Tablet-based disclosure counselling for HIV-infected children, adolescents, and their caregivers: a pilot study.

BACKGROUND: Overwhelmed, under-trained medical staff working in resource-limited settings need efficient resources for HIV disclosure counselling. The objective of this study was to describe providers' experiences using tablet computers for disclosure-related counselling with HIV-infected children and their caregivers in western Kenya, with additional perspectives from adolescents. METHODS: A qualitative study design was implemented at three HIV clinics in western Kenya (Bumala, Busia and Port Victoria) within the Academic Model Providing Access to Healthcare (AMPATH) partnership. Twenty-one healthcare providers involved with paediatric disclosure were recruited and enrolled in the study. Initial interviews focused on understanding current disclosure practices and barriers. Tablets containing disclosure-related resources were distributed. Resources included short narrative videos created in this context to highlight issues relevant to child HIV disclosure. RESULTS: Providers reported tablets improved disclosure, child participation, and medication adherence. All reported that reviewing materials increased their knowledge and comfort with disclosure. The most frequently used materials were the narrative videos and an animated video explaining the importance of medication adherence. Time was a major barrier for using the tablet. Clinician self-education persisted at one-year follow-up. Adolescents expressed enjoyment from viewing the tablet resources and had a better understanding of the importance of medication adherence. CONCLUSIONS: Tablet computers containing resources for disclosure are an acceptable and potentially effective resource to help providers support families with disclosure. Further work is needed to train the clinical providers in using the resources in a developmentally appropriate manner, and to develop new resources on adolescent-specific and HIV-related topics.

User-Guided Enhancements to a Technology-Facilitated Resilience Program to Address Opioid Risks Following Traumatic Injury in Youth: Qualitative Interview Study.

BACKGROUND: Youth with traumatic injury experience elevated risk for behavioral health disorders, yet posthospital monitoring of patients' behavioral health is rare. The Telehealth Resilience and Recovery Program (TRRP), a technology-facilitated and stepped access-to-care program initiated in hospitals and designed to be integrated seamlessly into trauma center operations, is a program that can potentially address this treatment gap. However, the TRRP was originally developed to address this gap for mental health recovery but not substance use. Given the high rates of substance and opioid use disorders among youth with traumatic injury, there is a need to monitor substance use and related symptoms alongside other mental health concerns. OBJECTIVE: This study aimed to use an iterative, user-guided approach to inform substance use adaptations to TRRP content and procedures. METHODS: We conducted individual semistructured interviews with adolescents (aged 12-17 years) and young adults (aged 18-25 years) who were recently discharged from trauma centers (n=20) and health care providers from two level 1 trauma centers (n=15). Interviews inquired about reactions to and recommendations for expanding TRRP content, features, and functionality; factors related to TRRP implementation and acceptability; and current strategies for monitoring patients' postinjury physical and emotional recovery and opioid and substance use. Interview responses were transcribed and analyzed using thematic analysis to guide new TRRP substance use content and procedures. RESULTS: Themes identified in interviews included gaps in care, task automation, user personalization, privacy concerns, and in-person preferences. Based on these results, a multimedia, web-based mobile education app was developed that included 8 discrete interactive education modules and 6 videos on opioid use disorder, and TRRP procedures were adapted to target opioid and other substance use disorder risk. Substance use adaptations included the development of a set of SMS text messaging-delivered questions that monitor both mental health symptoms and substance use and related symptoms (eg, pain and sleep) and the identification of validated mental health and substance use screening tools to monitor patients' behavioral health in the months after discharge. CONCLUSIONS: Patients and health care providers found the TRRP and its expansion to address substance use acceptable. This iterative, user-guided approach yielded novel content and procedures that will be evaluated in a future trial.

Factors influencing post-surgical variability in StepWatch data in youth with cerebral palsy.

BACKGROUND: Over the past several years, activity monitors have become very popular in the general population, and due to their low cost and ease of use, are starting to be seen as clinical tools for the assessment of interventions. This presents researchers with the opportunity to better understand how activity, or lack thereof, is related to the recovery of patients. However, even in individuals without disabilities, there is a high degree of variability in activity monitor data which must be better understood in order to produce clinically meaningful interpretation of such data. RESEARCH QUESTION: What sources of variability contribute the most to the daily scatter in activity data as measured by StepWatches in youth with Cerebral Palsy (CP)? In particular, do non-clinical factors such as weather and location contribute to this variability significantly? METHODS: This was a retrospective study making use of data from our activity monitoring protocol of youths with CP who obtain single event multi-level surgeries. Before and after these surgeries, 57 such youths aged 4.2-21.3 years were issued StepWatches to monitor daily activity for 8 day periods over 24 months duration. Weather data and walk scores for the patients' home locations were collected from online databases. Steps per hour were predicted from clinical and environmental data using bootstrapped regression to determine the stability of regression coefficients and the percent variability explained by each variable. RESULTS: Time since surgery, age, season, GMFCS level, and surgical burden were significant variables in the model. Of them, GMFCS level was most important and explained nearly 16% of the variability in the data. Temperature, precipitation, and walk score had small effects on step count variance. SIGNIFICANCE: Understanding sources of variability in step-counts is important if such a measure is to be used as a clinical measure of recovery, and may be important in the consideration of future surgical planning.

A systematic review of portable electronic technology for health education in resource-limited settings.

OBJECTIVE: The objective of this study is to conduct a systematic review of the literature of how portable electronic technologies with offline functionality are perceived and used to provide health education in resource-limited settings. METHODS: Three reviewers evaluated articles and performed a bibliography search to identify studies describing health education delivered by portable electronic device with offline functionality in low- or middle-income countries. Data extracted included: study population; study design and type of analysis; type of technology used; method of use; setting of technology use; impact on caregivers, patients, or overall health outcomes; and reported limitations. RESULTS: Searches yielded 5514 unique titles. Out of 75 critically reviewed full-text articles, 10 met inclusion criteria. Study locations included Botswana, Peru, Kenya, Thailand, Nigeria, India, Ghana, and Tanzania. Topics addressed included: development of healthcare worker training modules, clinical decision support tools, patient education tools, perceptions and usability of portable electronic technology, and comparisons of technologies and/or mobile applications. Studies primarily looked at the assessment of developed educational modules on trainee health knowledge, perceptions and usability of technology, and comparisons of technologies. Overall, studies reported positive results for portable electronic device-based health education, frequently reporting increased provider/patient knowledge, improved patient outcomes in both quality of care and management, increased provider comfort level with technology, and an environment characterized by increased levels of technology-based, informal learning situations. Negative assessments included high investment costs, lack of technical support, and fear of device theft. CONCLUSIONS: While the research is limited, portable electronic educational resources present promising avenues to increase access to effective health education in resource-limited settings, contingent on the development of culturally adapted and functional materials to be used on such devices.

Mitigating The Burden Of Diabetes In Sub-Saharan Africa Through An Integrated Diagonal Health Systems Approach.

Diabetes is a chronic non-communicable disease (NCD) presenting growing health and economic burdens in sub-Saharan Africa (SSA). Diabetes is unique due to its cross-cutting nature, impacting multiple organ systems and increasing the risk for other communicable and non-communicable diseases. Unfortunately, the quality of care for diabetes in SSA is poor, largely due to a weak disease management framework and fragmented health systems in most sub-Saharan African countries. We argue that by synergizing disease-specific vertical programs with system-specific horizontal programs through an integrated disease-system diagonal approach, we can improve access, quality, and safety of diabetes care programs while also supporting other chronic diseases. We recommend utilizing the six World Health Organization (WHO) health system building blocks - 1) leadership and governance, 2) financing, 3) health workforce, 4) health information systems, 5) supply chains, and 6) service delivery - as a framework to design a diagonal approach with a focus on health system strengthening and integration to implement and scale quality diabetes care. We discuss the successes and challenges of this approach, outline opportunities for future care programming and research, and highlight how this approach can lead to the improvement in the quality of care for diabetes and other chronic diseases across SSA.

Models of integration of HIV and noncommunicable disease care in sub-Saharan Africa: lessons learned and evidence gaps.

OBJECTIVE: To describe available models of HIV and noncommunicable disease (NCD) care integration in sub-Saharan Africa (SSA). DESIGN: Narrative review of published articles describing various models of HIV and NCD care integration in SSA. RESULTS: We identified five models of care integration across various SSA countries. These were integrated community-based screening for HIV and NCDs in the general population; screening for NCDs and NCD risk factors among HIV patients enrolled in care; integration of HIV and NCD care within clinics; differentiated care for patients with HIV and/or NCDs; and population healthcare for all. We illustrated these models with descriptive case studies highlighting the lessons learned and evidence gaps from the various models. CONCLUSION: Leveraging existing HIV infrastructure for NCD care is feasible with various approaches possible depending on available program capacity. Process and clinical outcomes for existing models of care integration are not yet described but are urgently required to further advise policy decisions on HIV/NCD care integration.

Diabetes in sub-Saharan Africa - from policy to practice to progress: targeting the existing gaps for future care for diabetes.

The global prevalence and impact of diabetes has increased dramatically, particularly in sub-Saharan Africa. This region faces unique challenges in combating the disease including lack of funding for noncommunicable diseases, lack of availability of studies and guidelines specific to the population, lack of availability of medications, differences in urban and rural patients, and inequity between public and private sector health care. Because of these challenges, diabetes has a greater impact on morbidity and mortality related to the disease in sub-Saharan Africa than any other region in the world. In order to address these unacceptably poor trends, contextualized strategies for the prevention, identification, management, and financing of diabetes care within this population must be developed. This narrative review provides insights into the policy landscape, epidemiology, pathophysiology, care protocols, medication availability, and health care systems to give readers a comprehensive summary of many factors in these domains as they pertain to diabetes in sub-Saharan Africa. In addition to providing a review of the current evidence available in these domains, potential solutions to address the major gaps in care will be proposed to reverse the negative trends seen with diabetes in sub-Saharan Africa.

Ensuring Patient-Centered Access to Cardiovascular Disease Medicines in Low-Income and Middle-Income Countries Through Health-System Strengthening.

Cardiovascular disease (CVD) is the leading cause of global mortality and is expected to reach 23 million deaths by 2030. Eighty percent of CVD deaths occur in low-income and middle-income countries (LMICs). Although CVD prevention and treatment guidelines are available, translating these into practice is hampered in LMICs by inadequate health care systems that limit access to lifesaving medications. In this review article, we describe the deficiencies in the current LMIC supply chains that limit access to effective CVD medicines, and discuss existing solutions that are translatable to similar settings so as to address these deficiencies.

HIV Stigma: Perspectives from Kenyan Child Caregivers and Adolescents Living with HIV.

Stigma shapes all aspects of HIV prevention and treatment, yet there are limited data on how HIV-infected youth and their families are affected by stigma in sub-Saharan Africa. The authors conducted a qualitative study using focus group discussions among 39 HIV-infected adolescents receiving care at HIV clinics in western Kenya and 53 caregivers of HIV-infected children. Participants felt that while knowledge and access to treatment were increasing, many community members still held negative and inaccurate views about HIV, including associating it with immorality and believing in transmission by casual interactions. Stigma was closely related to a loss of social and economic support but also included internalized negative feelings about oneself. Participants identified treatment-related impacts of stigma, including nonadherence, nondisclosure of status to child or others, and increased mental health problems. Qualitative inquiry also provided insights into how to measure and reduce stigma among affected individuals and families.

'Why did you not tell me?': perspectives of caregivers and children on the social environment surrounding child HIV disclosure in Kenya.

OBJECTIVE: We sought to better understand how social factors shape HIV disclosure to children from the perspective of caregivers and HIV-infected children in Kenya. DESIGN: We conducted a qualitative study using focus group discussions (FGDs) to gain perspectives of caregivers and children on the social environment for HIV disclosure to children in western Kenya. FGDs were held with caregivers who had disclosed the HIV status to their child and those who had not, and with HIV-infected children who knew their HIV status. METHODS: FGD transcripts were translated into English, transcribed, and analyzed using constant comparison, progressive coding, and triangulation to arrive at a contextualized understanding of social factors influencing HIV disclosure. RESULTS: Sixty-one caregivers of HIV-infected children participated in eight FGDs, and 23 HIV-infected children participated in three FGDs. Decisions around disclosure were shaped by a complex social environment that included the caregiver-child dyad, family members, neighbors, friends, schools, churches, and media. Whether social actors demonstrated support or espoused negative beliefs influenced caregiver decisions to disclose. Caregivers reported that HIV-related stigma was prominent across these domains, including stereotypes associating HIV with sexual promiscuity, immorality, and death, which were tied to caregiver fears about disclosure. Children also recognized stigma as a barrier to disclosure, but were less specific about the social and cultural stereotypes cited by the caregivers. CONCLUSION: In this setting, caregivers and children described multiple actors who influenced disclosure, mostly due to stigmatizing beliefs about HIV. Better understanding the social factors impacting disclosure may improve the design of support services for children and caregivers.

Clustering by fuzzy neural gas and evaluation of fuzzy clusters.

We consider some modifications of the neural gas algorithm. First, fuzzy assignments as known from fuzzy c-means and neighborhood cooperativeness as known from self-organizing maps and neural gas are combined to obtain a basic Fuzzy Neural Gas. Further, a kernel variant and a simulated annealing approach are derived. Finally, we introduce a fuzzy extension of the ConnIndex to obtain an evaluation measure for clusterings based on fuzzy vector quantization.