313265

The effect of daily work stress on the next morning's awakening cortisol level was determined in a sample of 124 mothers (M age = 49.89, SD = 6.33) of adolescents and adults with developmental disabilities and compared to 115 mothers (M age = 46.19, SD = 7.08) of individuals without disabilities. Mothers participated in 8 days of diary telephone interviews and provided saliva samples. Multilevel models revealed that mothers of individuals with developmental disabilities had lower awakening cortisol levels than comparison mothers. Work stress interacted with parental status to predict the awakening cortisol level on the following morning. When mothers of individuals with developmental disabilities experienced a work stressor, their awakening cortisol level was significantly higher on the subsequent morning, but for comparison mothers, work stressors were not significantly associated with cortisol level. Findings extend understanding of the differential impacts of specific types of stressors on physiological functioning of mothers of individuals with and without developmental disabilities.

Burbidge, Julia; Minnes, Patricia

2014 Family Relations

doi: 10.1111/fare.12047

The authors' first study compared participants' relationships between their siblings with and without a developmental disability (DD) and examined the effect of gender on sibling relationships. The second study explored how adults with a DD perceived their sibling relationships. Adults (n = 128) who had a sibling with and without a DD completed questionnaires about relationship closeness and contact. Participants reported more in‐person and telephone contact with siblings with a DD and more positive feelings about the sibling relationship. Gender was not related to the relationship with a sibling with a DD, whereas sisters reported closer relationships and more contact with sisters without a DD as compared to brothers without a DD. Seventeen adults with a DD also completed interviews about shared activities, contact, and sibling support. Participants indicated a desire to spend more time with siblings and reported that they provided support to and received support from their siblings.

Zehner Ourada, Verna E.; Walker, Alexis J.

2014 Family Relations

doi: 10.1111/fare.12046

Using data from the National Survey of Midlife Development in the United States and using the stress process model, this study compared caregiving parents and caregiving adult children with regard to health outcomes. The study sample consisted of 74 caregiving parents and 219 caregiving adult children. Predictors included type of family relationship, provision of activities of daily living, duration of caregiving, and family demands. Social support did not mediate the relations between significant predictor variables and health outcomes. The type of family relationship was associated with health outcomes with caregiving parents demonstrating poorer self‐perceived health and more chronic conditions than caregiving adult children. Perceived family demands were associated with increased number of chronic conditions for caregiving adult children and caregiving parents. Unlike previous studies that measured objective family demands, perceived family demands was found to have a strong association with the number of chronic health conditions for both groups of caregivers.

Wehmeyer, Michael L.

2014 Family Relations

doi: 10.1111/fare.12052

Due to the advocacy of families during the 20th century, children and youth with disabilities gained access to a free, appropriate education. Although people with disabilities have made significant strides in the past quarter century, in the United States and across the world, people with significant disabilities continue to experience disproportionate levels of unemployment, have few options other than to live with their families, and experience a diminished quality of life. To address this, the educational system has focused on supports and services to ensure that young people with disabilities transition from school to adulthood more successfully. Within these efforts, the promotion of self‐determination for secondary students with disabilities has become best practice, and there exist evidence‐based methods, materials, and strategies to achieve this outcome. This article discusses the importance of self‐determination for youth with disabilities to achieve successful lives and the important role that families play in that process.

Swenson, Sue; Lakin, Charlie

2014 Family Relations

doi: 10.1111/fare.12056

Families provide priceless support to members with disabilities. Without the support of families the lives of most individuals with disabilities would be diminished in comfort, independence, opportunity, and caring relationships. Without the support provided to individuals with disabilities by family members, public expenditures for nonfamily assistance would be several times what is currently expended. In its responsibilities to the well‐being of individual citizens and to the efficient and effective use of public resources, governments struggle to accommodate the great diversity among families in what they want and what they need. Governments are challenged in targeting limited resources to reach those who need them most, in the amounts that are most cost‐effective, and in a manner that is most beneficial to the family and its member(s) with disabilities. The attention on support to families is further complicated by changes in families and their individual members as they pass through lifecycles of changing relationships, expectations, aspirations, and capabilities. This article offers a modest commentary on how in the midst of such complexities our society can develop fair, effective, and cost‐beneficial approaches to supporting families and their individual members.