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1.
Disabil Rehabil ; : 1-2, 2021 Oct 22.
Artigo em Inglês | MEDLINE | ID: mdl-34686080
2.
Artigo em Inglês | MEDLINE | ID: mdl-34272790

RESUMO

BACKGROUND: We conducted a rapid scoping review to identify how inclusive research teams use technology during the research process that could support remote collaboration during public health emergencies like the COVID-19 pandemic. METHOD: We searched three databases and conducted a hand search. Two independent reviewers screened 1498 abstracts and titles for inclusion criteria; 81 full text articles were further reviewed; 47 were included. We extracted information about each type of technology, categorised technology used during the research process, and documented described accommodations. RESULTS: We identified 47 articles and 94 examples of technologies used by people with intellectual and developmental disabilities throughout the research process: team formation and team function (38), data collection (19), data analysis (17) and dissemination (20). CONCLUSIONS: Technology use by team members with intellectual and developmental disabilities demonstrates promise for remote research collaborations during public health and climate emergencies and teams with members living in diverse locations.

3.
Br J Learn Disabil ; 49(1): 100-110, 2021 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-33708003

RESUMO

Background: Patient-reported outcome measures (PROMs) are increasingly used in health care to evaluate service quality and client progress. Response scales are a critical component of PROM content validity and must be designed to be relevant and comprehensible by users. Methods: In collaboration with eight youth co-researchers with intellectual/developmental disabilities ages 14-21, we used an iterative, three-stage approach to develop and select a response scale for the PEDI-PRO. Stages: 1) inclusive development of response scale options; 2) Collecting data about response scale options during focus groups with youth with intellectual/ developmental disabilities (n = 62); and 3) Analysing data to refine response options. Results: Through two cycles of the three-stage process, the inclusive research approach led to the development of a content valid response scale that describes functional performance of everyday activities ("very easy," "a little easy," "a little hard"). Conclusion: An inclusive research approach can support the development of content valid PROM scales. We identified four broad strategies that supported youth co-researchers to engage in this response scale development process: universal design for learning, use of lived experiences, breaking down tasks, and peer support. Researchers may adopt and/or adapt the accessible inclusive research approaches described in this manuscript for measurement development and other research projects.

4.
Child Care Health Dev ; 47(4): 501-508, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-33646573

RESUMO

BACKGROUND: The purpose of this study was to identify potential barriers to patient reported outcome measure (PROM) adoption with youth and young adults with intellectual and/or developmental disabilities (IDD) and to understand current PROM adoption patterns of paediatric practitioners working with this population. METHODS: We used a web-based survey to collect data from paediatric practitioners who work with youth with IDD about factors influencing the adoption of PROMs and the frequency of PROM use across age groups (elementary, middle school and high school/transition age) and practice settings (school and rehabilitation). RESULTS: A total of 113 paediatric practitioners (occupational therapist = 48, physical therapist = 32, physician = 16, other = 17) responded to the survey with an average of 15 years of experience working with youth ages 8-21 with IDD. Accessibility and appropriateness, psychometric evidence, and time were most frequently ranked among the top three factors that influence practitioners' adoption of PROMs. Practitioners reported 'never or rarely' using PROMs 39%-65% of the time across age groups. CONCLUSIONS: Our results suggest that paediatric practitioners may be infrequently using PROMs with youth with IDD because of perceived inaccessibility and time requirements of PROMs and practice-environment barriers, including access to evidence and caseload demands. Because PROMs can facilitate client-centred care, addressing these potential barriers to adoption may improve paediatric rehabilitation.


Assuntos
Deficiências do Desenvolvimento , Deficiência Intelectual , Adolescente , Adulto , Criança , Humanos , Medidas de Resultados Relatados pelo Paciente , Inquéritos e Questionários , Adulto Jovem
5.
Am J Occup Ther ; 75(1): 7501205010p1-7501205010p10, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33399049

RESUMO

IMPORTANCE: Patient-reported outcome measures (PROMs) are used in rehabilitation to evaluate outcomes. We integrated a new PROM for transition-age youth with intellectual and/or developmental disabilities (IDD), the Pediatric Evaluation of Disability Inventory-Patient-Reported Outcome (PEDI-PRO), with a computer-delivered survey platform (Accessible Testing Learning and Assessment System) to enhance cognitive accessibility. OBJECTIVE: To evaluate the usability of the PEDI-PRO software and to investigate its reliability and acceptability to transition-age youth with IDD. DESIGN: Clinical field testing and a survey; repeated-observation test-retest design. SETTING: Clinicians evaluated the PEDI-PRO's usability in school and health care contexts; research staff conducted reliability and acceptability testing in natural settings. PARTICIPANTS: Occupational therapists (n = 12) and physical therapists (n = 2) administered the PEDI-PRO to 39 youths with IDD. Fifty-five transition-age youth with IDD (M age = 19.7) completed the PEDI-PRO twice. OUTCOMES AND MEASURES: Clinicians completed the System Usability Survey (SUS) and open-ended feedback. Youth provided feedback via a brief survey. RESULTS: The mean SUS rating was 84.00 (SD = 11.68), exceeding the industry standard. Intraclass correlations ranged from .80 to .83 across the three PEDI-PRO domains. Internal reliability (α) was .86-.90 across domains. Youth reported that they liked the accessibility features: interface images, button sounds, read-aloud audio, and rating category choices (M = 88.8%, SD = 5.1%). CONCLUSIONS AND RELEVANCE: The PEDI-PRO supported transition-age youth with IDD to reliably report perceived functional performance. The accessible software was favorably perceived by both clinicians and youth. WHAT THIS ARTICLE ADDS: Design features of the PEDI-PRO make it easy to use in practice with transition-age youth with IDD. The PEDI-PRO's cognitively accessible administrative design, including step-by-step instructions for teaching PROM use and a self-reflective questioning technique, could serve as a training model for this and other PROMs.


Assuntos
Avaliação da Deficiência , Pessoas com Deficiência , Adolescente , Criança , Humanos , Medidas de Resultados Relatados pelo Paciente , Reprodutibilidade dos Testes , Software
6.
Res Dev Disabil ; 106: 103766, 2020 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-32961517

RESUMO

BACKGROUND: We report development of the SPQ (School Participation Questionnaire) a teacher-completed measure of participation related constructs for schools. The SPQ was developed to support participation-related assessment, interventions, and research in the inclusive school context. METHODS: Several iterative steps were undertaken. An international panel of experts reviewed content validity. A 66-item pilot questionnaire was administered in schools. Mokken and Rasch model analysis were applied. Internal consistency was assessed using Cronbach's alpha. Analyses were conducted on associations with teacher and child demographic variables. Feedback was sourced from users. Participants were teachers of 101 children (5-12 years old) with a range of disabilities, including intellectual disability, autism spectrum disorder and learning difficulties. RESULTS: Four participation-related dimensions of the SPQ were confirmed. Rasch person and item reliability were good, and 2-4 strata were confirmed per scale. Internal consistency was good (all scales, Cronbach α > 0.8). Mean administration time was 11.7 min. Mean SPQ scores were independent of teacher characteristics. A significant effect of school support level, eligibility for free school meals and gender was found. Through synthesising analytic results and feedback, a new 46-item tool was obtained. CONCLUSION: The results of this study provide evidence of acceptability, practicality and validity. The SPQ is the first tool developed to assess participation related constructs in schools, and it contains novel information not given by other assessments. The SPQ may be used by practitioners and researchers to understand and improve the participation of children with a range of disabilities in schools.


Assuntos
Transtorno do Espectro Autista , Criança , Estudos de Viabilidade , Humanos , Psicometria , Reprodutibilidade dos Testes , Instituições Acadêmicas , Inquéritos e Questionários
7.
Qual Health Res ; 30(11): 1632-1646, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32564671

RESUMO

We conducted a meta-synthesis to explore how Asian immigrant parents in the United States enact their perceived parental role while using health and educational services for their child with developmental disabilities. We identified 11 qualitative studies for analysis, and examined these studies using a constant comparative approach and thematic analysis informed by role theory and acculturation theory. Based on our analysis, five themes related to parents' role enactment emerged: (a) parents perceive a multifaceted parental role; (b) parents' individual factors influence their role enactment; (c) system factors influence parents' role enactment; (d) parents use coping strategies to address role dissatisfaction; and (e) parental role enactment is a continuously evolving process influenced by acculturation, which spirals them toward their ultimate goal of helping their child thrive. Findings can inform practitioners' and researchers' understanding of how to create a culturally safe environment to support Asian immigrant parents in realizing their parental role.


Assuntos
Deficiências do Desenvolvimento , Emigrantes e Imigrantes , Aculturação , Criança , Humanos , Poder Familiar , Pais , Estados Unidos
8.
J Appl Res Intellect Disabil ; 33(5): 992-1004, 2020 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-32119173

RESUMO

BACKGROUND: Young adults with intellectual/developmental disabilities and co-occurring mental health conditions (IDD-MH) experience significant mental health disparities. Barriers to services include transportation and stigma associated with services. Peer mentoring (PM) may be one solution to these barriers. METHODS: We conducted exploratory research to develop a PM intervention for young adults with IDD-MH by partnering with 3 young adults with IDD-MH and a seven-member advisory board. In addition, we conducted focus groups with mental health clinicians (n = 10), peer providers (n = 9), and transition specialists (n = 20) to identify the desired PM outcomes and features and content that may facilitate these outcomes. RESULTS: Prioritized outcome: identifying and utilizing leisure activities as coping strategies. PM features: mentors should use relationship- and outcome-driven actions to operationalize a mentee-centred approach. Features and content considerations: safety, mentor matching, degree of structure, mentor training and support, and collaboration with mentees' support teams. DISCUSSION: Findings are aligned with previous research on PM.


Assuntos
Deficiência Intelectual , Tutoria , Criança , Deficiências do Desenvolvimento , Humanos , Saúde Mental , Mentores , Adulto Jovem
9.
Qual Health Res ; 30(2): 236-249, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31466513

RESUMO

People with intellectual disability (ID) are increasingly involved in stakeholder-engaged research, such as "inclusive research" (IR). To understand the processes that foster and maintain IR with individuals with ID, we used a narrative interview approach with co-researchers with ID (n = 6) and academic researchers (n = 8). We analyzed the data using grounded theory principles. We then developed a model describing how contextual factors and team-level factors and processes coalesce to foster and maintain IR collaborations. We observed that team members' values and characteristics are foundational to IR and drive a commitment to accessibility. Contextual factors, including funding and partnership duration, influence teams' processes and structures. These processes and structures influence the extent to which co-researchers perceive the IR team to be cofacilitated or academic-facilitated. Co-researcher involvement is partially maintained by perceived personal and societal benefits. Optimizing the relationship between these factors may support involvement of people with ID in stakeholder-engaged research projects.


Assuntos
Pesquisa Participativa Baseada na Comunidade/métodos , Comportamento Cooperativo , Deficiência Intelectual/psicologia , Relações Interprofissionais , Pesquisadores/psicologia , Adulto , Austrália , Europa (Continente) , Feminino , Humanos , Entrevistas como Assunto , Estados Unidos
10.
J Occup Ther Sch Early Interv ; 12(1): 129-143, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31289605

RESUMO

School-based occupational therapists are well-equipped to prepare adolescents to transition from the education system to work and live in their communities, but they report challenges in securing their place on post-secondary transition planning teams. We argue that occupational therapists' efforts to advocate for their role in post-secondary transition could be strengthened by a deeper engagement with what is considered 'best practice' in transition planning: improving students' ability and opportunity to exercise self-determination. In this commentary, we review the self-determination evidence-base; identify congruence between the underlying philosophies of self-determination and occupational therapy; and highlight gaps in existing self-determination models that occupational therapists are uniquely posed to fill by focusing on self-determination as they support transition age students.

11.
PLoS One ; 14(1): e0210511, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30695082

RESUMO

BACKGROUND: In order to make informed decisions about how best to support children and young people with disabilities, effective strategies that facilitate active and meaningful participation in school are required. Clinical factors, diagnosis or impairments somewhat helpful in determining what should be provided in interventions. However, clinical factors alone will not offer a clear view of how to support participation. It is helpful then to look at wider psychosocial and environmental factors. The aim of this review was to synthesise evidence of psychosocial and environmental factors associated with school participation of 4-12 year old children with disabilities to inform the development of participation-fostering interventions. METHODS: A systematic search and synthesis using realist methods was conducted of published research. Papers had to include consideration of psychosocial and/or environment factors for school participation of children with disabilities. The review was completed in accordance with the Realist and Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES) and Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines. Papers were identified via Boolean search of the electronic databases MEDLINE, CINAHL, PhycINFO and ERIC (January 2006-October 2018). Appraisal focussed on contributions in terms of whether the articles are appropriate for the review (relevance) and research quality (rigour). Data were analyzed using content and thematic analysis methods using a realist framework. A narrative synthesis of results was reported. RESULTS AND IMPLICATIONS: We identified 1828 papers in the initial search. Seventy two papers were included in the final synthesis. Synthesis of findings led to three overarching mechanisms representing psychosocial factors for children (1) identity (2) competence and (3) experience of mind and body. Environmental aspects (context) compromised five interrelated areas: (1) structures and organization, (2) peers, (3) adults, (4) space and (5) objects. Our synthesis provides insights on how professionals may organize efforts to improve children's participation. Consideration of these findings will help to proactively deal with suboptimal participation outcomes. Development of theoretically determined assessments and interventions for management of school participation are now required.


Assuntos
Avaliação da Deficiência , Crianças com Deficiência/educação , Classificação Internacional de Funcionalidade, Incapacidade e Saúde/estatística & dados numéricos , Instituições Acadêmicas , Participação Social , Criança , Pré-Escolar , Crianças com Deficiência/psicologia , Crianças com Deficiência/reabilitação , Humanos , Classificação Internacional de Funcionalidade, Incapacidade e Saúde/normas , Pesquisa Qualitativa , Meio Social
12.
Phys Occup Ther Pediatr ; 39(2): 204-216, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30204519

RESUMO

AIMS: There is a need to develop self-reports that measure youth's responsibility for major life tasks. We examined if the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test's (PEDI-CAT) operationalization of responsibility is salient to youth with developmental disabilities (DD). The PEDI-CAT defines responsibility as, "the extent to which the young person…take[s] control over organizing and managing major life tasks." METHODS: During six focus groups (n = 43), youth generated examples of behaviors and actions that demonstrated responsibility. Data were coded as "responsibility" or "discrete skills" per PEDI-CAT definitions. We reviewed examples in both categories and compared and contrasted how youth described responsibility. RESULTS: Youth's descriptions of responsibility aligned with the PEDI-CAT's responsibility construct 42.75% of the time. In these instances, youth perceived themselves as causal agents who had to make decisions and self-regulate to manage and organize major life tasks. Otherwise, youth described themselves as causal agents who adhered to rules, social norms, and expectations of others during the execution of discrete skills. CONCLUSIONS: Youth perceive themselves as responsible, causal agents during both the coordination and management of major life tasks and during the execution of discrete skills. As this is not aligned with the PEDI-CAT's operationalization of responsibility, there is a need to further explore youth's perceptions of responsibility prior to developing a self-report.


Assuntos
Deficiências do Desenvolvimento/psicologia , Pessoas com Deficiência/psicologia , Autocuidado/estatística & dados numéricos , Autoimagem , Adolescente , Avaliação da Deficiência , Feminino , Grupos Focais , Humanos , Masculino , Medidas de Resultados Relatados pelo Paciente , Pesquisa Qualitativa , Adulto Jovem
13.
Scand J Occup Ther ; 25(5): 335-346, 2018 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-30280615

RESUMO

BACKGROUND: To address the gap in patient reported outcome measures (PROMs) of functional performance appropriate for youth and young adults with developmental disabilities (DD) we developed the Pediatric Evaluation of Disability Inventory-Patient Reported Outcome (PEDI-PRO). AIM/OBJECTIVE: We used a participatory process to: (1) Develop the measurement conceptual framework; (2) Identify discrete functional tasks to include in the PEDI-PRO; and (3) Refine item candidates. METHODS: We collaborated with eight youth with DD over 33 months. These youth and university researchers explored the construct of functional performance, developed and refined items, and collected and analyzed data. We also conducted focus groups with youth with DD (n = 62) and rehabilitation professionals (n = 26), and consulted with PEDI measurement experts (n = 3). RESULTS: Youth's understanding of their functional performance is embedded in their experiences participating in everyday life situations. We developed 78 Daily Activities, 65 Social/Cognitive, and 52 Mobility item candidates that are linked to 11 everyday life situations to assess discrete functional tasks important to youth with DD and rehabilitation professionals. CONCLUSION AND IMPLICATIONS: As a result of our participatory development process, the PEDI-PRO's proposed conceptual framework and item candidates are grounded in the lived experience of youth with DD.


Assuntos
Atividades Cotidianas , Deficiências do Desenvolvimento , Avaliação da Deficiência , Medidas de Resultados Relatados pelo Paciente , Adolescente , Cognição , Deficiências do Desenvolvimento/complicações , Pessoas com Deficiência , Feminino , Grupos Focais , Humanos , Masculino , Limitação da Mobilidade , Comportamento Social , Adulto Jovem
14.
OTJR (Thorofare N J) ; 38(4): 225-234, 2018 10.
Artigo em Inglês | MEDLINE | ID: mdl-29976117

RESUMO

Optimal child development is supported by services, policies, a social determinants of health (SDOH) frame, and meaningful participation (as defined by the International Classification of Functioning, Disability, and Health-Children and Youth [ICF-CY]). This scoping review describes the social determinants that may affect the participation of young children aged 0 to 3 years with developmental disabilities (DD) in the United States. Scoping review of studies including U.S. children with DD aged 0 to 3 years, from 2000 to 2016, were used. 5/979 studies met inclusion criteria. Two researchers independently coded studies to align them with both ICF-CY and SDOH. Studies found determinants of participation stemming from the child (e.g., individual) and multiple contexts: immediate, community, and policy. The emergent literature continues to primarily focus on child determinants but suggests participation of young children with DD is affected by social determinants stemming from the community and policy contexts. The literature underrepresents children from racial/ethnic minority backgrounds.


Assuntos
Deficiências do Desenvolvimento/psicologia , Crianças com Deficiência/estatística & dados numéricos , Meio Social , Participação Social/psicologia , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Classificação Internacional de Funcionalidade, Incapacidade e Saúde , Masculino , Estados Unidos
16.
Dev Med Child Neurol ; 60(8): 801-809, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-29528103

RESUMO

AIM: Project TEAM (Teens making Environment and Activity Modifications) teaches transition-age young people with developmental disabilities, including those with co-occurring intellectual or cognitive disabilities, to identify and resolve environmental barriers to participation. We examined its effects on young people's attainment of participation goals, knowledge, problem-solving, self-determination, and self-efficacy. METHOD: We used a quasi-experimental, repeated measures design (initial, outcome, 6-week follow-up) with two groups: (1) Project TEAM (28 males, 19 females; mean age 17y 6mo); and (2) goal-setting comparison (21 males, 14 females; mean age 17y 6mo). A matched convenience sample was recruited in two US states. Attainment of participation goals and goal attainment scaling (GAS) T scores were compared at outcome. Differences between groups for all other outcomes were analyzed using linear mixed effects models. RESULTS: At outcome, Project TEAM participants demonstrated greater knowledge (estimated mean difference: 1.82; confidence interval [CI]: 0.90, 2.74) and ability to apply knowledge during participation (GAS: t[75]=4.21; CI: 5.21, 14.57) compared to goal-setting. While both groups achieved significant improvements in knowledge, problem-solving, and self-determination, increases in parent reported self-determination remained at 6-week follow-up only for Project TEAM (estimated mean difference: 4.65; CI: 1.32, 7.98). Significantly more Project TEAM participants attained their participation goals by follow-up (Project TEAM=97.6%, goal-setting=77.1%, p=0.009). INTERPRETATION: Both approaches support attainment of participation goals. Although inconclusive, Project TEAM may uniquely support young people with developmental disabilities to act in a self-determined manner and apply an environmental problem-solving approach over time. WHAT THIS PAPER ADDS: Individualized goal-setting, alone or during Project TEAM (Teens making Environment and Activity Modifications) appears to support attainment of participation goals. Project TEAM appears to support young people with developmental disabilities to apply an environmental problem-solving approach to participation barriers. Parents of young people with developmental disabilities report sustained changes in self-determination 6 weeks after Project TEAM.


Assuntos
Remediação Cognitiva/métodos , Deficiências do Desenvolvimento/reabilitação , Deficiência Intelectual/reabilitação , Terapia Ocupacional/métodos , Avaliação de Resultados em Cuidados de Saúde , Resolução de Problemas , Adolescente , Adulto , Comorbidade , Deficiências do Desenvolvimento/epidemiologia , Feminino , Seguimentos , Objetivos , Humanos , Deficiência Intelectual/epidemiologia , Masculino , Autonomia Pessoal , Autoeficácia , Participação Social , Adulto Jovem
17.
Disabil Rehabil ; 40(20): 2364-2371, 2018 10.
Artigo em Inglês | MEDLINE | ID: mdl-28592154

RESUMO

PURPOSE: Peer mentoring may be an effective approach for fostering skill development for mentors and mentees with developmental disabilities. However, little is known about how mentors with developmental disabilities perceive and enact their roles. RESEARCH QUESTIONS: (1) How do young adults with developmental disabilities describe their role as a peer mentor in the context of instrumental peer mentoring? (2) How do they enact their perceived roles? METHODS: Thematic analysis of semi-structured reflections completed by six mentors with developmental disabilities (ages 17-35) with multiple mentoring experiences. RESULTS: Mentors perceived themselves as professionals with a primary role of teaching, and for some mentoring relationships, a secondary role of developing an interpersonal relationship. To enact these roles, mentors used a supportive interactional approach characterized by actions such as encouragement and sharing examples and dispositions, such as flexibility and patience. Mentors monitored mentee learning and engagement within the mentoring session and, as needed, adjusted their approach to optimize mentee learning and engagement. To successfully manage their interactional approach, mentors used supports such as peer mentoring scripts, tip sheets, and supervisors. CONCLUSIONS: While mentors reported several actions for teaching, they may benefit from training to learn approaches to facilitate more consistent development of interpersonal relationships. Implications for Rehabilitation Peer mentoring may be an effective approach for fostering skill development for young adult mentors and mentees with developmental disabilities. In this study, young adult peer mentors with developmental disabilities perceived themselves as professionals with a primary role of teaching and a secondary role of developing an interpersonal relationship. Peer mentors used actions and dispositions that matched their perceived roles and supported mentees with developmental disabilities to engage in instrumental mentoring. With supports and training, young adults with developmental disabilities can successfully execute the complex relational and teaching tasks required of peer mentoring.


Assuntos
Deficiências do Desenvolvimento , Tutoria/métodos , Mentores/psicologia , Adolescente , Adulto , Deficiências do Desenvolvimento/psicologia , Deficiências do Desenvolvimento/reabilitação , Feminino , Humanos , Relações Interpessoais , Masculino , Infuência dos Pares , Papel Profissional , Psicologia Educacional
18.
J Appl Res Intellect Disabil ; 31(1): e118-e129, 2018 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-28247558

RESUMO

BACKGROUND: There is a need for mentoring interventions in which transition-age youth and young adults with intellectual and/or developmental disabilities (I/DD) participate as both mentors and mentees. Project TEAM (Teens making Environment and Activity Modifications) is a problem-solving intervention that includes an electronic peer-mentoring component. METHODS: Forty-two mentees and nine mentors with I/DD participated. The present authors analysed recorded peer-mentoring calls and field notes for mentee engagement, mentor achievement of objectives and supports needed to implement peer mentoring. RESULTS: Overall, mentees attended 87% of scheduled calls and actively engaged during 94% of call objectives. Across all mentoring dyads, mentors achieved 87% of objectives and there was a significant relationship between the use of supports (mentoring script, direct supervision) and fidelity. CONCLUSIONS: Transition-age mentees with I/DD can engage in electronic peer mentoring to further practice problem-solving skills. Mentors with I/DD can implement electronic peer mentoring when trained personnel provide supports and individualized job accommodations.


Assuntos
Deficiências do Desenvolvimento/psicologia , Deficiência Intelectual/psicologia , Tutoria/métodos , Mentores , Grupo Associado , Participação Social/psicologia , Adolescente , Adulto , Estudos de Viabilidade , Feminino , Humanos , Masculino , Avaliação de Programas e Projetos de Saúde , Adulto Jovem
19.
Dev Med Child Neurol ; 60(2): 173-184, 2018 02.
Artigo em Inglês | MEDLINE | ID: mdl-29171008

RESUMO

Use of patient-reported outcome measures (PROMs) may increase the involvement of young people with developmental disabilities in their healthcare decisions and healthcare-related research. Young people with developmental disabilities may have difficulty completing PROMs because of extraneous assessment demands that require additional cognitive processes. However, PROM design features may mitigate the impact of these demands. We identified and evaluated six pediatric PROMs of self-care and domestic life tasks for the incorporation of suggested design features that can reduce cognitive demands. PROMs incorporated an average of 6 out of 11 content, 7 out of 14 layout, and 2 out of 9 administration features. This critical review identified two primary gaps in PROM design: (1) examples and visuals were not optimized to reduce cognitive demands; and (2) administration features that support young people's motivation and self-efficacy and reduce frustration were underutilized. Because assessment demands impact the validity of PROMs, clinicians should prospectively consider the impact of these demands when selecting PROMs and interpreting scores. WHAT THIS PAPER ADDS: Patient-reported outcome measure (PROM) design features can reduce assessment demands related to cognitive processes. Pediatric PROMs underutilize design features that decrease cognitive demands of self-reporting.


Assuntos
Transtornos Cognitivos/etiologia , Cognição/fisiologia , Deficiências do Desenvolvimento/psicologia , Medidas de Resultados Relatados pelo Paciente , Transtornos Cognitivos/psicologia , Deficiências do Desenvolvimento/diagnóstico , Humanos , Motivação , Estudos Retrospectivos , Autocuidado , Adulto Jovem
20.
Dev Med Child Neurol ; 59(10): 1083-1088, 2017 10.
Artigo em Inglês | MEDLINE | ID: mdl-28580593

RESUMO

AIM: This study examined the item interpretability and rating scale use of the Pediatric Evaluation of Disability Inventory-Patient-Reported Outcome (PEDI-PRO) by young people with developmental disabilities. The PEDI-PRO assesses the functional performance of discrete functional tasks in the context of everyday life situations. METHOD: A two-phase cognitive interview design was implemented with a convenience sample of 37 young people (mean age 19y, SD 2y 5mo; 13 males and 24 females; 68% with intellectual disability) with developmental disabilities. In phase I, 182 item candidates were each reviewed by an average of four young people. In phase II, 103 items were carried forward or revised and each reviewed by an average of seven additional young people. Two raters coded responses for intended item interpretation and performance quality; codes were analysed using descriptive statistics. Qualitative analysis explored young people's self-evaluation process. RESULTS: Items were interpreted as intended by most young people (mean 86%). Young people can use PEDI-PRO response categories appropriately to describe their performance: 94% of positive performance descriptions coincided with a positive response category choice; 73% of negative descriptions coincided with a negative response category choice. Young people interpreted items in a literal manner, and their self-evaluation incorporated the use of supports that facilitate functional performance. INTERPRETATION: The PEDI-PRO's measurement framework appears to support the self-evaluation of functional performance of young people with developmental disabilities.


Assuntos
Deficiências do Desenvolvimento/diagnóstico , Autoavaliação Diagnóstica , Avaliação da Deficiência , Crianças com Deficiência , Medidas de Resultados Relatados pelo Paciente , Adolescente , Criança , Feminino , Humanos , Entrevistas como Assunto , Masculino , Autorrelato , Adulto Jovem
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