Laraine Masters Glidden

More Positive or Less Negative? Trends in Research on Adjustment of Families Rearing Children With Developmental Disabilities

We reviewed family adjustment research over a 20-year period to determine whether it reflected less negative and/or more positive conceptions of families rearing children with developmental disabilities. Two judges, unaware of the purpose of the study, independently rated 60 articles, 20 from each of 3 time periods: 1971-1975, 1983, and 1993. Results indicated that although negativity declined from the 1970s to 1983, there was no concomitant increase in positivity. In our conclusion we emphasize that the changes were real, but small, and that most investigators still write about family adjustment in a predominantly negative tone.

Siblings of Persons With Disabilities: Toward a Research Agenda

We begin this special section with an article entitled ‘‘Toward a Research Agenda.’’ To some, this subtitle may seem strange. After all, Grossman (1972) published her landmark study of collegeaged siblings more than 3 decades ago. Since that time, numerous investigators have examined sibling feelings, functioning, and relationships. Meyer and Vadasy (1994) have produced ‘‘sibshops’’ to help siblings, and both popular (McHugh, 2003) and scholarly (Stoneman & Berman, 1993) books have appeared in which authors described issues involved in growing up as a sibling of a brother or sister with disabilities. Despite such advances, however, research on siblings of individuals with disabilities remains underdeveloped. As Stoneman (2005) noted, many researchers have produced one or two sibling studies, but, except for some of the contributors to this special issue, few investigators are primarily identified as ‘‘sibling researchers.’’ Sibling studies are also beset with difficult methodological, statistical, and practical issues, and many topics have not been examined. Ironically, this underdeveloped field exists within the context of demographic changes that highlight sibling relationships. Consider the issue of aging. Like the overall general population, persons with disabilities are living increasingly longer lives. Currently, 526,000 Americans with disabilities are 60 years or older and that number is expected to triple—to over 1.5 million—by 2030 (National Center for Family Support, 2000). Given that 60% of these adults are cared for by aging parents in the family home, who will take care of them when their parents no longer can? Adult siblings of adults with disabilities are the assumed future caregivers, but the needs of adult siblings have remained relatively unexplored. Faced with this discrepancy between an underdeveloped field and an important social issue, we decided to edit a special section of Mental Retardation devoted to siblings of persons with disabilities. Our goal is to stimulate additional research by identifying themes that highlight current challenges and future directions. To that aim, we described six themes in this article.

Positive Adjustment in Parents Rearing Children with Down Syndrome

The current research investigated adjustment in mothers and fathers rearing children with Down syndrome. Families who had a Down syndrome child by birth were compared with families who had knowingly adopted a child with Down syndrome and, therefore, were likely to be well-adjusted. With this design, child characteristics were controlled to assess more accurately the impact of a birth of a child with developmental disabilities on family adjustment. For this study, both mothers and fathers completed the Family Strengths Inventory, the Holroyd QRS, and the Locke-Wallace Marital Adjustment Test. Additionally, mothers only (n = 105) completed the Beck Depression Inventory and the Nelson Index of Parental Satisfaction with Child. Results demonstrated that birth mothers and fathers were functioning quite similarly to adoptive mothers and fathers on the outcome variables. Only one significant difference at p < .01 was found and the adoptive/birth factor accounted for only 8% of its variance. Overall, birth as well as adoptive, families appeared to be adjusting well to the challenges of rearing a child with Down syndrome.

Adopted children with developmental disabilities: Post-placement family functioning

Abstract Post-placement mother and family functioning was examined in 87 families who had adopted children with developmental disabilities. Using a semistructured interview and self-report questionnaire methodology, the relationships among 9 predictor and 4 outcome variables were assessed. Although, in general, adoptive mothers expressed high satisfaction with the adoptions, several variables did significantly differentiate outcomes perceived as more and less successful. Specifically, the familys initial reactions to the placement were positively related to adjustment approximately 5 years later, whereas demographic variables such as educational level and family income did not predict outcome. The placements with the best self-reported outcomes were ones in which mothers had few reservations and nondepressed functioning at the beginning of placement, were married, had greater experience with handicapping conditions, and had stronger religious beliefs. These results were discussed with reference to their implications for adoption placement and post-placement interventions and services.

Coping strategy use, personality, and adjustment of parents rearing children with developmental disabilities

BACKGROUND Parents rearing children with developmental disabilities encounter stressors that require coping and adaptation. In Glidden et al. 2006, the use of problem-focused coping strategies was more often associated with positive adjustment outcomes than was the use of emotion-focused coping strategies, and parental personality was shown to influence outcomes, with Neuroticism, in particular, associated with lower well-being. METHOD In the current study we aimed to replicate these results for adjustment outcomes measured 6 years later. Sixty-eight married couples parenting at least one child with developmental disabilities completed measures of depression and subjective well-being, and the Transition Daily Rewards and Worries Questionnaire, an inventory that assesses parental reaction to children transitioning into adulthood. RESULTS For both mothers and fathers, combinations of personality factors and coping strategies were able to significantly predict outcome variables measured 6 years later. Personality, however, was a better predictor for mothers, whereas coping strategies predicted more variance for fathers. Distancing, especially, demonstrated mother-father differences. CONCLUSIONS For the most part, the current results demonstrated that the relations among personality, coping and parental outcomes were consistent and stable over the 6-year interval. In addition, although we found some differences between mothers and fathers, there were also many similarities in the frequency of use of different coping strategies, and in the direction of influence of personality and coping strategy on outcome variables.

Twelve years later : Adjustment in families who adopted children with developmental disabilities

In most studies positive outcomes for families who have adopted children with developmental disabilities have been described. In this previous research, however, investigators have examined primarily short-term adjustment. In contrast, in the current longitudinal investigation 9 years after an initial interview, we assessed the adjustment and functioning of families who have adopted children with developmental disabilities. Results indicate that nearly 12 years after their adoptions, families remaining in the study reported generally positive outcomes and good adjustment to their adopted children. Whereas there were changes in these families, especially as the children approached adolescence and early adulthood, these changes were perceived as potential sources of reward as well as sources of stress.

Family Assessment and Social Support

An explosion of research on families and developmental disabilities occurred during the last two decades of the 20th century and is continuing into the 21st century. The Mental Retardation/Developmental Disabilities Branch of the National Institute of Child Health and Human Development sponsored conferences, workshops, and requests for applications on many aspects of family adjustment. The American Association on Mental Retardation published a special collection of journal articles (Blacher & Baker, 2002) and special issues of the American Journal on Mental Retardation (1989) and the Journal of Intellectual Disability Research (2003) were devoted to the topic. Driven by the greater likelihood that persons with developmental disabilities (DD) would live longer and with their families, the need for understanding the influence of the family assumed a high priority. This influence was seen as transactional, with attention directed both to understanding the effect of a person with DD on the family, as well as the effect of the family on persons with DD. In the 1998 Handbook of Mental Retardation and Development (Burack, Hodapp, & Zigler, 1998), no fewer than five different chapters addressed, as their primary content, issues related to family influences and adaptation. Because of these chapters and a comprehensive review by Stoneman in Ellis’ Handbook of Mental Deficiency, Psychological Theory and Research (MacLean, 1997), we have adopted the following guidelines for this chapter:

Measuring parental daily rewards and worries in the transition to adulthood.

Psychometric properties are described for an inventory that measures the daily rewards and worries that parents experience as their sons and daughters transition to adulthood. In a series of 4 studies involving 847 respondents, we explored and confirmed the factor structure of the Transition Daily Rewards and Worries Questionnaire (TDRWQ) in a sample that included transitioning individuals with and without disabilities. The final questionnaire includes 28 items in 4 factors: Positive Future Orientation, Community Resources, Financial Independence, and Family Relations. Evidence of acceptable internal and test- retest reliability is presented, as is discriminant and convergent validity. The TDRWQ should enhance the quantitative approach to understanding parental reactions as sons and daughters make the transition to adulthood.

Availability and accessibility of information in the semantic memory of retarded and nonretarded adolescents.

Abstract The availability of semantic information in storage and the accessibility of that information for retrieval were studied in retarded and nonretarded adolescents. In Experiment 1, 40 normal and 40 CA-equivalent (mean, 15 years) retarded subjects were required to retrieve information from semantic categories as well as to judge whether specific items were members of a given category. The results showed large IQ group differences on the retrieval task which could not be wholly accounted for by the items available in storage. Experiment 2 was designed as an attempt to remediate this retrieval deficit by introducing an organized retrieval plan consisting of subcategory cues. This organization facilitated retrieval as long as it was experimentally provided. Retrieval returned to its original level, however, when the cues were withdrawn. It was concluded that retarded persons had an accessibility deficit in addition to an availability deficit; one aspect of this accessibility deficit involved the failure to use spontaneously mnemonic strategies that were consistent with the semantic organization.

Transracial Adoption of Children with Developmental Disabilities: A Focus on Parental and Family Adjustment

ABSTRACT This study investigated the transracial adoption of children with developmental disabilities. Thirty-four families who had adopted a child transracially were compared with 63 families who had adopted a child inracially; additionally, we compared adoptions in 13 families who had adopted both transracially and inracially. The adjustment of mothers and fathers was gauged separately at three time points using measures of depression, stress, family strengths, and subjective well-being. Results indicated few differences in functioning between transracial and inracial adoptive parents. Mothers in both conditions maintained low depression scores and comparable means on all other outcome variables. Fathers also revealed similar adjustment patterns despite adoption type. Thus, parents experience both short- and long-term positive outcomes from the transracial adoption of children with developmental disabilities.