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1

Maniragaba, Fred, Betty Kwagala, Emmanuel Bizimungu, Stephen Ojiambo Wandera, and James Ntozi. "Predictors of quality of life of older persons in rural Uganda: A cross sectional study." AAS Open Research 1 (July 26, 2018): 22. http://dx.doi.org/10.12688/aasopenres.12874.1.

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Background: Little is known about the quality of life of older persons (OPs) in Uganda in particular, and Africa in general. This study examined factors associated with quality of life of older persons in rural Uganda. Method: We performed a cross-sectional survey of 912 older persons from the four regions of Uganda. Data were analyzed at univariate, bivariate and multivariate level where ordinal logistic regression was applied. Results: Older persons in northern (OR=0.39; p=0.002) and western (OR=0.33; p<0.001) regions had poor quality of life relative to those in central region. Those who were HIV positive had poor quality of life (OR=0.45; p=0.031) compared to those who were HIV negative. In contrast, living in permanent houses predicted good quality of life (OR=2.04; p=<0.001). Older persons whose household assets were controlled by their spouses were associated with good quality of life (OR=2.06; p=0.040) relative to those whose assets were controlled by their children. Conclusion: Interventions mitigating the HIV and AIDS related Quality of life should target older persons. The government of Uganda should consider improving housing conditions for older persons in rural areas.
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Maniragaba, Fred, Betty Kwagala, Emmanuel Bizimungu, Stephen Ojiambo Wandera, and James Ntozi. "Predictors of quality of life of older persons in rural Uganda: A cross sectional study." AAS Open Research 1 (November 9, 2018): 22. http://dx.doi.org/10.12688/aasopenres.12874.2.

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Background: Little is known about the quality of life of older persons (OPs) in Uganda in particular, and Africa in general. This study examined factors associated with quality of life of older persons in rural Uganda. Method: We performed a cross-sectional survey of 912 older persons from the four regions of Uganda. Data were analyzed at univariate, bivariate and multivariate level where ordinal logistic regression was applied. Results: Older persons in northern (OR=0.39; CI=0.224-0.711) and western (OR=0.33; CI=0.185-0.594) regions had poor quality of life relative to those in central region. Those who were HIV positive had poor quality of life (OR=0.45; CI=0.220-0.928) compared to those who were HIV negative. In contrast, living in permanent houses predicted good quality of life (OR=2.04; CI=1.391-3.002). Older persons whose household assets were controlled by their spouses were associated with good quality of life (OR=2.06;CI=1.032-4.107) relative to those whose assets were controlled by their children. Conclusion: Interventions mitigating the HIV and AIDS related Quality of life should target older persons. The government of Uganda should consider improving housing conditions for older persons in rural areas.
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Kuteesa, Monica O., Stuart Wright, Janet Seeley, Joseph Mugisha, Eugene Kinyanda, Frederick Kakembo, Richard Mwesigwa, and Francis Scholten. "Experiences of HIV-related stigma among HIV-positive older persons in Uganda – a mixed methods analysis." SAHARA-J: Journal of Social Aspects of HIV/AIDS 11, no. 1 (January 2, 2014): 126–37. http://dx.doi.org/10.1080/17290376.2014.938103.

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Kisakye, Alice, Deanna Saylor, Ned Sacktor, Gertrude Nakigozi, Noeline Nakasujja, Kevin Robertson, Aggrey Anok, Maria Wawer, and Ron Gray. "Caregiver versus self-reported activities of daily living among HIV-positive persons in Rakai, Uganda." AIDS Care 31, no. 7 (December 15, 2018): 836–39. http://dx.doi.org/10.1080/09540121.2018.1557591.

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Onyemelukwe, Cheluchi. "Discrimination on the basis of HIV status." International Journal of Discrimination and the Law 17, no. 3 (August 21, 2017): 160–79. http://dx.doi.org/10.1177/1358229117727415.

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HIV/AIDS remains a significant public health challenge in Nigeria, with over three million persons living with the condition. Throughout the history of HIV/AIDS in Nigeria, persons living with the condition have faced stigma and discrimination in various areas including access to health services, access to education, access to employment, among others. In the past, because of lacunae in Nigerian law and jurisprudence, it has been the subject of debate whether Nigerians living with HIV/AIDS are adequately protected by law. Recent developments in legislation such as the federal HIV/AIDS Anti-Discrimination Act, 2014 and judicial decisions in 2012 and 2016 on discrimination on the basis of HIV status suggest a positive shift of the law to full protection of the rights of persons living with HIV/AIDS in Nigeria, particularly in the area of employment. This article provides an analysis of these recent developments in the law and argues that the time has come to amend the Constitution of the Federal Republic of Nigeria to include health status as a ground upon which one cannot be unduly discriminated against.
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Ruzagira, Eugene, Kathy Baisley, Anatoli Kamali, and Heiner Grosskurth. "Factors associated with uptake of home-based HIV counselling and testing and HIV care services among identified HIV-positive persons in Masaka, Uganda." AIDS Care 30, no. 7 (February 20, 2018): 879–87. http://dx.doi.org/10.1080/09540121.2018.1441967.

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7

Blair, Paul W., Kenneth Kobba, Matthew Robinson, Emmanuel Candia, Gilbert Aniku, Alphonsus Matovu, Francis Kakooza, Richard Walwema, Mohammed Lamorde, and Yukari C. Manabe. "776. The prevalence of HIV among hospitalized persons with acute febrile illness in rural Uganda, August 2019-June 2020." Open Forum Infectious Diseases 7, Supplement_1 (October 1, 2020): S432. http://dx.doi.org/10.1093/ofid/ofaa439.966.

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Abstract Background In Uganda, in the early PEPFAR era, HIV coinfections were responsible for most hospitalizations with febrile illness (as high as 85% in 2006). Currently, national guidelines recommend universal antiretroviral therapy ideally before the development of AIDS. We evaluated the prevalence of HIV among patients admitted to two regional referral hospitals with febrile illness in the era of ‘Treat All.’ Methods Participants admitted to two regional referral hospitals in Uganda were enrolled at emergency departments or medical wards. Participants uniformly received blood cultures, malaria (rapid diagnostic test), and tuberculosis (Xpert MTB/RIF Ultra), hepatitis A IgM, hepatitis B sAg, and HIV fourth generation testing were performed. Among participants with HIV, cryptococcal antigen testing and urine lipoarabinomannan (LAM) were performed. Results From August 2019-June 2020, 95 participants (58% female) with an average age of 36.2 (SD 14.1) years, presented from 11 districts in Uganda. Participants presented at facilities 4.9 days (SD: 2.5) after onset of symptoms. Additionally, 16.1% of participants had a qSOFA (quick Sepsis Related Organ Failure Assessment) severity score of 2 or greater. By 28 days, 11.0% (n=7) died and 10.8% were lost to follow-up. On admission, 25.3% (n=24) of participants had a known history of HIV, the majority (87.5%) were on ART on hospital presentation. Of the 9.5% (n=9) who were newly diagnosed with HIV during the admission 6 were started on ART during hospitalization or within a month after hospitalization. Microbiologic and rapid diagnostic test results included positive results for tuberculosis (2.1%, 2/95 PCR; 3/16 urine LAM), malaria (29.5%, 28/95), cryptococcal antigen positive (12.5%; 2/15), hepatitis A (1.1%, 1/95), and hepatitis B (5.3%, 5/95). Blood cultures were positive in 11.1% of patients (10/90) with S. pneumoniae being most common isolate (N=4). Conclusion In the universal ART era, the proportion of hospitalized febrile patients with HIV has decreased. Overall, 10% have newly diagnosed infection emphasizing the importance of continuing to test all hospitalized febrile patients. Diagnostic evaluations are needed to assess the burden of other causes of febrile illness in order to reprioritize potential differential diagnoses. Disclosures All Authors: No reported disclosures
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Rukundo, Godfrey Zari, Brian Leslie Mishara, and Eugene Kinyanda. "Burden of Suicidal Ideation and Attempt among Persons Living with HIV and AIDS in Semiurban Uganda." AIDS Research and Treatment 2016 (2016): 1–9. http://dx.doi.org/10.1155/2016/3015468.

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Although the impact of HIV/AIDS has changed globally, it still causes considerable morbidity and mortality, including suicidality, in countries like Uganda. This paper describes the burden and risk factors for suicidal ideation and attempt among 543 HIV-positive attending two HIV specialized clinics in Mbarara municipality, Uganda. The rate of suicidal ideation was 8.8% (n=48; 95% CI: 6.70–11.50) and suicidal attempt was 3.1% (17, 95% CI 2.00–5.00). The factors associated with increased risk for suicidal ideation and attempts were state anger (OR = 1.06, 95% CI: 1.03–1.09;p=0.001); trait anger (OR 1.10, 95% CI 1.04–1.16,p=0.002); depression (OR 1.13, 95% CI 1.07–1.20,p=0.001); hopelessness (OR 1.12, 95% CI 1.02–1.23,p=0.024); anxiety (OR 1.06, 95% CI 1.03–1.09); low social support (OR 0.19, 95% CI 0.07–0.47,p=0.001); inability to provide for others (OR 0.19, 95% CI 0.07–0.47,p=0.001); and stigma (OR 2.48, 95% CI 1.11–5.54,p=0.027). At multivariate analysis, only state anger remained statistically significant. HIV/AIDS is associated with several clinical, psychological, and social factors which increase vulnerability to suicidal ideation and attempts. Making suicide risk assessment and management an integral part of HIV care is warranted.
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Faisal, Buyinza, Teera Joweria, and Bateganya Fred Henry. "Consequences of HIV Infection on Household Assets and Human Capital Investment in Uganda: Micro Evidence." International Journal of Economics and Finance 9, no. 12 (November 19, 2017): 202. http://dx.doi.org/10.5539/ijef.v9n12p202.

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This paper studies the effect of the HIV and AIDS epidemic on economic decision making using the Uganda National Household Survey (2010). The findings indicate that household’s HIV and AIDS status, education and social-economic factors are important in explaining low household’s asset accumulation and school enrolments of children in Uganda especially at primary school level. Household savings and assets accumulation findings show that household’s HIV and AIDS status and their education levels, marital status and the employment status are consistently associated with lower savings. Major implications of these results is that raising women’s education improves their economic opportunities and the behavioral responses in sexual interaction will lead to decline in HIV infection by reducing the willingness to engage in unprotected sex. In fact, we find that educational performance declines in those HIV infected households in which the father is living with HIV. The paper recognizes the policy challenges surrounding the HIV and AIDS -education linkage and considers some of the strategies that have been implemented to improve the schooling outcomes of children from households of people living with HIV (PLHIV). We find a weak positive effect of HIV infection on savings and a significant positive effect on school enrolment and educational expenses for children. High-perceived infection risk has a positive albeit imprecise influence on school enrollment and educational expenses, but no effect on savings.
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Diallo, Abdoulaye, Chia Vang, Belinda Rivas, Antonio Aguirre, Carl Flowers, and Ngai Kwan. "The Use of Employment/Vocational Rehabilitation Services for Persons with HIV/AIDS and Substance Abuse: A potential Health Benefit." Journal of Applied Rehabilitation Counseling 48, no. 4 (December 1, 2017): 28–37. http://dx.doi.org/10.1891/0047-2220.48.4.28.

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This study investigates Vocational Rehabilitation (VR) services related to competitive employment closure among non-Hispanic Blacks (NHB), non-Hispanic Whites (NHW), and Hispanics with HIV/AIDS and substance use disorder (SUD). Data of 4150 was extracted from the Rehabilitation Services Administration (RSA-911) database. Descriptive statistics and multi-variate analysis showed consumers who received SSI and Medicare were less likely to be employed than those who did not, and, NHW who received rehabilitation counseling and guidance benefited the most compared to NHB who did not. Rehabilitation counselors can assist minorities with HIV/AIDS and SUD secure employment given the positive effects of employment for this population. Health professionals should consider incorporating employment, using VR services in their treatment strategies, while making sure clients with different racial ethnicity background benefit equally from all VR services.
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Nakiganda, Lydia Jacenta, Gertrude Nakigozi, Joseph Kagaayi, Fred Nalugoda, David Serwadda, Nelson Sewankambo, Ronald Gray, Anthony Ndyanabo, Richard Muwanika, and Benedict Oppong Asamoah. "Cross-sectional comparative study of risky sexual behaviours among HIV-infected persons initiated and waiting to start antiretroviral therapy in rural Rakai, Uganda." BMJ Open 7, no. 9 (September 2017): e016954. http://dx.doi.org/10.1136/bmjopen-2017-016954.

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ObjectivesTo compare risky sexual behaviours between HIV-positive persons initiated on antiretroviral therapy (ART) (ART-experienced) and persons waiting to start on ART (ART-naive) and assess predictors of risky sexual behaviours among HIV-infected patients in rural Rakai district, Uganda.Study designThis is a cross-sectional study that used data from the Rakai Community Cohort Study (RCCS) database between 2013 and 2014. A structured questionnaire was used for data collection. We used stepwise logistic regression as an index to estimate the adjusted ORs for the association between risky sexual behaviours and ART treatment status.Study settingThis study was conducted in Rakai district, located in south-western Uganda. The data for this study were extracted from the RCCS. RCCS is an open prospective cohort of approximately 15 000 consenting participants aged 15–49 years.ParticipantsHIV-positive participants aged 18–49 years who had sex at least once a month with any partner prior to the start of the study.Main outcome measuresInconsistent/no condom use in the last 12 months, alcohol use at last sexual encounter, and two or more sexual partners.ResultsART-naive participants were more likely to report inconsistent condom use (OR=1.74, 95% CI 1.11 to 2.73) and more likely to drink alcohol at last sexual encounter (OR=1.65, 95% CI 1.11 to 2.46), compared with ART-experienced patients. ART treatment status (p<0.001) was a significant predictor of risky sexual behaviours. Both marital status (p=0.016) and occupation level (p=0.009) were positively associated with inconsistent condom use, while sex (p<0.001) correlated with alcohol use at last sexual encounter.ConclusionART-naive participants were more likely to exhibit risky sexual behaviours than the ART-experienced participants. The intensity of risk reduction counselling should be increased for HIV-positive persons waiting to start ART but already in HIV care.
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Bukenya, Dominic, Janet Seeley, Grace Tumwekwase, Elizabeth Kabunga, and Eugene Ruzagira. "How Follow-Up Counselling Increases Linkage to Care Among HIV-Positive Persons Identified Through Home-Based HIV Counselling and Testing: A Qualitative Study in Uganda." SAGE Open 10, no. 1 (January 2020): 215824401990016. http://dx.doi.org/10.1177/2158244019900166.

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We investigated how follow-up counselling had increased linkage to HIV care in a trial of referral to care and follow-up counseling, compared to referral to care only, for participants diagnosed as HIV-positive through home-based HIV counseling and testing. We carried out a cross-sectional qualitative study. Using random stratified sampling, we selected 43 trial participants (26 [60%] in the intervention arm). Sample stratification was by sex, distance to an ART facility, linkage, and nonlinkage to HIV care. Twenty-six in-depth interviews were conducted with participants in the intervention arm: 17 people who had linked to HIV care and 9 who had not linked after 6 months of follow-up. Home-based follow-up counseling helped to overcome worries resulting from an HIV-positive test result. In addition, the counseling offered an opportunity to address questions on HIV treatment side effects, share experiences of intimate partner violence or threats, and general problems linking to care. The counselling encouraged early linkage to HIV care and use of biomedical medicines, discouraging alternative medicine usage. Home-based follow-up counseling also helped to promote HIV sero-status disclosure, facilitating linkage to, retention in and adherence to HIV care and treatment. This study successfully demonstrated that home-based follow-up counselling increased linkage to care through encouragement to seek care, provision of accurate information about HIV care services and supporting the person living with HIV to disclose and manage stigma.
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Mugisha, Joseph O., Enid J. Schatz, Joel Negin, Paul Mwaniki, Paul Kowal, and Janet Seeley. "Timing of Most Recent Health Care Visit by Older People Living With and Without HIV." International Journal of Aging and Human Development 85, no. 1 (December 2, 2016): 18–32. http://dx.doi.org/10.1177/0091415016680071.

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The objective of this article is to document factors associated with the recency of health-care service utilization by people aged 50 years and over living with and without HIV in Uganda. A survey was conducted with 510 Ugandans aged 50 and older, living with and without HIV. The survey included information on sociodemographic characteristics, health state, self-reported chronic conditions, and timing of most recent visit to a health-care facility (time since last visit [TSLV]). We use ordinal logistic regression to identify independent factors associated TSLV. Independent factors associated with TSLV (>6 months) include age, OR = 2.40 [95% CI 1.08–5.37] for those aged 80 years and above, urban respondents, OR = 0.6 [95%CI 0.38–0.94], HIV-positive respondents, OR = 0.33 [95%CI 0.18–0.59], and better health. To understand the meaning of these finding, further investigation should examine (a) how best to define and measure older persons’ health-care service needs and (b) older persons’ decision-making processes around the timing of their access to health-care facilities.
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Ekuka, Godfrey, Ismael Kawooya, Edward Kayongo, Ronald Ssenyonga, Frank Mugabe, Peter Awongo Chaiga, Andrew Nsawotebba, Hannock Tweya, and Rhona Mijumbi-Deve. "Pre-diagnostic drop out of presumptive TB patients and its associated factors at Bugembe Health Centre IV in Jinja, Uganda." African Health Sciences 20, no. 2 (July 22, 2020): 633–40. http://dx.doi.org/10.4314/ahs.v20i2.11.

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Background: Drop out of presumptive TB individuals before making a final diagnosis poses a danger to the individual and their community. We aimed to determine the proportion of these presumptive TB drop outs and their associated factors in Bugembe Health Centre, Jinja, Uganda. Methods: We used data from the DHIS2, presumptive and laboratory registers of Bugembe Health Centre IV for 2017. Descriptive statistics were used to summarize the population characteristics. A modified Poisson regression model via the generalized linear model (GLM) with log link and robust standard errors was used for bivariate and multivariate analysis. Results: Among the 216 registered presumptive TB patients who were less than 1% of patients visiting the outpatients’ department, 40.7% dropped out before final diagnosis was made. Age and HIV status were significantly associated with pre-diagnostic drop out while gender and distance from the health center were not. Conclusion: A high risk to individuals and the community is posed by the significant proportion of presumptive TB pa- tients dropping out before final diagnosis. Health systems managers need to consider interventions targeting young persons, male patients, HIV positive persons. Keywords: Tuberculosis (TB); Pre-diagnostic drop out; Presumptive TB; SORT IT.
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Eyongndi, David Tarh-Akong. "An appraisal of HIV and Aids (Anti-Discrimination) Act, 2014 and the tide of employment discrimination in Nigeria." Africa Nazarene University Law Journal 8, no. 1 (2020): 111–27. http://dx.doi.org/10.47348/anulj/v8/i1a5.

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Subjecting employees or applicants to a medical test to determine whether they are fit for employment and so pre-empt any liability that the employer may suffer owing to the unfitness of the employer has become a prevalent practice. However, a trend has developed in terms of which employers subject employees to medical tests to use the outcome as a reason to discriminate against them and terminate their employment. Testing positive for HIV/AIDS is one such outcome where the status of the employee, despite their right to be free from discrimination, has been used to terminate their employment. This is the plight that persons living with HIV/AIDS (PLW HIV/AIDS) must suffer at the hands of employers as they were being discriminated against based on their health status even though it did not affect their ability to discharge their duties. This situation led to discontentment which developed into serious pressure to protect PLW HIV/AIDS. To address the phenomenon, the legislature enacted the HIV and AIDS (Anti-Discrimination) Act 2014. This article adopts the desk-based methodology in appraising the provisions of the Anti-Discrimination Act to determine the extent to which the Act has dealt with the quagmire of employment discrimination against PLW HIV/AIDS in Nigeria. It also considers the challenges confronting the implementation of the Act. The Anti-Discrimination Act has criminalised termination of employment on account of the HIV/AIDS status of an employee and prohibits other forms of discrimination sequel to the status. The article concludes by making vital recommendations on how to implement the Act in a way that strikes a balance between curbing discrimination while promoting the employer’s business.
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Wandera, Bonnie, Nazarius Mbona Tumwesigye, Joaniter Immaculate Nankabirwa, David Kaawa Mafigiri, Rosalind M. Parkes-Ratanshi, Saidi Kapiga, Judith Hahn, and Ajay K. Sethi. "Efficacy of a Single, Brief Alcohol Reduction Intervention among Men and Women Living with HIV/AIDS and Using Alcohol in Kampala, Uganda: A Randomized Trial." Journal of the International Association of Providers of AIDS Care (JIAPAC) 16, no. 3 (May 23, 2016): 276–85. http://dx.doi.org/10.1177/2325957416649669.

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We evaluated the efficacy of a brief motivational intervention (MI) counseling in reducing alcohol consumption among persons living with HIV/AIDS in Kampala, Uganda. Persons living with HIV/AIDS with Alcohol Use Disorders Identification Tool (AUDIT) score ≥3 points were randomized to either standardized positive prevention counseling alone or in combination with alcohol brief MI counseling. The mean change in AUDIT-C scores over 6 months was compared by treatment arm. The mean (standard deviation [SD]) AUDIT-C scores were 6.3 (2.3) and 6.8 (2.3) for control and MI arms ( P = .1) at baseline, respectively, and change in mean AUDIT-C score was not statistically different between arms over the 6 months ( P = .8). However, there was a statistically significant decrease in mean AUDIT-C score (−1.10; 95% confidence interval: −2.19 to −0.02, P = .046) among women in the MI arm. There was a nondifferential reduction in alcohol consumption overall, but MI appeared effective among women only. Studies with more than 1 counseling session and evaluation of gender differences in treatment response are needed.
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Wiersema, Janet J., Jacqueline Cruzado-Quiñones, Carmen G. Cosme Pitre, and Alison O. Jordan. "Client Outcomes From a Multilevel Intervention to Support Persons Living With HIV and Returning to the Community After Incarceration in Puerto Rico." AIDS Education and Prevention 32, no. 3 (June 2020): 181–95. http://dx.doi.org/10.1521/aeap.2020.32.3.181.

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The twin epidemics of HIV and incarceration impact Puerto Rico, which has limited resources to address the social and structural determinants of health in incarcerated populations. A Special Programs of National Significance grant supported a Puerto Rican community-based organization to implement the evidence-informed Transitional Care Coordination intervention among incarcerated persons living with HIV, targeting changes at the individual, organization, and systems levels. After implementation (November 2015–July 2018; n = 69), 93.1% of eligible clients were linked to community-based HIV care, 86.3% remained in care for 6 months, and 78.6% remained for 12 months. A greater proportion reported consistent HIV care, ART adherence, food security, and transportation to access care. Integrating HIV case management with housing and employment services, and developing buy-in and collaboration from partners across systems of care, including after a natural disaster, led to positive client outcomes. This intervention shows promise for adaptation to other HIV care and service delivery systems.
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Kaleebu, Pontiano, Neil French, Cedric Mahe, David Yirrell, Christine Watera, Fred Lyagoba, Jessica Nakiyingi, et al. "Effect of Human Immunodeficiency Virus (HIV) Type 1 Envelope Subtypes A and D on Disease Progression in a Large Cohort of HIV‐1–Positive Persons in Uganda." Journal of Infectious Diseases 185, no. 9 (May 2002): 1244–50. http://dx.doi.org/10.1086/340130.

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King, Rachel, Eva Muhanguzi, Miriam Nakitto, Miriam Mirembe, Francis Xavier Kasujja, Daniel Bagiire, and Janet Seeley. "Mobility study of young women who exchange sex for money or commodities using Google Maps and qualitative methods in Kampala, Uganda." BMJ Open 11, no. 5 (May 2021): e043078. http://dx.doi.org/10.1136/bmjopen-2020-043078.

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ObjectivesWe aimed to assess mobility patterns and reasons for high mobility among young women engaged in sex work within a randomised controlled trial to gauge how mobility may hinder access to health services and enhance HIV risk in a highly vulnerable population.SettingParticipants were recruited from a clinic in Kampala, Uganda set up for women at high risk of HIV infection.ParticipantsAdolescent girls and young women engaged in sex for money and/or commodities are at particular risk in countries with high HIV prevalence and high fertility rates. High mobility increases exposure to HIV risk. Women participants were eligible for the parent study if aged 15–24 years, HIV negative and engaged in sex work. For this substudy, 34 qualitative interviews were held with 14 sex workers (6 HIV positive, 8 HIV negative), 6 health worker/policy makers, 3 peer educators, 5 ‘queen mothers’ and 6 male partnersMeasuresParticipants used Google Maps to identify work venues at 12-month and 18-month study visits. We also conducted 34 interviews on mobility with: high-risk women, male partners, health workers and sex-worker managers. Topics included: distance, frequency and reasons for mobility. We used Python software to analyse mapping data.ResultsInterviews found in depth narratives describing lack of education and employment opportunities, violence, lack of agency, social, sexual and familial support networks and poverty as a complex web of reasons for high mobility among young sex workers.ConclusionsYoung women at high risk are highly mobile. Reasons for mobility impact access and retention to health services and research activities. Strategies to improve retention in care should be cognisant and tailored to suit mobility patterns.Trial registration numberNCT03203200.
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Nabaitu, Januario, Cissy Bachengana, and Janet Seeley. "Marital instability in a rural population in south-west Uganda: implications for the spread of HIV-1 infection." Africa 64, no. 2 (April 1994): 243–51. http://dx.doi.org/10.2307/1160982.

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The aim of this study was to examine people's beliefs about the causes of marital instability in a rural population cohort in south-west Uganda. Results from a baseline survey of HFV-1 infection in the cohort of over 4,000 adults (over 12 years old) showed a twofold increase in risk of infection in divorced or separated persons when compared with those who are married. A purposive sample of 134 respondents (seventy-two males, sixty-two females) selected to represent different ages, religions and marital status were asked in semi-structured interviews to comment on the reasons for continuing marital instability in their community. The most common reasons suggested for marital instability were sexual dissatisfaction, infertility, alcoholism and mobility. Interviewees stated that men and women would be more likely to stay with someone who satisfied them sexually. It was reported that infertility, particularly of the woman, would lead a couple to separate. Alcoholism was said to lead to neglect of family responsibilities and decreased sexual inhibitions, while occupational mobility was a common cause of infidelity. HIV infection was not mentioned as a direct cause of separation, but a small independent study revealed that seven out often couples separated on learning of a positive HIV test result of one or both partners. Marital instability is not uncommon in this population; there is evidence that HFV infection is making the situation worse.
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Isabirye, Nathan, Amara E. Ezeamama, Rachel Kyeyune-Bakyayita, Danstan Bagenda, Wafaie W. Fawzi, and David Guwatudde. "Dietary Micronutrients and Gender, Body Mass Index and Viral Suppression Among HIV-Infected Patients in Kampala, Uganda." International Journal of Maternal and Child Health and AIDS (IJMA) 9, no. 3 (August 13, 2020): 337–49. http://dx.doi.org/10.21106/ijma.362.

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Background: HIV/AIDS is a hallmark of immune suppression. Micronutrient deficiencies in diet and recurrent opportunistic infections play major roles in the lives of people living with HIV. Although benefits of providing adequate diet to HIV positive persons are well documented, the demand for key elements still remain unclear in particular settings, especially in low and middle-income countries. Methods: This was a cross sectional analysis of baseline data collected from HIV-infected adults initiating antiretroviral therapy, and who were enrolled in a multivitamin supplementation trial. A food frequency questionnaire was used and intake were obtained as a product of quantities consumed. Adequacy was calculated as the proportion of Recommended Dietary Allowances (RDA). A chi square test and logistic regression analysis were used at p-value 0.05 to show significant associations. Results: Mean intakes were above minimum requirements for analyzed micronutrients with the exception of Calcium and Iron. Participants who met RDA intakes were as follows: highest (? 80%) for Magnesium, Selenium, Zinc and Vitamins B2, B6, B9, C and E; moderate (50% to <80%) for Vitamins B3, and A; and lowest (?50%) for Iron (30%), Calcium (14.9%), Vitamins B12 and B1. Gender differences in met RDA were observed for Iron, Selenium, Zinc, Vitamins A, B1, B3 and E. In multivariable analyses, nutritional status and CD4 count had no influence on meeting RDA for majority of micronutrients such as magnesium, Selenium, B class vitamins (B1, B2, B3, B6, B9, B12), vitamin (A, C, and E), Zinc and Calcium, but not including iron. Conclusion and Global Health Implications: Diets consumed by the study participants were low in most protective nutrients (Iron, Calcium, Zinc, Vitamin A, B1, B3, and B12). This deficiency was more common among females than males, and irrespective of BMI or CD 4 count. Findings warrant further investigation on the impact and cost implications for suplementation interventions that target the elements lacking in the diets of people living with HIV in similar low-resourced settings. Key words: • Recommended Dietary Allowances • Micronutrients • Dietary intakes • Body Mass Index • CD4 cell count • HIV/AIDS • Uganda Copyright © 2020 Isabirye et al. Published by Global Health and Education Projects, Inc. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY 4.0) which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in this journal, is properly cited.
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Hunt, Bijou R., Rachel Anderson, Paarul Sinha, Hollyn Cetrone, and Nancy Glick. "481. Epidemic – Pandemic Impacts Inventory (EPII) Survey Results for Persons Living with HIV in Chicago’s West and Southwest Communities." Open Forum Infectious Diseases 7, Supplement_1 (October 1, 2020): S307—S308. http://dx.doi.org/10.1093/ofid/ofaa439.674.

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Abstract Background The rapid spread of COVID-19 in recent months has caused local and regional governments to enact protective measures that have hindered economies and imposed demanding restrictions on daily life. Households may be experiencing physical, psychological, social, and economic challenges due to these preventative measures. Populations with fewer resources and/or pre-existing conditions may be at higher risk for these negative, life-altering effects. Therefore, we investigated COVID-19 impact on daily life among persons living with HIV (PLH) in Chicago’s under-resourced, largely minority, west and southwest side communities. Methods We modified the EPII, a survey designed to measure pandemic disease impact over nine domains of life, to assess how COVID-19 affected PLH receiving outpatient HIV care. From 5/11–29/2020, participants (n=49) completed the survey online or over the phone and received a $10 grocery gift card. We present the proportion of respondents who reported that they or any household member was impacted by select survey items. Results More than half of respondents reported a household member getting laid off and/or furloughed (63%), increased mental health (45%) or sleep problems (51%), less physical activity (61%), and increased screen time (82%); 45% were unable to pay important bills. Positive changes included eating healthier foods (53%), more time for enjoyable activities (63%), more quality time with friends or family (65%), and paying more attention to personal health (76%). We observed differences by gender, age, and race/ethnicity over all domains (Table 1). Finally, 80% of those who participated in telehealth services were satisfied with their experience. Table 1. Conclusion Overall, respondents struggled with employment, emotional and physical health effects of COVID-19, yet also experienced aspects of positive life change. In the future, these results should be compared with results from a general population to determine whether PLH are disproportionately burdened. Regardless, COVID-19 has negatively impacted daily life for everyone, including PLH, and these individuals may need additional resources compared to their less resource-challenged counterparts. Disclosures All Authors: No reported disclosures
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Osode, Patrick C. "CASE NOTE." Journal of African Law 45, no. 2 (October 2001): 217–26. http://dx.doi.org/10.1017/s0221855301001717.

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DEFINING THE LIMITS OF PERMISSIBLE EMPLOYMENT DISCRIMINATION AGAINST PERSONS LIVING WITH HIV/AIDS IN SOUTH AFRICA: HOFFMAN V. SOUTH AFRICAN AIRWAYS [2000] 12 BLLR 1365.Perhaps the most positive and exciting aftermath of the apartheid era is the construction of the new South Africa upon the foundation of a Constitution and other legal instruments that are unanimous and unambiguous in two respects. The first is in their proscription of unfair discrimination and the second is in their permission of statutory and other measures aimed at eliminating the effects of past discrimination on those groups of persons who were at the receiving end of same. The provisions of these instruments as well as their tenor and spirit reveal an unmistakable national resolve to break from a culture of racial discrimination to a constitutionally protected culture of human rights for South Africans of all ages, classes and colours. Without doubt, the most important of those provisions is the equality clause of the Bill of Rights contained in the second chapter of the Constitution. This probably follows from a realization of the fact that equality is fundamental to “the maintenance and propagation of human rights in a democratic body politic, particularly in an acutely divided society” such as South Africa.
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Jones, Milissa U., Allahna L. Esber, Domonique Reed, Francis Kiweewa, Jonah Maswai, John Owuoth, Emmanuel Bahemana, et al. "1258. The Pregnancy Factor: Differences in the Prevalence of Depression Among Pregnant and Nonpregnant Sub-Saharan African Women Living with HIV." Open Forum Infectious Diseases 6, Supplement_2 (October 2019): S453. http://dx.doi.org/10.1093/ofid/ofz360.1121.

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Abstract Background In Sub-Saharan African (SSA) women living with HIV, pregnancy creates unique stressors that may induce or exacerbate depression. We described the prevalence of depression during the perinatal period among women living with HIV that became pregnant (P-WLWH) as compared with those that did not (NP-WLWH). Methods We analyzed data from WLWH, age < 45 years, across 11 HIV clinics in Kenya, Nigeria, Uganda, and Tanzania, within the African Cohort Study (AFRICOS). Depression screening was performed via the Center for Epidemiological Studies-Depression (CESD) scale at enrollment and every 6 months in the study. For these analyses, the CESD score was assessed during three periods in time. For P-WLWH, these periods were: (1) enrollment, (2) during pregnancy and (3) the study visit following delivery. For NP-WLWH, three sequential evaluations were analyzed, with visit 1 being enrollment. We compared the prevalence of depression between groups at each period using χ 2 analysis and calculated adjusted odds ratios (OR) using logistic regression for variables associated with positive depression screening (CESD score ≥16). Results There were 764 WLWH selected for analysis, including 164 P-WLWH and 600 NP-WLWH. At enrollment, P-WLWH tended to be younger than NP-WLWH (mean age=30 vs. 34, P < 0.01). Neither group differed significantly with respect to marital status, employment, education, viral load, or duration of HIV. The crude prevalence of depression during periods 1 thru 3 for P-WLWH and NP-WLWH was: 20% (in both groups, P = 0.99), 10% and 13% (P = 0.26), and 4% and 10% (P = 0.01), respectively (figure). P-WLWH had 74% lower odds [OR = 0.26 [0.09–0.75], P = 0.01] of positive depression screening during period 3 than NP-WLWH, when controlling for age, marital status, educational level, viral load, and duration of HIV. Conclusion Surprisingly, our analyses demonstrate P-WLWH were less likely to have positive screening for depression following their pregnancies. These findings may highlight the strength of comprehensive maternal health initiatives in SSA. Additionally, these women will be followed further longitudinally to evaluate patterns of depression in the months following pregnancy. Disclosures All authors: No reported disclosures.
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Assan Ninson, Enoch, and Heather Morgan. "The Recruitment, Enlistment, and Deployment of HIV-Positive Military Service Members: An Evaluation of South African and U.S. National, Alongside International, Policies." Military Medicine 186, no. 9-10 (August 28, 2021): 897–902. http://dx.doi.org/10.1093/milmed/usab167.

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ABSTRACT Introduction Since its detection in the early 1980s, HIV and AIDS have claimed 32.7 million lives. The HIV epidemic continues to plague the world with its most devastating effects felt in Eastern and Southern Africa. The exposure, vulnerability, and impact of HIV have been prominent among military personnel due to environmental, demographic, and socioeconomic characteristics. Policies have been developed to mitigate its exposure, vulnerability, and impact on the military. However, there are disparities across these policies, especially on recruitment, enlistment, and deployment. These contentions inspired this evaluation, which was designed to provide vital information and insights for militaries developing new HIV policies, for example, the Ghana Armed Forces (GAF). Materials and Methods Content analyses of key documents and secondary resources from South Africa (SA), the USA, and the United Nations and International Labour Organizations were undertaken. The key documents evaluated included HIV and AIDS policies of the SA National Defence Force (SANDF), the U.S. DoD, UN Department of Peacekeeping Operations, and International Labour Organization (ILO); national HIV and AIDS policies; and legislations of SA and the USA. Results The SANDF policy permits the recruitment of HIV-positive applicants while the U.S. DoD policy does not. Mandatory pre-employment health assessments including HIV testing is conducted for prospective applicants. Again, discrimination against persons living with HIV (PLHIV) is discouraged by national policies and legislations of both countries and the ILO policy. At the same time, the SA national policy permits discrimination based on requirement of the job.On deployment, the SANDF policy explicitly permits deployment of HIV-positive service members, while the U.S. DoD policy cautiously does so. Both policies support mandatory pre-deployment health assessments in line with the UN peacekeeping policy and medical standards even though voluntary confidential HIV counseling and testing is recommended by the UN. All HIV-positive service members are retained and offered treatment and care services; however, the U.S. DoD policy retires unfit service members after 12 months of consecutive non-deployment. Further, the UN policy repatriates service members with pre-existing medical conditions and pays no compensation for death, injury, or illness, which is due to pre-existing medical conditions or not mission-related. Conclusions First, the contents of the military policies are not very diverse since most militaries do not enlist or deploy PLHIV except few countries including SA. Implementation and interpretation is however inconsistent. Some militaries continue to exclude PLHIV despite the existence of policies that permit their inclusion. Second, discrepancies exist among the military policies, national legislations, and international policies. The UN policy is not coherent and empowers the military to exclude PLHIV. Also, potential costs to be incurred, in the form of compensation and repatriation, seem to be a major factor in the decision to deploy HIV-positive service members. Harmonization of military HIV policies to ensure uniform standards, interpretation, and implementation and the coherence of the UN policy are essential to guide countries developing new policies, for example, GAF.
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Marais, Suzaan, Fiona V. Cresswell, Raph L. Hamers, Lindsey H. M. te Brake, Ahmad R. Ganiem, Darma Imran, Ananta Bangdiwala, et al. "High dose oral rifampicin to improve survival from adult tuberculous meningitis: A randomised placebo-controlled double-blinded phase III trial (the HARVEST study)." Wellcome Open Research 4 (December 2, 2019): 190. http://dx.doi.org/10.12688/wellcomeopenres.15565.1.

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Background: Tuberculous meningitis (TBM), the most severe form of tuberculosis (TB), results in death or neurological disability in >50%, despite World Health Organisation recommended therapy. Current TBM regimen dosages are based on data from pulmonary TB alone. Evidence from recent phase II pharmacokinetic studies suggests that high dose rifampicin (R) administered intravenously or orally enhances central nervous system penetration and may reduce TBM associated mortality. We hypothesize that, among persons with TBM, high dose oral rifampicin (35 mg/kg) for 8 weeks will improve survival compared to standard of care (10 mg/kg), without excess adverse events. Protocol: We will perform a parallel group, randomised, placebo-controlled, double blind, phase III multicentre clinical trial comparing high dose oral rifampicin to standard of care. The trial will be conducted across five clinical sites in Uganda, South Africa and Indonesia. Participants are HIV-positive or negative adults with clinically suspected TBM, who will be randomised (1:1) to one of two arms: 35 mg/kg oral rifampicin daily for 8 weeks (in combination with standard dose isoniazid [H], pyrazinamide [Z] and ethambutol [E]) or standard of care (oral HRZE, containing 10 mg/kg/day rifampicin). The primary end-point is 6-month survival. Secondary end points are: i) 12-month survival ii) functional and neurocognitive outcomes and iii) safety and tolerability. Tertiary outcomes are: i) pharmacokinetic outcomes and ii) cost-effectiveness of the intervention. We will enrol 500 participants over 2.5 years, with follow-up continuing until 12 months post-enrolment. Discussion: Our best TBM treatment still results in unacceptably high mortality and morbidity. Strong evidence supports the increased cerebrospinal fluid penetration of high dose rifampicin, however conclusive evidence regarding survival benefit is lacking. This study will answer the important question of whether high dose oral rifampicin conveys a survival benefit in TBM in HIV-positive and -negative individuals from Africa and Asia. Trial registration: ISRCTN15668391 (17/06/2019)
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Marais, Suzaan, Fiona V. Cresswell, Raph L. Hamers, Lindsey H. M. te Brake, Ahmad R. Ganiem, Darma Imran, Ananta Bangdiwala, et al. "High dose oral rifampicin to improve survival from adult tuberculous meningitis: A randomised placebo-controlled double-blinded phase III trial (the HARVEST study)." Wellcome Open Research 4 (August 25, 2020): 190. http://dx.doi.org/10.12688/wellcomeopenres.15565.2.

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Background: Tuberculous meningitis (TBM), the most severe form of tuberculosis (TB), results in death or neurological disability in >50%, despite World Health Organisation recommended therapy. Current TBM regimen dosages are based on data from pulmonary TB alone. Evidence from recent phase II pharmacokinetic studies suggests that high dose rifampicin (R) administered intravenously or orally enhances central nervous system penetration and may reduce TBM associated mortality. We hypothesize that, among persons with TBM, high dose oral rifampicin (35 mg/kg) for 8 weeks will improve survival compared to standard of care (10 mg/kg), without excess adverse events. Protocol: We will perform a parallel group, randomised, placebo-controlled, double blind, phase III multicentre clinical trial comparing high dose oral rifampicin to standard of care. The trial will be conducted across five clinical sites in Uganda, South Africa and Indonesia. Participants are HIV-positive or negative adults with clinically suspected TBM, who will be randomised (1:1) to one of two arms: 35 mg/kg oral rifampicin daily for 8 weeks (in combination with standard dose isoniazid [H], pyrazinamide [Z] and ethambutol [E]) or standard of care (oral HRZE, containing 10 mg/kg/day rifampicin). The primary end-point is 6-month survival. Secondary end points are: i) 12-month survival ii) functional and neurocognitive outcomes and iii) safety and tolerability. Tertiary outcomes are: i) pharmacokinetic outcomes and ii) cost-effectiveness of the intervention. We will enrol 500 participants over 2.5 years, with follow-up continuing until 12 months post-enrolment. Discussion: Our best TBM treatment still results in unacceptably high mortality and morbidity. Strong evidence supports the increased cerebrospinal fluid penetration of high dose rifampicin, however conclusive evidence regarding survival benefit is lacking. This study will answer the important question of whether high dose oral rifampicin conveys a survival benefit in TBM in HIV-positive and -negative individuals from Africa and Asia. Trial registration: ISRCTN15668391 (17/06/2019)
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Ter-Zakarian, Anna, Richard Barnes, Rebecca Kruse-Jarres, Doris Quon, Shannon Jackson, Linda Sun, and Annette von Drygalski. "Risk of Hypertension in Hemophilia Patients with a History of Inhibitors." Blood 136, Supplement 1 (November 5, 2020): 30–31. http://dx.doi.org/10.1182/blood-2020-136133.

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Hemophilia is an X-linked bleeding disorder characterized by deficiencies of Factor VIII or IX. Hypertension in persons with hemophilia (PWH) appears to be more prevalent compared to the general population. A major complication of hemophilia remains the development of neutralizing antibodies (inhibitors) against infused clotting factor. It tends to occur within the first 50 exposure days and therefore mostly in children with severe hemophilia. Since inhibitor development is associated with high mortality and morbidity, their eradication with high dose clotting factor concentrates is critical and successful in the majority of patients. Recently a cohort study showed a positive association between presence of inhibitors in elderly patients and cardiovascular disease, although a small number of patients with inhibitors were included in that study (Sood SL, Blood Advances 2018). To date, the link between a history of inhibitors and hypertension has not been established. The primary purpose of our study was to evaluate the relationship between hypertension in PWH and a history of inhibitors, with the additional goals of investigating the association between hypertension and hemophilia type and viral status. In a retrospective review, clinical records were extracted for PWH aged 18 to 79 between 2003 and 2014 from four Hemophilia Treatment Centers in North America: Los Angeles Orthopaedic Hospital, University of California San Diego, Tulane University and University of British Columbia. We extracted demographic information on age and ethnicity, weight, height, hemophilia type and severity, inhibitor history, Hepatitis C (HCV; by serology) and Human Immunodeficiency Virus (HIV) status or reported history thereof and medication history. Primary outcomes were prevalence of hypertension stratified by inhibitor status, hemophilia type, and presence of viral coinfection. Blood pressure measurements were taken for the three clinic visits closest to the evaluation date. We fitted generalized additive models with a non-parametric spline function for age. The outcomes were hypertension (with a binary logit), systolic blood pressure (SBP) and diastolic BP (DBP). The models were adjusted for logBMI, type of hemophilia, severity, race/ethnicity, HCV and HIV. We plotted standardized curves generated by the models to compare trends in each outcome. A total of 691 PWH were included. Forty-four (6%) had a history of inhibitors, 533 had hemophilia type A (77%) and 157 had hemophilia type B (23%). HCV was positive in 419 patients (61%) and HIV in 128 patients (19%). There was no difference in the risk of hypertension between patients with or without a history of inhibitors. SBPs and DBSs were only analyzed for patients not on anti-hypertensives, and were not associated with a history of inhibitors (Fig. 1A). However, risk of hypertension was considerably higher among patients with Hemophilia B compared to patients with Hemophilia A (Fig. 1B). Hemophilia B patients were more likely to be categorized as hypertensive because both SBPs and DBPs were higher, especially in patients between 40 and 60 years of age. Finally, risk of hypertension was higher among those coinfected with both HCV and HIV (Fig. 1C). This large-scale study found no evidence that inhibitor history influenced the risk for hypertension or elevated BPs in PWH. Interestingly, Hemophilia B was associated with a higher risk of hypertension and higher BPs, similar to prior studies showing Hemophilia B had 1.87-fold higher odds of hypertension compared to Hemophilia A (von Drygalski A, Hypertension, 2013). Inhibitor development in Hemophilia B is very rare, which provides additional support that factors other than inhibitors play a role. Finally, our study showed coinfection with HIV and HCV was associated with higher hypertension risk, adding clarity to inconsistent findings on the association between hypertension and blood transmitted viral diseases in PWH. While there was no evidence that patients with a history of inhibitors have a higher risk of hypertension, our observations add to the continued efforts to elucidate the etiology of the hypertension in hemophilia and confirm that patients with Hemophilia B and/or viral infections may be at higher risk. These findings continue to inform medical care and also pave the way for additional studies to address physiological factors inherent to hemostasis and vascular pathology. Disclosures Kruse-Jarres: NovoNordisk: Other; CSLBehring and Genentech/Roche: Research Funding; Biomarin, Chugai, CSLBehring, and Genentech/Roche: Consultancy. Quon:Orthopaedic Institute for Children: Current Employment; Bayer: Honoraria; Shire/Takeda: Speakers Bureau; Genentech, Inc./F. Hoffmann-La Roche Ltd: Honoraria, Speakers Bureau; Octapharma: Honoraria; Novo Nordisk: Honoraria, Speakers Bureau; Bioverativ/Sanofi: Honoraria, Speakers Bureau; Biomarin: Honoraria, Speakers Bureau. Jackson:Octapharma, Takeda, Bayer, Roche and Pfizer: Honoraria; Bayer: Research Funding; Sanofi: Research Funding. von Drygalski:Hematherix Inc: Membership on an entity's Board of Directors or advisory committees, Other: Cofounder; superFVa; Joint Activity and Damage Examination (JADE) Ultrasound measurement tool: Patents & Royalties; Biomarin, Bioverativ/Sanofi-Genzyme, Novo Nordisk, Pfizer, Uniqure, Takeda: Consultancy.
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Nakalega, Rita, Nelson Mukiza, Henry Debem, George Kiwanuka, Ronald Makanga Kakumba, Robert Menge, Irene-Kinera Kagimu, et al. "Linkage to intensive adherence counselling among HIV-positive persons on ART with detectable viral load in Gomba district, rural Uganda." AIDS Research and Therapy 18, no. 1 (April 20, 2021). http://dx.doi.org/10.1186/s12981-021-00349-9.

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Abstract Background Antiretroviral therapy (ART) adherence is a primary determinant of sustained viral suppression, HIV transmission risk, disease progression and death. The World Health Organization recommends that adherence support interventions be provided to people on ART, but implementation is suboptimal. We evaluated linkage to intensive adherence counselling (IAC) for persons on ART with detectable viral load (VL). Methods Between January and December 2017, we conducted a retrospective chart review of HIV-positive persons on ART with detectable VL (> 1000 copies/ml), in Gomba district, rural Uganda. We abstracted records from eight HIV clinics; seven health center III’s (facilities which provide basic preventive and curative care and are headed by clinical officers) and a health center IV (mini-hospital headed by a medical doctor). Linkage to IAC was defined as provision of IAC to ART clients with detectable VL within three months of receipt of results at the health facility. Descriptive statistics and multivariable logistic regression analyses were used to evaluate factors associated with linkage to IAC. Results Of 4,100 HIV-positive persons on ART for at least 6 months, 411 (10%) had detectable VL. The median age was 32 years (interquartile range [IQR] 13–43) and 52% were female. The median duration on ART was 3.2 years (IQR 1.8–4.8). A total of 311 ART clients (81%) were linked to IAC. Receipt of ART at a Health Center level IV was associated with a two-fold higher odds of IAC linkage compared with Health Center level III (adjusted odds ratio [aOR] 1.78; 95% CI 1.00–3.16; p = 0.01). Age, gender, marital status and ART duration were not related to IAC linkage. Conclusions Linkage to IAC was high among persons with detectable VL in rural Uganda, with greater odds of linkage at a higher-level health facility. Strategies to optimize IAC linkage at lower-level health facilities for persons with suboptimal ART adherence are needed.
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Namagga, Jane Kasozi, Godfrey Zari Rukundo, Vallence Niyonzima, and Joachim Voss. "Depression and HIV associated neurocognitive disorders among HIV infected adults in rural southwestern Uganda: a cross-sectional quantitative study." BMC Psychiatry 21, no. 1 (July 12, 2021). http://dx.doi.org/10.1186/s12888-021-03316-w.

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Abstract Background HIV-Associated Neurocognitive Disorder (HAND remains a pronounced consequence of HIV/AIDS despite improved life expectancies. This is often associated with several dysfunctions such as decrease of attention, mood alterations and psychomotor disturbances. Many factors, including age, gender, employment status, and psychiatric disorders, have been associated with HAND. Among the associated psychiatric disorders, depression is often more prevalent. It can influence not only quality of life, relationships and employment but also adherence to medical care. We assessed the prevalence of depression and its association with HAND among people living with HIV in rural Southwestern Uganda. Methods This was a cross-sectional study that used Beck Depression Inventory-1 and International HIV Dementia Scale to assess depression and HAND respectively. We defined depression with a score of > 10 and HAND with a cutoff score of ≤10. We conducted data analysis using STATA version 12, and Pearson Chi-square test and logistic regression to determine associations between depression and HAND. The level of statistical significance was set at p ≤ 0.05. Ethical approval and administrative clearance were obtained from relevant bodies. Results Of the 393 participants assessed for depression and HAND, 27% had depression and 58.3% screened positive for HAND. All levels of depression were more prevalent among female participants. We found a significant association between depression and HIV associated neurocognitive disorders (χ2 (3) = 9.0538 p = 0.029). Conclusion Our findings confirmed a high prevalence of depression in individuals with HAND which is a major component of the disease burden.
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Kiragga, Agnes N., Elizabeth Nalintya, Bozena Morawski, Joanita Kigozi, Benjamin J. Park, Jonathan E. Kaplan, David R Boulware, David B. Meya, and Yukari C. Manabe. "Nurse-targeted care for HIV positive persons with CD4<100 improved time to ART initiation and retention in Uganda." Implementation Science 10, S1 (August 14, 2015). http://dx.doi.org/10.1186/1748-5908-10-s1-a81.

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Okoboi, Stephen, Barbara Castelnuovo, Jean-Pierre Van Geertruyden, Oucul Lazarus, Lung Vu, Sam Kalibala, Yvonne Kamara, Perez N. Ochanda, Rachel King, and Andrew Mujugira. "Cost-Effectiveness of Peer-Delivered HIV Self-Tests for MSM in Uganda." Frontiers in Public Health 9 (March 17, 2021). http://dx.doi.org/10.3389/fpubh.2021.651325.

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Introduction: Distribution of HIV self-testing (HIVST) kits through MSM peer networks is a novel and effective strategy to increase HIV testing coverage in this high-risk population. No study has evaluated the cost or cost effectiveness of peer distribution of HIVST strategies among MSM in sub-Saharan Africa.Methods: From June to August 2018, we conducted a pilot study of secondary MSM peer HIVST kit distribution at The AIDS Support Organization at Entebbe and Masaka. We used an ingredients approach to estimate the cost of MSM peer HIVST kit distribution relative to standard-of-care (SOC) hotspot testing using programme expenditure data reported in US dollars. The provider perspective was used to estimate incremental cost-effective ratios per HIV infection averted using the difference in HIV annual transmission rates between MSM with HIV who knew their status and were not virologically suppressed and MSM with HIV who did not know their status.Results: We enrolled 297 participants of whom 150 received MSM peer HIVST kit distribution (intervention group) and 147 received TASO standard of care HIV testing (control group). Provider cost for the intervention was $2,276 compared with $1,827 for SOC during the 3-month study period. Overall, the intervention resulted in higher HIV positivity yield (4.9 vs. 1.4%) and averted more HIV infections per quarter (0.364 vs. 0.104) compared with SOC. The cost per person tested was higher for the intervention compared to SOC ($15.90 vs. $12.40). Importantly, the cost per new HIV diagnosis ($325 vs. $914) and cost per transmission averted ($6,253 vs. $ 17,567) were lower for the intervention approach relative to SOC. The incremental cost per HIV transmission averted by the self-testing program was $1,727. The incremental cost to providers per additional HIV-positive person identified by the intervention was $147.30.Conclusion: The intervention strategy was cost-effective, and identified more undiagnosed HIV infections than SOC hotspot testing at a cost-effectiveness threshold of US $2,129. Secondary distribution of HIVST kits through peers should further be evaluated with longer duration aimed at diagnosing 95% of all persons with HIV by 2030; the first UNAIDS 95-95-95 target.
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"Erratum to How Follow-Up Counseling Increases Linkage to Care Among HIV-Positive Persons Identified Through Home-Based HIV Counselling and Testing: A Qualitative Study in Uganda." SAGE Open 10, no. 1 (January 2020): 215824402090809. http://dx.doi.org/10.1177/2158244020908098.

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Zawedde-Muyanja, Stella, Achilles Katamba, Adithya Cattamanchi, Barbara Castelnuovo, and Yukari C. Manabe. "Patient and health system factors associated with pretreatment loss to follow up among patients diagnosed with tuberculosis using Xpert® MTB/RIF testing in Uganda." BMC Public Health 20, no. 1 (December 2020). http://dx.doi.org/10.1186/s12889-020-09955-0.

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Abstract Background In 2018, Uganda started only 65% of persons with incident tuberculosis on treatment. Pretreatment loss to follow up is an important contributor to suboptimal treatment coverage. We aimed to describe the patient and health facility-level characteristics associated with pretreatment loss to follow up among patients diagnosed with pulmonary tuberculosis at public health facilities in Uganda. Methods At ten public health facilities, laboratory register data was used to identify patients aged ≥ 15 years who had a positive Xpert®MTB/RIF test. Initiation on TB treatment was ascertained using the clinical register. Factors associated with not being initiated on TB treatment within two weeks of diagnosis were examined using a multilevel logistic regression model accounting for clustering by health facility. Results From January to June 2018, 510 patients (61.2% male and 31.5% HIV co-infected) were diagnosed with tuberculosis. One hundred (19.6%) were not initiated on TB treatment within 2 weeks of diagnosis. Not having a phone number recorded in the clinic registers (aOR 7.93, 95%CI 3.93–13.05); being HIV-infected (aOR 1.83; 95% CI: 1.09–3.26) and receiving care from a high volume health facility performing more than 12 Xpert tests per day (aOR 4.37, 95%CI 1.69–11.29) and were significantly associated with pretreatment loss to follow up. Conclusion In public health facilities in Uganda, we found a high rate of pretreatment loss to follow up especially among TBHIV co-infected patients diagnosed at high volume health facilities. Interventions to improve the efficiency of Xpert® MTB/RIF testing, including monitoring of the TB care cascade should be developed and implemented.
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Idindili, Boniphace, Majige Selemani, Fakihi Bakar, Sumaiyya G. Thawer, Abdallah Gumi, Mwifadhi Mrisho, Amos Kahwa, and Julius J. Massaga. "Enhancing HIV status disclosure and partners’ testing through counselling in Tanzania." Tanzania Journal of Health Research 17, no. 3 (July 16, 2015). http://dx.doi.org/10.4314/thrb.v17i3.4.

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Background: In Tanzania HIV Testing and Counselling (HTC) is being implemented through voluntary counselling and testing (VCT), provider initiated counselling and testing (PITC) and work place counselling and testing (HTC). Within these programmes, HIV status disclosure is emphasized. However, among persons who test HIV positive, many do not disclose their status to their partners and social networks. However, data are lacking on the effectiveness of the different HTC strategies on HIV positive status disclosure.Objective: To investigate which of the three HIV Testing and Counselling (HTC) strategies: Voluntary Counselling and Testing (VCT), Provider Initiated Counselling and Testing (PITC) and work place Counselling and testing is associated with improved HIV-positive status disclosure in Eastern Tanzania.Methods: Structured interviews were conducted with 455 newly diagnosed HIV-positive clients at 6 HTC sites during enrolment and at three months follow-up to collect data on disclosure status.Results: We found that PITC strategy attended a relatively higher proportion of clients 182/455(40.1%) as compared to VCT 169/455 (37.1%) and work place HTC strategies 104/455(22.9%) respectively. Among clients, about one third 130/455(28.6%) were found to be HIV-positive. HIV status disclosure rates were variable and were in order of preference of disclosing to family members 86/130(66.2 %), followed by relatives 74/130(56.9%) and sexual partners 71/130(54.6%). A high proportion of participants 77/130(59.2%) experienced violence acts from sexual partners in form of stigma and discrimination, abuse, divorce and termination from employment. In the multivariate logistic regression, disclosure to sexual partners was associated with violence acts of about two times higher (Disclosure to Partners OR=1.89) when compared to the group that did not disclose to their partners.Conclusion: PITC strategy was found to result into higher rates of HIV positive status disclosure when compared to VCT and work place HTC strategies. Stigma, discrimination and violence acts are still prevalent in Tanzania and discourages HIV positive status disclosure. Based on these findings, there is an urgent need of promoting public education on HIV transmission, prevention and treatment and enhancing strategies to reduce risky sexual behaviour and increase condom use.
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36

Rukundo, Godfrey Zari, Richard Stephen Mpango, Wilber Ssembajjwe, Kenneth D. Gadow, Vikram Patel, and Eugene Kinyanda. "Prevalence and risk factors for youth suicidality among perinatally infected youths living with HIV/AIDS in Uganda: the CHAKA study." Child and Adolescent Psychiatry and Mental Health 14, no. 1 (October 24, 2020). http://dx.doi.org/10.1186/s13034-020-00348-0.

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Abstract Background Research from high income countries indicates that suicide is a major mental health care concern and a leading cause of preventable deaths among children and adolescents. Proper assessment and management of youth suicidality is crucial in suicide prevention, but little is known about its prevalence and associated risk factors in Sub-Saharan Africa. In low income countries there is an increased risk of suicide among persons with HIV/AIDS even in the presence of the highly active antiretroviral therapy. Objective To determine the prevalence of and risk factors for youth suicidality among perinatally infected youth living with HIV/AIDS in Uganda. Methods We studied 392 HIV positive children (5–11 years) and adolescents (12–17 years) and their caregivers in Kampala and Masaka districts. Caregivers were administered the suicide assessment section of the MINI International Psychiatric Interview. Socio-demographic characteristics, psychiatric diagnoses, and psychosocial and clinical factors were assessed and suicidality (suicidal ideation and or suicidal attempt) was the outcome variable. Logistic regression was used to calculate odds ratios adjusting for study site and sex at 95% confidence intervals. Results Caregivers reported a suicidality rate of 10.7% (CI 8–14.1) in the past one month with higher rates among urban female (12.4%, CI 8.6–17.7) than male (8.7%, CI 5.4–13.8) youth. Lifetime prevalence of attempted suicide was 2.3% (n = 9, CI 1.2–4.4) with the highest rates among urban female youth. Among children, caregivers reported a lifetime prevalence of attempted suicide of 1.5%. The self-reported rate of attempted suicide in the past month was 1.8% (n = 7, CI 0.8–3.7) with lifetime prevalence of 2.8% (n = 11, CI 1.6–5.0). The most common methods used during suicide attempts were cutting, taking overdose of HIV medications, use of organophosphates, hanging, stabbing and self-starvation. Clinical correlates of suicidality were low socioeconomic status (OR = 2.27, CI 1.06–4.87, p = 0.04), HIV felt stigma (OR = 2.10, CI 1.04–3.00, p = 0.02), and major depressive disorder (OR = 1.80, CI 0.48–2.10, p = 0.04). Attention-deficit/hyperactivity disorder was protective against suicidality (OR = 0.41, CI 0.18–0.92, p = 0.04). Conclusion The one-month prevalence of suicidality among CA-HIV was 10.7%.
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37

Broady, Timothy. "Resilience across the Continuum of Care." M/C Journal 16, no. 5 (August 28, 2013). http://dx.doi.org/10.5204/mcj.698.

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Who Are Carers? A carer is any individual who provides unpaid care and support to a family member or friend who has a disability, mental illness, drug and/or alcohol dependency, chronic condition, terminal illness or who is frail. Carers come from all walks of life, cultural backgrounds and age groups. For many, caring is a 24 hour-a-day job with emotional, physical and financial impacts, with implications for their participation in employment, education and community activities. Carers exist in all communities, including amongst Aboriginal communities, those of culturally and linguistically diverse backgrounds, amongst Gay, Lesbian, Bisexual, Transgender, Intersex communities, and throughout metropolitan, regional and rural areas (Carers NSW). These broad characteristics mean that caring occurs across a wide variety of situations and care responsibilities can impact an even wider group of people. The ubiquitous nature of informal care warrants its consideration as a major social issue, as well as the potential impacts that these roles can have on carers in both short and long term contexts. Caring for a loved one is often an unseen component of people’s domestic lives. As will be outlined below, the potentially burdensome nature of care can have negative influences on carers’ wellbeing. As such, factors that can enhance the resilience of carers in the face of such adversity have been widely investigated. This being said, individual differences exist in carers’ responses to their caring responsibilities. The caring experience can therefore be argued to exist on a continuum, from the adversity in relation to stressful challenges through to prosperity in light of their caring responsibilities. By considering the experience of care as existing along this continuum, the place of resilience within people’s domestic spaces can be viewed as a mechanism towards identifying and developing supportive practices. Negative Impacts of Care A significant body of research has identified potential negative impacts of caring. Many of the most commonly cited outcomes relate to negative effects on mental health and/or psychological functioning, including stress, anxiety and depression (e.g. Baker et al.; Barlow, Cullen-Powell and Cheshire; Cheshire, Barlow and Powell; Dunn et al.; Gallagher et al.; Hastings et al.; Lach et al.; Singer; Sörensen et al.; Vitaliano, Zhang and Scanlan; Whittingham et al.; Yamada et al.). These feelings can be exacerbated when caring responsibilities become relentlessly time consuming, as demonstrated by this comment from a carer of a person with dementia: “I can’t get away from it” (O'Dwyer, Moyle and van Wyk 758). Similarly, emotional responses such as sorrow, grief, anger, frustration, and guilt can result from caring for a loved one (Heiman; Whittingham et al.). Negative emotional responses are not necessarily a direct result of caring responsibilities as such, but an understanding of the challenges faced by the person requiring their care. The following quote from the carer of a child with autism exemplifies the experience of sorrow: “It was actually the worst day of our lives, that was the day we came to terms with the fact that we had this problem” (Midence and O’Neill 280). Alongside these psychological and emotional outcomes, physical health may also be negatively impacted due to certain demands of the caring role (Lach et al.; Sörensen et al.; Vitaliano, Zhang and Scanlan). Outcomes such as these are likely to vary across individual caring circumstances, dictated by variables such as the specific tasks required of the carer, and individual personality characteristics of both the carer and the person for whom they care. Nevertheless, an awareness of these potential outcomes is particularly important when considering the place of resilience in the domestic space of individuals caring for a loved one. This conceptualisation of caring as being a burdensome task reflects many publicly held perceptions. If caring is widely viewed as compromising carers’ wellbeing, then there is likely to be an increased likelihood of carers viewing themselves as victims. This is particularly true amongst children and adolescents with caring responsibilities, since young people are most susceptible to having their personal identities shaped by others’ perceptions (Andreouli, Skovdal and Campbell). Resilience in Caring Adversity Despite the widely acknowledged potential for caring to have negative consequences for carers, it must be noted that the occurrence of these outcomes are not inevitable. In fact, much of the research that has identified increased stress amongst carers also finds that the majority cope well with the demands of their role (Barnett et al.). These carers have been considered by many researchers to demonstrate resilience (e.g. Barnett et al.; O'Dwyer, Moyle and van Wyk). The ability to respond positively despite exposure to risk or adversity is a key feature of most definitions of resilience (Luthar, Cicchetti and Becker; Masten and Obradović; Zauszniewski, Bekhet and Suresky). Resilience in this context can thus be defined as a psychological process that facilitates healthy functioning in response to intense life stressors (Johnson et al.). Since caring experiences are likely to continue for an extended period of time, resilience is likely to be necessary on an ongoing basis, rather than in response to a single traumatic event. A resilient carer is therefore one who is able to effectively and adaptively cope with extenuating pressures of caring for a loved one. This involves the presence of personal, social, familial, or institutional protective factors that enable carers to resist stress (Kaplan et al.). For example, support from health professionals, family, or community has been found to effectively support carers in coping with their role (Bekhet, Johnson and Zauszniewski; Gardiner and Iarocci; Heiman; Whittingham et al.). The benefit of support networks in assisting carers to cope in their role is widely reported in the associated research, reinforced by many examples such as the following from a carer of a person with dementia: “It’s a social thing, like, I’ve got friends on there… I find that is my escape” (O'Dwyer, Moyle and van Wyk 758). At an individual level, those who demonstrate resilient in the face of adversity demonstrate optimistic or hopeful outlooks (Ekas, Lickenbrock and Whitman; Lloyd and Hastings; Whittingham et al.), while simultaneously holding realistic expectations of the future (Rasmussen et al.; Wrosch, Miller, et al.; Wrosch, Scheier, et al.). Such attitudes are particularly significant amongst people caring for family members or friends with disabilities or illnesses. The following attitude held by a carer of a child with cerebral palsy exemplifies this optimistic outlook: “I look at the glass half full and say that “well, it’s only his walking, everything else is fine”. “So, get over [it] and deal with it” (Whittingham et al. 1451). Those who cognitively process information, rather than reacting in a highly emotion way have also been found to cope better (Bekhet, Johnson and Zauszniewski; Heiman; Monin et al.; Pennebaker, Mayne and Francis), as have those with a greater sense of self-efficacy or an internal locus of control (Bekhet, Johnson and Zauszniewski; Kuhn and Carter). However effective these coping strategies prove to be, this is unlikely to provide the full picture of caring experiences, or the place of resilience within that space. Associating resilience with adversity presumes a consensus on what constitutes adversity. Taking the typical approach to investigating resilience amongst carers risks making undue assumptions of the nature of individual carers’ experiences – namely, that caring equates to adversity. The following paragraphs will outline how this is not necessarily the case. And furthermore, that the concept of resilience still has a place in considering informal caring, regardless of whether adversity is considered to be present. Benefits of Care While a great deal of evidence suggests that caring for a loved one can be a stressful experience, research has also demonstrated the existence of positive impacts of care. In many instances, carers not only cope, but also thrive in their caring roles (Turnbull et al.). Elements such as positive relationships within caring relationships can both challenge and strengthen individuals – factors that only exist due to the specific nature of the individual caring role (Bayat; Heiman). Such positive elements of the caring experience have been reflected in the literature, illustrated by quotes such as: “In some sense, this makes our family closer” (Bayat 709). Rather than viewing carers from a perspective of victimisation (which is particularly prominent in relation to children and young people with caring responsibilities), recognising the prevalence of positive wellbeing within this population provides a more nuanced understanding of the lived experiences of all carers (Aldridge). Reported benefits of caring tend to revolve around personal relationships, particularly in reference to parents caring for their children with special needs. Reflective of the parental relationship, carers of children with disabilities or chronic illnesses generally report feelings of love, joy, optimism, strength, enjoyment, and satisfaction with their role (Barnett et al.; Heiman). The views of such carers do not reflect an attitude of coping with adversity, but rather a perspective that considers their children to be positive contributors to carers’ quality of life and the wellbeing of the wider family (King et al.). This point of view suggests an additional dimension to resilience; in particular, that resilience in the relative absence of risk factors, can cause carers to flourish within their caring role and relationships. In addition to benefits in relationships, carers may also prosper through their own personal growth and development in the course of their caring (Knight). This includes factors such as the development of life skills, maturity, purpose, social skills, a sense of responsibility, and recognition – particularly amongst young people in caring roles (Earley, Cushway and Cassidy; Early, Cushway and Cassidy; Jurkovic, Thirkield and Morrell; Skovdal and Andreouli; Stein, Rotheram-Borus and Lester; Tompkins). Recognition of the potential personal benefits of caring for a loved one is not intended to suggest that the view of carers coping with adversity is universally applicable. While it is likely that individual caring situations will have an impact on the extent to which a carer faces adversity (e.g. intensity of caring responsibilities, severity of loved one’s impairment, etc.), it is important to recognise the benefits that carers can experience alongside any challenges they may face. Circumstances that appear adversarial may not be thought of as such by those within that context. Defining resilience as an ability to cope with adversity therefore will not apply to such contexts. Rather, the concept of resilience needs to incorporate those who not only cope, but also prosper. Carers who do not perceive their role as burdensome, but identify positive outcomes, can therefore be said to demonstrate resilience though contextually different from those coping with adversity. This is not to suggest that resilience is the sole contributing factor in terms of prospering in the caring role. We must also consider individual circumstances and nuances differ between carers, those they care for, interpersonal relationships, and wider caring situations. Continuum of Care Awareness of the range of impacts that caring can have on carers leads to a recognition of the broad spectrum of experience that this role entails. Not only do caring experiences exhibit large variations in terms of practical issues (such as functional capacities, or type and severity of illness, disability, or condition), they include carers’ diverse personal responses to caring responsibilities. These responses can reflect either positive or negative dimensions, or a combination of both (Faso, Neal-Beevers and Carlson). In this way, caring experiences can be conceptualised as existing along a continuum. At one end of the spectrum, experiences align with the traditional view of caring as a struggle with and over adversity. More specifically, carers experience burdens as a result of their additional caring responsibilities, with negative outcomes likely to occur. At the other end of the spectrum, however, carers prosper in the role, experiencing significant personal benefits that would not have been possible without the caring role. This continuum makes a case for an expanded approach to stress and coping models of resilience to include positive concepts and a benefit-orientated perspective (Cassidy and Giles). In contrast to research that has argued for a progression from stress and coping models to strengths-based approaches (e.g. Glidden, Billings and Jobe; Knight), the continuum of care acknowledges the benefits of each of these theoretical positions, and thus may prove more comprehensive in attempting to understand the everyday lived experiences of carers. The framework provided by a representation of a continuum allows for the individual differences in caring situations and carers’ personal responses to be acknowledged, as well as accounting for any changes in these circumstances. Further, the experience and benefits of resilience in different contextual spheres can be identified. The flexibility afforded by such an approach is particularly important in light of individual differences in the ways carers respond to their situations, their changing caring contexts, and their subsequent individual needs (Monin et al.; Walsh; Whittingham et al.). As the caring experience can be dynamic and fluctuate in both directions along the continuum, resilience may be seen as the mechanism by which such movement occurs. In line with stress and coping models, resilience can assist carers to cope with adversarial circumstances at that end of the continuum. Similarly, it may be argued that those who prosper in their caring role exhibit characteristics of resilience. In other words, it is resilience that enables carers to cope with adversity at one end of the continuum and also to prosper at the other. Furthermore, by supporting the development of resilient characteristics, carers may be assisted in shifting their experiences along the continuum, from adversity to prosperity. This view extends upon traditional approaches reported in the stress and coping literature by contending that caring experiences may progress beyond positions of coping with adversity, to a position where caring is not understood in terms of adversity at all, but rather in terms of benefits. The individual circumstances of any carer must be taken into consideration with this framework of resilience and the continuum of care. It is unrealistic to assume that all caring situations will allow for the possibility of reaching the end point of this continuum. Carers with particularly high demands in terms of time, resources, effort, or energy may not reach a stage where they no longer consider their caring role to involve any personal burden. However, the combination of a coping and strengths-based approach suggests that there is always the possibility of moving away from perceptions of adversity and further towards an attitude of prosperity. Implications for Supportive Practice From the perspective of this continuum of care, the protective factors and coping strategies identified in previous literature provide a valuable starting point for the facilitation of resilience amongst carers. Enhancing factors such as these can assist carers to move from situations of adversity towards experiences of prosperity (Benzies and Mychasiuk). Research has suggested that carers who are less analytical in their thinking and less optimistic about their personal situations may find particular benefit from support systems that assist them in redirecting their attention towards positive aspects of their daily lives, such as the benefits of caring outlined earlier (Monin et al.). The principle of focusing on positive experiences and reframing negative thoughts is thought to benefit carers across all levels of functioning and adaptive experience (Monin et al.). While those entrenched in more burdensome mindsets are likely to experience the greatest benefit from supportive interventions, there is still merit in providing similar supports to carers who do not appear to experience the similar experiences of burden, or demonstrate greater resilience or adaptation to their situation. The dynamic view of caring situations and resilience suggested by a continuum of care incorporates benefits of stress and coping models as well as strengths-based approaches. This has implications for supportive practice in that the focus is not on determining whether or not a carer is resilient, but identifying the ways in which they already are resilient (Simon, Murphy and Smith). For carers who experience their role through a lens of adversity, resilience may need to be purposefully fostered in order to better enable them to cope and develop through the ongoing stresses of their role. For carers at the other end of the spectrum, resilience is likely to take on a substantially different meaning. Under these circumstances, caring for a loved one is not considered a burdensome task; rather, the positive impact of the role is pre-eminent. This point of view suggests that carers are resilient, not only in terms of an ability to thrive despite adversity, but in prospering to the extent that adversity is not considered to exist. The attitudes and approaches of services, support networks, and governments towards carers should remain flexible enough to acknowledge the wide variety of caring circumstances that exist. The continuum of care provides a framework through which certain aspects of caring and variations in resilience can be interpreted, as well as the type of support required by individual carers. Furthermore, it must be noted that caring circumstances can change – either gradually or suddenly – with the extent to which carers experience adversity, coping or prosperity also changing. Any attempts to provide support to carers or acknowledge their resilience should demonstrate an awareness of the potential for such fluctuation. The fundamental view that carers always have the potential to move towards more positive outcomes has the potential to reframe perceptions of carers as victims, or as simply coping, to one that embraces the personal strengths and resilience of the individual. As such, carers can be supported when faced with adversity, and to flourish beyond that position. This in turn has the potential to safeguard against any detrimental effects of adversity that may arise in the future. References Aldridge, Jo. "All Work and No Play? Understanding the Needs of Children with Caring Responsibilities." Children & Society 22.4 (2008): 253-264. Andreouli, Eleni, Morten Skovdal, and Catherine Campbell. "‘It Made Me Realise That I Am Lucky for What I Got’: British Young Carers Encountering the Realities of Their African Peers." Journal of Youth Studies (2013): 1-16. Baker, Bruce L., et al. "Behavior Problems and Parenting Stress in Families of Three-Year-Old Children with and without Developmental Delays." American Journal on Mental Retardation 107.6 (2002): 433-44. Barlow, J. H., L. A. Cullen-Powell, and A. Cheshire. "Psychological Well-Being among Mothers of Children with Cerebral Palsy." Early Child Development and Care 176.3-4 (2006): 421-428. Barnett, Douglas, et al. "Building New Dreams: Supporting Parents' Adaptation to Their Child with Special Needs." Infants and Young Children 16.3 (2003): 184. Bayat, M. "Evidence of Resilience in Families of Children with Autism." Journal of Intellectual Disability Research 51.9 (2007): 702-714. Bekhet, Abir K., Norah L. Johnson, and Jaclene A. Zauszniewski. "Resilience in Family Members of Persons with Autism Spectrum Disorder: A Review of the Literature." Issues in Mental Health Nursing 33.10 (2012): 650-656. Benzies, Karen, and Richelle Mychasiuk. "Fostering Family Resiliency: A Review of the Key Protective Factors." Child and Family Social Work 14 (2009): 103-114. Carers NSW. Carers NSW Strategic Directions 2012-2015. 2012. Cassidy, Tony, and Melanie Giles. "Further Exploration of the Young Carers Perceived Stress Scale: Identifying a Benefit-Finding Dimension." British Journal of Health Psychology 18.3 (2013): 642-655. Cheshire, Anna, Julie H. Barlow, and Lesley A. Powell. "The Psychosocial Well-Being of Parents of Children with Cerebral Palsy: A Comparison Study." Disability and Rehabilitation 32.20 (2010): 1673-1677. Dunn, Michael E., et al. "Moderators of Stress in Parents of Children with Autism." Community Mental Health Journal 37.1 (2001): 39-52. Earley, Louise, Delia Cushway, and Tony Cassidy. "Children's Perceptions and Experiences of Care Giving: A Focus Group Study." Counselling Psychology Quarterly 20.1 (2007): 69-80. Early, Louise, Delia Cushway, and Tony Cassidy. "Perceived Stress in Young Carers: Development of a Measure." Journal of Child and Family Studies 15.2 (2006): 165-176. Ekas, Naomi V., Diane M. Lickenbrock, and Thomas L. Whitman. "Optimism, Social Support, and Well-Being in Mothers of Children with Autism Spectrum Disorder." Journal of Autism and Developmental Disorders 40.10 (2010): 1274-1284. Faso, Daniel J., A. Rebecca Neal-Beevers, and Caryn L. Carlson. "Vicarious Futurity, Hope, and Well-Being in Parents of Children with Autism Spectrum Disorder." Research in Autism Spectrum Disorders 7.2 (2013): 288-297. Gallagher, Stephen, et al. "Predictors of Psychological Morbidity in Parents of Children with Intellectual Disabilities." Journal of Pediatric Psychology 33.10 (2008): 1129-1136. Gardiner, Emily, and Grace Iarocci. "Unhappy (and Happy) in Their Own Way: A Developmental Psychopathology Perspective on Quality of Life for Families Living with Developmental Disability with and without Autism." Research in Developmental Disabilities 33.6 (2012): 2177-2192. Glidden, L. M., F. J. Billings, and B. M. Jobe. "Personality, Coping Style and Well-Being of Parents Rearing Children with Developmental Disabilities." Journal of Intellectual Disability Research 50.12 (2006): 949-962. Hastings, Richard P., et al. "Coping Strategies in Mothers and Fathers of Preschool and School-Age Children with Autism." Autism 9.4 (2005): 377-91. Heiman, Tali. "Parents of Children with Disabilities: Resilience, Coping, and Future Expectations." Journal of Developmental and Physical Disabilities 14.2 (2002): 159-171. Johnson, Douglas C., et al. "Development and Initial Validation of the Response to Stressful Experiences Scale." Military Medicine 176.2 (2011): 161-169. Jurkovic, GregoryJ, Alison Thirkield, and Richard Morrell. "Parentification of Adult Children of Divorce: A Multidimensional Analysis." Journal of Youth and Adolescence 30.2 (2001): 245-257. Kaplan, Carol P., et al. "Promoting Resilience Strategies: A Modified Consultation Model." Children & Schools 18.3 (1996): 158-168. King, G. A., et al. "A Qualitative Investigation of Changes in the Belief Systems of Families of Children with Autism or Down Syndrome." Child: Care, Health and Development 32.3 (2006): 353-369. Knight, Kathryn. "The Changing Face of the ‘Good Mother’: Trends in Research into Families with a Child with Intellectual Disability, and Some Concerns." Disability & Society 28.5 (2013): 660-673. Kuhn, Jennifer C., and Alice S. Carter. "Maternal Self-Efficacy and Associated Parenting Cognitions among Mothers of Children with Autism." American Journal of Orthopsychiatry 76.4 (2006): 564-575. Lach, Lucyna M., et al. "The Health and Psychosocial Functioning of Caregivers of Children with Neurodevelopmental Disorders." Disability and Rehabilitation 31.8 (2009): 607-18. Lloyd, T. J., and R. Hastings. "Hope as a Psychological Resilience Factor in Mothers and Fathers of Children with Intellectual Disabilities." Journal of Intellectual Disability Research 53.12 (2009): 957-68. Luthar, Suniya S., Dante Cicchetti, and Bronwyn Becker. "The Construct of Resilience: A Critical Evaluation and Guidelines for Future Work." Child Development 71.3 (2000): 543-62. Masten, Ann S., and Jelena Obradović. "Competence and Resilience in Development." Annals of the New York Academy of Sciences 1094.1 (2006): 13-27. Midence, Kenny, and Meena O’Neill. "The Experience of Parents in the Diagnosis of Autism: A Pilot Study." Autism 3.3 (1999): 273-85. Monin, Joan K., et al. "Linguistic Markers of Emotion Regulation and Cardiovascular Reactivity among Older Caregiving Spouses." Psychology and Aging 27.4 (2012): 903-11. O'Dwyer, Siobhan, Wendy Moyle, and Sierra van Wyk. "Suicidal Ideation and Resilience in Family Carers of People with Dementia: A Pilot Qualitative Study." Aging & Mental Health 17.6 (2013): 753-60. Pennebaker, James W., Tracy J. Mayne, and Martha E. Francis. "Linguistic Predictors of Adaptive Bereavement." Journal of Personality and Social Psychology 72.4 (1997): 863-71. Rasmussen, Heather N., et al. "Self-Regulation Processes and Health: The Importance of Optimism and Goal Adjustment." Journal of Personality 74.6 (2006): 1721-48. Simon, Joan B., John J. Murphy, and Shelia M. Smith. "Understanding and Fostering Family Resilience." The Family Journal 13.4 (2005): 427-36. Singer, George H. S. "Meta-Analysis of Comparative Studies of Depression in Mothers of Children with and without Developmental Disabilities." American Journal on Mental Retardation 111.3 (2006): 155-69. Skovdal, Morten, and Eleni Andreouli. "Using Identity and Recognition as a Framework to Understand and Promote the Resilience of Caregiving Children in Western Kenya." Journal of Social Policy 40.03 (2011): 613-30. Sörensen, Silvia, et al. "Dementia Care: Mental Health Effects, Intervention Strategies, and Clinical Implications." The Lancet Neurology 5.11 (2006): 961-73. Stein, Judith A., Mary Jane Rotheram-Borus, and Patricia Lester. "Impact of Parentification on Long-Term Outcomes among Children of Parents with Hiv/Aids." Family Process 46.3 (2007): 317-33. Tompkins, Tanya L. "Parentification and Maternal HIV Infection: Beneficial Role or Pathological Burden?" Journal of Child and Family Studies 16.1 (2007): 108-18. Turnbull, Ann P., et al. "Conceptualization and Measurement of Family Outcomes Associated with Families of Individuals with Intellectual Disabilities." Mental Retardation and Developmental Disabilities Research Reviews 13.4 (2007): 346-56. Vitaliano, Peter P., Jianping Zhang, and James M. Scanlan. "Is Caregiving Hazardous to One's Physical Health? A Meta-Analysis." Psychological Bulletin 129.6 (2003): 946-72. Walsh, Froma. "Family Resilience: A Framework for Clinical Practice." Family Process 42.1 (2003): 1-18. Whittingham, Koa, et al. "Sorrow, Coping and Resiliency: Parents of Children with Cerebral Palsy Share Their Experiences." Disability and Rehabilitation 35.17 (2013): 1447-52. Wrosch, Carsten, et al. "Giving Up on Unattainable Goals: Benefits for Health?" Personality and Social Psychology Bulletin 33.2 (2007): 251-65. Wrosch, Carsten, et al. "The Importance of Goal Disengagement in Adaptive Self-Regulation: When Giving Up Is Beneficial." Self and Identity 2.1 (2003): 1-20. Yamada, Atsurou, et al. "Emotional Distress and Its Correlates among Parents of Children with Pervasive Developmental Disorders." Psychiatry and Clinical Neurosciences 61.6 (2007): 651-57. Zauszniewski, Jaclene A., Abir K. Bekhet, and M. J. Suresky. "Resilience in Family Members of Persons with Serious Mental Illness." Nursing Clinics of North America 45.4 (2010): 613-26.
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