Challenges and Lessons Learned through Initiating Patient Engagement with Migrant People Living with HIV During the COVID-19 Outbreak (Preprint)

2020 ◽  
Author(s):  
Anish Arora ◽  
David Lessard ◽  
Adriana Rodriguez-Cruz ◽  
Kim Engler ◽  
Amélie Quesnel-Vallée ◽  
...  
Keyword(s):  
Advisory Committee ◽  
Patient Engagement ◽  
Lessons Learned ◽  
People Living With Hiv ◽  
Transfer Of Knowledge ◽  
Social Distancing ◽  
Active Involvement ◽  
Research Activities ◽  
Living With Hiv ◽  
Migrant People

UNSTRUCTURED Background Patient engagement (PE) refers to the meaningful and active involvement of patients and other stakeholders (i.e. family members) in the conduct of research and transfer of knowledge. PE is usually an immersive experience for both stakeholders and researchers, based on direct dialogue and equitable partnerships. However, in reaction to the COVID-19 pandemic, social distancing measures have been introduced globally. These measures, which may remain in effect for a long duration, or be re-introduced periodically, prevent in-person gathering, and thereby, foster dependence on technologies to remain connected remotely. This affects PE methods. Thus, an understanding of how remote work affects PE is necessary. Main Text In this narrative, we present the experience of a research team that began engaging an advisory committee of recent migrant people living with HIV in Montréal, Canada, amidst social distancing measures put in place due to COVID-19. We highlight three major challenges faced by our team of researchers and the advisory committee. These challenges include (1) ensuring access to technology for both patients and researchers; (2) managing disclosure and comfort with online tools; and (3) creating meaningful communication and peer-to-peer rapport. Subsequently, we list the main lessons we gained through responding to these challenges: (1) the importance of allowing time, dialogue, and reflection to enable adjustment to the new context we are working in; (2) the need to evolve our teamwork dynamics; and (3) implementing hands-on experiences for patients is essential to establishing feelings of meaningful engagement Conclusion PE is not an easy task and its implementation can become even more complex amidst social distancing measures and other disruptions caused by COVID-19 (i.e. fear of contracting COVID-19). However, if appropriate methods are taken up, PE can serve as an instrumental pillar for research activities that seek to create an impact in communities and populations.

scholarly journals Social Distancing to Mitigate COVID-19 Risks Is Associated With COVID-19 Discriminatory Attitudes Among People Living with HIV

2020 ◽  
Vol 54 (10) ◽  
pp. 728-737
Author(s):  
Marcie Berman ◽  
Lisa A Eaton ◽  
Ryan J Watson ◽  
J L Andrepont ◽  
Seth Kalichman
Keyword(s):  
Social Sciences ◽  
Public Health ◽  
Severe Acute Respiratory Syndrome ◽  
Ongoing Study ◽  
People Living With Hiv ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Immune Systems ◽  
Social Distancing ◽  
Living With Hiv

Abstract Background Severe acute respiratory syndrome coronavirus-2, the virus that causes COVID-19, is an emerging pandemic with heightened concerns for people with compromised immune systems, including people living with HIV. Purpose In the absence of a vaccine, public health messaging to mitigate risks for COVID-19 primarily focuses on social distancing. Because people living with HIV commonly experience mistreatment associated with HIV, their response to social distancing may be complicated by psychosocial attitudes associated with COVID-19. Methods To evaluate these relationships, we conducted a rapid-response, cross-sectional survey with people living with HIV (N = 149) to assess social distancing practices, COVID-19 discriminatory attitudes, COVID-19 xenophobic attitudes, HIV microaggressions, and concern over contracting COVID-19. Data were collected from participants enrolled in a larger ongoing study between March 30, 2020 and April 17, 2020. Results Results indicated that choosing to socially distance to reduce COVID-19 exposure was associated with COVID-19 discriminatory attitudes, concerns of contracting COVID-19, and identifying as transgender. Likewise, social distancing imposed by others (e.g., cancelations and restrictions) was associated with concerns of contracting COVID-19. Conclusions Findings demonstrate that social distancing measures are related to concerns of contracting the virus and discriminatory attitudes toward those who are presumed to be living with COVID-19. These potentially negative psychosocial attitudes toward people perceived to have COVID-19 echo the discriminatory actions and attitudes that we continue to observe in HIV social sciences research.

Implementation of HIV Prevention Interventions with People Living with HIV/AIDS in Clinical Settings: Challenges and Lessons Learned

2007 ◽  
Vol 11 (S1) ◽  
pp. 17-29 ◽  
Author(s):  
Kimberly A. Koester ◽  
Andre Maiorana ◽  
Karen Vernon ◽  
Janet Myers ◽  
Carol Dawson Rose ◽  
...  
Keyword(s):  
Hiv Prevention ◽  
Lessons Learned ◽  
People Living With Hiv ◽  
Clinical Settings ◽  
Prevention Interventions ◽  
Hiv Prevention Interventions ◽  
Living With Hiv ◽  
Hiv Aids

scholarly journals Addressing the Medical and Support Service Needs of People Living with HIV (PLWH) through Program Collaboration and Service Integration (PCSI)

2016 ◽  
Vol 14 (1) ◽  
pp. 01-14 ◽  
Author(s):  
Stephanie Bernard ◽  
Amrita Tailor ◽  
Patricia Jones ◽  
Donna E. Alexander
Keyword(s):  
Service Integration ◽  
Support Service ◽  
Lessons Learned ◽  
People Living With Hiv ◽  
Local Health ◽  
Service Needs ◽  
Psychosocial Needs ◽  
Coordinated Care ◽  
Cross Training ◽  
Living With Hiv

Background: Approximately 1.2 million Americans are living with HIV, and about 50,000 new infections occur each year. People living with HIV (PLWH) have numerous medical and psychosocial needs that impact HIV disease progression and challenge treatment outcomes. Purpose: Using CDC’s Program Collaboration and Service Integration (PCSI) framework, we examined strategies, challenges, and lessons learned from a local health department’s efforts to institute PCSI to address the diverse needs of their patients with HIV. Methods: We captured case study data through: 1) semi-structured interviews with key program administrators, 2) analysis of program documents, and 3) site observations and review of clinic procedures. Results: Findings highlight the importance of co-locating services, partnering to leverage resources, and conducting cross-training of staff. Providing co-located services reduced wait times and enhanced coordination of care. Partnering to leverage resources increased patient referrals and enhanced access to comprehensive services. Staff cross-training resulted in more coordinated care and efficient service delivery. Conclusion: The results show that PCSI is essential for optimal care for PLWH. Incorporating PCSI was a vital component of the health department’s comprehensive approach to addressing the multiple medical and support service needs of its HIV-infected clients.

scholarly journals Logic models from an evaluability assessment of pharmaceutical services for people living with HIV/AIDS

2011 ◽  
Vol 16 (12) ◽  
pp. 4833-4844 ◽  
Author(s):  
Angela Esher ◽  
Elizabeth Moreira dos Santos ◽  
Thiago Botelho Azeredo ◽  
Vera Lucia Luiza ◽  
Claudia Garcia Serpa Osorio-de-Castro ◽  
...  
Keyword(s):  
User Satisfaction ◽  
Evaluation Model ◽  
Lessons Learned ◽  
Pharmaceutical Services ◽  
Free Access ◽  
People Living With Hiv ◽  
Theoretical Evaluation ◽  
Evaluability Assessment ◽  
Living With Hiv ◽  
Hiv Aids

Brazil was the first developing country to provide people living with HIV/AIDS (PLWA) with comprehensive, universal, free access to antiretroviral medicines (ARV). Pharmaceutical services are considered a strategic action that has the goal of providing access to rational use of quality medicines while also promoting user satisfaction. User satisfaction is a complex concept, and evaluation models for pharmaceutical services for PLWA were not found in the literature. Therefore, an evaluation approach to help assess this issue had to be developed. This article seeks to describe a theoretical evaluation model of user satisfaction with the dispensing of ARV, developed as part of an Evaluability Assessment (EA). It presents a brief review of the EA and user satisfaction and describes the development of models created during the EA. The lessons learned in the process are presented as a conclusion.

The Florida Cohort study: methodology, initial findings and lessons learned from a multisite cohort of people living with HIV in Florida

AIDS Care ◽  
2020 ◽  
pp. 1-9 ◽  
Author(s):  
Gladys E. Ibañez ◽  
Zhi Zhou ◽  
Christa L. Cook ◽  
Tania A. Slade ◽  
Charurut Somboonwit ◽  
...  
Keyword(s):  
Cohort Study ◽  
Lessons Learned ◽  
People Living With Hiv ◽  
Study Methodology ◽  
Living With Hiv

scholarly journals Ophthalmological profile of patients living with HIV/AIDS

2010 ◽  
Vol 67 (10) ◽  
pp. 856-860
Author(s):  
Katarina Jankovic-Terzic ◽  
Vera Begic ◽  
Bojana Dacic-Krnjaja
Keyword(s):  
Opportunistic Infections ◽  
Hiv Positive ◽  
People Living With Hiv ◽  
Ocular Complications ◽  
Economic Implications ◽  
Active Involvement ◽  
The Individual ◽  
Living With Hiv ◽  
Hiv Aids

Introduction. Serbia has 2.287 registered HIV positive persons. A certain number has ocular complications which are mainly the result of opportunistic infections accompanying this illness. Due to a highly stigmatizing environment for people living with HIV/AIDS in Serbia, they do not always seek doctors assistance despite the fear of losing their sight. Case report. We presented ophthalmologic status of nine HIV positive persons, all at the different phases of the illness. The decrease in the visual acuity was the first symptom which led to the diagnosis of HIV infection in two of our patients. Conclusion. Ophthalmologist has an important role in the multidisciplinary approach to patients with HIV/AIDS from introducing the diagnosis to the follow-up and the treatment of ocular complications which may accompany this chronic illness. With the active involvement of eye professionals serious consequences can be prevented, which have not only medical but also social and economic implications on the individual and the society as a whole.

scholarly journals Relationship Between Patient Engagement and Depressive Symptoms Among People Living With HIV in a Mobile Health Intervention: Secondary Analysis of a Randomized Controlled Trial

10.2196/20847 ◽  
2020 ◽  
Vol 8 (10) ◽  
pp. e20847
Author(s):  
Yu Zeng ◽  
Yan Guo ◽  
Linghua Li ◽  
Y Alicia Hong ◽  
Yiran Li ◽  
...  
Keyword(s):  
Depressive Symptoms ◽  
Health Outcomes ◽  
Patient Engagement ◽  
Repeated Measures ◽  
Controlled Trial ◽  
People Living With Hiv ◽  
Mhealth Intervention ◽  
The Mean ◽  
Living With Hiv ◽  
The Relationship

Background Associations between higher levels of patient engagement and better health outcomes have been found in face-to-face interventions; studies on such associations with mobile health (mHealth) interventions have been limited and the results are inconclusive. Objective The objective of this study is to investigate the relationship between patient engagement in an mHealth intervention and depressive symptoms using repeated measures of both patient engagement and patient outcomes at 4 time points. Methods Data were drawn from a randomized controlled trial (RCT) of an mHealth intervention aimed at reducing depressive symptoms among people living with HIV and elevated depressive symptoms. We examined the association between patient engagement and depressive symptoms in the intervention group (n=150) where participants received an adapted cognitive-behavioral stress management (CBSM) course and physical activity promotion on their WeChat social media app. Depressive symptoms were repeatedly measured using the Patient Health Questionnaire (PHQ-9) at baseline and 1 month, 2 months, and 3 months. Patient engagement was correspondingly measured by the completion rate, frequency of items completed, and time spent on the program at 1 month, 2 months, and 3 months. Latent growth curve models (LGCMs) were used to explore the relationship between patient engagement and depressive symptoms at multiple time points in the intervention. Results The mean PHQ-9 scores were 10.2 (SD 4.5), 7.7 (SD 4.8), 6.5 (SD 4.7), and 6.7 (SD 4.1) at baseline, 1 month, 2 months, and 3 months, respectively. The mean completion rates were 50.6% (SD 31.8%), 51.5% (SD 32.2%), and 50.8% (SD 33.7%) at 1, 2, and 3 months, respectively; the average frequencies of items completed were 18.0 (SD 14.6), 32.6 (SD 24.8), and 47.5 (SD 37.2) at 1, 2, and 3 months, respectively, and the mean times spent on the program were 32.7 (SD 66.7), 65.4 (SD 120.8), and 96.4 (SD 180.4) minutes at 1, 2, and 3 months, respectively. LGCMs showed good model fit and indicated that a higher completion rate (β at 3 months=–2.184, P=.048) and a greater frequency of items completed (β at 3 months=–0.018, P=.04) were associated with fewer depressive symptoms at 3 months. Although not significant, similar trends were found in the abovementioned relationships at 1 and 2 months. There was no significant relationship between time spent on the program and depressive symptoms. Conclusions This study revealed a positive association between patient engagement and health outcomes at 3 months of an mHealth intervention using LGCMs and repeated measures data. The results underscore the importance of improving patient engagement in mHealth interventions to improve patient-centered health outcomes. Trial Registration Chinese Clinical Trial Registry ChiCTR-IPR-17012606; https://tinyurl.com/yxb64mef International Registered Report Identifier (IRRID) RR2-10.1186/s12889-018-5693-1

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