Including people with intellectual and other cognitive disabilities in research and evaluation teams: A scoping review of the empirical knowledge base.

We conducted a rapid scoping review of empirical studies to identify how persons with intellectual and other cognitive disabilities have been engaged as active members of research and evaluation teams. We conducted a literature search using a systematic method that accessed peer reviewed studies in relevant library databases and all major evaluation journals. The search resulted in 6,624 potential articles, of which 32 met the inclusion criteria for this study. The findings address three categories of interest: 1) methodological underpinnings and practical justifications for using inclusive approaches, 2) different inclusion processes, and 3) reflections by researchers with and without intellectual and other cognitive disabilities. Findings provide conceptual and practical insights for researchers and evaluators when designing inclusive methods involving persons with intellectual and other cognitive disabilities. Gaps in inclusive research and evaluation are discussed and suggestions for future research are proposed.

Family quality of life for families of children with disabilities in African contexts: a scoping review.

BACKGROUND: Family Quality of Life (FQOL) is an important outcome for families of children with disabilities and is influenced by context and culture. Minimal research explores FQOL in African contexts. PURPOSE: This scoping review identifies factors contributing to FQOL for families of children with disabilities in African contexts. METHOD: We were guided by Arksey and O'Malley's scoping review framework, searching for research papers from the following electronic databases: CINAHL, Embase, Medline, Global Health, and PsycINFO. Using pre-determined eligibility criteria, two authors independently reviewed articles for inclusion via Covidence, a reference manager that facilitates blind reviewing. Two other authors independently extracted data from studies using a data-charting form based on Zuna and colleagues' FQOL framework. Reviewers met regularly for discussion to reach consensus. RESULTS: Fifty-three articles met the inclusion criteria, and findings demonstrated a broad variety of factors contributing to FQOL within the FQOL framework related to family unit factors, individual member factors, and external support factors. We found that poverty, stigma, and spirituality were particularly prominent factors affecting FQOL negatively and positively in African contexts. CONCLUSION: Whilst there are universal factors that contribute to FQOL, recognising the influence of context-specific factors (i.e. poverty, stigma, spirituality) is important in order to provide effective, culturally relevant support that enhances FQOL for families of children with disabilities in African contexts.

Work Patterns and Support Needs of People with Serious Mental Illness.

People with serious mental illness (SMI) are frequently unemployed, despite their willingness to work. Several employment interventions approaches have proven efficacy; however, work integration rates for people with SMI continue to be low. In total, 145 participants with a SMI completed a survey, answering questions regarding their personal information, work history, whether they received supports towards work integration, and their functional level. In addition, clinical records were accessed to verify and complete clinical history. A quantitative descriptive approach was used to analyze the data. No significant differences were found between those who were working and who were not, based on age, gender, educational level, living situation, and suicide risk. Those who were working presented higher levels of functional capacity than those who were not working. Factors associated with employment outcomes continue to remain unclear, adding value to the role that the different supports towards work integration may have.

Organizational attributes of interprofessional primary care for adults with intellectual and developmental disabilities in ontario, Canada: a multiple case study.

BACKGROUND: Access to high-quality primary care has been identified as a pressing need for adults with intellectual and developmental disabilities (IDD). Adults with IDD live with complex physical and mental health conditions, use health services differently than the general population and continue to face challenges when accessing health services. Interprofessional primary care teams offer comprehensive and coordinated approaches to primary care delivery and are well-positioned to address the needs of adults with IDD and other vulnerable populations. Although interprofessional primary care teams are recommended, there is currently limited understanding of how interprofessional care is delivered and how access to a team of providers improves the health of this population. The aim of this paper is to describe the organizational attributes of interprofessional primary care for adults with IDD within and across models of team-based care in one local health service context. METHODS: A multiple case study was conducted with five interprofessional primary care teams in Ontario, Canada. Multiple methods were used to generate data including: a survey, document review, electronic medical record report and qualitative interviews. Pattern matching was the primary analytic approach for the within and across case analysis. RESULTS: Adults with IDD were found to be a small part of the patient population served and this group was poorly identified in three of five teams. Key organizational attributes that support the delivery of interprofessional primary care for adults with IDD were identified. Two examples of targeted programs of care for this group were also found. Despite the presence of interprofessional health providers in all teams, there were limited organizational processes to engage a wide-range of interprofessional services in the care of this group. There was no consistent reporting of outcomes or processes in place to measure the impact of interprofessional services for this population. CONCLUSIONS: This study provides important insights into the current state of interprofessional primary care for adults with IDD in Ontario and highlight a critical need for further work in the field to develop organizational structures and processes to engage in team-based care and demonstrate the value of the approach for this population.

Career Decision-Making Processes of Young Adults With First-Episode Psychosis.

The first episode of psychosis often emerges during young adulthood, when individuals are pursuing important educational and career goals that can become derailed because of the development of major impairments. Past research has neglected the developmental nature of employment and education decisions that young adults with first-episode psychosis make within the context of their lives. The purpose of this grounded theory study was to advance a model of the career decision-making processes of young adults with first-episode psychosis, and the influences that affect their career decision-making. The career decision-making of young adults with first-episode psychosis emerged as a multistaged, iterative process that unfolded over three phases of illness, and was affected by several internal and environmental influences. These findings suggest the phase of illness and career decision-making stage should be considered in future vocational programming for young adults with first-episode psychosis.

Inclusion Through Work and Productivity for Persons with Intellectual and Developmental Disabilities.

BACKGROUND: Employment provides an important avenue to social inclusion for most adults. A range of productivity options exist for persons with intellectual and developmental disabilities (IDD) who wish to work, each offering unique challenges relative to inclusion. METHODS: This qualitative study examined the productivity experiences of people with intellectual and developmental disabilities in Ontario, Canada. A purposive sample of 74 individuals with productivity experiences spanning the spectrum of no employment to community-based jobs was selected from a pool of volunteers recruited through a mailed survey. Semi-structured interviews were conducted with individuals and family members. Interview transcripts were subjected to a team-based analysis using grounded theory methods. RESULTS: Varying needs and interests exist in regard to work. Participants revealed a multitude of factors contributing to inclusion and exclusion through productivity. CONCLUSIONS: Productivity, whether paid or unpaid, can be an avenue to social inclusion. The experience of inclusion, particularly of belonging, depends on a successfully negotiated congruence between worker attributes and the social features and demands of the work environment.

Participant Recruitment for Studies on Disability and Work: Challenges and Solutions.

Purpose A number of key issues related to employment of persons with disabilities demand ongoing and effective lines of inquiry. There is evidence, however, that work researchers struggle with recruitment of participants, and that this may limit the types and appropriateness of methods selected. This two phase study sought to identify the nature of recruitment challenges in workplace-based disability research, and to identify strategies for addressing identified barriers. Methods The first phase of this study was a scoping review of the literature to identify the study designs and approaches frequently used in this field of inquiry, and the success of the various recruitment methods in use. In the second phase, we used qualitative methods to explore with employers and other stakeholders in the field their perceived challenges related to participating in disability-related research, and approaches that might address these. Results The most frequently used recruitment methods identified in the literature were non-probability approaches for qualitative studies, and sampling from existing worker databases for survey research. Struggles in participant recruitment were evidenced by the use of multiple recruitment strategies, and heavy reliance on convenience sampling. Employers cited a number of barriers to participation, including time pressures, fear of legal reprisal, and perceived lack of relevance to the organization. Conclusions Participant recruitment in disability-related research is a concern, particularly in studies that require collection of new data from organizations and individuals, and where large probability samples and/or stratified or purposeful samples are desirable. A number of strategies may contribute to improved success, including development of participatory research models that will enhance benefits and perceived benefits of workplace involvement.

Occupational Therapy Education Research: Results of a National Survey.

OBJECTIVE: Despite a strong tradition of education scholarship in occupational therapy, no systematic evaluation of the amount and nature of research in this arena, or its associated challenges, has been conducted. This study examined the scope and range of education-focused research conducted in Canada and identified perceived supports and barriers for this area of inquiry. METHOD: An online survey was sent to faculty of all 14 Canadian occupational therapy programs. Descriptive statistics were used to summarize areas of study focus, and qualitative thematic analysis captured respondents' perceptions of personal and environmental factors influencing their engagement in education research. RESULTS: Respondents (n = 47) reported engagement in education scholarship spanning more than 20 focus areas, often with limited resources. CONCLUSION: Strategies are proposed to promote the viability of education research in occupational therapy and to improve resources and other supports for this type of research.

Disability stigma and the pursuit of inclusion among children with physical disabilities in northwest Ethiopia.

PURPOSE: Globally, many children with physical disabilities (CwPDs) are excluded from their education and social life, mainly due to stigma and its effects. However, information on disability stigma is scarce in low-and middle-income countries like Ethiopia. The purpose of this study, therefore, was to explore the lived experience of stigma from the perspective of CwPDs and their caregivers in northwest Ethiopia. METHODS: The study incorporated a constructivist grounded theory approach. Data were gathered through observations, in-depth interviews, and key informant interviews. Inductive and iterative grounded theory techniques were used to code and categorize data through constant comparison. FINDINGS: The study showed that CwPDs are bullied and talked about, subject to pity, socially excluded, and held in contempt at home, in their neighborhood, and at school. They live in fear and uncertainty and struggle with stigma. These factors affect their emotions, social relationships, and educational activities. CONCLUSIONS: This study makes theoretical and practical contributions to understanding and addressing disability stigma and can help to introduce inclusive education policy, school practice, and disability advocacy. The study results highlight the need for disability awareness-raising programs, interventions for empowerment, and informing disability policy and practice.

The study sheds light on stigma experiences encountered by children with physical disabilities (CwPDs) in low income settings and adds new insights from the Ethiopian context to advance the rehabilitation professions.Stigma is dynamic and contextual, and presents the most significant barrier to inclusion and participation in education for CwPDs.Rehabilitation intervention is needed to address stigmatized circumstances and enable better inclusion of CwPDs.The study shows the need for rehabilitation interventions that inform disability awareness and help to shift the focus from charity-based and medical models to approaches-based in the social model.The findings of the study revealed the importance of advocacy to raise disability awareness among all stakeholders using the lived experiences and stories of CwPDs.

One-year outcomes of traumatic injuries among survivors in Ethiopia: a cross-sectional study on the employment outcomes and functioning state.

Background: Traumatic injury is one of the top public health challenges globally. Injury survivors often experience poor health and functioning and restricted participation in employment. In Ethiopia, there is a paucity of evidence about the long-term consequences of injuries, particularly about their employment outcomes and disability status. This study characterizes injury survivors by their preinjury status, injury characteristics, postinjury employment outcomes and disability status 1 year post injury. Methods: An institution-based cross-sectional study was conducted on injury survivors who received services from a large public hospital in Addis Ababa. Medical records of all emergency room patients who visited the hospital within a 3-month period were reviewed to identify those who were eligible. A structured questionnaire was completed using a telephone interview. Descriptive statistics were used to characterize the outcomes. Results: Of the 254 participants, 78% were men, 48% were young adults (age 25-39 years), 41% were injured by road traffic collision, 52% were admitted to the hospital for up to a week and only 16% received compensation for the injury. Before the injury, 87% were working in manual labor. One-year after the injury, the total return to work (RTW) rate was 59%; 61% of participants experienced some level of disability, 33% had at least one type of chronic illness and 56% reported challenges of physical stressors when attempting to RTW. Among the 150 who returned to work, 46% returned within 12 weeks, 78% to the same employer and most received support from multiple sources, including community-level institutions (88%) and families/friends (67%). Conclusion: Traumatic injury substantially impacted the employment outcomes of survivors and contributed to increased disability in Ethiopia. This study lays a foundation for future research and contributes crucial evidence for advocacy to improve injury prevention and trauma rehabilitation in low and middle-income contexts. Level of evidence: II.

"It's like your days are empty and yet there's life all around": A mixed methods, multi-site study exploring boredom during and following homelessness.

PURPOSE: To identify experiences of boredom and associations with psychosocial well-being during and following homelessness. METHODS: Using a convergent, mixed-methods explanatory design, we conducted quantitative interviews with 164 participants) (n = 102 unhoused; n = 62 housed following homelessness) using a 92-item protocol involving demographic components and seven standardized measures of psychosocial well-being. A sub-sample (n = 32) was approached to participate in qualitative interviews. Data were analyzed by group (unhoused; housed). Quantitative data were analyzed using descriptive statistics designed to generate insights into boredom, meaningful activity engagement, and their associations with psychosocial well-being during and following homelessness. Qualitative data were analyzed using thematic analysis. Quantitative and qualitative findings were integrated at the stage of discussion. RESULTS: Quantitative analyses revealed small to moderate correlations between boredom and increased hopelessness (rs = .376, p < .01), increased drug use (rs = .194, p < .05), and lowered mental well-being (rs = -.366, p < .01). There were no statistically significant differences between unhoused and housed participants on any standardized measures. Hierarchical regression analyses revealed that housing status was not a significant predictor of boredom or meaningful activity engagement (p>.05). Qualitative interviews revealed profound boredom during and following homelessness imposing negative influences on mental well-being and driving substance use. CONCLUSIONS: Boredom and meaningful activity are important outcomes that require focused attention in services designed to support individuals during and following homelessness. Attention to this construct in future research, practice, and policy has the potential to support the well-being of individuals who experience homelessness, and to contribute to efforts aimed at homelessness prevention.

Adopting new habits and routines in response to COVID-19 lockdown disruptions: A qualitative study.

Introduction: COVID-19-related restrictions resulted in changes to time use and occupational participation, impacting individual and collective well-being. This study addressed a knowledge gap concerning the adaptive process during periods of occupational disruption. We explored the experience of occupational disruption and how people managed disruption during the COVID-19 pandemic. Methods: We used a qualitative descriptive approach and interviewed 18 participants of a larger survey study of time use during the COVID-19 pandemic undertaken around a medium-sized city in Canada. Transcript analysis was conducted inductively using conventional content analysis. Findings: Two overarching themes were constructed during data analysis: The Disruption Experience and Adopting New Habits and Routines. In the face of disruption, participants described a sense of loss and disconnection, and challenges with time management. Establishing new habits and routines required new learning associated with increased time and flexibility, connecting with others and health and wellness. Conclusion: During changing pandemic restrictions, participants expressed a sense of loss, disconnection and time management challenges associated with occupational disruptions, but also described ways they adapted, improving their health and well-being. Strategies identified through this work may be used to enhance adaptation during disruptions. Future research should explore differences in adaptation, among more diverse populations.

The development of recovery competencies for in-patient mental health providers working with people with serious mental illness.

Delivering recovery-oriented services is particularly challenging in in-patient settings. The purpose of this study was to identify the most salient recovery competencies required of in-patient providers. Established methods for the development of competencies were used. Data collection included interviews with multiple stakeholders and a literature review. Data analysis focused on understanding how characteristics of the in-patient context influence recovery-enabling service delivery and the competencies associated with addressing these issues. Eight core competencies with four to ten sub-competencies were identified based on a tension-practice-consequence model. The competency framework can serve as a tool for tailoring workforce education.

Executive functioning: a scoping review of the occupational therapy literature.

BACKGROUND: Increasingly recognized as an important factor in the performance of complex, goal-directed tasks, executive functioning is understood in different ways across disciplines. PURPOSE: The aim was to explore the ways in which executive functioning is conceptualized, discussed, described, and implied in the occupational therapy literature. METHOD: A scoping review of the occupational therapy literature was conducted following Levac, Colquhoun, and O'Brien's (2010) recommended methodology. RESULTS: Executive functioning is described both as a set of performance component skills or processes and as the executive occupational performance inherent in complex occupations. Executive functioning is implicit in occupational performance and engagement, and some health conditions seem to be commonly associated with impaired executive functioning. Assessing executive functioning requires dynamic occupation- and performance-based assessment. Interventions targeting executive functioning are grounded in metacognitive approaches. CONCLUSION: Executive functioning is a complex construct that is conceptualized with considerable variance within the occupational therapy literature, creating barriers to effective service delivery.

Stakeholder Perspectives on Interprofessional Primary Care for Adults With Intellectual and Developmental Disabilities in Ontario, Canada.

Access to high-quality primary care has been identified as a pressing need for adults with intellectual and developmental disabilities (IDD). Interprofessional primary care teams offer comprehensive and coordinated approaches to primary care delivery and are well-positioned to address the needs of adults with IDD. The overall aim of this article is to describe the current provision of interprofessional primary care for adults with IDD from the perspectives of patients, caregivers, and health providers. Results provide important insights into the current state of practice and highlight a critical need for further work in the field to develop processes to engage in team-based care and demonstrate the value of the approach for this population.

Competencies for occupational therapy practice in homelessness: A Delphi study.

BACKGROUND: Homelessness is growing internationally, and resources to guide occupational therapy practice in this area are needed. OBJECTIVES: To identify competencies needed for occupational therapists to support individuals during and following homelessness. MATERIAL AND METHODS: We conducted a three-round Delphi study with occupational therapy practitioners and researchers with expertise in homelessness. RESULTS: Of 35 potential participants, n = 16 participated in Round I, n = 20 participated in Round II, and n = 18 participated in Round III. Participants included occupational therapists and researchers in Canada, United States, Brazil, UK, Ireland and New Zealand. Consensus was achieved on a total of 93 competencies in 10 categories after 15 were eliminated in Rounds II and III. The categories with the greatest number of competencies included occupational knowledge (n = 18), followed by psychosocial competencies (n = 16). CONCLUSIONS AND SIGNIFICANCE: This study represents the first to identify the competencies needed for occupational therapists working in the area of homelessness. Practitioners and educators are encouraged to view the identified competencies as a guide for the professional development of occupational therapists in this context. Stakeholders consulted for this study were able to communicate in English and situated in middle to high-income countries. As such, the competencies identified in this study only apply to these sociocultural contexts.

Family quality of life and children with disability in Ethiopia: The role of support providers.

Background: Family quality of life (FQOL) is an important outcome for families of children with disabilities globally and provision of support is associated with enhanced FQOL. However, FQOL research primarily focuses on conceptualisation and measurement, and originates from high-income contexts despite the fact that most children with disabilities live in low-income countries. Objectives: The authors examined how Ethiopian disability support providers practically contribute to meeting the needs of families of children with disabilities to enhance FQOL. Method: Building on a previous study exploring Ethiopian families' perspectives on FQOL, the authors used an exploratory descriptive qualitative approach to interview various support providers. Interviews were conducted virtually (because of the coronavirus disease 2019 [COVID-19] pandemic) in English or with interpreting assistance. Audio-recorded interviews were transcribed verbatim and analysed thematically. Results: Support providers affirmed what families had described as important for FQOL - spirituality, relationships, self-sufficiency - and recognised their enormous support needs. They described various ways to support families - emotionally, physically, materially and informationally. They also expressed challenges and their need for support to meet families' needs. Conclusion: Ethiopian families of children with disabilities need holistic support that incorporates spirituality, the whole family's needs and disability awareness-raising. Collaborative and committed engagement from all stakeholders is necessary to support Ethiopian families to flourish. Contribution: This study contributes to global understandings of FQOL and describes practical approaches to support families of children with disabilities in an African context. The findings of this study highlight the influence of spirituality, relationships, self-sufficiency, poverty and stigma and the need for holistic support and disability awareness-raising to enhance FQOL.

Bridging the transition from homelessness: Developing an occupational therapy framework.

BACKGROUND: Occupational therapists support individuals experiencing homelessness in traditional roles, and occupational therapy positions focussed specifically on homelessness appear to be growing. OBJECTIVES: To develop and refine a framework to guide occupational therapy practice and research in homelessness. METHOD: We developed a framework and refined it through a stakeholder consultation process conducted with 17 international occupational therapy experts using an online survey. In this survey, we presented an initial framework and requested qualitative feedback. We analyzed this qualitative data using content analysis. RESULTS: Stakeholder feedback was categorized into eight recommendations: (1) Revision to the 'four processes'; (2) Emphasizing social justice and systems-level advocacy; (3) Reflecting intersectionality; (4) Emphasizing meaningful activity; (5) Emphasizing peer support; (6) Incorporating a focus on independent living skills; (7) Increasing a focus on an activity for addressing substance misuse; and (8) Acknowledging cognitive and physical health. Each of these recommendations was incorporated into a refined version of this framework. These recommendations and a refined version of the framework are presented in this paper. CONCLUSIONS: We have developed and refined a framework aimed at guiding practice and research in occupational therapy in homelessness that will be evaluated in future research. SIGNIFICANCE: Though a range of frameworks exists for guiding the practice of occupational therapists more generally, this framework represents the first that is focussed specifically on guiding occupational therapy practice and research with individuals who experience homelessness. Research and practice implications are discussed.

Evaluating the feasibility and potential impacts of a recovery-oriented psychosocial rehabilitation toolkit in a health care setting in Kenya: A mixed-methods study.

OBJECTIVES: This pilot study evaluated the feasibility and potential impacts of delivering the Psychosocial Rehabilitation (PSR) Toolkit for people with serious mental illness within a health care setting in Kenya. METHOD: This study used a convergent mixed-methods design. Participants were people with serious mental illness (n = 23), each with an accompanying family member, who were outpatients of a hospital or satellite clinic in semirural Kenya. The intervention consisted of 14 weekly group sessions of PSR cofacilitated by health care professionals and peers with mental illness. Quantitative data were collected from patients and family members using validated outcome measures before and after the intervention. Qualitative data were collected from focus groups with patients and family members, and individual interviews with facilitators, after the intervention. RESULTS: Quantitative findings indicated that patients experienced moderate improvement in illness management and, in contrast to qualitative findings, family members experienced moderate worsening in attitudes toward recovery. Qualitative findings revealed positive outcomes for both patients and family members, as reflected in greater feelings of hope and mobilization to reduce stigma. Factors that facilitated participation included: helpful and accessible learning materials; committed and involved stakeholders; and flexible solutions to promote continued involvement. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: This pilot study found that delivery of the Psychosocial Rehabilitation Toolkit was feasible within a health care setting in Kenya and associated with overall positive outcomes among patients with serious mental illness. Further research on its effectiveness on a larger scale and using culturally validated measures is needed. (PsycInfo Database Record (c) 2023 APA, all rights reserved).