Publications by authors named "Heather J Williamson"

19 Publications

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Who Is Leading the Field in 2020?: AAIDD Students and Early Career Professionals.

Intellect Dev Disabil 2021 Jun;59(3):217-223

Susan M. Havercamp, Ohio State University.

The American Association on Intellectual and Developmental Disabilities (AAIDD) has been a leader in the field of intellectual and developmental disabilities since its founding in 1876. Today, student and early career professionals make up approximately 8.5% of the organization, with their engagement supported by the Student and Early Career Professional Interest Network (SECP). An article by Havercamp et al. (2003), "Who Will Lead the Field Beyond 2020?", recommended organizational changes that have been largely addressed in the years following by SECP. The present research replicates Havercamp et al.'s (2003) original survey of the organization's student and early career professionals, and results support the effectiveness of SECP as a welcoming platform from which students and early career professionals can establish themselves in the organization.
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http://dx.doi.org/10.1352/1934-9556-59.3.217DOI Listing
June 2021

Are Researchers Addressing Cancer Treatment and Survivorship Among People With Intellectual and Developmental Disabilities in the U.S.? A Scoping Review.

Intellect Dev Disabil 2021 Apr;59(2):141-154

Julie S. Armin, University of Arizona.

People with intellectual and developmental disabilities (PWIDD) often encounter barriers in the health care system when seeking general and specialized medical care. Literature has shown that PWIDD experience a lack of proper screening for and prevention of cancer compared to the general population. However, less is known regarding the cancer care and survivorship of PWIDD, especially in the United States. In this review, we examine what is currently known about the primary, psychosocial, and palliative care of PWIDD diagnosed with cancer. Our analyses reveal an immediate need for improvement in caregiver support, collaboration among health care providers, and ethical approaches to information disclosure for this population, as well as the establishment of more reliable standards of care through additional research with PWIDD.
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http://dx.doi.org/10.1352/1934-9556-59.2.141DOI Listing
April 2021

Development and Validation of a Community Assessment Survey for Diverse Rural Family Caregivers of People With Alzheimer Disease and Related Dementias.

Fam Community Health 2021 Jul-Sep 01;44(3):126-135

Departments of Social Work, College of Social and Behavioral Sciences (Dr McCarthy), Educational Psychology, College of Education (Ms Lee-Regalado Hustead and Dr Garcia), and Occupational Therapy (Dr Williamson) and Health Sciences (Dr Baldwin), Center for Health Equity Research, Northern Arizona University, Flagstaff; Center for Health Equity Research (Dr Bacon), Northern Arizona University, Flagstaff; and School of Nursing, College of Health & Human Services (Dr Dunn), Northern Arizona University, Flagstaff.

Many individuals with Alzheimer disease and related dementias receive care from family members and friends. Rurality adds increased complexity to care, especially for diverse caregivers. This study details the development and content validation process for a community assessment survey for rural white, Latinx, and American Indian/Alaska Native Alzheimer disease and related dementias caregivers. Foundational survey items were based upon instruments validated with diverse rural caregivers. A modified Delphi process (2 rounds) was used to refine items. The process concluded when 75%+ of experts agreed that the survey was (1) inclusive of different cultural groups; (2) respectful of cultural values and norms; (3) comprehensive with respect to needs, assets, and resources, and (4) relevant to the experiences of diverse rural caregivers. Round 1 of the process (N = 9 panelists) resulted in the elimination of 2 survey sections, a greater focus on issues including transportation and roles of extended family members, and the inclusion of open-ended questions. Round 2 (N = 6 panelists) resulted in further improvements, particularly to the sections about cultural customs, beliefs, and traditions and interactions with health care and other providers. Benefits of the process included raising awareness about rural caregiving issues and maximizing data quality. Challenges included honoring the diversity of respondents' opinions and balancing research rigor with community utility. This community assessment survey may help researchers better understand the needs and culturally-based strengths of diverse rural family caregivers.
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http://dx.doi.org/10.1097/FCH.0000000000000297DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8131205PMC
January 2022

Barriers in access to healthcare for women with disabilities: a systematic review in qualitative studies.

BMC Womens Health 2021 01 30;21(1):44. Epub 2021 Jan 30.

Research Center for Environmental Determinants of Health (RCEDH), Health Institute, Kermanshah University of Medical Sciences, Kermanshah, Iran.

Background: Studies show that different socio-economic and structural factors can limit access to healthcare for women with disabilities. The aim of the current study was to review barriers in access to healthcare services for women with disabilities (WWD) internationally.

Methods: We conducted a systematic review of relevant qualitative articles in PubMed, Web of Science and Scopus databases from January 2009 to December 2017. The search strategy was based on two main topics: (1) access to healthcare; and (2) disability. In this review, women (older than 18) with different kinds of disabilities (physical, sensory and intellectual disabilities) were included. Studies were excluded if they were not peer-reviewed, and had a focus on men with disabilities.

Results: Twenty four articles met the inclusion criteria for the final review. In each study, participants noted various barriers to accessing healthcare. Findings revealed that WWD faced different sociocultural (erroneous assumptions, negative attitudes, being ignored, being judged, violence, abuse, insult, impoliteness, and low health literacy), financial (poverty, unemployment, high transportation costs) and structural (lack of insurance coverage, inaccessible equipment and transportation facilities, lack of knowledge, lack of information, lack of transparency, and communicative problems) factors which impacted their access healthcare.

Conclusions: Healthcare systems need to train the healthcare workforce to respect WWD, pay attention to their preferences and choices, provide non-discriminatory and respectful treatment, and address stigmatizing attitudinal towards WWD. In addition, families and communities need to participate in advocacy efforts to promote WWD's access to health care.
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http://dx.doi.org/10.1186/s12905-021-01189-5DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7847569PMC
January 2021

Toward a Defined Role for Occupational Therapy in Foster Care Transition Programming.

Open J Occup Ther 2020 ;8(4)

Northern Arizona University - USA.

Youth who age out of the foster care system and transition to adulthood face challenges that are exacerbated by a history of trauma, severed relationships, and instability of living and educational placements. A review of the literature demonstrates poor outcomes overall for this population. Occupational therapists are positioned to meet the needs that arise during this time; however, a review of emerging roles for occupational therapists is necessary to describe how occupational therapists can best fulfill gaps in current programming. Through a review of the literature and a preliminary mixed-methods study, this paper establishes a direction for the inclusion of occupational therapy for youth aging out of foster care using the Person Environment Occupation Performance (PEOP) model as a structure. Federal, state, and local organizations provide resources to assist transitioning foster youth. However, there is a lack of collaborative, individualized, and evidence-based approaches reporting good outcomes. Specific occupational therapy interventions are suggested to delineate our role with this high-risk population during transition to independent living: both novel interventions and additions to current evidence-based programming.
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http://dx.doi.org/10.15453/2168-6408.1726DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7584147PMC
January 2020

Voices of Community Partners: Perspectives Gained from Conversations of Community-Based Participatory Research Experiences.

Int J Environ Res Public Health 2020 07 21;17(14). Epub 2020 Jul 21.

Center for Health Equity Research, Northern Arizona University, Flagstaff, AZ 86011, USA.

Community-based participatory research (CBPR) has been documented as an effective approach to research with underserved communities, particularly with racial and ethnic minority groups. However, much of the literature promoting the use of CBPR with underserved communities is written from the perspective of the researchers and not from the perspective of the community partner. The purpose of this article is to capture lessons learned from the community partners' insight gained through their experiences with CBPR. A multi-investigator consensus method was used to qualitatively code the transcripts of a CBPR story-telling video series. Seven major themes were identified: (1) expectations for engaging in research, (2) cultural humility, (3) respecting the partnership, (4) open communication, (5) genuine commitment, (6) valuing strengths and recognizing capacities, and (7) collaborating to yield meaningful results. The themes drawn from the community partner's voice align with the tenets of CBPR advanced in the academic literature. More opportunities to include the community voice when promoting CBPR should be undertaken to help introduce the concepts to potential community partners who may be research cautious.
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http://dx.doi.org/10.3390/ijerph17145245DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7400085PMC
July 2020

The predictors of access to health services for people with disabilities: A cross sectional study in Iranian context.

Med J Islam Repub Iran 2019 23;33:125. Epub 2019 Nov 23.

Research Center for Environmental Determinants of Health, Health Institute, Kermanshah University of Medical Sciences, Kermanshah, Iran.

In developing countries, people with disabilities (PWD) are more likely to have unequitable access to health care services than their counterparts without disabilities. Access to health care is a multidimensional concept and PWD experience various barriers to use health care. This quantitative study explored the predictors and determents of access to health care for PWD in an Iranian context. Data were collected from a cross sectional study conducted in Tehran in 2017. A total of 403 adults with physical and/or intellectual disabilities were selected using census method. The data on PWD were collected from 14 rehabilitation centers affiliated to Welfare Organization and Red Crescent Organization. The self-report World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0) was used to collect data on disability status. T test, ANOVA, and multiple linear regressions were used to determine factors influencing access to health care for PWD. Significance level was set at 5%. Also, SPSS software version 20.0 was used for data analysis. The mean of access to health care among people with intellectual disabilities (mean: 61.77, 95% confidence interval (CI):59.20, 64.35) was significantly lower than their counterparts with physical disabilities (Mean: 67.97, 95% CI: 65.26, 70.69). The results of multiple linear regression analysis showed that in the affordability dimension, type of disability, marital status, and supplemental health insurance could predict access to health services for PWD. In availability dimension, only location predicted the outcome variable significantly. Also, location and type of disability were considered to be potential predictors of access to health services in acceptability dimension. The results indicate that various factors can limit access to health services for PWD. To achieve universal health coverage, vulnerable groups and their needs should be identified to increase equitable access to health care services. Also, the health care system should pay more attention to demographic differences when planning and providing affordable and acceptable health care for PWD. Finally, the role of the government as the heath stewardship is vital to promote health care access for PWD in Iran.
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http://dx.doi.org/10.34171/mjiri.33.125DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7137830PMC
November 2019

Former Foster System Youth: Perspectives on Transitional Supports and Programs.

J Behav Health Serv Res 2021 04;48(2):287-305

College of Health Solutions, Arizona State University, 500 N 3rd Street, Phoenix, AZ, 85004, USA.

Youth aging out of the foster care system have well-documented challenges when transitioning to adulthood. Multiple transition services provide support in the transition process; however, limited research is available regarding youth's perceptions of programming. In this pilot study, sixteen youth between ages 18 and 20 participated in semi-structured interviews, support mapping, and resiliency measurements to gather the experiences of the transition from foster care. Comparisons between those who chose initial transition supports and those who did not receive or delayed receiving transition supports were initially explored. Common themes emerged in participants' needs and perceived resiliency regardless of transition support services. All youth reported relationship, trust, and concern for well-being as highly important characteristics in transition team members. A need for earlier transition programming, decision-making opportunities, and life skills courses were important themes in transition programming needs. Implications for policy, research, and practice are presented based upon findings.
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http://dx.doi.org/10.1007/s11414-020-09693-6DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7518090PMC
April 2021

Integrating Behavioral and Primary Health Care in Rural Clinics: What Does Culture Have to Do with It?

J Health Care Poor Underserved 2020 ;31(1):201-217

Successful integration of health care in rural and underserved communities requires attention to power structures, trust, and disciplinary boundaries that inhibit team-based integration of behavioral and primary health care. This paper reports on perceived successes and ongoing challenges of integrating primary and behavioral health care from the perspectives of providers, community leaders, and community members. Data collection consisted of semi-structured qualitative interviews and focus groups conducted as part of a regional health equity assessment in northern Arizona. The authors explore barriers and successes in integrating health care in rural clinics using the perspective of a social ecological framework and the mediating role of culture. Differing expectations, differing professional areas, and interpersonal interactions were primary factors challenging movement toward integrated health care. Results suggest that providers and policymakers working toward health care integration should consider culture and interpersonal interaction as dynamic mediators, particularly in underserved and rural health care contexts.
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http://dx.doi.org/10.1353/hpu.2020.0018DOI Listing
May 2021

Adaptation of the System for Observing Play and Recreation in Communities (SOPARC) for the Measurement of Physical Activity in Jail Settings.

Int J Environ Res Public Health 2020 01 4;17(1). Epub 2020 Jan 4.

Center for Health Equity Research, Northern Arizona University, Flagstaff, AZ 86011, USA.

Over 9 million people are incarcerated in jail each year, but physical activity has not been assessed among incarcerated populations. Measuring physical activity in the jail setting is complicated as current physical activity measurement tools are not designed for use inside jail facilities. Therefore, we adapted an evidence-based physical activity measurement tool, the System for Observing Play and Recreation in Communities (SOPARC), to assess physical activity within a jail facility. SOPARC was designed to obtain observational information on physical activity of individuals. The study team created a protocol for SOPARC for use in jail facilities. Unlike the original SOPARC, access to recreation time in jail required prior scheduling. Target areas were unnecessary as recreation spaces were enclosed. The adapted SOPARC protocol for jails included start and end times, the number of individuals that attended, and recreation time users' physical activity levels, footwear, outerwear, uniform color, and use of mobility assistive devices. The use of SOPARC in the jail setting requires adaptation to adequately capture physical activity data among incarcerated individuals. Accurately measuring physical activity among incarcerated individuals and the environment in which they are active may allow for future development and testing of physical activity interventions in jail facilities.
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http://dx.doi.org/10.3390/ijerph17010349DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6981919PMC
January 2020

Exploring health and wellness among Native American adults with intellectual and/or developmental disabilities and their family caregivers.

J Appl Res Intellect Disabil 2020 May 22;33(3):327-333. Epub 2019 Aug 22.

Department of Health Sciences, Center for Health Equity Research, Northern Arizona University, Flagstaff, AZ, USA.

Background: Adults with intellectual and/or developmental disabilities (IDD) experience health inequities, and those who also identify as a member of an ethnic minority group face additional health inequities. In the United States, a majority of adults with IDD continue to be supported by family caregivers making their health equity also important. The purpose of this study was to explore how Native American adults with IDD and their family caregivers experience health and wellness.

Method: This community-engaged research was guided by a Community Advisory Board (CAB) with study participants completing a Photovoice project.

Results: Participants identified individual, family and community level influences on health and wellness including the importance of participation in meaningful activities and connection to culture.

Conclusions: In order to address health inequities, more research is needed to understand health and wellness from the unique perspectives of individuals with IDD and those from racial and ethnic minority groups.
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http://dx.doi.org/10.1111/jar.12664DOI Listing
May 2020

Supporting New Community-Based Participatory Research Partnerships.

Int J Environ Res Public Health 2018 12 25;16(1). Epub 2018 Dec 25.

Center for Health Equity Research, College of Health and Human Services, Northern Arizona University, Flagstaff, AZ 86011, USA.

Marginalized communities have a documented distrust of research grounded in negative portrayals in the academic literature. Yet, trusted partnerships, the foundation for Community-Based Participatory Research (CBPR), require time to build the capacity for joint decision-making, equitable involvement of academically trained and community investigators, and co-learning. Trust can be difficult to develop within the short time between a funding opportunity announcement and application submission. Resources to support community- and academic-based investigators' time to discuss contexts, concerns, integration of expertise and locally acceptable research designs and data collection are limited. The National Institutes of Health (NIH) funded Center for American Indian Resilience and the Southwest Health Equity Research Collaborative have implemented an internal funding mechanism to support community and academic-based investigators' travel cost and time to discuss complementary areas of interest and skills and to decide if moving forward with a partnership and a collaborative grant proposal would be beneficial to the community. The rationale and administration of this Community-Campus Partnership Support (CCPS) Program are described and four examples of supported efforts are provided. Centers and training programs frequently fund pilot grants to support junior investigators and/or exploratory research. This CCPS mechanism should be considered as precursor to pilot work, to stimulate partnership building without the pressure of an approaching grant application deadline.
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http://dx.doi.org/10.3390/ijerph16010044DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6338906PMC
December 2018

Broadening measures of success: results of a behavioral health translational research training program.

Implement Sci 2017 07 24;12(1):92. Epub 2017 Jul 24.

Department of Child and Family Studies, University of South Florida College of Behavioral and Community Sciences, 13301 Bruce B. Downs Blvd., MHC 2321, Tampa, FL, 33612, USA.

Background: While some research training programs have considered the importance of mentoring in inspiring professionals to engage in translational research, most evaluations emphasize outcomes specific to academic productivity as primary measures of training program success. The impact of such training or mentoring programs on stakeholders and local community organizations engaged in translational research efforts has received little attention. The purpose of this evaluation is to explore outcomes other than traditional academic productivity in a translational research graduate certificate program designed to pair graduate students and behavioral health professionals in collaborative service-learning projects.

Methods: Semi-structured qualitative interviews with scholars, community mentors, and academic mentors were conducted regarding a translational research program to identify programmatic impacts. Interviews were transcribed and coded by the research team to identify salient themes related to programmatic outcomes.

Results: Results are framed using the Translational Research Impact Scale which is organized into three overarching domains of potential impact: (1) research-related impacts, (2) translational impacts, and (3) societal impacts. This evaluation demonstrates the program's impact in all three domains of the TRIS evaluation framework. Graduate certificate participants (scholars) reported that gaining experience in applied behavioral health settings added useful skills and expertise to their present careers and increased their interest in pursuing translational research. Scholars also described benefits resulting from networks gained through participation in the program, including valuable ties between the university and community behavioral health organizations.

Conclusions: This evaluation of the outcomes of a graduate certificate program providing training in translational research highlights the need for more community-oriented and practice-based measures of success. Encouraging practitioner involvement in translational research is vital to translate knowledge into practice and to enable practice-based needs to inform research and policy. A more flexible approach to measuring programmatic success in research training programs can help bridge the knowledge translation gap.
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http://dx.doi.org/10.1186/s13012-017-0621-9DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5525239PMC
July 2017

Health Care Access for Adults With Intellectual and Developmental Disabilities: A Scoping Review.

OTJR (Thorofare N J) 2017 10 13;37(4):227-236. Epub 2017 Jul 13.

2 University of South Florida, Tampa, USA.

Adults with intellectual and/or developmental disabilities (IDD) often experience health disparities. To address disparities, Healthy People 2020 includes specific disability and health goals focused on improving health care access. The study's purpose was to review the literature exploring health care access for adults with IDD to identify opportunities for occupational therapy research and practice. A scoping review was completed of articles discussing health care access among adults with IDD in the United States. Thirty-seven articles met the inclusion criteria. Results are framed using the ecology of human performance theory identifying person and environmental issues affecting health care access of adults with IDD. Opportunities exist for occupational therapy to improve participation and health of adults with IDD through engaging in research and practice efforts addressing health care access. Occupational therapy could develop interventions to establish skills and abilities and recommend changes to the health care environment.
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http://dx.doi.org/10.1177/1539449217714148DOI Listing
October 2017

Implementation of Medicaid Managed Long-Term Services and Supports for Adults With Intellectual and/or Developmental Disabilities in Kansas.

Intellect Dev Disabil 2017 04;55(2):84-96

Oliver T. Massey, University of South Florida College of Behavioral and Community Sciences.

Many adults with intellectual and/or developmental disabilities (IDD) can access health and long-term services and supports (LTSS) through Medicaid. States are reforming their Medicaid LTSS programs from a fee-for-service model to a Medicaid managed LTSS (MLTSS) approach, anticipating improved quality of care and reduced costs, although there is limited evidence of MLTSS effectiveness. This study's objective was to contribute to the growing MLTSS research literature by describing MLTSS implementation in Kansas for adults with IDD. Thirty-one stakeholders completed in-depth semi-structured interviews, representing state or regional groups, service coordination providers, and family caregivers. Findings identify key aspects of the Centers for Medicare and Medicaid Services' new MLTSS regulations in the design and implementation of MLTSS programs.
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http://dx.doi.org/10.1352/1934-9556-55.2.84DOI Listing
April 2017

Community-University Partnerships for Research and Practice: Application of an Interactive and Contextual Model of Collaboration.

J High Educ Outreach Engagem 2016 ;20(2):55-84

Community-university partnerships are frequently used to enhance translational research efforts while benefiting the community. However, challenges remain in evaluating such efforts. This article discusses the utility of applying the contextual and interactive model of community-university collaboration to a translational research education program, the Institute for Translational Research in Adolescent Behavioral Health, to guide programmatic efforts and future evaluations. Institute stakeholders from academia and the community completed in-depth interviews querying their expectations and experiences in this collaboration. Key quotes and themes were extracted and analyzed based on the constructs within the 3 phases of the model. The findings note specific themes for future evaluations. Overall, the contextual and interactive model of community-university collaboration proved a useful framework to guide the process evaluation of the Institute. Findings suggest possible strategies for the successful development, evaluation, and sustainability of community-university partnerships.
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5295659PMC
January 2016

Challenges and Benefits in Designing and Implementing a Team-Based Research Mentorship Experience in Translational Research.

Pedagogy Health Promot 2015 Dec;1(4):233-246

University of South Florida, Tampa, FL, USA.

Background: Translational research seeks to build bridges between research and practice to address public health issues efficiently and effectively. The purpose of this paper was to evaluate a newly formed Institute that provided graduate students and adolescent behavioral health community professionals with a translational research service-learning opportunity through the creation of a community-university mentoring partnership. Goals of the team-based research mentorship approach included: 1) providing students the skills for implementing translational research; 2) providing research opportunities for community agencies to enhance operations and to encourage ongoing research involvement; and 3) developing relationships between university faculty and community agency professionals for further research collaborations.

Methods: The Institute used the National Institute on Drug Abuse's Mentoring Mosaic to select a diverse group of Community and Academic Mentors. The research mentorship experience of the initial cohort was evaluated based upon the Research Mentorship Conceptual Framework and Self-Assessment Tool.

Results: As a direct result of the research mentorship, outcomes for the Academic and Community Mentors and Scholars (i.e., those seeking a graduate certificate) included improved working relationships/networking and research experience. Through experiential learning, Scholars also discovered career trajectory clarity, the need for community collaboration in research, opportunities for continuing professional development, a greater understanding of public health competencies and how they align with community-based research, and skill development in best practices for translational research.

Conclusion: The team mentoring approach is a form of pedagogy that holds promise to enhance translational research and community-based research efforts while developing public health competencies.
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http://dx.doi.org/10.1177/2373379915600174DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4774555PMC
December 2015

Family caregivers of adults with intellectual and developmental disabilities: outcomes associated with U.S. services and supports.

Intellect Dev Disabil 2014 Apr;52(2):147-59

Individuals with intellectual and developmental disabilities (IDD) in the U.S. predominantly live with their family caregivers. As care delivery and support systems vary widely globally, consideration of caregiver outcomes specifically in the U.S. context is needed. A systematic literature review was conducted to identify U.S. family caregiver outcomes and their association with existing services and supports for family caregivers of adults with IDD. Twenty-four articles were compiled using the PubMed, Web of Knowledge, PsychInfo, and CINAHL databases. Studies report economic, mental, and physical health outcomes from caregiving roles. The need for comprehensive caregiver assessment is discussed. Understanding and responding to the changing needs of family caregivers is vital to the U.S. disability service system to effectively prioritize formal resources and services.
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http://dx.doi.org/10.1352/1934-9556-52.2.147DOI Listing
April 2014
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