Healthcare workers' informal uses of mobile phones and other mobile devices to support their work: a qualitative evidence synthesis.

BACKGROUND: Healthcare workers sometimes develop their own informal solutions to deliver services. One such solution is to use their personal mobile phones or other mobile devices in ways that are unregulated by their workplace. This can help them carry out their work when their workplace lacks functional formal communication and information systems, but it can also lead to new challenges. OBJECTIVES: To explore the views, experiences, and practices of healthcare workers, managers and other professionals working in healthcare services regarding their informal, innovative uses of mobile devices to support their work. SEARCH METHODS: We searched MEDLINE, Embase, CINAHL and Scopus on 11 August 2022 for studies published since 2008 in any language. We carried out citation searches and contacted study authors to clarify published information and seek unpublished data. SELECTION CRITERIA: We included qualitative studies and mixed-methods studies with a qualitative component. We included studies that explored healthcare workers' views, experiences, and practices regarding mobile phones and other mobile devices, and that included data about healthcare workers' informal use of these devices for work purposes. DATA COLLECTION AND ANALYSIS: We extracted data using an extraction form designed for this synthesis, assessed methodological limitations using predefined criteria, and used a thematic synthesis approach to synthesise the data. We used the 'street-level bureaucrat' concept to apply a conceptual lens to our findings and prepare a line of argument that links these findings. We used the GRADE-CERQual approach to assess our confidence in the review findings and the line-of-argument statements. We collaborated with relevant stakeholders when defining the review scope, interpreting the findings, and developing implications for practice. MAIN RESULTS: We included 30 studies in the review, published between 2013 and 2022. The studies were from high-, middle- and low-income countries and covered a range of healthcare settings and healthcare worker cadres. Most described mobile phone use as opposed to other mobile devices, such as tablets. We have moderate to high confidence in the statements in the following line of argument. The healthcare workers in this review, like other 'street-level bureaucrats', face a gap between what is expected of them and the resources available to them. To plug this gap, healthcare workers develop their own strategies, including using their own mobile phones, data and airtime. They also use other personal resources, including their personal time when taking and making calls outside working hours, and their personal networks when contacting others for help and advice. In some settings, healthcare workers' personal phone use, although unregulated, has become a normal part of many work processes. Some healthcare workers therefore experience pressure or expectations from colleagues and managers to use their personal phones. Some also feel driven to use their phones at work and at home because of feelings of obligation towards their patients and colleagues. At best, healthcare workers' use of their personal phones, time and networks helps humanise healthcare. It allows healthcare workers to be more flexible, efficient and responsive to the needs of the patient. It can give patients access to individual healthcare workers rather than generic systems and can help patients keep their sensitive information out of the formal system. It also allows healthcare workers to communicate with each other in more personalised, socially appropriate ways than formal systems allow. All of this can strengthen healthcare workers' relationships with community members and colleagues. However, these informal approaches can also replicate existing social hierarchies and deepen existing inequities among healthcare workers. Personal phone use costs healthcare workers money. This is a particular problem for lower-level healthcare workers and healthcare workers in low-income settings as they are likely to be paid less and may have less access to work phones or compensation. Out-of-hours use may also be more of a burden for lower-level healthcare workers, as they may find it harder to ignore calls when they are at home. Healthcare workers with poor access to electricity and the internet are less able to use informal mobile phone solutions, while healthcare workers who lack skills and training in how to appraise unendorsed online information are likely to struggle to identify trustworthy information. Informal digital channels can help healthcare workers expand their networks. But healthcare workers who rely on personal networks to seek help and advice are at a disadvantage if these networks are weak. Healthcare workers' use of their personal resources can also lead to problems for patients and can benefit some patients more than others. For instance, when healthcare workers store and share patient information on their personal phones, the confidentiality of this information may be broken. In addition, healthcare workers may decide to use their personal resources on some types of patients, but not others. Healthcare workers sometimes describe using their personal phones and their personal time and networks to help patients and clients whom they assess as being particularly in need. These decisions are likely to reflect their own values and ideas, for instance about social equity and patient 'worthiness'. But these may not necessarily reflect the goals, ideals and regulations of the formal healthcare system. Finally, informal mobile phone use plugs gaps in the system but can also weaken the system. The storing and sharing of information on personal phones and through informal channels can represent a 'shadow IT' (information technology) system where information about patient flow, logistics, etc., is not recorded in the formal system. Healthcare workers may also be more distracted at work, for instance, by calls from colleagues and family members or by social media use. Such challenges may be particularly difficult for weak healthcare systems. AUTHORS' CONCLUSIONS: By finding their own informal solutions to workplace challenges, healthcare workers can be more efficient and more responsive to the needs of patients, colleagues and themselves. But these solutions also have several drawbacks. Efforts to strengthen formal health systems should consider how to retain the benefits of informal solutions and reduce their negative effects.

COMMUNICATION IN THE CONTEXT OF FAMILY CAREGIVING: AN EXPLORATORY STUDY OF UGANDAN CHILDREN ON ANTIRETROVIRAL THERAPY.

It is important to consider the complexities of family dynamics when deciding when and how to communicate with HIV-infected children about their illness and treatment. Previous research has focused on providers' and caregivers' perspectives on whether, when and how to disclose HIV/AIDS diagnosis and treatment to HIV-infected children. From the perspective of HIV-infected children, communication does not mean just giving information about illness and treatment, but also encompasses emotional and material care. This paper places communication within the broader framework of caregiving in family situations. This exploratory study was conducted in Jinja district, Uganda, between November 2011 and December 2012. Through participant observation and in-depth interviews, communication by, and with, HIV-infected children in the context of family situations was explored from the perspectives of 29 HIV-infected children aged 8-17 years on antiretroviral therapy (ART) using content thematic analysis. Children's communication with caregivers about their illness and treatment varied depending on whom they were living with and the nature of caregiving. Although a mother's care was considered best, children described others who cared 'like a mother'. For some, caregiving was distributed among several relatives and non-relatives, while others felt they had hardly anyone to care for them. Caregiving from the children's perspective involved emotional support, expressed verbally and explicitly in messages of concern, encouragement conveyed in reminders to take medicines, attention when sick and confidential conversations about the challenges of having HIV and taking ART. Caregiving was also communicated implicitly in acts of provision of food/drinks to take with medicines, counting pills to confirm they had taken the medicines and accompanying children to treatment centres. Children's communication about their health and medicines and the care they received was to a large extent shaped by the nature of their relatedness to their caregivers, the extent to which caregiving was dispersed among several people and who else in the household was infected with HIV and on medication.

The role of community engagement in promoting research participants' understanding of pharmacogenomic research results: Perspectives of stakeholders involved in HIV/AIDS research and treatment.

Community engagement (CE) is praised to be a powerful vehicle in empowering communities with knowledge and skills to make informed decisions for better health care. Several CE approaches have been proposed to improve participants' and research communities' understanding of genomic research including pharmacogenomic information and results. However, there is limited literature on how these approaches can be used to communicate findings of pharmacogenomic research to communities of people living with HIV. This study explored stakeholders' perspectives on the role of community engagement in promoting understanding of pharmacogenomic research results among people living with HIV. We adopted a qualitative approach that involved 54 stakeholders between September 2021 and February 2022. We held five focus group discussions among 30 community representatives from five research institutions, 12 key informant interviews among researchers, and 12 in-depth interviews among ethics committee members. A thematic approach was used to analyze the results. Five themes merged from this data and these included (i) benefits of engaging communities prior to returning individual pharmacogenomic research results to participants. (ii) Obtaining community consensus on the kinds of pharmacogenomic results to be returned. (iii) Opinions on how pharmacogenomic research information and results should be communicated at community and individual levels. (iv) Perceived roles of community stakeholders in promoting participants' understanding and utilization of pharmacogenomic research results. (v) Perceived challenges of engaging communities when returning individual results to research participants. Stakeholders opined that CE facilitates co-learning between researchers and research communities. Researchers can adapt existing CE approaches that are culturally acceptable for meaningful engagement with minimal ethical and social risks when communicating pharmacogenomic research results. CE approaches can facilitate understanding of pharmacogenomic research and findings among research participants and communities. Therefore, if creatively adapted, existing and new CE approaches can enable researchers to communicate simple and understandable results of pharmacogenomic research.

Client-provider interactions in provider-initiated and voluntary HIV counseling and testing services in Uganda.

BACKGROUND: Provider-initiated HIV testing and counselling (PITC) is based on information-giving while voluntary counselling and testing (VCT) includes individualised client-centered counseling. It is not known if the provider-client experiences, perceptions and client satisfaction with the information provided differs in the two approaches. METHODS: In 2008, we conducted structured interviews with 627 individuals in Uganda; 301 tested through PITC and 326 through voluntary counselling and testing (VCT). We compared client experiences and perceptions based on the essential elements of consent, confidentiality, counseling, and referral for follow-up care. We conducted multivariate analysis for predictors of reporting information or counselling as sufficient. RESULTS: In VCT, 96.6% (282) said they were asked for consent compared to 91.3% (198) in PITC (P = 0.01). About the information provided, 92.0% (286) in VCT found it sufficient compared to 78.7% (221) in PITC (P = <0.01). In VCT 79.9% (246) thought their results were kept confidential compared to 71.7% (200) in PITC (P = 0.02). Eighty percent (64) of HIV infected VCT clients said they were referred for follow-up care versus 87.3% (48) in PITC (p = 0.2). Predictors of perceived adequacy of information in PITC included an opportunity to ask questions (adj.RR 1.76, CI 1.41, 2.18) and expecting the test results received (adj.RR 1.18, CI 1.06, 1.33). For VCT significant factors included being given an opportunity to ask questions (adj.RR 1.62, CI 1.00, 2.60) and 3+ prior times tested, (adj.RR 1.05, CI 1.00, 1.09). CONCLUSIONS: This study demonstrates good practices in the essential elements of HIV testing for both VCT and PITC. However, further quality enhancement is required in both testing approaches in relation to referral to HIV care post-test, client confidence in relation to confidentiality, and providing an opportunity to ask questions to address client-specific information needs.

Psychosocial health in adolescent unmarried motherhood in rural Uganda: Implications for community-based collaborative mental health education, and empowerment strategies in the prevention of depression and suicide.

Teenage pregnancy rates in Uganda are among the highest in sub-Saharan Africa. Child marriage is often the result of unmarried teenage pregnancy and is recognised by Uganda's government as a form of sexual violence and an outcome of inequality. However, unmarried motherhood incurs stigma and shame within traditionally living rural communities. Using co-produced Open Space and ethnographic methods, we examined the psychosocial impact of unmarried motherhood on girls and their communities, and explored problem-solving with key local stakeholders. Findings indicate that girls experience extreme stress, social exclusion and rejection by their families, and experience bereavement from school expulsion and the loss of their career aspirations. Depressive symptoms and suicidal behaviour are reportedly not uncommon among this population group. Community and family efforts to promote marriage for these mothers to avoid social stigma increased the mothers' feelings of depression, whereas mothers who became independent appeared to fare better psychologically. Community members and local stakeholders demonstrated a willingness to act locally to reduce the negative impacts of unmarried motherhood but lacked knowledge and support resources. Our findings indicate that mental health promotion for teenage mothers is likely to be better served through empowerment strategies rather than marriage and, in a context of poor mental health service access, there is a substantial role for community mobilisation and the promotion of self-help strategies to support teenage mothers. This study raises important points regarding different community understandings of depression and indicates collaboration between professionals and communities for a values-based approach.

Research Participants' Preferences for Individual Results of Pharmacogenomics Research: A Case of a Ugandan HIV Research Institute.

Little is known about whether people living with HIV would like to receive their results from pharmacogenomics research. This study explored the factors influencing participants' preferences and the reasons for their desire to receive individual results from pharmacogenomics research. We employed a convergent parallel mixed methods study design comprising a survey of 225 research participants and 5 deliberative focus group discussions with 30 purposively selected research participants. Almost all (98%) participants wanted to receive individual pharmacogenomics research results. Reasons for the desire to receive results were reciprocity for valuable time and effort, preparing for future eventualities, and the right to information about their health. Overall, participants desire to receive feedback from pharmacogenomics research, particularly if results are well established and clinically actionable.

Factors associated with continuity of care in hypertension and type 2 diabetes among forcibly displaced persons in the Bidibidi refugee settlement in Uganda: Protocol for a cross-sectional, mixed-methods study.

BACKGROUND: Non-communicable diseases in humanitarian settings are generally under-researched, particularly in Africa and have been called a neglected crisis. Little is known about factors affecting access to and (dis)continuity of care for chronic conditions, such as hypertension (HTN) and type 2 diabetes among forcibly displaced persons (FDPs) in Uganda. AIM: To investigate factors affecting access to and (dis)continuity of HTN and/or type 2 diabetes care among FDPs in the Bidibidi refugee settlement, Uganda. METHODS: A sequential explanatory mixed-methods design incorporating methodological and investigator triangulation will be conducted. The study aims to employ a community-based participatory research approach to equitably engage community members, researchers, and other stakeholders in the research process, recognising and maximising their diverse contributions. In phase 1, the quantitative arm of the study, 960 FDPs with HTN and/or type 2 diabetes will be interviewed about their sociodemographic characteristics, health status, migration experiences, social capital, and awareness, treatment, and control of these diseases. Participants will be purposively recruited from phase 1 as well as village health teams, healthcare providers, and policymakers to participate in phase 2, the qualitative study, in order to gain more insight into how mobility and social factors affect (dis)continuity of care among FDPs with HTN and/or type 2 diabetes. DISCUSSION: The findings from phase 1 and phase 2 of the study will be integrated through a triangulation process to provide a more holistic and comprehensive insight into the factors affecting access to and (dis)continuity for HTN and/or type 2 diabetes care among FDPs. Understanding these factors is expected to pave the way for conceptualizing health-enabling environments and strengthening health systems for FDPs with chronic conditions. It is anticipated that the study will generate baseline evidence that might be beneficial in developing and implementing HTN and diabetes care models for FDPs in the region.

Data sharing practices in collaborative human genomic research in low- and middle-income countries: A systematic review protocol.

INTRODUCTION: The practice of creating large databases has become increasingly common by combining research participants' data into larger repositories. Funders now require that data sharing be considered in newly funded research project, unless there are justifiable reasons not to do so. Access to genomic data brings along a host of ethical concerns as well as fairness and equity in the conduct of collaborative research between researchers from high- income and low-and middle-income countries. MATERIALS AND METHODS: This systematic review protocol will be developed in line with PRISMA -guidelines which refers to Open Science Framework, registered in PROSPERO (https://www.crd.york.ac.uk/prospero/) record CRD42022297984 and published in a peer reviewed journal. Data sources will include PubMed, google scholar, EMBASE, Web of science and MEDLINE. Both published and grey literature will be searched. Subject matter experts including bioethicists, principal investigators of genomic research projects and research administrators will be contacted. After de-duplication, titles and abstracts will be screened for eligibility. Data extraction will be undertaken using a piloted form designed in EPPI-Reviewer software before conducting risk of bias assessments by a pair of reviewers, acting independently. Any discrepancies will be resolved by consensus. Analysis will be done using a structured narrative synthesis and where feasible metanalysis. This review will attempt to highlight the context of data sharing practices in the global North-South and South-South collaborative human genomic research in low- and middle-income countries. This review will enhance the body of evidence on ethical, legal and social implications of data sharing in international collaborative genomic research setting criteria for data sharing. The full report will be shared with relevant stakeholders including universities, civil society, funders, and departments of genomic research to ensure an adequate reach in low-and middle-income countries (LMICs).

Home-based HIV counseling and testing: client experiences and perceptions in Eastern Uganda.

BACKGROUND: Though prevention and treatment depend on individuals knowing their HIV status, the uptake of testing remains low in Sub-Saharan Africa. One initiative to encourage HIV testing involves delivering services at home. However, doubts have been cast about the ability of Home-Based HIV Counseling and Testing (HBHCT) to adhere to ethical practices including consent, confidentiality, and access to HIV care post-test. This study explored client experiences in relation these ethical issues. METHODS: We conducted 395 individual interviews in Kumi district, Uganda, where teams providing HBHCT had visited 6-12 months prior to the interviews. Semi-structured questionnaires elicited information on clients' experiences, from initial community mobilization up to receipt of results and access to HIV services post-test. RESULTS: We found that 95% of our respondents had ever tested (average for Uganda was 38%). Among those who were approached by HBHCT providers, 98% were informed of their right to decline HIV testing. Most respondents were counseled individually, but 69% of the married/cohabiting were counseled as couples. The majority of respondents (94%) were satisfied with the information given to them and the interaction with the HBHCT providers. Most respondents considered their own homes as more private than health facilities. Twelve respondents reported that they tested positive, 11 were referred for follow-up care, seven actually went for care, and only 5 knew their CD4 counts. All HIV infected individuals who were married or cohabiting had disclosed their status to their partners. CONCLUSION: These findings show a very high uptake of HIV testing and satisfaction with HBHCT, a large proportion of married respondents tested as couples, and high disclosure rates. HBHCT can play a major role in expanding access to testing and overcoming disclosure challenges. However, access to HIV services post-test may require attention.

Women's views on consent, counseling and confidentiality in PMTCT: a mixed-methods study in four African countries.

BACKGROUND: Ambitious UN goals to reduce the mother-to-child transmission of HIV have not been met in much of Sub-Saharan Africa. This paper focuses on the quality of information provision and counseling and disclosure patterns in Burkina Faso, Kenya, Malawi and Uganda to identify how services can be improved to enable better PMTCT outcomes. METHODS: Our mixed-methods study draws on data obtained through: (1) the MATCH (Multi-country African Testing and Counseling for HIV) study's main survey, conducted in 2008-09 among clients (N = 408) and providers at health facilities offering HIV Testing and Counseling (HTC) services; 2) semi-structured interviews with a sub-set of 63 HIV-positive women on their experiences of stigma, disclosure, post-test counseling and access to follow-up psycho-social support; (3) in-depth interviews with key informants and PMTCT healthcare workers; and (4) document study of national PMTCT policies and guidelines. We quantitatively examined differences in the quality of counseling by country and by HIV status using Fisher's exact tests. RESULTS: The majority of pregnant women attending antenatal care (80-90%) report that they were explained the meaning of the tests, explained how HIV can be transmitted, given advice on prevention, encouraged to refer their partners for testing, and given time to ask questions. Our qualitative findings reveal that some women found testing regimes to be coercive, while disclosure remains highly problematic. 79% of HIV-positive pregnant women reported that they generally keep their status secret; only 37% had disclosed to their husband. CONCLUSION: To achieve better PMTCT outcomes, the strategy of testing women in antenatal care (perceived as an exclusively female domain) when they are already pregnant needs to be rethought. When scaling up HIV testing programs, it is particularly important that issues of partner disclosure are taken seriously.

Paying to Normalize Life: Monetary and Psychosocial Costs of Realizing a Normal Life in the Context of Free Antiretroviral Therapy Services in Uganda.

Antiretroviral therapy (ART) is considered the treatment that enables people living with HIV (PLHIV) to lead a "normal life". In spite of the availability of free treatment, patients in resource-poor settings may continue to incur additional costs to realize a normal and full life. This article describes the monetary expenses and psychosocial distress people on free ART bear to live normally. We conducted in-depth interviews with 50 PLHIV on ART. We found that the demands of treatment, poverty, stigma, and health-system constraints interplay to necessitate that PLHIV bear continuous monetary and psychosocial costs to realize local values that define normal life. In the context, access to free medicines is not sufficient to enable PLHIV in resource-poor settings to normalize life. Policy makers and providers should consider proactively complementing free ART with mechanisms that empower PLHIV economically, enhance their problem-solving capacities, and provide an enabling environment if the objective of normalizing life is to be achieved.

Social capital and resilience among people living on antiretroviral therapy in resource-poor Uganda.

BACKGROUND: Despite the national roll-out of free HIV medicines in Uganda and other sub-Saharan African countries, many HIV positive patients on antiretroviral therapy (ART) are at risk of non-adherence due to poverty and other structural and health system related constraints. However, several patients exhibit resilience by attaining and sustaining high levels of adherence amid adversity. Social capital, defined as resources embedded within social networks, is key in facilitating resilience but the mechanism through which it operates remains understudied. This article provides insights into mechanisms through which social capital enables patients on ART in a resource-poor setting to overcome risk and sustain adherence to treatment. METHODOLOGY: The article draws from an ethnographic study of 50 adult male and female HIV patients enrolled at two treatment sites in Uganda, 15 of whom were followed-up for an extended period of six months for narrative interviews and observation. The patients were selected purposively on the basis of socio-demographic and treatment related criteria. FINDINGS: Social capital protects patients on ART against the risk of non-adherence in three ways. 1) It facilitates access to scarce resources; 2) encourages HIV patients to continue on treatment; and 3) averts risk for non-adherence. CONCLUSIONS: Social capital is a key resource that can be harnessed to promote resilience among HIV patients in a resource-limited setting amid individual, structural and health system related barriers to ART adherence. Invigoration and maintenance of collectivist norms may however be necessary if its protective benefits are to be fully realized.

Expectations and needs of Ugandan women for improved quality of childbirth care in health facilities: A qualitative study.

OBJECTIVE: To describe the experiences, expectations, and needs of urban Ugandan women in relation to good-quality facility childbirth. METHODS: Women who had given birth in the 12 months prior to the study were purposively sampled and interviewed, or included in focus groups. Thematic analysis was used, and the data were interpreted within the context of an existing quality of care framework. RESULTS: Forty-five in-depth interviews and six focus group discussions were conducted. Respect and dignity, timely communication, competent skilled staff, and availability of medical supplies were central to women's accounts of quality care, or a lack of it. The hope for a live baby motivated women to seek facility-based childbirth. They expected to encounter competent, respectful, and caring staff with appropriate skills. In some cases, they could only fulfill these expectations through additional personal financial payments to staff, for clinical supplies, or to guarantee that they would be attended by someone with suitable skills. CONCLUSION: Long-term improvement in quality of maternity care in Uganda requires enhancement of the interaction between women and health staff in facilities, and investment in staff and resources to ensure that safe, respectful care is not dependent on willingness and/or capacity to pay.

Healthcare providers' perspectives on labor monitoring in Nigeria and Uganda: A qualitative study on challenges and opportunities.

OBJECTIVE: To explore current practices, challenges, and opportunities in relation to monitoring labor progression, from the perspectives of healthcare professionals in low-resource settings. METHODS: Thematic analysis of qualitative data (in-depth interviews [IDIs] and focus group discussions [FDGs]) obtained from a purposive sample of healthcare providers and managers in selected health facilities in Nigeria and Uganda. RESULTS: A total of 70 IDIs and 16 FGDs with doctors, midwives, and administrators are included in this analysis. Labor monitoring encompasses a broad scope of care jointly provided by doctors and midwives. A range of contextual limitations was identified as barriers to monitoring labor progression, including staff shortages, lack of team cooperation, delays in responding to abnormal labor observations, suboptimal provider-patient dynamics, and limitations in partograph use. Perceived opportunities to improve current practices included streamlining clinical team cooperation, facilitating provider-client communication, encouraging women's uptake of offered care, bridging the gaps in the continuum of monitoring tasks between cadres, and improving skills in assessment of labor progress, and accuracy in its documentation. CONCLUSION: Healthcare providers face many challenges to effective monitoring of labor progress in low-resource settings. This analysis presents potential opportunities to improve labor monitoring practices and tools in these contexts.

Defining quality of care during childbirth from the perspectives of Nigerian and Ugandan women: A qualitative study.

OBJECTIVE: To explore what "quality of care" means to childbearing women in Nigeria and Uganda, as a means of ensuring that women's voices and opinions are prioritized when developing interventions to improve quality in maternity care provision. METHODS: Qualitative methods, with a purposive sample of women in Nigeria and Uganda. Participants were asked to define quality of care and to provide examples of when it was and was not provided. Thematic analysis was used to synthesize findings based on an a priori framework (the WHO quality of care framework). RESULTS: 132 in-depth interviews and 21 focus group discussions are included. Participants spontaneously discussed each of the WHO framework domains of quality of care. Data were richest across the domains of effective communication, respect and dignity, emotional support, competent and motivated human resources, and essential physical resources. Women believed that good quality of care ensured optimal psychological and physiological outcomes for the woman and her baby. Positive interpersonal relationships between women and health providers were important. These included supportive care, building rapport, and using positive and clear language. CONCLUSION: To provide good quality of care, maternity services should consider and act on the expectations and experiences of women and their families.

Negotiating quality standards for effective delivery of labor and childbirth care in Nigeria and Uganda.

OBJECTIVE: "Negotiated standards" describe a level of quality of care that is acceptable and achievable within a specific health system, based on consensus between key stakeholders. This paper presents the development of negotiated standards for effective labor and childbirth care in selected hospitals and communities in Nigeria and Uganda. METHODS: A four-step development process involving different methodologies. The process included: (1) review and synthesis of internationally recognized intrapartum clinical principles and practices; (2) primary qualitative research to assess values and preferences of women and healthcare providers, and practices that align with these preferences; (3) draft contextualization of effective and ineffective behaviors to reflect values and preferences; and (4) WHO-mediated negotiations between relevant stakeholders, including community members, providers, and administrators. RESULTS: The primary outcomes of this process were a comprehensive set of effective behaviors and clinical practices covering the main domains of quality of care, which are practical and easy to communicate, implement, and audit across all levels of healthcare delivery. CONCLUSION: The process demonstrates that health facilities and providers can be motivated to adopt standards of care that uphold the values and preferences of both service users and providers, while adhering to international best practices.

Tensions in Communication between Children on Antiretroviral Therapy and Their Caregivers: A Qualitative Study in Jinja District, Uganda.

INTRODUCTION: HIV treatment and disclosure guidelines emphasize the importance of communicating diagnosis and treatment to infected children in ways that are appropriate to children's developmental stage and age. Minimal attention, however, has been given to communication challenges confronted by HIV-infected children and their caregivers. This study examined the tensions between children and their caregivers arising from differing perspectives regarding when and what to communicate about antiretroviral therapy (ART). METHODS: This qualitative study was conducted between November 2011 and December 2012 and involved 29 HIV-infected children aged 8-17 years on ART and their caregivers. Data were collected through observations and in-depth interviews, which took place in homes, treatment centres and post-test clubs. Children and caregivers were sampled from among the 394 HIV-infected children and (their) 393 caregivers who participated in the cross-sectional survey that preceded the qualitative study. ATLAS.ti. Version 7 was used in the management of the qualitative data and in the coding of the emerging themes. The data were then analyzed using content thematic analysis. RESULTS: While the children felt that they were mature enough to know what they were suffering and what the medications were for, the caregivers wanted to delay discussions relating to the children's HIV diagnosis and medication until they felt that the children were mature enough to deal with the information and keep it a secret and this caused a lot of tension. The children employed different tactics including refusing to take the medicines, to find out what they were suffering from and what the medications were for. Children also had their own ideas about when, where and with whom to discuss their HIV condition, ideas that did not necessarily coincide with those of their caregivers, resulting in tensions. CONCLUSIONS: Guidelines should take into consideration differing perceptions of maturity when recommending ages at which caregivers should communicate with their children about diagnosis and ART. Health care providers should also encourage caregivers to recognize and respect children's efforts to learn about and manage their condition. Children's questions and expressions of feelings should be treated as openings for communication on these issues.

Communication between HIV-infected children and their caregivers about HIV medicines: a cross-sectional study in Jinja district, Uganda.

INTRODUCTION: Knowledge of antiretroviral therapy (ART) among children with HIV depends on open communication with them about their health and medicines. Guidelines assign responsibility for communication to children's home caregivers. Other research suggests that communication is poor and knowledge about ART is low among children on treatment in low-income countries. This study sought to describe communication about medicine for HIV in quantitative terms from the perspectives of both children and caregivers. Thereafter, it established the factors associated with this communication and with children's knowledge about their HIV medicines. METHODS: We undertook a cross-sectional survey of a random sample of 394 children with HIV on treatment and their caregivers at nine health facilities in Jinja District, Uganda. We assessed reported frequency and content of communication regarding their medicines as well as knowledge of what the medicines were for. Logistic regression analysis was used to determine the factors associated with communication patterns and children's knowledge of HIV medicines. RESULTS: Although 79.6% of the caregivers reported that they explained to the children about the medicines, only half (50.8%) of the children said they knew that they were taking medicines for HIV. Older children aged 15-17 years were less likely to communicate with a caregiver about the HIV medicines in the preceding month (OR 0.5, 95% CI 0.3-0.7, p=0.002). Children aged 11-14 years (OR 6.1, 95% CI 2.8-13.7, p<0.001) and 15-17 years (OR 12.6, 95% CI 4.6-34.3, p<0.001) were more likely to know they were taking medicines for HIV compared to the younger ones. The least common reported topic of discussion between children and caregivers was "what the medicines are for" while "the time to take medicines" was by far the most mentioned by children. CONCLUSIONS: Communication about, and knowledge of, HIV medicines among children with HIV is low. Young age (less than 15 years) was associated with more frequent communication. Caregivers should be supported to communicate diagnosis and treatment to children with HIV. Age-sensitive guidelines about the nature and content of communication should be developed.

Determinants of HIV counseling and testing uptake among individuals in long-term sexual relationships in Uganda.

INTRODUCTION: Studies show that HIV counseling and testing (HCT) can improve linkage to HIV prevention, care and treatment services. However, uptake of HCT among couples remains low in most settings. We investigated the determinants of HCT uptake among individuals in long-term relationships in two districts in Uganda. METHODS: This case-control study was conducted among 787 (400 in Kampala and 387 in Soroti) individuals in long-term sexual relationships, aged 18-54 years, using interviewer-administered questionnaires. Cases were individuals who had ever tested for HIV (selected from health facility records and traced in the community for interview) while controls were individuals who had never tested for HIV, identified from the same community as the cases. Data were collected on sociodemographic and behavioral characteristics; entered into FoxPro and analyzed using STATA version 12.1. We performed multivariable logistic regression to estimate the odds ratio (OR) and 95% Confidence Intervals (95%CI) associated with prior HCT and couples' HCT uptake, controlling for suspected confounders. RESULTS: Of the 787 participants, 522 had ever tested for HIV (cases) while 265 had never tested for HIV (controls). Compared to those that had never tested for HIV, those that had ever tested for HIV were significantly more likely to be females (Adj. OR=3.23, 95%CI: 2.27, 4.60), to be 25-29 years old (Adj. OR=2.15, 95%CI: 1.32, 3.50), to report exposure to a couples' HCT promotional campaign (Adj. OR=2.01, 95%CI: 1.30, 3.10) and to believe that HIV discordance is possible among married couples (Adj. OR=1.77, 95%CI: 1.20, 2.63). Compared to individuals that had ever received individual HCT, those that had ever received couples' HCT were significantly more likely to report prior discussion of HIV testing with partner (Adj. OR=4.35, 95%CI: 2.61, 7.28) and to be residents of Soroti district (Adj. OR=6.01, 95%CI: 3.74, 9.65). CONCLUSION: Prior HCT was significantly associated with female gender and exposure to a couples' HCT promotional campaign while prior couples' HCT was significantly associated with prior discussion of HIV testing with partner. To increase HIV testing among couples, these findings suggest a need for HCT promotional campaigns that promote communication about HCT between partners.

Disclosure of HIV status between parents and children in Uganda in the context of greater access to treatment.

While disclosure of HIV sero-status is encouraged in the management of the HIV and AIDS epidemic, it remains a challenge, especially among family members. This article examines the moral dilemmas and pragmatic incentives surrounding disclosure of HIV status in contemporary Uganda. Our findings are based on 12 in-depth interviews, 2 focus-group discussions, 6 key informant interviews with AIDS activists, and open-ended responses derived from 148 HIV-positive persons in a quantitative survey. The study was conducted in 2008-2009 in Kampala, Mpigi, and Soroti districts in Uganda. We found both parents and adult children facing dilemmas in disclosure, whether it was parents revealing their own HIV status to their children or the status of their perinatally infected children, or young people infected through sexual intercourse telling their parents. For both groups, there is fear of blame, stigma, discrimination, and shame and guilt related to unsafe sex, while young people also fear loss of privileges. On the other hand, there are practical imperatives for disclosure in terms of gaining access to care, treatment, and material resources. Faced with these dilemmas, HIV-positive people and their families require professional counselling to help them work through the emotional challenges encountered and identify mechanisms of support and coping.