Stephanie A Nixon

University of Toronto, Toronto, Ontario, Canada

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Publications (71)109.49 Total impact

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    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; · 1.84 Impact Factor
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    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.
    Critical Disability Discourse. 12/2014; 6.
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    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
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    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.
  • Canadian Journal of Occupational Therapy 06/2014; 81(3):173-182. · 0.74 Impact Factor
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    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.
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    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. · 4.21 Impact Factor
    This article is viewable in ResearchGate's enriched format
  • Stephanie A. Nixon, Margaret C. Maimbolwa
    Developing World Bioethics 04/2014; 14(1). · 0.83 Impact Factor
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    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; · 1.84 Impact Factor
  • Sport in Society. 01/2014; 17(6-6):790-807.
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    Sarah Flicker, Stephanie A Nixon
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    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
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    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. · 4.67 Impact Factor
  • Shaun Cleaver, Stephanie Nixon
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    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; · 1.84 Impact Factor
  • Marianne Stevens, Bonnie Kirsh, Stephanie A Nixon
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    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; · 1.84 Impact Factor
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    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(1):18506. · 4.21 Impact Factor
    This article is viewable in ResearchGate's enriched format
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    ABSTRACT: International fieldwork placements (IFPs) have become very popular among healthcare students including those in occupational therapy programmes. There are many potential benefits that can accrue to the students; however, there are critiques of international placements especially for students going to underserviced areas. The purpose of this paper is to provide a case study/model programme description that critically reflects on six partnerships in three underserviced countries that provide IFPs to students from one Canadian university. The personal opinions of each partner were collected verbally, by email and by a qualitative review of the past 10 years of partnership interaction. Some of the benefits reported by partners include the development of an increased number of sustainable long-term quality placements, orientation materials, student supports and the involvement of university faculty in research and capacity building projects in partner countries. A number of challenges were identified including the need for an expanded formal agreement, more bilateral feedback and examination of supervision models. This paper examines a limited number of partnerships with only one Canadian partner. Direct input of students is not utilized, although feedback given to co-authors by students is reflected. More research is needed on perspectives of partners in IFPs, impact of IFPs on clinical practice in student's home countries, impact of IFPS on underserviced areas and effective strategies for debriefing. Copyright © 2013 John Wiley & Sons, Ltd.
    Occupational Therapy International 06/2013; 20(2):85-93. · 0.67 Impact Factor
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    ABSTRACT: The country of Zambia's Sixth National Development Plan includes many objectives related to participation and health that align with values underlying occupational therapy. Given this link, occupational therapy research has the potential to advance the Sixth National Development Plan and thereby enhance the participation and health of Zambians. However, there is neither a school of occupational therapy nor many occupational therapists working in Zambia. Using an example of a global research partnership between Canadian occupational therapy researchers and Zambian researchers, this paper examines the partnership using four criteria for global health research in order to derive lessons for future occupational therapy research partnerships. Implications for future occupational therapy research partnerships include the need for partners to combine their complementary skills and knowledge so that they may collaborate in mutually beneficial ways to address global health challenges and expand the reach of occupational therapy perspectives. Copyright © 2013 John Wiley & Sons, Ltd.
    Occupational Therapy International 03/2013; · 0.67 Impact Factor
  • International Journal of Qualitative Methods. 01/2013; 12:207-220.
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    Robyn Davies, Euson Yeung, Brenda Mori, Stephanie A Nixon
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    ABSTRACT: Background: The engagement of facilitators located remotely for small group learning has received little research attention. However, this approach could increase the pool of experts for small group learning, thus addressing challenges to sustainability faced by in-person models of small group facilitation. Aim: The objective of this study was to describe the experiences and perceptions of students regarding the use of remote facilitation for small group learning in a health education setting. Methods: This qualitative study involved three focus groups (n = 16) composed of students in the advanced neuromusculoskeletal teaching unit in the University of Toronto, Department of Physical Therapy. Focus groups were audio-taped and transcribed verbatim, and data were analyzed thematically. Results: Three main influences emerged related to the experiences of students regarding the use of remote facilitation for small group learning in a health education setting: technology (including audio and visual), facilitator (including quality of facilitation and facilitator expertise), and group dynamics (including ground rules, roles and responsibilities, and learning style). Each of these influences acted independently and interdependently to shape participants' perceptions. Conclusion: This study prompts a widening of the concept of distance learning to also include distance teaching, which may have wide applicability to health profession programs.
    Medical Teacher 10/2012; 34(10):e676-83. · 2.05 Impact Factor

Publication Stats

385 Citations
109.49 Total Impact Points


  • 2001–2014
    • University of Toronto
      • • Department of Physical Therapy
      • • Joint Centre for Bioethics
      Toronto, Ontario, Canada
  • 2007–2011
    • University of KwaZulu-Natal
      • Health Economics and HIV/AIDS Research Division (HEARD)
      Durban, KwaZulu-Natal, South Africa