[Show abstract][Hide abstract] ABSTRACT: Background: Accessible, culturally relevant data collection tools to assess the sexual health
knowledge of lesbian, gay, bisexual, trans, queer and questioning (LGBTQ) young people labelled with intellectual disabilities are sparse.
Materials and Methods: Using community-based participatory research (CBPR) we piloted a variety of interactive activities designed to assess the sexual health knowledge and decision making skills of LGBTQ young people with intellectual disabilities.
Results: Posters created by youth participants suggested substantial sexual health knowledge and empowerment, while individual knowledge assessment scores indicated a range in understanding of risks and strategies to avoid pregnancy, HIV and herpes.
Conclusions: These findings reinforce the importance of using multiple strategies to assess sexual knowledge with this population. Creative evaluation strategies catering to the cultural specificities, sexual experiences, and cognitive abilities of diverse youth help to clarify gaps in knowledge and areas for renewed attention.
[Show abstract][Hide abstract] ABSTRACT: Clinical training in low-income countries has become increasingly popular among pre-licensure trainees from high-income countries. The Working Group on Ethics Guidelines for Global Health Training ("WEIGHT Guidelines") were designed to identify and inform the complex and contentious field of international clinical education. The purpose of this study was to use the WEIGHT Guidelines to evaluate an international clinical internship programme for Master's-level rehabilitation students at a Canadian university.
BMC Medical Education 09/2014; 14(1):187. · 1.41 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Many occupational therapy programs have augmented curricula to provide students with opportunities to engage in international fieldwork placements (IFPs). However, limited research exists exploring the perceived influence that IFPs may have on future occupational therapy roles and characteristics.
Canadian journal of occupational therapy. Revue canadienne d'ergothérapie. 06/2014; 81(3):173-82.
[Show abstract][Hide abstract] ABSTRACT: Introduction: Despite the emerging body of literature on increased vulnerability to HIV among people with disabilities (PWDs), there is a dearth of evidence related to experiences of PWDs who have become HIV-positive. This priority was identified by a disability advocacy organization in Lusaka, Zambia, where the prevalence of HIV and of disability is each approximately 15%. The purpose of this study was to explore perceptions and experiences of HIV-related health services for PWDs who are also living with HIV in Lusaka, Zambia. Methods: This qualitative, interpretive study involved in-depth, semi-structured, one-on-one interviews with two groups of participants in Lusaka, Zambia: 21 PWDs who had become HIV-positive, and 11 people working in HIV and/or disability. PWDs had physical, hearing, visual and/or intellectual impairments. Interviews were conducted in English, Nyanja, Bemba or Zambian sign language. Descriptive and thematic analyses were conducted by a multidisciplinary, international research team. Results: Participants described their experiences with HIV-related health services in terms of the challenges they faced. In particular, they encountered three main challenges while seeking care and treatment: (1) disability-related discrimination heightened when seeking HIV services, (2) communication barriers and related concerns with confidentiality, and (3) movement and mobility challenges related to seeking care and collecting antiretroviral therapy. These experiences were further shaped by participants' profound concerns about poverty and unmet basic needs. Discussion: This study demonstrates how PWDs who are HIV-positive have the same HIV care, treatment and support needs as able-bodied counterparts, but face avoidable barriers to care. Many challenges mirror concerns identified with HIV prevention, suggesting that efforts to promote inclusion and reduce stigma could have widespread benefits. Conclusions: Despite the growing body of literature on increased risk of exposure to HIV among HIV-negative PWDs, this is the first published study to examine perceptions of testing, treatment and other HIV services for PWDs who have become HIV-positive. Findings reveal far-reaching opportunities for improving the quality of care for this population.
Journal of the International AIDS Society 04/2014; 17(1):18806. · 3.94 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Abstract Purpose: Little is known about the experiences of people with disabilities (PWD) who live with HIV. Existing research largely assumes a "double burden" approach, which views HIV as doubling the load for people already burdened by disability. Intersectionality (a dynamic process of converging systems of relationships) offers an alternative approach for understanding differences in experience. This study uses an intersectional approach to explore the experiences of PWD in Zambia who have become HIV-positive. Methods: We conducted semi-structured, in depth interviews with 21 PWD who live with HIV in Zambia (12 women, 9 men). Participants had various impairments (visual, hearing, mobility, intellectual). Interviews were conducted to meet participants' accessibility preferences. Results: Our intersectional analysis demonstrates the dynamic and situational emergent meanings and consequences for PWD who are living with HIV related to: (1) meanings of HIV and disability linked with time and trajectory; (2) oppression and negotiation related to accessing health services and (3) social roles and relationships. Three case studies illustrate these circumstances. Conclusions: Intersectionality offers a complementary approach for examining the complex interrelationship among HIV, disability, gender and time among PWD living with HIV. Findings illustrate directions for improved services and policies for this important group. Implications for Rehabilitation Rehabilitation services need to take a cross-disability (multiple disabilities) approach working with people living with HIV and disability. Rehabilitation, as illustrated by a CBR approach, needs to include services that will facilitate not only health, but education, jobs and housing for people living with HIV and disability. Rehabilitation needs to make more direct connections with Zambia social service sector to help address the fluctuating experience of living with HIV and disability.
Disability and Rehabilitation 03/2014; · 1.54 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Health promotion researchers are increasingly conducting Community-Based Participatory Research in an effort to reduce health disparities. Despite efforts towards greater inclusion, research teams continue to regularly exclude diverse representation from data analysis efforts. The DEPICT model for collaborative qualitative analysis is a democratic approach to enhancing rigour through inclusion of diverse stakeholders. It is broken down into six sequential steps. Strong leadership, coordination and facilitation skills are needed; however, the process is flexible enough to adapt to most environments and varying levels of expertise. Including diverse stakeholders on an analysis team can enrich data analysis and provide more nuanced understandings of complicated health problems.
Health Promotion International 01/2014; · 1.94 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Web or Internet-based surveys are increasingly popular in health survey research. However, the strengths and challenges of Web-based surveys with people living with human immunodeficiency virus (HIV) are unclear.
The aim of this article is to describe our experience piloting a cross-sectional, Web-based, self-administered survey with adults living with HIV using a community-based participatory research approach.
We piloted a Web-based survey that investigated disability and rehabilitation services use with a sample of adults living with HIV in Canada. Community organizations in five provinces emailed invitations to clients, followed by a thank you/reminder one week later. We obtained survey feedback in a structured phone interview with respondents. Participant responses were transcribed verbatim and analyzed using directed content analysis.
Of 30 people living with HIV who accessed the survey link, 24/30 (80%) initiated and 16/30 (53%) completed the survey instrument. A total of 17 respondents participated in post-survey interviews. Participants described the survey instrument as comprehensive, suggesting content validity. The majority (13/17, 76%) felt instruction and item wording were clear and easy to understand, and found the software easy to navigate. Participants felt having a pop-up reminder directing them to missed items would be useful.
Strengths of implementing the Web-based survey included: our community-based participatory approach, ease of software use, ability for respondents to complete the questionnaire on one's own time at one's own pace, opportunity to obtain geographic variation, and potential for respondent anonymity. Considerations for future survey implementation included: respondent burden and fatigue, the potentially sensitive nature of HIV Web-based research, data management and storage, challenges verifying informed consent, varying computer skills among respondents, and the burden on community organizations. Overall, results provide considerations for researchers conducting community-based participatory Web-based survey research with people living with HIV.
Journal of Medical Internet Research 01/2014; 16(3):e81. · 3.77 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Abstract Purpose: To identify the characteristics of peer-reviewed literature on community-based rehabilitation (CBR) in low- and middle-income countries published in English from 2003 to 2012. Methods: This scoping review involved a systematic search of electronic databases using specific keyword/subject heading combinations. Journal articles were included if they were published in English, used "CBR" as related to rehabilitation with persons with disabilities and not limited to high-income countries (HICs). Data were charted according to both pre-determined and emergent categories. A subset of articles was charted by two reviewers to ensure reliability of variables. Results: A total of 114 articles were included. Fifty-two articles presented empirical research and 49 were published in one of two journals. The articles represented CBR activity in 26 specific countries, although only two of these were in Europe and only one was in the Americas. Authors were predominantly affiliated at universities and in HICs. Conclusions: This scoping review identified and characterized a large pool of literature on CBR, facilitating its incorporation into research and practice. Future research should examine the engagement of persons with disabilities in creating CBR literature, and analysis of literature in languages other than English. Implications for Rehabilitation Community-based rehabilitation (CBR) has been promoted as a rehabilitation strategy of choice in low- and middle-income countries (LMICs), but it has been critiqued for lack of an evidence base. A large number (114) of peer-reviewed articles were published on CBR between 2003 and 2012. Just under half of these articles (45%) presented empirical research, indicating that the evidence base for CBR is growing but will benefit from continued, rigorous inquiry. Furthermore, researchers from LMICs appear to be largely under-represented in published CBR research, flagging the need to support LMIC partners to share their CBR research in peer-reviewed journals.
Disability and Rehabilitation 10/2013; · 1.54 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Abstract Purpose: To report the extent (how many), range (variation) and nature (qualities) of rehabilitation interventions for children living with HIV. Method: Electronic databases, reference lists of included articles, and grey literature were searched. Title and abstract and full text review were completed independently by two reviewers. Each study's location, research methodology, interventions, the age of the participants, whether participants were receiving antiretroviral therapy (ART), the health professions delivering the interventions, when the study was conducted and the composition of the research team were documented. The nature of the intervention goals was organized into qualitative categories. Results: The 17 included studies were conducted in seven countries. Seven rehabilitation professions were involved with the interventions. The age of the participants ranged from 3 months to 24 years. The year in which the study was conducted and whether children were receiving ART were rarely specified. Studies focused on impairments. There were no studies on activity limitations and only two studies on participation restrictions. Alternative and complementary therapies were the most common interventions. Conclusions: Research in this area is limited. More rehabilitation research is needed especially in areas where the burden of the disease is highest and for those children receiving ART. Implications for Rehabilitation Many low-and-middle-income countries (LMICs) struggle with an undersupply of trained rehabilitation professionals. Due to the large number of children living with HIV in LMICs, and as more continue to receive life-saving treatment, the need will grow for more rehabilitation professionals to work with this population to address HIV-related disability. This scoping review indicates that there is a dearth of research on interventions provided by allied health professionals, including physiotherapists, occupational therapists and speech language pathologists for children living with HIV. There is a moderate literature base supporting the use of alternative and complementary therapies for children living with HIV.
Disability and Rehabilitation 08/2013; · 1.54 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Introduction: Research investigating HIV, neurocognition and ageing is well developed using neuropsychometric or other quantitative approaches; however, little is known about individuals' subjective experiences. The purpose of this article is to explore the experiences of men aged 50 and older who self-identify as having HIV-associated neurocognitive challenges. In particular, this study uses the Episodic Disability Framework (EDF) to explore participants' perceptions regarding: 1) symptoms/impairments, difficulties with day-to-day activities, challenges with social inclusion and uncertainty; 2) ageing as related to their HIV-associated neurocognitive challenges, and 3) the episodic nature of their HIV-associated neurocognitive challenges. Methods: This qualitative, interpretive study involved in-depth, semi-structured interviews with 12 men aged 50 years and older who self-identified as having HIV-associated neurocognitive challenges. Participants were recruited from a neurobehavioural research unit (NBRU) at a large hospital in Toronto, Canada. Data were analyzed thematically and with reference to the EDF. Results: Participants' experiences reflected all concepts within the EDF to some extent. Difficulties with daily activities were diverse but were addressed using similar living strategies. Participants described challenges with work and social relationships resulting from neurocognitive challenges. Participants downplayed the significance of uncertainty in their lives, which they attributed to effective living strategies. Most men reported confusion regarding the link between their neurocognitive challenges and ageing. Others discussed ageing as an asset that helped with coping. Conclusions: This is the first study to use a disability framework to examine the subjective experiences of men ageing with HIV-associated neurocognitive challenges. Findings reframe the episodic disability experienced by these individuals as being predictably linked to certain triggers. As such, support for managing neurocognitive challenges could focus on triggers that exacerbate the condition in addition to the impairments themselves. The study also describes ageing as not only a source of problems but also as an asset among men growing older with HIV.
Journal of the International AIDS Society 07/2013; 16:18506. · 3.94 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: In this paper we examine "ethics creep", a concept developed by Haggerty (2004) to account for the increasing bureaucratization of research ethics boards and institutional review boards (REB/IRBs) and the expanding reach of ethics review. We start with an overview of the recent surge of academic interest in ethics creep and similar arguments about the prohibitive effect of ethics review. We then introduce elements of Michel Foucault's theoretical framework which are used to inform our analysis of empirical data drawn from a multi-phase study exploring the accessibility of community-engaged research within existing ethics review structures in Canada. First, we present how ethics creep emerged both explicitly and implicitly in our data. We then present data that demonstrate how REB/IRBs are experiencing their own form of regulation. Finally, we present data that situate ethics review alongside other trends affecting the academy. Our results show that ethics review is growing in some ways while simultaneously being constrained in others. Drawing on Foucauldian theory we reframe ethics creep as a repressive hypothesis which belies the complexity of the phenomenon it purports to explain. Our discussion complicates ethics creep by proposing an understanding of REB/IRBs that locates them at the intersection of various neoliberal discourses about the role of science, ethics, and knowledge production.
Social Science [?] Medicine 09/2012; · 2.73 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Young lesbian, gay, bisexual, and transgender (LGBT) people labeled with intellectual disabilities have unique sexual health needs that are not being met. Denial by others of their right to pleasure and the exercise of heightened external control over their sexuality are commonplace. Current research indicates that these youth are at heightened risk for compromised sexual health. This study aimed to explore the ways in which social and environmental conditions influence vulnerability to adverse sexual health outcomes for this population. We used a community-based research approach to conduct qualitative interviews and focus groups with 10 young LGBT people (aged 17-26) labeled with intellectual disabilities. Participants reported multiple limitations on their autonomy that resulted in having sex in places where they did not feel comfortable and were unlikely to practice safer sex. Attempts by authority figures to protect youth through limits on their autonomy may be unintentionally leading to negative sexual health outcomes.
Journal of Homosexuality 07/2012; 59(6):808-19. · 0.78 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Purpose: To use the World Health Organization's International Classification of Functioning, Disability and Health (ICF) to explore the experiences of women living with self-identified HIV-associated neurocognitive challenges. Method: This interpretive, qualitative study involved key informant interviews with 16 women with self-identified HIV-associated neurocognitive challenges. Data were collected through 60-90 min, in-depth, semi-structured interviews. Thematic analysis was performed using an inductive approach. Theoretical analysis then used the ICF to reconceptualize the data using a disability lens. Results: Participants perceived impairments (e.g. memory loss, difficulty multi-tasking) and participation restrictions (e.g. parenting, work roles) resulting from their neurocognitive challenges as having a larger impact on their daily lives than activity limitations (e.g. difficulty with chores). Participants held contrasting views about parenting: women with children drew strength from parenting whereas women without children worried that parenting could compromise their health. Participation in work and volunteering roles was viewed as integral to managing neurocognitive challenges and health overall. Conclusions: Conceptualizing neurocognitive challenges through a disability lens focuses attention on how impairments interact with other realities in these women's lives. This exploratory study reveals the need for future research exploring perceptions among people living with HIV-associated neurocognitive challenges with attention to aging and among other vulnerable groups. [Box: see text].
Disability and Rehabilitation 05/2012; · 1.54 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Research ethics boards and institutional review boards (REBs/IRBs) have been criticized for relying on conceptions of research that privilege biomedical, clinical, and experimental designs, and for penalizing research that deviates from this model. Studies that use a community-based participatory research (CBPR) design have been identified as particularly challenging to navigate through existing ethics review frameworks. However, the voices of REB/IRB members and staff have been largely absent in this debate. The objective of this article is to explore the perspectives of members of Canadian university-based REBs/IRBs regarding their capacity to review CBPR protocols. We present findings from interviews with 24 Canadian REB/IRB members, staff, and other key informants. Participants were asked to describe and contrast their experiences reviewing studies using CBPR and mainstream approaches. Contrary to the perception that REBs/IRBs are inflexible and unresponsive, participants described their attempts to dialogue and negotiate with researchers and to provide guidance. Overall, these Canadian REBs/IRBs demonstrated a more complex understanding of CBPR than is typically characterized in the literature. Finally, we situate our findings within literature on relational ethics and explore the possibility of researchers and REBs/IRBs working collaboratively to find solutions to unique ethical tensions in CBPR.
Journal of Empirical Research on Human Research Ethics 02/2012; 7(1):15-25. · 1.49 Impact Factor