The purpose of this study was to explore the unique experiences and specific needs of single parent families while assessing their level of stress raising a developmentally disabled child.

Parents of children with disabilities need accurate information to help them provide tailored services and supports to their families. This is especially true for immigrant Latino families who tend to experience poor overall health and who tend to avoid formal services and supports.Based on input gathered from Latino Parents of children with disabilities, a three module curriculum, "Empowering Families," was developed. Following a cultural appropriateness review of the curriculum and associated measurement instruments, revisions were made to the content and presentation procedure. This was followed by a field test of the curriculum with two groups of Latino parent/caregivers of children with developmental disabilities. Results from the training sessions with both groups indicate that the training resulted in moderate knowledge gains and that self-reported healthy lifestyle behaviors experience minimal improvement. Overall health status was essentially unchanged. Participants rated the content very highly in terms of cultural appropriateness and usefulness.

This study investigated the effects of job preference and job match on job performance among four 19-to 20-year-old young adults with developmental disabilities placed in community-based job conditions. Prior studies have examined the effects of job preference on community-based job performance without the job-matching component. The researcher identified high-preference, high-match and low-preference, low-match job conditions and tasks using a video web-based assessment program. Each participant was subsequently placed in a randomized sequence of 30-min sessions on one high-preference, high-match job condition performing a preferred task and one low-preference, low-match job performing a non preferred task. Job coaches instructed and prompted participants throughout the study, teaching job tasks based on criteria specified by the employer or industry standard. Data collectors recorded data on (a) on-task performance, (b) productivity, (c) quality and quantity of work, (d) job satisfaction as measured through participant judgment of preferred and well-matched jobs, and (e) an independent observer's judgment of well-matched jobs. The researcher found higher productivity, accuracy, and job satisfaction across all participants on the high-preference, high-match jobs as well as higher quantity of work completed for three of the four participants. On- task levels remained high in both job conditions for three of the four participants. Results are discussed in terms of variables in and limitations to this study as well as suggestions for future research.

"September 2008" A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Occupational Therapy. Typescript Project Advisor : Elysa Roberts Occupational justice recognizes that all people have the right to occupational engagement because it is through occupational engagement that people experience well-being. Occupational injustice occurs when outside forces prevent people from engaging in occupation, require participation in activities that they find meaningless, or prevent people from making choices about their occupations. People with developmental disabilities in a day program are at risk for occupational injustice because they require environmental support in order to engage in occupation. This phenomenological study explored occupational engagement of adults with moderate to severe disabilities in a day program by examining what the staff members and consumers found meaningful within the program activities and capturing how the consumers exhibited occupational engagement. This study understood occupational engagement in terms of meaning, self-choice, and motivation leading to involvement in occupation. The methods involved phenomenological interviews with 10 staff members regarding satisfying and dissatisfying experiences working with the consumers, interviews with 10 consumers with moderate to severe developmental disabilities regarding the activity groups using visual supports to enable participation, and four observations of consumers in preferred and less preferred activity groups using the Volitional Questionnaire. Strategies were employed to ensure trustworthiness of the data and analysis including dense description, data triangulation, member checks, peer review, reflexive journaling, and the use of a structured observation tool with demonstrated reliability and validity. Thematic analysis demonstrated that staff members found meaning in the day program activities through Consumer Engagement in Program Activities and Reciprocal Interaction, and the consumers found meaning in the day program activities through Doing/Active Engagement and Respectful Interaction. The consumers demonstrated occupational engagement through the following themes: Doing Activity/Initiating Action, Positive Affect, and Focused Attention. The findings demonstrated the influence of a supportive environment, choice, and relationships between consumers and staff members that may be reflective of co-occupation on occupational engagement. This information is important in order to build the body of knowledge regarding occupational engagement in an infrequently studied population, understand the implications related to such persons' occupational justice, and include the perspectives of people with moderate to severe cognitive disabilities in the study of occupation.

Children with chronic conditions often participate in therapy, but there is little information about how often or for how long therapy services should be provided. Participatory action research (PAR) methods were utilized in this study and, therefore, involved both parents and occupational and physical therapists throughout the study. Parental interviews were conducted to understand parent perception of self-management and how parents felt their child’s therapist was doing or could do to facilitate self-management, particularly as it related to discharge planning or having their child take a break from ongoing therapy. Through analysis of parent interviews completed by the therapist team and additional parent feedback on priorities for change, there were several concerns parents identified as being important to them when thinking about long-term therapy planning. A shared decision making tool and supporting documents were subsequently developed and tested as a method for enhancing collaborative conversations between the parent and therapist regarding a long-term therapy plan for the child. During follow-up parent interviews, parents were able to clearly voice long-term goals or a long-term plan for their child’s therapy, and they had a more positive reaction to the idea of taking a break from ongoing therapy services. Use of PAR methodology in this study was effective in allowing parents and therapists to co-create a change that both parents and therapists identified as an improvement (during follow-up interviews with parents and a focus group with therapists).

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BACKGROUND/RATIONALE: Persons with intellectual and developmental disabilities (pIDD) face barriers to quality health care, including psychiatric care, that result in worse health outcomes. While the mental healthcare community is increasing attention towards the psychiatric needs of pIDD, there continues to be a deficit of knowledge regarding psychiatric conditions, including suicidality. Engaging in community-based participatory research (PAR) with pIDD is the ethical way to address these deficits. An academic researcher (AR) must first educate herself on lessons from disability rights activism and disability bioethics. OBJECTIVE: Apply the intertwining history and principles of disability rights movements and disability bioethics to lessons learned from previous PAR with pIDD in order to propose a PAR project that aims to alleviate knowledge deficits regarding suicidality in pIDD. METHODS/APPROACH: Historical research will focus on landmark texts in disability rights movements and disability bioethics. Lessons learned from previous PAR is mostly obtained from reflexive accounts on behalf of the AR and outside of psychiatry. Analyzing these sources will result in a proposal of six principles that can guide the AR when ethically engaging in PAR with pIDD. RESULTS: The AR must understand the history of society valuing non-disabled lives over disabled lives, inclusive of pIDD, and the social model of disability as it relates to the human variation model. When engaging with pIDD, the AR can question the traditional definition of vulnerable populations, challenge the group to progress beyond informed consent, continually support a capacity-building approach to research and power-sharing skills, and embrace empowerment to enact political change. DISCUSSION: ARs, pIDD, and pIDD advocates must not accept the dearth of knowledge regarding psychiatric conditions, including life-threatening suicidality, in pIDD. The medical community should prioritize PAR with persons with pIDD to elucidate psychiatric conditions in pIDD that result in more efficacious and compassionate treatment. This proposal outlines major principles through which the AR can move forward ethically by engaging in PAR with pIDD. / Urban Bioethics

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