Children living with HIV-related disabilities in a resource-poor community in South Africa: caregiver perceptions of caring and rehabilitation.

The care offered to children living with HIV (CLHIV) experiencing HIV-related disability is often challenged by caregiver illness, poverty and poor support structures in and around communities. Since caregiver needs directly influences the care offered to CLHIV this paper aimed to explore the experiences of the caregivers of CLHIV in order to inform an appropriate rehabilitation model in South Africa. A qualitative enquiry using in-depth interviews with 14 caregivers (one male and thirteen females) of CLHIV experiencing disability in a peri-urban setting was conducted. Data were analysed using thematic analysis. Four themes emerged from the interviews: understanding of HIV-related disability and rehabilitation, challengers to care and well-being, enablers to care; and perceived needs of caregivers. The study revealed that caregiver burden is influenced by the availability of resources and social support services. Financial constraints, poor access to rehabilitation and reduced support networks challenged the care offered to CLHIV. The perceived needs of the caregivers in this study included appeals for improved social security, housing, accessible rehabilitation and education. Changes in government policy guiding social support, employment, education and rehabilitation interventions are needed to improve the availability of resources, education, health and well-being of CLHIV and their caregiver's in South Africa.

Evaluation of a Community-Based Self-Management Program to Increase Access to Rehabilitation for People Living with HIV.

We qualitatively evaluated a novel educational program to help people living with HIV understand the role of rehabilitation, facilitate access to rehabilitation, and promote self-management of chronic disease in Canada. The program incorporated components of self-efficacy, client-centered care, peer education, and problem-based learning. Delivery of the community-engaged program was viewed as feasible and acceptable; however, a flexible delivery model was deemed important. Perceived learning was related to rehabilitation, advocacy, and taking responsibility for one's health. A co-leader model and access to online resources were strengths. Future work should assess the ability to apply advocacy knowledge and skills to access rehabilitation services.

Cognitive and physical development in HIV-positive children in South Africa and Malawi: A community-based follow-up comparison study.

BACKGROUND: Child development is negatively impacted by HIV with children that are infected and affected by HIV performing worse than their peers in cognitive assessments. METHODS: We conducted a descriptive follow-up comparison study (n=989) in South Africa and Malawi. We tracked child development in 135 HIV-positive children compared to 854 uninfected children aged 4-13 years attending community-based organizations at baseline and again 12-15 months later. RESULTS: Children with HIV were more often stunted (58.8% vs. 27.4%) and underweight (18.7% vs. 7.1%). They also had significantly poorer general physical functioning (M=93.37 vs. M=97.00). HIV-positive children scored significantly lower on digit span and the draw-a-person task. CONCLUSIONS: These data clearly show that HIV infection poses a serious risk for child development and that there is a need for scaled up interventions. Community-based services may be ideally placed to accommodate such provision and deliver urgently needed support to these children.

Knowledge of HIV-related disabilities and challenges in accessing care: Qualitative research from Zimbabwe.

INTRODUCTION: While the rapid expansion in antiretroviral therapy access in low and middle income countries has resulted in dramatic declines in mortality rates, many people living with HIV face new or worsening experiences of disability. As nearly 1 in 20 adults are living with HIV in sub-Saharan Africa-many of whom are likely to develop disabling sequelae from long-term infection, co-morbidities and side effects of their treatment-understanding the availability and accessibility of services to address HIV-related disabilities is of vital importance. The aim of this study thus is to explore knowledge of HIV-related disabilities amongst stakeholders working in the fields of HIV and disability and factors impacting uptake and provision of interventions for preventing, treating or managing HIV-related disabilities. METHODS: In-depth, semi-structured interviews were conducted with ten stakeholders based in Harare, Zimbabwe, who were working in the fields of either disability or HIV. Stakeholders were identified through a priori stakeholder analysis. Thematic Analysis, complemented by constant comparison as described in Grounded Theory, was used to analyse findings. RESULTS: All key informants reported some level of knowledge of HIV-related disability, mostly from observations made in their line of work. However, they reported no interventions or policies were in place specifically to address HIV-related disability. While referrals between HIV and rehabilitation providers were not uncommon, no formal mechanisms had been established for collaborating on prevention, identification and management. Additional barriers to accessing and providing services to address HIV-related disabilities included: the availability of resources, including trained professionals, supplies and equipment in both the HIV and rehabilitation sectors; lack of disability-inclusive adaptations, particularly in HIV services; heavy centralization of available services in urban areas, without accessible, affordable transportation links; and attitudes and understanding among service providers and people living with HIV-related disabilities. CONCLUSIONS: As people living with HIV are surviving longer, HIV-related disabilities will become a major source of disability globally, particularly in sub-Saharan Africa where infection is endemic. Preventing, treating and managing HIV-related disabilities must become a key component of both HIV response efforts and rehabilitation strategies.

Needs among persons with human immunodeficiency virus and intellectual and developmental disabilities in community mental health care: a cross-sectional study.

BACKGROUND: The experience of having human immunodeficiency virus (HIV) is often associated with co-occurring mental health issues. Community mental health services are an important source of support for persons with HIV living in the community. Persons with intellectual disability (ID) are vulnerable to HIV and may have unique support needs beyond those without ID receiving community care. This study compared support needs of men with HIV in community mental health programmes, with and without ID. METHODS: The sample was composed of 138 HIV-positive men with and without ID receiving mental health case management from one community organisation in Ontario, Canada, on 31 March 2013. Staff-rated needs across 16 domains grouped into four clusters were measured using the Camberwell Assessment of Need: Basic needs (accommodation, food, public transportation, money and benefits); self-care/functional needs (looking after the home, self-care and daytime activities); health/safety needs (physical health, psychological distress, psychotic symptoms, safety to self and safety to others); and social needs (company, intimate relationships and sexual expression). Adjusted logistic regression models examined the association between ID and each need domain. RESULTS: One-quarter of the sample (n = 34/138, 24.6%) had co-occurring ID. Those with ID were more likely to have needs in the basic cluster [odds ratios: food 4.05 (1.14, 14.44), P:0.031; benefits 2.58 (1.05, 6.32), P:0.038)] and self-care/functional cluster [looking after the home (2.75 (1.17, 6.49), P:0.021); self-care (2.72 (1.18, 6.27), P:0.019)], but were less likely to have need for sexual expression: 0.35 (0.14,0.90), P:0.030) (social cluster). There were no differences in the domains in the health/safety cluster. CONCLUSION: Despite elevated cognitive needs in the basic and self-care/functional clusters for the ID group, limited other differences suggest that with moderate additional targeting, community mental health programmes for persons with HIV may be appropriate for men with ID.

Validating the client-focused considering work model for people living with HIV and quantifying phases of change of commitment to work.

The primary purpose of this study was to validate the client-focused considering work model and to gain a better understanding of the nature of the relationship among the four domains purported to influence the considering work process (medical, psychosocial, financial/legal and vocational). A second goal of the study was to quantify the relationship between these four domains and the phases of considering work (contemplation, preparation, action, resolution). Structural equation modeling was used to analyze data of 1702 diverse (43% Black, 31% White, 19% Latino 7% other) unemployed respondents who were recruited from AIDS Service Organizations (ASO) and networks across the United States to complete the National Working Positive Vocational Development and Employment Needs Survey (NWPC-VDENS). Overall the results of this study supported the validity of the client-focused considering work model and helped to provide a deeper level of understanding of the relationship among the domains of influence and their contribution to the level of commitment to the considering work process. Implications for Rehabilitation This model enables rehabilitation professionals to consider interventions for clients at different phases (contemplation, preparation, action) of considering work. Rehabilitation professionals are encouraged to provide prevocational services to engage people with HIV in the considering work process. When assisting PLWH within the considering work process, it is important to assess not only medical status but also psychosocial, financial and vocational concerns.

Acceptability and use of a virtual support group for HIV-positive youth in Khayelitsha, Cape Town using the MXit social networking platform.

INTRODUCTION: Médecins Sans Frontières supports human immunodeficiency virus (HIV)-infected youth, aged 12-25 years, at a clinic in Khayelitsha, South Africa. Patients are enrolled in youth clubs, and provided with a virtual chat room, using the cell-phone-based social networking platform, MXit, to support members between monthly/bimonthly club meetings. The acceptability and uptake of MXit was assessed. METHODS: MXit was facilitated by lay counsellors, was password protected, and participants could enter and leave at will. Club members were asked to complete self-administered questionnaires and participate in two focus-group discussions. RESULTS AND DISCUSSION: In total, 60 club members completed the questionnaire, and 12 participated in the focus groups. Fifty-eight percentage were aged 23-25 years, 63% were female and 83% had a cell phone. Sixty percentage had used MXit before, with 38% having used it in the past month. Sixty-five percentage were aware of the chat-room and 39% knew how to access it. Thirty-four percentage used the chat-room at least once, 20% had visited the chat-room in the past month, and 29% had used MXit to have private conversations with other club members. Fifty-seven percentage used the chat-room to get advice, and 84% of all respondents felt that offering a service outside the youth club meetings was important and would like to see one to continue. The cost of using social media platforms was an issue with some, as well as the need for anonymity. Preference for other platforms, logistical obstacles, or loss of interest contributed to non-use. CONCLUSIONS: Reported usage of the MXit chat-room was low, but participants indicated acceptance of the programme and their desire to interact with their peers through social media. Suggestions to improve the platform included accessible chat histories, using more popular platforms such as Facebook or WhatsApp, and to have topical discussions where pertinent information for youth is provided.

A rehabilitation model as key to comprehensive care in the era of HIV as a chronic disease in South Africa.

In the era of widespread access to antiretroviral therapy, people living with HIV survive; however, this comes with new experiences of comorbidities and HIV-related disability posing new challenges to rehabilitation professionals and an already fragile health system in Southern Africa. Public health approaches to HIV need to include not only prevention, treatment and support but also rehabilitation. While some well-resourced countries have developed rehabilitation approaches for HIV, resource-poor settings of Southern Africa lack a model of care that includes rehabilitation approaches providing accessible and comprehensive care for people living with HIV. In this study, a learning in action approach was used to conceptualize a comprehensive model of care that addresses HIV-related disability and a feasible rehabilitation framework for resource-poor settings. The study used qualitative methods in the form of a focus group discussion with thirty participants including people living with HIV, the multidisciplinary healthcare team and community outreach partners at a semi-rural health facility in South Africa. The discussion focused on barriers and enablers of access to rehabilitation. Participants identified barriers at various levels, including transport, physical access, financial constraints and poor multi-stakeholder team interaction. The results of the group discussions informed the design of an inclusive model of HIV care. This model was further informed by established integrated rehabilitation models. Participants emphasized that objectives need to respond to policy, improve access to patient-centered care and maintain a multidisciplinary team approach. They proposed that guiding principles should include efficient communication, collaboration of all stakeholders and leadership in teams to enable staff to implement the model. Training of professional staff and lay personnel within task-shifting approaches was seen as an essential enabler to implementation. The health facility as well as outreach services such as intermediate clinics, home-based care, outreach and community-based rehabilitation was identified as important structures for potential rehabilitation interventions.

Collaborative priority setting for human immunodeficiency virus rehabilitation research: A case report.

BACKGROUND: The inclusion of community members and other stakeholders in the establishment of research priorities is vital to ensuring that priorities are congruent with the main concerns of affected communities. PURPOSE: The purpose of this project was to identify priority research topics for addressing the activity and community participation needs of people living with human immunodeficiency virus (HIV) and meaningfully involve multiple stakeholders in the development of those priorities. METHOD: We invited people living with HIV, researchers, service providers, and policy makers to a 2-day forum. Twenty-six people participated in developing priorities through the application of two methodologies, the World Café and Dotmocracy. We evaluated the forum though immediate dialogue and a postproject survey. FINDINGS: Participants identified 10 high-priority research topics. Evaluation findings highlighted positive substantive, instrumental, personal, and normative outcomes of stakeholder involvement. IMPLICATIONS: The identified priority topics can guide future occupational therapy practice and research in this emerging area.

HealthCall for the smartphone: technology enhancement of brief intervention in HIV alcohol dependent patients.

BACKGROUND: Heavy drinking jeopardizes the health of patients in HIV primary care. In alcohol dependent patients in HIV primary care, a technological enhancement of brief intervention, HealthCall administered via interactive voice response (HealthCall-IVR) was effective at reducing heavy drinking. The smartphone offered a technology platform to improve HealthCall. METHODS: Working with input from patients, technology experts, and HIV clinic personnel, we further developed HealthCall, harnessing smartphone technological capacities (HealthCall-S). In a pilot study, we compared rates of HealthCall-S daily use and drinking outcomes in 41 alcohol dependent HIV-infected patients with the 43 alcohol dependent HIV-infected patients who used HealthCall-IVR in our previous efficacy study. Procedures, clinic, personnel, and measures were largely the same in the two studies, and the two groups of patients were demographically similar (~90% minority). RESULTS: Pilot patients used HealthCall-S a median of 85.0% of the 60 days of treatment, significantly greater than the corresponding rate (63.8%) among comparison patients using HealthCall-IVR (p < .001). Mean end-of-treatment drinks per drinking day was similar in the two groups. Patients were highly satisfied with HealthCall-S (i.e., 92% reported that they liked using HealthCall-S). CONCLUSIONS: Among alcohol dependent patients in HIV primary care, HealthCall delivered via smartphone is feasible, obtains better patient engagement than HealthCall-IVR, and is associated with decreased drinking. In HIV primary care settings, HealthCall-S may offer a way to improve drinking outcomes after brief intervention by extending patient engagement with little additional demands on staff time.

Examining the role of vocational rehabilitation on access to care and public health outcomes for people living with HIV/AIDS.

PURPOSE: The purpose of this study is to examine the role of vocational rehabilitation services in contributing to the goals of the National HIV/AIDS strategy. Three key research questions are addressed: (a) What is the relationship among factors associated with the use of vocational rehabilitation services for people living with HIV/AIDS? (b) Are the factors associated with use of vocational rehabilitation also associated with access to health care, supplemental employment services and reduced risk of HIV transmission? and (c) What unique role does use of vocational rehabilitation services play in access to health care and HIV prevention? METHOD: Survey research methods were used to collect data from a broad sample of volunteer respondents who represented diverse racial (37% Black, 37% White, 18% Latino, 7% other), gender (65% male, 34% female, 1% transgender) and sexual orientation (48% heterosexual, 44% gay, 8% bisexual) backgrounds. RESULTS: The fit of the final structural equation model was good (root mean square error of approximation = 0.055), with 90% upper bound of 0.058, Comparative Fit Index = 0.953, TLI = 0.945). Standardized effects with bootstrap confidence intervals are reported. CONCLUSIONS: Overall, the findings support the hypothesis that vocational rehabilitation services can play an important role in health and prevention strategies outlined in the National HIV/AIDS strategy.

Helping people with HIV/AIDS return to work: a randomized clinical trial.

OBJECTIVE: New treatments introduced in the mid-1990s led many people with HIV/AIDS who previously had been disabled by their disease to contemplate workforce reentry; many remain unemployed, and little is known concerning interventions that might help them return to work. We report the results of a randomized clinical trial of an intervention designed to help people with HIV/AIDS reenter the workforce. DESIGN: We tested a mixed (group-individual) modality intervention that incorporated elements of Motivational Interviewing (Miller & Rollnick, 2002), skills building from Dialectical Behavior Therapy (Linehan, 1993), and job-related skills (Price & Vinokur, 1995). A total of 174 individuals participated in either the intervention or in standard of care and were followed for 24 months. RESULTS: Compared with individuals referred for standard of care, participants in the intervention engaged in more workforce-reentry activities over time and, once employed, were more likely to remain employed. Dose-response analyses revealed that among intervention participants, participants who attended more than 1 individual session engaged in more workforce-reentry activities than individuals who attended 1 or fewer individual sessions, whereas frequency of group session participation did not effect a difference between participants who attended more than 6 group sessions and participants who attended 6 or fewer group sessions. CONCLUSION: Theoretically based workforce-reentry assistance programs can assist disabled people with HIV/AIDS in their return-to-work efforts.

Integrating mental health into general health care: lessons from HIV.

Mental disorders are highly prevalent across all health settings. Where they are co-morbid with other chronic physical disorders, a complex bidirectional relationship exists between them. While mental disorders may result in an increase in adverse healthrelated outcomes, they are amenable to cost-effective treatments. In resource-limited settings, many barriers to the detection and treatment of mental disorders exist. One approach to the effective targeting of the available resources is to utilize a "risk-flag" approach, wherein individuals at-risk of treatment failure are identified and routed into more intensive mental health screening and intervention. This paper discusses how lessons from HIV services may inform how to improve mental health care and integration in HIV settings, as well as in other chronic diseases.

Disability rights in the context of HIV and AIDS: a critical review of nineteen Eastern and Southern Africa (ESA) countries.

PURPOSE: Many Eastern and Southern African (ESA) states are obliged to review and amend their legal frameworks with regards to disability since signing and ratifying the UN Convention on the Rights of Persons with Disabilities (CRPD). The HIV epidemic is one of the main health concerns in the region and is becoming increasingly associated with causing disabilities. In addition, people with disabilities are particularly at risk of exposure to HIV. Despite this, HIV programming has not yet included the interrelationship of disability and HIV. The principles within the CRPD may create much-needed international pressure and so provide a platform for the integration and inclusion of disability into HIV policies and programs. METHOD: This paper is based on a review of the legal framework in relation to HIV and disability in 19 ESA countries. It identifies 12 key articles of the Convention, which are particularly relevant to the interrelationship of HIV and disability. The paper assesses how these are integrated in the region's disability or HIV legal frameworks and identifies the main gaps within these legal systems. RESULTS: While many country's constitutions, disability and HIV laws protect certain key rights, such as the rights to equality and nondiscrimination, employment and health, there are clear gaps in the legal responses to disability and HIV. In particular, legal frameworks fail to provide adequately for accessibility, mobility and access to justice and protection from violence for people with disabilities. This results in limited protection for people with disabilities from HIV exposure and access to services to address HIV-related health and welfare needs. CONCLUSIONS: The paper identifies the gaps and makes recommendations for implementing steps toward the integration of disability into HIV-related laws, policies and programs.

Inequalities in determinants of health among Aboriginal and Caucasian persons living with HIV/AIDS in Ontario: results from the Positive Spaces, Healthy Places Study.

OBJECTIVES: Aboriginal Canadians (i.e., First Nations, Inuit and Métis) are disproportionately affected by HIV/AIDS, and experience greater social and economic marginalization and poorer housing conditions. This study sought to understand the differences in the determinants of health and housing-related characteristics between samples of Aboriginal and Caucasian adults living with HIV/AIDS in Ontario. METHODS: We analyzed baseline demographic, socio-economic, health, and housing-related data from 521 individuals (79 Aboriginal and 442 Caucasian) living with HIV/AIDS and enrolled in the Positive Spaces, Healthy Places study. We compared the characteristics of Aboriginal and Caucasian participants to identify determinants of health and housing-related characteristics independently associated with Aboriginal ethnicity. RESULTS: Compared to Caucausian participants living with HIV, Aboriginal participants were more likely to be younger, female or transgender women, less educated, unemployed, and homeless or unstably housed. They were also more likely to have low incomes and to have experienced housing-related discrimination. In a multivariate model, gender, income, and experiences of homelessness were independently associated with Aboriginal ethnicity. CONCLUSION: Aboriginal individuals living with HIV/AIDS in our sample are coping with significantly worse social and economic conditions and are more likely to experience challenging housing situations than a comparison group of Caucasian individuals living with HIV/AIDS. To develop effective care, treatment and support strategies for Aboriginal peoples with HIV, it is critical to address and improve their socio-economic and housing conditions.

Inclusion of disability within national strategic responses to HIV and AIDS in Eastern and Southern Africa.

PURPOSE: National strategic plans (NSPs) provide a framework for a comprehensive response to human immunodeficiency virus (HIV) including strategies such as prevention, treatment, care and support for all affected. Research indicates limited recognition of the interrelationship between disability and HIV in the Eastern and Southern Africa (ESA). This paper analyses the extent to which NSPs in ESA address disability, and identify good practice. METHOD: Using a tool based on relevant rights in the UN Convention on the Rights of Persons with Disabilities and the UNAIDS International Guidelines on HIV and Human Rights, a review of 18 NSPs in ESA was conducted to determine the extent to which they included disability. RESULTS: Although many NSPs fail to integrate disability issues, there are examples of good practice from which much can be learned, particularly with respect to disability and HIV-prevention efforts. There is limited provision for treatment, care and support for disability in the context of HIV and AIDS. CONCLUSIONS: Many NSPs in ESA are due for review, providing ample opportunities for the development of disability-inclusive responses. Future NSPs need to integrate the needs of people with disabilities within structures, programmes and monitoring and evaluation, and make provision for increased rehabilitation needs caused by HIV. A rights-based approach and specific financial allocation of resources are crucial for this process.

Voices of HIV&AIDS-affected educators: how they are psychosocially affected and how REds enabled their resilience.

The aim of this article is to hear the voices of HIV- and AIDS-affected educators regarding their experiences of the psychosocial effect that the HIV and AIDS pandemic has on them as well as to voice their experiences of how Resilient Educators (REds), a support programme to enable educators affected by HIV and AIDS towards resilience, enabled them. A qualitative study was undertaken with 100 affected educators from different provinces in South Africa. Open-ended questionnaires were used to collect data prior to and after exposure to REds. The results suggested that the pandemic had a devastating effect not only at a professional level, but also at all the personal levels of educators' well-being, namely, at an emotional, spiritual, physical and social level. However, the results also indicated that REds empowered them to cope more resiliently with the overwhelming personal and professional impacts of living and teaching in an HIV- and AIDS-altered milieu. It thus seems as if REds, as an empowering programme, has the potential to become a valuable protective resource in an educational context that is HIV-lacerated.

Pairing HIV-positive prisoners with volunteer life coaches to maintain health-promoting behavior upon release: a mixed-methods needs analysis and pilot study.

Drawing on individuals who volunteer in US prisons to mentor HIV-infected inmates returning to the community may promote successful transitions. Evaluations published in the scientific literature of such community linkage programs are scant. Our quantitative and qualitative methods needs analysis and pilot study entailed interviewing convenience samples of 24 HIV-positive persons recently released from Georgia correctional facilities and 12 potential volunteer mentors. Both releasees and potential mentors were open to the establishment of a mentoring program. Releasees wanted nonjudgmental mentors. Releasees and volunteers had statistically significant differences in marital status, education, current employment, and possession of a driver's license but not in degree of religious involvement and attitudes toward condom use. A volunteer-staffed program, perhaps more aptly named "life coaching" than mentoring, to help HIV-infected persons to transition from prison to the community may be feasible. Success will require adequately trained volunteers and a straightforward program.