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Experiences of HIV-infected adults and healthcare providers with healthcare delivery practices that influence engagement in US primary healthcare settings

a qualitative systematic review

Norberg, Andrea1,2; Nelson, John1,2; Holly, Cheryl1,3; Jewell, Sarah T.4; Lieggi, Michelle5; Salmond, Susan1,3

JBI Database of Systematic Reviews and Implementation Reports: June 2019 - Volume 17 - Issue 6 - p 1154–1228
doi: 10.11124/JBISRIR-2017-003756

Introduction: The human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) is a major public health problem that has claimed the lives of more than 34 million people worldwide. The health of people living with HIV (PLWH) is optimized by ongoing engagement in HIV care, yet many people living with HIV either do not enter or fall out of care. Access to care and ongoing engagement in care for antiretroviral (ARV) medication adherence and psychoeducational support are critical to achieving the desired outcomes of reducing the risk of further HIV transmission and HIV related morbidity and mortality, and managing other commonly co-occurring health, social and behavioral conditions, thereby maximizing wellness.

Objective: The objective of the review was to identify, evaluate and synthesize existing qualitative evidence on the experiences of HIV-infected adults with healthcare systems/practices/processes, and the experiences of healthcare providers with healthcare systems/practices/processes that impact engagement in primary healthcare settings in the United States (US).

Inclusion criteria: The review included studies reporting on the qualitative experiences of HIV-infected adults, aged 18–65 years, with healthcare systems, practices and processes and their healthcare providers (physicians, nurses and others providing care to these patients in the primary care healthcare setting). Qualitative studies including but not limited to designs such as phenomenology, ethnography, grounded theory, action research and qualitative descriptive were included. Studies published in languages other than English and conducted outside of the US were excluded.

Methods: Using a three-step search strategy, databases of published and unpublished articles were searched from 1997 to 2017. All included studies were assessed by two independent reviewers for methodological quality, and data was extracted and pooled using the Joanna Briggs Institute System for the Unified Management, Assessment and Review of Information (JBI SUMARI). Findings were rated according to their level of credibility, categorized based on similarity in meaning and subjected to a meta-synthesis.

Results: A total of 1038 qualitative articles were identified of which 41 were included after critical appraisal. Meta-synthesis generated four synthesized findings: i) What I want from my provider: to be a respectful, empathetic and holistic partner in my care; ii) I cannot do it alone: the critical importance of actively guiding and assisting patients during transitions and securing the needed resources; iii) Help me to understand my illness and care needs; iv) One-stop care that is de-stigmatizing and welcoming to diverse cultures keeps clients in care. These synthesized findings were derived from 243 study findings that were subsequently aggregated into 19 categories. Of the 243 study findings, 240 were rated unequivocal and three were rated credible. The overall ConQual for each of the four synthesized findings was moderate due to common dependability issues across the included studies. A total of 1597 participants were included. Only two studies were included from 1997 to 2000. The majority of included studies were published from 2005 to 2017.

Conclusions: The synthesized findings illustrate clear quality indicators for primary care practice, emphasizing the patient-provider-care team partnership and shared decision making that is holistic, takes into account a patient's whole life, responsibilities and stressors, and reframes HIV associated misperceptions/myths. The review also highlights the importance of helping patients navigate and interact with the healthcare system by offering one-stop services that assist with multiple medical care needs and “wraparound” services that provide the needed care coordination to assist with critical quality of life needs such as food, housing, transportation, and assistance with applying for health insurance and medication.

1School of Nursing, Rutgers, The State University of New Jersey, Newark, USA

2The François Xavier Bagnoud Center, Rutgers, The State University of New Jersey, Newark, USA

3The Northeast Institute for Evidence Synthesis and Translation (NEST): a Joanna Briggs Institute Centre of Excellence

4George F. Smith Library of the Health Sciences, Rutgers, The State University of New Jersey, Newark, USA

5Fishbon Library, University of California San Francisco Medical Center, San Francisco, USA

Correspondence: Andrea Norberg,

There is no conflict of interest in this project.

© 2019 by Lippincott williams & Wilkins, Inc.
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