[Show abstract][Hide abstract] ABSTRACT: The advent of anti-retroviral therapy (ART) in Southern Africa holds the promise of shifting the experience of HIV toward that of a manageable chronic condition. However, this potential can only be realized when persons living with HIV are able to access services without barriers, which can include stigma. Our qualitative study explored experiences of persons living with disabilities (PWD) in Lusaka, Zambia who became HIV-positive (PWD/HIV+).
We conducted interviews with 32 participants (21 PWD/HIV+ and 11 key informants working in the fields of HIV and/or disability). Inductive thematic analysis of interview transcripts was informed by narrative theory. Participants' accounts highlighted the central role of stigma experienced by PWD/HIV+, with stigmatizing attitudes closely linked to prevailing societal assumptions that PWD are asexual. Seeking diagnostic and treatment services for HIV was perceived as evidence of PWD being sexually active. Participants recounted that for PWD/HIV+, stigma was enacted in a variety of settings, including the queue for health services, their interactions with healthcare providers, and within their communities. Stigmatizing accounts told about PWD/HIV+ were described as having important consequences. Not only did participants recount stories of internalized stigma (with its damaging effects on self-perception), but also that negative experiences resulted in some PWD preferring to "die quietly at home" rather than being subjected to the stigmatizing gaze of others when attempting to access life-preserving ART. Participants recounted how experiences of stigma also affected their willingness to continue ART, their willingness to disclose their HIV status to others, as well as their social relations. However, participants also offered counter-stories, actively resisting stigmatizing accounts and portraying themselves as resilient and resourceful social actors.
The study highlights a significant barrier to healthcare experienced by PWD/HIV+, with important implications for the future design and equitable delivery of HIV services in Zambia. Stigma importantly affects the abilities of PWD/HIV+ to manage their health conditions.
PLoS ONE 06/2015; 10(6):e0127392. DOI:10.1371/journal.pone.0127392 · 3.23 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: This paper focuses on accounts of how having a disability and being HIV-positive influences experiences of work among 21 people (12 women, 9 men) in Lusaka, Zambia. In-depth semi-structured interviews were conducted in English, Bemba, Nyanja, or Zambian sign language. Descriptive and thematic analyses were conducted. Three major themes were generated. The first, a triple burden, describes the burden of having a disability, being HIV-positive, and being unemployed. The second theme, disability and HIV is not inability, describes participants' desire for work and their resistance to being regarded as objects of charity. Finally, how work influences HIV management, describes the practicalities of working and living with HIV. Together these themes highlight the limited options available to persons with disabilities with HIV in Lusaka, not only secondary to the effects of HIV influencing their physical capacity to work, but also because of the attendant social stigma of being a person with a disability and HIV-positive.
African Journal of AIDS Research 03/2015; 14(1):51-6. DOI:10.2989/16085906.2015.1016985 · 0.61 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: This special section in Health and Human Rights Journal explores the relationship between bioethics and the right to health. Although bioethics scholars may argue for a right to health, particularly in the domains of universal health coverage and global health governance, and human rights scholars may advance ethical norms in their work, there has been little scholarly attention to the intersections, synergies, and contrasts between these two areas of study. At first glance, this is surprising given that bioethics and human rights share conceptual and normative terrain in articulating guidance for action on health-related issues and international policy and practice is explicitly interrelating human rights and ethics.
Copyright 2015 Gibson, Forman, Nixon. This is an open access article distributed under the terms of Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licences/by-nc/3.0/), which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original authors and source are credited.
[Show abstract][Hide abstract] ABSTRACT: Abstract Purpose: HIV-related disability is an emerging issue in countries where HIV is endemic. This study aimed to understand experiences of disability in patients living with HIV in South Africa using the International Classification of Functioning, Disability and Health (ICF) as a guiding framework. Methods: In-depth interviews were conducted with 19 HIV-positive people receiving ART through a public hospital in KwaZulu-Natal. Data were analyzed using collaborative qualitative content analysis. Results: Participants described a variety of impairments related to mental, sensory, neuromusculoskeletal, skin, cardiovascular, digestive or reproductive systems. A tenuous relationship was evident between HIV and mental health impairments and the experience of other disabilities. Impairments affected participants' activity levels, especially mobility, domestic life, self-care and ability to work. Activity limitations affecting livelihood were often of more concern to participants than the impairments. Furthermore, women and men appeared to experience disability related to activities relevant to gendered norms in their cultural context. Conclusions: More understanding of the intersections among HIV, disability, gender and livelihood is needed. To respond to the increased need to manage disability within HIV care in Africa, HIV programs should include rehabilitative approaches, address concerns related to livelihoods in households with disability and consider gender differences in the experience of disability. Implications for Rehabilitation HIV, its opportunistic infections and the treatments associated to them are related to health conditions and impairments that have the potential to develop into disability. Rehabilitation professionals in HIV endemic countries have therefore a larger and changing number of people living with HIV and need to consider the impact of the disease on the rehabilitation process. Mental health issues and disability might be interrelated and affect antiretroviral treatment (ART) adherence. Hence, rehabilitation has to use a holistic approach and integrate different therapy approaches (e.g. physiotherapy and mental health). The experience of living with HIV and developing disability has unreflected gender dynamics that need to be considered in rehabilitative care. Hence, the rehabilitation process has to consider the cultural realities and gendered experience of the condition. The study highlights the interrelationship between disability levels, the influence of environmental and social factors, and the changing experience related to gender. Hence, rehabilitation professionals in resource-poor settings have to go beyond the clinical response and therapy approaches in order to improve the activity and participation of people with disabilities and those living with HIV in their homes and communities. Community or home-based care might be avenues to further explore.
Disability and Rehabilitation 12/2014; DOI:10.3109/09638288.2014.993432 · 1.84 Impact Factor
[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: Background
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.
In-depth, semi-structured interviews were conducted with eight Canadian rehabilitation researchers, educations and/or clinicians responsible for administering international internships across three clinical training programmes. Interview questions were informed by the WEIGHT Guidelines. Directed content analysis was used to identify priorities for policy, practice and research.
Five themes relating to strengthening international clinical education were identified: (1) from one-time internships to long-term partnerships, (2) starting a discussion about “costs”, (3) a more informed approach to student selection, (4) expanding and harmonizing pre-departure training across disciplines, and (5) investing in post-internship debriefing.
International clinical education is fraught with ethical, pedagogical and logistical issues that require recognition and ongoing management. This is the first study to use the WEIGHT Guidelines as a qualitative research tool for assessing an existing global health education programme. Results highlight new priorities for action at the Canadian “sending institution”, including more explicit attention to the costs (broadly defined) borne by all parties. A crucial next step is deepened engagement with educational partners at the “receiving organizations” based in low-income countries to nurture dialogue regarding reciprocity, trust and sustainability of the partnership. Education research is also needed that evaluates models of pre-departure training and post-internship debriefing for trainees.
BMC Medical Education 09/2014; 14(1):187. DOI:10.1186/1472-6920-14-187 · 1.41 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: In patients undergoing an amputation secondary to vascular disease, little is known about the timing, mode of delivery, or amount of information needed. The purpose of this study was to explore the perspectives of patients who have undergone a major lower limb amputation as a result of vascular disease, regarding the information healthcare professionals should provide to them during their acute hospital stay. A qualitative study using descriptive methodology was used. Patients were included if they had a major lower limb amputation 1 week to 2 years before the interview. Purposive sampling was used. Sixteen patients participated in a semistructured interview, either face to face or by telephone. Interviews were transcribed verbatim. Thematic analysis was used. Transcripts were coded by two researchers and compared. N-vivo, descriptive and interpretative analyses were used to assess transcribed interviews. Patients stated that there was insufficient information on a variety of topics, including the recovery process, expectations for rehabilitation, and prosthetics. They went on to describe that high pain levels, age, and emotional status affected the delivery of information to them. Patients had different perspectives on timing of information, mode of delivery, and amount of information. An individualized approach to the delivery of information should be considered for patients undergoing major lower limb amputation. Involved healthcare professionals need to take into consideration patient-specific preferences and unique educational needs before the delivery of information. We anticipate that findings from this study will influence the development of an educational program to deliver effective patient centered care in this unique patient population.
Journal of vascular nursing: official publication of the Society for Peripheral Vascular Nursing 09/2014; 32(3):88-98. DOI:10.1016/j.jvn.2014.01.002
[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.
[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. DOI:10.7448/IAS.17.1.18806 · 4.21 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Purpose: To describe the collaborative goal-setting practices of community-based physical therapists trained in a self-management (SM) approach who work with clients with chronic conditions and to describe clients' goal-achievement rates. Methods : A retrospective chart review was conducted for 296 randomly selected home-care clients from July 2009 through July 2010 using a chart-abstraction form created to capture demographic data and information related to goal setting and achievement. Data were analyzed using frequencies, percentages, and Pearson's chi-square tests. Results: There was no significant relationship between sex, age, or number of chronic conditions and setting SM or non-self-management (NSM) goals or the type of SM goal set. The majority of goals set were "action" as opposed to "verbal" goals. A high proportion (89-100%) of both SM and NSM goals were met. Conclusions: Clinicians should be aware that it is possible to set SM goals regardless of the client's sex, age, or number of chronic conditions. Other possible influences on goal setting, such as severity of chronic conditions and challenges of the health care system, should be further investigated.
[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 03/2014; 16(3):e81. DOI:10.2196/jmir.3064 · 4.67 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; 36(25). DOI:10.3109/09638288.2014.894144 · 1.84 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: The past 15 years have witnessed a proliferation of sport-for-development organizations mobilizing sport activities as a tool for international development. Along with the growth in programmes, an academic analysis of this phenomenon has emerged. However, this body of research has not included an analysis from a critical occupational perspective. This is a conspicuous shortcoming since sport-for-development initiatives are occupation-based programmes. In this paper, we used a critical occupational approach to explore how programme staff and youth participants speak about and understand the use of sport activities in sport-for-development programmes in Lusaka, Zambia. Our findings illuminate the form, function, and meaning of sports in the programmes. Considering the form, function, and meaning together, given that football – which is heavily gendered and segregated – was constructed as the preferential activity for programmes, non-disabled boys were seen as the primary beneficiaries of the programmes.
[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; DOI:10.1093/heapro/dat093 · 1.94 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Purpose: To explore the perspectives of Canadian physiotherapists with global health experience on the ideal competencies for Canadian physiotherapists working in resource-poor countries. Method: A qualitative interpretive methodology was used, and the Essential Competency Profile for Physiotherapists in Canada, 2009 (ECP), was employed as a starting point for investigation and analysis. Semi-structured one-on-one interviews (60-90 minutes) were conducted with 17 Canadian physiotherapists who have worked in resource-poor countries. Descriptive and thematic analyses were conducted collaboratively. Results: The seven ECP roles-Expert, Communicator, Collaborator, Manager, Advocate, Scholarly Practitioner, and Professional-were all viewed as important for Canadian physiotherapists working in resource-poor countries. Two roles, Communicator and Manager, have additional competencies that participants felt were important. Three novel roles-Global Health Learner, Critical Thinker, and Respectful Guest-were created to describe other competencies related to global health deemed crucial by participants. Conclusions: This is the first study to examine competencies required by Canadian physiotherapists working in resource-poor countries. In addition to the ECP roles, supplementary competencies are recommended for engagement in resource-poor countries. These findings align with ideas in current global health and international development literature. Future research should examine the relevance of these findings to resource-poor settings within Canada.
[Show abstract][Hide abstract] ABSTRACT: Purpose: To explore the perspectives of leading advocates regarding the attributes required for excelling in the advocate role as described within the Essential Competency Profile for Physiotherapists in Canada (2009). Methods: We used a descriptive qualitative design involving in-depth, semi-structured interviews conducted with leading Canadian advocates within the physiotherapy profession. Transcribed interviews were coded and analyzed using thematic analysis. Results: The 17 participants identified eight attributes necessary for excelling in the role of advocate: collaboration, communication, scholarly practice, management, professionalism, passion, perseverance, and humility. The first five attributes correspond to roles within the Essential Competency Profile for Physiotherapists in Canada. Participants identified the attributes of collaboration, communication, and scholarly practice as the most important for successful advocacy. Participants also noted that the eight identified attributes must be used together and tailored to meet the needs of the advocacy setting. Conclusions: Identifying these eight attributes is an important first step in understanding how competence in the advocate role can be developed among physiotherapy students and practitioners. Most importantly, this study contributes to the knowledge base that helps physiotherapists to excel in advocating for their clients and the profession.
[Show abstract][Hide abstract] ABSTRACT: Background: In the era of enhanced access to ART, many people live longer lives but with episodes of disability re- sulting from HIV, HIV-related conditions, and/or as side-effects of ART. It is crucial to understand the extent of dis- ability among people living with HIV in high-prevalence settings to inform choices regarding care, policy and research. This article presents the results of the first scoping review to examine the extent, nature and range of disability among people living with HIV in HIV hyper-endemic countries. Methods: This scoping review used the World Health Orga- nization’s International Classification of Functioning, Disability and Health (ICF) to conceptualize “disability”. A sys- tematic search of electronic databases was conducted using specific keyword and subject heading combinations. Iden- tified publications were screened and reviewed according to inclusion/exclusion criteria. Data were systematically ex- tracted and reviewed for quality. Extracted data were reviewed for patterns related to methods or results. Results were aligned with the corresponding ICF code. Results: Forty-one articles were included, reporting data from 38 unique studies. Most (78%) of the studies were conducted in South Africa; five in Botswana, one in Zimbabwe and Lesotho, and none in Swaziland. Almost all studies recruited more females than males. All studies except two were in adults. The studies indicate that people living with HIV experience a variety of disabilities. Impairments in body structure/function comprise the majority of data, with particular focus on mental function. Data on activity limitations and participations restriction were limited, however were recorded it indicates severe impact on peoples life’s and possible adherence. Conclusions: We argue that the time has come to elevate the focus holistically on health and life-related consequences of living with HIV and to integrate disability into the discussions and approaches to HIV care.
World Journal of AIDS 11/2013; 3(03). DOI:10.4236/wja.2013.33034
[Show abstract][Hide 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 predetermined 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.
Disability and Rehabilitation 10/2013; 36(17). DOI:10.3109/09638288.2013.845257 · 1.84 Impact Factor