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AbstractObjectiveThe purpose of this study was to develop a measure of readiness to be trained as a supporting parent volunteer for the Parent to Parent USA Network.BackgroundParents of children with disabilities may suffer from isolation, stress, and depression due to increased burden of caregiving, lack of knowledge about disability, stigmatization by community and family and/or reduced family income. Peer support can serve as a buffer to stress.MethodsMeasure items are based on qualitative findings and a review of relevant literature. Exploratory factor analysis was employed to determine the factor structure, and predictive validity was assessed using two‐sample t tests.ResultsThe 17‐item measure comprised three factors—Into Action, Wellbeing, and Skills and Navigation—and demonstrated good internal consistency. Additionally, significant differences in readiness score were found between parents who had and those who had not been trained to be peer supports and parents who had and had not received support from P2P.ImplicationsThis measure may facilitate further study and evaluation of P2P and may be useful to other programs serving families of children with special educational or health care needs.

This article describes a nonaversive procedure to increase the probability that students with moderate and severe handicapping conditions will follow a directive to begin to work. Pretask requesting was evaluated using an ABA and BAB reversal design across four students with moderate and severe handicaps. The study suggests that familiar, rapidly paced, verbal directions with reinforcement can effectively mediate transitions from one activity to another. The theoretical implications of the procedure for a nonaversive technology of preemptive behavioral treatment are discussed.

This article examines findings from a national survey of a sample of special educators who serve students with moderate to severe disabilities who are English language learners (ELLs). The survey requested information related to respondent assessment and instructional practices, second language resource availability, satisfaction, and language decision procedures for ELL students. Results indicated many of the respondents assessed and instructed their students in English, lacked ELL training, experienced resource shortages, and did not include parents in the language of instruction decision. Additional findings revealed that teacher satisfaction was predicted by the availability of second language resources, and the administration appeared to have a significant influence on the inclusion/exclusion of parents in the language decision process. The implications of these findings are presented.

TASH's historic commitment to advocacy and science has enabled it to be a trusted voice for people with severe disabilities and their families. We review recent developments in the controversy over facilitated communication (FC) in light of major contextual continuities and changes in the past two decades. A series of scholarly reviews of the literature on controlled experiments have established a preponderance of evidence that FC is not reliably an expression from the individual who receives facilitation. Evidence indicates that the facilitator is the usual source of the text. We discuss the standards of proof of efficacy that must apply before an intervention should be endorsed by a national organization that aims to have a major impact on policy and practices. The need for controlled experiments in evaluation interventions is discussed. The central concern in establishing efficacy of a practice is to rule out other plausible explanations for an outcome. The main concern in establishing effectiveness is replication under real-world conditions. The science-based practices movement has been taken up by most of the helping professions contributing to the education and support of people with severe disabilities. The movement aims to identify practices and catalog them in terms of the trustworthiness of the evidence supporting them. The movement has led to establishing standards for determining when an intervention can be said to be efficacious. We urge TASH to join this movement and, in light of a commitment to science-based practices, argue that it should withdraw its stated endorsement of FC, which is not supported by science-based research.

This article describes a participatory action research (PAR) project designed to evaluate Parent to Parent programs in five states in the United States. The PAR team consisted of two groups: 1) parent leaders of programs that create one-to-one matches between help-seeking parents of children with disabilities and volunteer supporting parents and 2) university-based researchers. Based on a narrative record of the project, critical incidents are presented along with reflections of factors that contributed to the success of the project overall. The project successfully gathered evaluative data about Parent to Parent self-help programs. Results of both the PAR project and the study it created are presented. A process of developing a shared understanding of the programs and of the purposes for evaluating them, along with an on-going willingness of parents and researchers to compromise, led to creative solutions to difficulties that arose in meeting the needs of researchers and parents. As a result of the project, published data from a controlled experimental study are now available showing that Parent to Parent assisted parents in developing more positive views of their circumstances and a stronger sense of efficacy in coping with family and child challenges. Interviews indicated some of the reasons why Parent to Parent succeeds and fails. The study also revealed operational problems in the programs that were previously unrecognized. As a result of the project, the participating programs have made several changes to improve their services and they have begun to use the research data to support their legitimacy to funders and to expand their services to new populations.

This article presents an evaluation of a multi-element parent and family support intervention for parents of school-aged persons with severe disabilities. Using an experimental design, we compared two randomly assigned groups of parents: one group received a modest level of support consisting of respite care and case management, and the second group received an intensive intervention that consisted of stress management and parenting skills training, support groups, and additional community-based respite care. Separate MANCOVA analyses were conducted for mothers and fathers. Mothers showed significant improvement on measures of depression and anxiety. Further analysis of the data revealed that a significantly greater number of intensive support group members also achieved clinically significant improvement on measures of anxiety and depression. Fathers participated in smaller numbers than mothers. A power analysis revealed large treatment effects for fathers as well as mothers although, due to the small sample size, the results for fathers were significant at p = 0.07. Analyses of 1-year follow-up data revealed that treatment gains maintained for mothers. We discuss the results and limitations of this study in light of current efforts to create family support services nationwide.

At the 2016 TASH Conference in St. Louis, a research colloquium was held that focused on the state of selected life-span services for people with severe disabilities. Topics addressed by leading experts in the field included inclusion, teaching academic skills, family support, challenging behavior, supported employment, and voting. This article summarizes the information presenters shared at the colloquium. The presenters prepared a short response with a minimum number of citations based on the material they presented, which focused on the description of the practice, extent to which practices are implemented, challenges to implementing the practice, and recommended practices. Although all contributors suggested that much progress has been made, they concurred that there is still much to do in serving people with severe disabilities and their families.

A rural deinstitutionalization project for young people who experience multiple handicaps and exhibit maladaptive behavior is described. The problems associated with rural service delivery and residential services for young people with problem behaviors are discussed. Measures of adaptive behavior change, maladaptive behavior, daily activities, and consumer satisfaction indicate that young people can be successfully deinstitutionalized regardless of their skill level, their behavior problems, or the geographic nature of their receiving region.

This study examined the levels of maternal stress and efficacy for Spanish- and English-speaking Latina mothers whose infants were in neonatal intensive care. Thirty-two Latina mothers participated in the study. Significant group differences were found between Spanish- and English-speaking Latina mothers. More stress was experienced by Spanish- than English-speaking Latina mothers in communicating with NICU staff, in general and learning about infant caregiving tasks, in particular. Maternal efficacy was not related to stress experienced by these mothers in the NICU. Implications for early interventions and future directions for research are discussed for Latina mothers and their newborn infants with special needs.

This article presents a study of Mexican immigrant families' beliefs and goals about caregiving and development for their infants with prematurity, low birth weight, and/or intensive health care needs, as well as their experiences with neonatal intensive care services. Interviews with six families were conducted primarily in Spanish, transcribed, and analyzed in a structured procedure following one major tradition of qualitative research. The study revealed that the Mexican immigrant families had distinct caregiving beliefs for their infants, and certain hospital practices were different from their beliefs and customs. Communication and cultural barriers were identified stressors for families in the neonatal intensive care unit. Extended family members were described as a valuable source of support and information about health and infant caregiving practices. Implications for neonatal intensive care service delivery and suggestions for further research are discussed.