scholarly journals Engagement in HIV Care and Access to Cancer Treatment Among Patients With HIV-Associated Malignancies in Uganda

2019 ◽  
pp. 1-8
Author(s):  
Daniel H. Low ◽  
Warren Phipps ◽  
Jackson Orem ◽  
Corey Casper ◽  
Rachel A Bender Ignacio

PURPOSE Health system constraints limit access to HIV and cancer treatment programs in sub-Saharan Africa. Limited access and continuity of care affect morbidity and mortality of patients with cancer and HIV. We assessed barriers in the care cascade of comorbid HIV and cancer. PATIENTS AND METHODS Structured interviews were conducted with 100 adult patients with HIV infection and new diagnoses of cancer at the Uganda Cancer Institute. Participants completed follow-up questionnaires after 1 year to assess ongoing engagement with and barriers to care. RESULTS The median time from new-onset cancer symptoms to initiation of cancer care at the Uganda Cancer Institute was 209 days (interquartile range, 113 to 384 days). Persons previously established in HIV care waited less overall to initiate cancer care ( P = .04). Patients established in HIV care experienced shorter times from initial symptoms to seeking of cancer care ( P = .02) and from seeking of care to cancer diagnosis ( P = .048). Barriers to receiving care for HIV and cancer included difficulty traveling to multiple clinics/hospitals (46%), conflicts between HIV and cancer appointments (23%), prohibitive costs (21%), and difficulty adhering to medications (15%). Reporting of any barriers to care was associated with premature discontinuation of cancer treatment ( P = .003). CONCLUSION Patients with HIV-associated malignancies reported multiple barriers to receiving care for both conditions, although knowledge of HIV status and engagement in HIV care before presentation with malignancy reduced subsequent time to the start of cancer treatment. This study provides evidence to support creation and evaluation of integrated HIV and cancer care models.

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Barbara Hedge ◽  
Karrish Devan ◽  
Jose Catalan ◽  
Anna Cheshire ◽  
Damien Ridge

Abstract Background The introduction of effective antiretroviral treatment in the late 1990s led to the perception that HIV was a chronic but manageable condition. Nevertheless, stigma remains one of the major hurdles for people living with HIV (PLWH) to accessing healthcare and biomedical preventions. Thus, Fast Track Cities has set a target of zero HIV discrimination by 2030 as part of its strategy to end HIV transmission. Methods Fifty-three participants from the United Kingdom, including PLWH (n = 21, 40%), health and social care workers (n = 24, 45%), and charity workers and activists (n = 13, 25%), were recruited. Semi-structured interviews investigated stigma and discrimination, focusing on both before and after the widespread use of effective antiretroviral treatment in the late 1990s. Data were analysed using a thematic approach. Results Before effective antiretroviral treatment narratives were shaped by two main themes: 1) the media’s role in influencing public opinion and contributing to misunderstandings of HIV transmission; and 2) personal experiences of HIV-related stigma, which for PLWH included incidents of physical violence and aggression, as well as fears of their HIV status being publicised. Contemporary narratives on stigma experiences were organised around four themes: 1) discrimination in healthcare settings; 2) stigma amongst men who have sex with men (MSM); 3) stigma towards African and Afro-Caribbean PLWH; and 4) the limits of change in public HIV-related knowledge and attitudes. Contemporary narratives indicated a reduction in enacted stigma, but continued anticipation of discrimination and self-reported shame, particularly in MSM and African and Afro-Caribbean PLWH. Conclusion The nature of stigma against those with HIV has evolved. The intersection of PLWH and minority groups (e.g. MSM and African and Afro-Caribbean persons) may enhance anticipatory and internalised stigma, with some suggestion that this may contribute to reduced engagement in HIV care and prevention services. Our findings indicate the need for further research in this area, as well as proactive interventions with community groups to enhance knowledge of HIV.


Author(s):  
Steven Masiano ◽  
Edwin Machine ◽  
Mtisunge Mphande ◽  
Christine Markham ◽  
Tapiwa Tembo ◽  
...  

VITAL Start is a video-based intervention aimed to improve maternal retention in HIV care and adherence to antiretroviral therapy (ART) in Malawi. We explored the experiences of pregnant women living with HIV (PWLHIV) not yet on ART who received VITAL Start before ART initiation to assess the intervention’s acceptability, feasibility, fidelity of delivery, and perceived impact. Between February and September 2019, we conducted semi-structured interviews with a convenience sample of 34 PWLHIV within one month of receiving VITAL Start. The participants reported that VITAL Start was acceptable and feasible and had good fidelity of delivery. They also reported that the video had a positive impact on their lives, encouraging them to disclose their HIV status to their sexual partners who, in turn, supported them to adhere to ART. The participants suggested using a similar intervention to provide health-related education/counseling to people with long term conditions. Our findings suggest that video-based interventions may be an acceptable, feasible approach to optimizing ART retention and adherence amongst PWLHIV, and they can be delivered with high fidelity. Further exploration of the utility of low cost, scalable, video-based interventions to address health counseling gaps in sub-Saharan Africa is warranted.


Author(s):  
Melissa K. Ward ◽  
Yazmine de la Cruz ◽  
Sofia B. Fernandez ◽  
Gladys E. Ibañez ◽  
Michèle Jean-Gilles ◽  
...  

In Miami-Dade County, women with HIV (WWH) enrolled in Ryan White Program (RWP) services belong to groups that have historically faced structural barriers to care. To examine provider perceptions of WWH's barriers to care and elicit possible solutions, we conducted semi-structured interviews (n = 20) with medical case managers and human immunodeficiency virus (HIV) healthcare providers from medical case management sites serving WWH enrolled in the Miami-Dade RWP. Verbatim transcripts were analyzed thematically by two coders through an iterative process; disagreements were resolved through consensus. Barriers included lack of disclosure and stigma, additional psychosocial barriers to care, structural and logistical barriers, and negative interactions with health care providers. Participant suggestions to address these barriers included strategies that support women and foster individualized services that are responsive to their lived experiences and needs. Other solutions, such as those related to transportation, housing, and general funding for the RWP, will require advocacy and policy change.


2020 ◽  
pp. 103985622095646
Author(s):  
Justin Dwyer ◽  
Clare O’Callaghan ◽  
Margaret Ross

Objective: A ‘cancer care observation’ (CCO) empathy training is described. This study examined psychiatry trainees’ experience of CCO and cancer patients’ experience of being observed. Method: Trainees were paired with consenting patients undergoing cancer treatment; they observed a number of cancer treatment sessions and chronicled their experiences. The observations were discussed in supervision. Semi-structured interviews were conducted with trainees and observed patients. Observation journals and transcribed interviews were analysed using qualitative description. Results: Seven trainees participated. Three themes emerged: patients used trainees to support themselves while trainees struggled with role identities; CCO extends trainees’ professional awareness and can benefit patients; and staff reactions were mixed. Trainees developed wide-ranging, empathic insights into cancer and hospital care experiences. No patient regarded CCO as intrusive. Conclusions: Trainees garnered insights from CCO as they generated clinical hypotheses, learnt about professional boundaries and gained first-hand experience of unconscious mental processes based on their empathic connections. CCO lends itself to psychiatry and, potentially, other medical trainees.


2018 ◽  
Vol 40 (5) ◽  
pp. 944-965 ◽  
Author(s):  
Lorna McWilliams ◽  
Caroline Swarbrick ◽  
Janelle Yorke ◽  
Lorraine Burgess ◽  
Carole Farrell ◽  
...  

AbstractThe risk of living with dementia and, separately, cancer, increases exponentially with age. However, to date, there is a paucity of research investigating the experiences of people living with both these conditions. This study used semi-structured interviews to explore the decision-making and treatment options for people who live with both dementia and cancer. In total, ten people living with both dementia and cancer (aged 39–93 years) and nine family carers were interviewed. Braun and Clarke's approach to thematic analysis was used together with framework matrices to organise the data. In this article four sequential and descriptive themes are presented. ‘Reaching a diagnosis of cancer’ describes the vital role that family carers play in encouraging the person with dementia to seek an explanation for their presenting (undiagnosed cancer) symptoms to their general practitioner. ‘Adjusting to the cancer diagnosis when living with dementia’ outlines a variety of emotional and practical responses to receiving news of the diagnosis. ‘Weighing up the cancer treatment options’ highlights the different decisions and circumstances that family carers and people living with both dementia and cancer are faced with post-diagnosis. ‘Undergoing cancer treatment’ shares the finding that cancer treatment decision-making was not straightforward and that people living with both dementia and cancer would often forget about their cancer and what procedures they had been through.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
David Etoori ◽  
Brian Rice ◽  
Georges Reniers ◽  
Francesc Xavier Gomez-Olive ◽  
Jenny Renju ◽  
...  

Abstract Background Eliminating mother-to-child transmission of HIV (MTCT) in sub-Saharan Africa is hindered by limited understanding of HIV-testing and HIV-care engagement among pregnant and breastfeeding women. Methods We investigated HIV-testing and HIV-care engagement during pregnancy and breastfeeding from 2014 to 2018 in the Agincourt Health and Demographic Surveillance System (HDSS). We linked HIV patient clinic records to HDSS pregnancy data. We modelled time to a first recorded HIV-diagnosis following conception, and time to antiretroviral therapy (ART) initiation following diagnosis using Kaplan-Meier methods. We performed sequence and cluster analyses for all pregnancies linked to HIV-related clinic data to categorise MTCT risk period engagement patterns and identified factors associated with different engagement patterns using logistic regression. We determined factors associated with ART resumption for women who were lost to follow-up (LTFU) using Cox regression. Results Since 2014, 15% of 10,735 pregnancies were recorded as occurring to previously (51%) or newly (49%) HIV-diagnosed women. New diagnoses increased until 2016 and then declined. We identified four MTCT risk period engagement patterns (i) early ART/stable care (51.9%), (ii) early ART/unstable care (34.1%), (iii) late ART initiators (7.6%), and (iv) postnatal seroconversion/early, stable ART (6.4%). Year of delivery, mother’s age, marital status, and baseline CD4 were associated with these patterns. A new pregnancy increased the likelihood of treatment resumption following LTFU. Conclusion Almost half of all pregnant women did not have optimal ART coverage during the MTCT risk period. Programmes need to focus on improving retention, and leveraging new pregnancies to re-engage HIV-positive women on ART.


2020 ◽  
Vol 7 (Supplement_1) ◽  
pp. S513-S513
Author(s):  
Katrina M Byrd ◽  
Esther Henebeng ◽  
Meghan L McCarthy ◽  
Fizza S Gillani ◽  
Erica Hardy ◽  
...  

Abstract Background Prevention of mother to child transmission (PMTCT) of Human Immunodeficiency Virus (HIV) requires a comprehensive approach and understanding the cultural backgrounds of pregnant women living with HIV (PWLH). In Rhode Island (RI), 70% of women newly diagnosed with HIV are foreign-born (FB) despite only representing 14% of RI’s population. Understanding the similarities and differences of pregnancy characteristics and engagement in postpartum HIV care between United States born (USB) and FB women is needed to ensure PWLH remain engaged in care and that appropriate resources are provided to all women with HIV in our state to maintain successful PMTCT of HIV. Methods A retrospective review of pregnant women living with HIV and their HIV-exposed infants evaluated in our hospital system were analyzed from 2012-2019. Clinical data were derived from medical records. Association between country of origin and sociodemographic, clinical, or lab variables were evaluated using chi-square test. Results A total of 72 pregnancies in 64 PWLH were included. Median # of pregnancies were 9 per year, median age at delivery 33 years, 54% of PWLH Black or African American, 33% Hispanic; 67.1% FB, most (56%) from Sub-Saharan Africa. Sixty-one % (n=42) with detectable (> 20 copies/mL) viral load (VL) during pregnancy, 23% (n=15) at delivery, only 1 VL > 200 at delivery. Pregnancy complications seen in 51%; 60% delivered vaginally; most (74%) at term. Engagement in postpartum HIV care declined from 71% at 6 months to 37% at 24 months. There was also decline in engagement in HIV care for the HIV exposed infants- 89% presented to the initial visit their children, from 89% attending the initial visit to 69% attending their last. DCYF involvement was more likely to occur in USB women compared to FB (P < 0.05). Other comparisons between FB & USB women including adherence to care were insignificant. Conclusion USB PWLH are at higher risk of DCYF involvement compared to FB women. Investigation into this disparity is warranted, given the cultural and language differences between groups. Additional research to determine barriers to long-term postpartum follow up for women and their infants is urgently needed. Disclosures All Authors: No reported disclosures


2021 ◽  
Vol 42 ◽  
Author(s):  
Gladys Carmela Santos Falcón ◽  
Lili Ana Ordoñez Espinoza ◽  
María del Carmen Velandres Siles ◽  
Roberto Zegarra Chapoñan ◽  
Jhon Alex Zeladita Huaman

ABSTRACT Objective: To understand the experiences of parents of children with cancer who come from areas distant from Lima-Peru during the search for cancer treatment for their children. Method: A descriptive-exploratory qualitative approach study. Focus groups and semi-structured interviews were carried out. The sample consisted of 18 parents who come from remote areas from Lima who attended specialized hospitals. The qualitative analysis was of thematic content, proposed by Minayo. Results: Three categories emerged: Accessing cancer care in Lima hospitals; Having diverse personal experiences during their child’s treatment; and Reporting the socioeconomic and labor impact during their stay in Lima. Final considerations: Understanding these experiences could help health professionals to implement strategies of socioeconomic support to facilitate access to health services for children with cancer. Hospitals must guarantee the satisfaction of the basic needs of parents.


2020 ◽  
pp. 1412-1418
Author(s):  
Miriam Mutebi ◽  
Isaac Adewole ◽  
Jackson Orem ◽  
Kunuz Abdella ◽  
Olujimi Coker ◽  
...  

PURPOSE Standard treatment guidelines improve patient outcomes, including disease-specific survival, in cancer care. The African Cancer Coalition was formed in 2016 to harmonize cancer treatment guidelines for sub-Saharan Africa. METHODS The African Cancer Coalition collaborated with the National Comprehensive Cancer Network (NCCN) and the American Cancer Society to harmonize 46 cancer treatment guidelines for use in sub-Saharan Africa. Harmonization for each guideline was completed by a group of approximately 6-10 African cancer experts from a range of specialties and with representation across resource levels. Each working group was chaired by an African oncologist and included a member of the appropriate NCCN guidelines panel. Treatment recommendations from the parent guidelines were distinguished as options that are generally available and should be considered standard care in most of the region or as highly advanced options for which cost or other resources may limit widespread availability. Additional recommendations specific to sub-Saharan Africa were added. RESULTS The NCCN Harmonized Guidelines for sub-Saharan Africa, available for download on the NCCN website and mobile application, provide flexible recommendations appropriate for the range of resources seen in African cancer programs, from private comprehensive cancer centers to resource-constrained public hospitals. IBM (Armonk, NY) has developed a digital interface—the Cancer Guidelines Navigator—that allows oncologists to access the treatment recommendations for the first five guidelines through an interactive web-based application. CONCLUSION Harmonized guidelines that reflect the diversity of resource levels that characterize the current state of clinical care for cancer in Africa have the potential to fill a crucial gap in efforts to standardize and improve cancer care in Africa.


Author(s):  
Ramya Ramaswami ◽  
Kathryn Lurain ◽  
Robert Yarchoan

The observation in 1981 of the emergence of Kaposi sarcoma (KS) among young men who had sex with men was one of the first harbingers of the HIV epidemic. With advances in HIV care, the incidence of HIV-associated KS (HIV+KS) has decreased over time in the United States. However, it remains a persistent malignancy among some HIV-infected populations and is one of the most common tumors in sub-Saharan Africa. Because of the relapsing and remitting nature of this cancer, patients with HIV+KS can experience significant, long-term, morbidity. Patients with severe HIV+KS may also have concurrent lymphoproliferative syndromes, malignancies, and/or infections that can contribute to mortality. Several chemotherapy agents were explored in clinical trials for HIV+KS during the early stage of the epidemic. As HIV+KS emerges with CD4 lymphopenia and immunodysregulation, T-cell–sparing options are important to consider. Here, we explore the pathogenesis of HIV+KS and the current evidence for immunotherapy and therapies that potentially target KS pathogenesis. This review provides the current landscape of therapies for HIV+KS and highlights management issues for patients with HIV and cancer.


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