Compassionate care helps adults with HIV remain on treatment longer

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Adults with HIV are more likely to continue life-saving treatments if their primary health care providers show respect, unconditional empathy without judgement and demonstrate an ability to partner with patients in decision making to address their goals, a Rutgers University study finds.

The findings showed that the complexity of the illness, treatment regimen and overall healthcare system frequently overwhelms the patient and fear of stigma often prevents them from beginning or continuing treatment. The researchers found that patients need help in understanding their illness and care needs using understandable language to translate complex information, letting patients know what to expect and reinforcing that HIV is now a treatable, yet complex, chronic illness.

“Today, HIV is considered a chronic, treatable condition. However, this study found that many patients continue to view it as a death sentence,” said lead author Andrea Norberg, executive director of the François-Xavier Bagnoud Centre at Rutgers School of Nursing, which provides care for people with HIV, infectious diseases and immunologic disorders. “We know that people who are knowledgeable about HIV, who are engaged in care and taking antiretroviral therapy medications remain relatively healthy. Our challenge is to reach those people diagnosed with HIV and who are not retained or engaged in ongoing care. In the US, this is approximately 49% of the 1.1m people diagnosed.”

The researchers included 41 studies published between 1997 to 2017. The sample populations included adults with HIV and their healthcare providers. All adults with HIV were between the ages of 18 and 65, represented diverse races and ethnicities, sexual orientations and gender identities. Healthcare providers included physicians, nurse practitioners, physician assistants, pharmacists, social workers and others. The included studies had 1,597 participants.

They found that many patients experience stigma and a lack of compassion that is often grounded in primary care providers’ ignorance about HIV and transmission risks. The resulting poor communication between providers and patients results in many patients’ failure to seek or remain in care and adhere to antiretroviral therapy medications.

Patients reported feeling “grilled” by providers who often assumed they were not taking medications. Norberg suggested providers would be more successful in getting information from patients by allowing them to be honest, inquiring about their health goals and telling them how other patients have managed treatment.

Conversely, the researchers found that patients were more inclined to adhere to HIV treatment when their primary care providers showed empathy, true listening, trust, consideration of the whole person and involvement in decision making. However, many patients reported that healthcare providers viewed care only as “prescribing antiretroviral therapy medicine.”

“Providers should use common language, not medical jargon, to educate patients about HIV, medications and how they can live a healthy life,” Norberg said. “They should thoroughly teach them about the disease, the medications and side effects, and the meaning of the tests.”

The researchers noted that providers who help patients navigate the health system, offer one-stop location of services and provide connections to psychological support, health insurance, medicine, transportation and other services, can help their patients stay engaged in care.

Primary healthcare providers can enrol in professional education to improve their knowledge about HIV, use of motivational interviewing skills and seek opportunities for experiential learning, observation and hands-on practice working directly with patients with HIV, Norberg said.

Other Rutgers authors included John Nelson, Cheryl Holly, Sarah T Jewell and Susan Salmond.

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.

Andrea Norberg, John Nelson, Cheryl Holly, Sarah T Jewell, Michelle Lieggi, Susan Salmond

Rutgers University material
JBI Database of Systematic Reviews abstract

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