A cross-cultural adaptation and validation of a scale to assess illness identity in adults living with a chronic illness in South Africa: a case of HIV.

The chronic illness trajectory and its outcomes are well explained by the concept of illness identity; the extent to which ill individuals have integrated their diagnosed chronic illness into their identity or sense of self. The capacity to measure illness identity in people living with HIV (PLHIV) is still relatively unexplored. However, this is potentially useful to help us understand how outcomes for PLHIV could be improved and sustained. This paper aims to explore the cross-cultural adaptation of a Belgian developed Illness Identity Questionnaire (IIQ) and validate the instrument using a sample of South African adults living with HIV. We followed a phased scale adaptation and validation process which included an investigation of conceptual, item, semantic and operational equivalence and also examined the psychometric properties of the IIQ. The concept of illness identity with its four factors; engulfment, rejection, acceptance and enrichment in PLHIV, was found to be relevant within this context. Five items from the original IIQ were excluded from the adapted IIQ due to either semantic insufficiency and/or inadequate measurement equivalence. The mode of administration of the IIQ was changed to accommodate current study participants. The original four factor 25-item model did not fit current data, however, a better contextualized, four-factor, 20-item model was identified and found valid in the current setting. The results showed adequate statistical fit; χ2/d.f. = 1.516, RMSEA = 0.076, SRMR = 0.0893, and CFI = 0.909. Convergent and discriminant validity were also tenable. The cross-cultural adaptation and validation of the IIQ was successful, resulting in the availability of an instrument capable of measuring illness identity in PLHIV in a high HIV prevalence and resource-constrained setting. This therefore addresses the paucity of information and expands on knowledge about illness identity.

Stay-at-Home: The Impact of the COVID-19 Lockdown on Household Functioning and ART Adherence for People Living with HIV in Three Sub-districts of Cape Town, South Africa.

In March 2020, the South African government imposed a lockdown to control COVID-19 transmission. Lockdown may affect people living with HIV's (PLWH) antiretroviral therapy (ART) adherence. Data from a cluster randomised control trial was collected from 152 PLWH in Cape Town sub-districts from October 2019-March 2020 when the lockdown halted collection. Subsequently, 83 PLWH were followed-up in June-July 2020. Random effects models were used to analyse: (1) changes between baseline and follow-up and (2) correlates of adherence during lockdown. At follow-up, there was an increase in the odds of being below the poverty line and the odds of experiencing violence decreased. Measures for well-being, household functioning, stigma and HIV competency improved. Violence, depression, food insecurity, and stigma were associated with poorer ART adherence; higher well-being scores were associated with better adherence. During lockdown, governments need to ensure financial support, access to (mental) health services, and services for those experiencing violence.Clinical Trial Number: Pan African Clinical Trial Registry, PACTR201906476052236. Registered on 24 June 2019.

RESUMEN: En marzo de 2020, el gobierno sudafricano impuso un confinamiento generalizado para controlar la transmisión del COVID-19. Estas medidas pueden afectar la adherencia a la terapia antirretroviral de las personas con VIH. A partir de un ensayo aleatorio grupal se recopilan datos de 152 personas con VIH en los sub-distritos de Ciudad del Cabo entre octubre de 2019 y marzo de 2020 cuando el confinamiento detuvo la recopilación. Posteriormente, se realizó un seguimiento de 83 pacientes entre junio y julio de 2020. Se utilizaron modelos de efectos aleatorios para analizar: 1) los cambios en las variables entre la línea de base y de seguimiento; 2) covariables de adhesión al tratamiento. En el seguimiento se observa que aumentaron las probabilidades de estar por debajo del umbral de pobreza y disminuyeron las probabilidades de sufrir violencia. Las medidas de bienestar, funcionamiento del hogar, estigma e idoneidad en materia de VIH mejoraron entre la línea base y el seguimiento. Por otro lado, la violencia, la depresión, la inseguridad alimentaria y el estigma se asocian a una menor adherencia al tratamiento antirretroviral, mientras la mejora del bienestar se asocia a una mayor adherencia al tratamiento. De tal manera, se observa que durante situaciones de emergencia que requieran de confinamientos es recomendable que los gobiernos garanticen apoyo financiero, atención a la salud física y mental de manera continua, así como servicios especializados hacia quienes sufren violencia.

Adapting to, integrating and self-managing HIV as a chronic illness: a scoping review protocol.

INTRODUCTION: The process of adapting to a life with a chronic illness, is a well-researched phenomenon for a number of common chronic illnesses. The construct, adaptation, embeds the notions of integration of the chronic illness into identity and self-management. Integration precedes self-management and is key to living positively with a chronic illness. Adaptation is an important concept in understanding trajectory and outcomes of living with a chronic illness. Applicability of these concepts to HIV as a chronic illness; when suppressive adherence has been achieved, however, is unknown. Specifically, the adaptation process to living with HIV as a chronic illness, the integration of HIV into identity and the resulting self-management behaviours by adults living with HIV are relatively unexplored. We describe a protocol for a scoping review of adaptation to living with HIV, we structure the enquiry around integration of HIV into identity and self-management and interrogate theories, models and frameworks that have been proposed and studied and we evaluate them for relevance and usefulness in the care and management of HIV. METHODS AND ANALYSIS: Methods proposed by the Johanna Briggs Institute will be followed. The protocol was drafted using the Preferred Reporting Items for Systematic Reviews and Meta-analysis extension for Scoping Reviews and was registered with the Open Science Framework. MEDLINE, SCOPUS, Cochrane Library, CINHAL and SocINDEX databases will be searched. A search in Social Science Research Network eLibrary and Open Access Theses and Dissertations will gather grey literature and reference lists of included sources will be screened. Study selection process will involve a title and abstract review and full text review, guided by clearly defined inclusion and exclusion criteria. ETHICS AND DISSEMINATION: Ethical approval is not required because this is a proposed review and collection of data on publicly available materials. The results will be published in a topic relevant journal and presented at related scientific events.

Households in HIV Care: Designing an Intervention to Stimulate HIV Competency in Households in South Africa.

Despite the Universal Test and Treat program and widespread antiretroviral treatment rollout, South Africa is still facing HIV prevention and treatment challenges, which are aggravated by human resource shortages in the healthcare sector. Individual- and community-level responses to these HIV-related challenges are increasingly being explored, for example, in community and home-based care. The role of the household as a crucial mediating social level has, however, largely been omitted. This paper outlines the design of an intervention to stimulate the involvement of the household in support for people living with HIV in South Africa. The 6SQuID model guided the intervention development process in four phases: (1) formative research, theory formulation, and a review of the existing literature, (2) integration of the results from the formative research into the "Positive Communication Process" (P2CP model) as a mechanism of change, (3) design of a community-health-worker-led intervention as the way to deliver the change mechanism, and (4) testing and revision of the developed intervention material-called Sinako-in a small-scale pilot study. The Sinako intervention anticipates that the future of chronic HIV care in resource-constrained settings will need to integrate the patient's household into the fight against HIV.

Social and Structural Determinants of Household Support for ART Adherence in Low- and Middle-Income Countries: A Systematic Review .

Adherence to HIV antiretroviral therapy (ART) is a crucial factor in health outcomes for people living with HIV (PLWH). Interventions to support ART adherence are increasingly focused on the household as a source of social support. This review aims to examine the social and structural determinants of support for ART adherence within households and families in low- and middle-income countries (LMICs). The review methodology followed the recommendations of the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines. Seven databases were searched for peer-reviewed literature. The terms searched thematically covered (1) ART adherence, (2) household and family and (3) support and care. Thirty-three studies conducted in 15 LMICs were selected and a mixed methods synthesis was undertaken. Social and structural determinants affected the type, quality and amount of support for PLWH of all ages, which affected PLWH's ART adherence. Gender norms affected the type of support that household members give to PLWH. Education moderated household support for ART adherence through literacy and language skills. Cultural context, religious beliefs, and social norms reinforced or undermined household support for ART adherence. Stigma affected disclosure, generated secrecy around giving medication and impeded access to support from the community. Supporting PLWH exacerbated economic hardship for household members. Health system dysfunction negatively impacted trust and communication between household members and health professionals. Intersecting social and structural determinants particularly affected the care given by household members who were older, female, with little education and low socioeconomic status. Household members were able to overcome some of these barriers when they received support themselves. Household interventions to support PLWH's ART adherence should take structural factors into account to have maximum impact.

Sinako, a study on HIV competent households in South Africa: a cluster-randomised controlled trial protocol.

BACKGROUND: With 7.7 million South Africans currently infected with human immunodeficiency virus (HIV) and 4.8 million currently receiving antiretroviral treatment (ART), the epidemic represents a considerable burden for the country's resource-limited health system. In response to the health and human resource shortages, task shifting to community health workers (CHWs) and empowering people living with HIV (PLWH) are integral parts of a sustainable ART strategy. Despite the success of the ART programme, South Africa still faces both prevention and treatment challenges. To tackle these challenges, future endeavours need to focus on the role played by the households of PLWH in mediating between the community and PLWH themselves. Building health-enabling "HIV competent" households with the capacity to actively stimulate lifestyles that foster health, offers a potential strategy to tackle South Africa's HIV-related challenges. The aim of the "Sinako: Households and HIV" study is to investigate to what extent and how an intervention can increase HIV competence in PLWH and their households, and subsequently optimise the impact of CHW support on individual ART outcomes. METHODS: The "Sinako" study is a cluster-randomised controlled trial with two arms. In the control arm, CHWs offer a standard package of support to PLWH during home visits, focused on the individual. The intervention arm includes both a focus on the individual and the household to enable the patient to self-manage their treatment within an HIV competent household. A longitudinal mixed methods design is adopted to analyse the data. For the quantitative data analysis, methods including latent cross-lagged modelling, multilevel modelling and logistic regression will be used. To assess the acceptability and feasibility of the intervention and to construct a comprehensive picture of the mechanisms underlying the impact on the household and the PLWH, qualitative data (in-depth interviews and focus group discussions) will be collected and analysed. DISCUSSION: Stimulating HIV competence in households could be a feasible and sustainable strategy to optimise the outcomes of CHW interventions and thus be important for HIV treatment interventions in resource-limited settings. TRIAL REGISTRATION: Pan African Clinical Trial Registry, PACTR201906476052236. Registered on 24 June 2019.

Household-focused interventions to enhance the treatment and management of HIV in low- and middle-income countries: a scoping review.

BACKGROUND: HIV remains a major public health challenge in many low- and middle-income countries (LMICs). The initiation of a greater number of people living with HIV (PLHIV) onto antiretroviral therapy (ART) following the World Health Organization's 'universal test and treat' recommendation has the potential to overstretch already challenged health systems in LMICs. While various mainstream and community-based care models have been implemented to improve the treatment outcomes of PLHIV, little effort has been made to harness the potential of the families or households of PLHIV to enhance their treatment outcomes. To this end, we sought to explore the characteristics and effectiveness of household-focused interventions in LMICs on the management of HIV as measured by levels of adherence, viral suppression and different dimensions of HIV competence. Additionally, we sought to explore the mechanisms of change to explain how the interventions achieved the expected outcomes. METHODS: We systematically reviewed the literature published from 2003 to 2018, obtained from six electronic databases. We thematically analysed the 11 selected articles guided by the population, intervention, comparison and outcome (PICO) framework. Following the generative causality logic, whereby mechanisms are postulated to mediate an intervention and the outcomes, we applied a mechanism-based inferential reasoning, retroduction, to identify the mechanisms underlying the interventions to understand how these interventions are expected to work. RESULTS: The identified HIV-related interventions with a household focus were multi-component and multi-dimensional, incorporating aspects of information sharing on HIV; improving communication; stimulating social support and promoting mental health. Most of the interventions sought to empower and stimulate self-efficacy while strengthening the perceived social support of the PLHIV. Studies reported a significant positive impact on improving various aspects of HIV competent household - positive effects on HIV knowledge, communication between household members, and improved mental health outcomes of youths living in HIV-affected households. CONCLUSION: By aiming to strengthen the perceived social support and self-efficacy of PLHIV, household-focused HIV interventions can address various aspects of household HIV competency. Nevertheless, the role of the household as an enabling resource to improve the outcomes of PLHIV remains largely untapped by public HIV programmes; more research on improving household HIV competency is therefore required. TRIAL REGISTRATION: PROSPERO registration: CRD42018094383.