- Systematic review identifies the healthcare factors most valued by people living with HIV.
- Relationship with healthcare providers cited in 83% of studies reviewed, and treatment information and support in 63%.
- People with HIV place value on provider’s expertise, confidentiality and coordination, and on ease of access and active participation as a client.
It is important to understand what people with HIV value most in their healthcare experience to deliver services that best respond to their needs and keep them engaged in care over the long term. To examine this, researchers in the United Kingdom conducted a systematic review on the aspects of healthcare valued by people with HIV. They identified seven areas of importance for patients: relationship with their healthcare provider; expertise of their healthcare provider; access to care; receipt of information and support; coordination between the services they receive; confidentiality; and participation in their care.
A systematic review is a critical summary of the available evidence on a specific topic. It uses a rigorous process to identify all the studies related to a specific research question. Relevant studies are then assessed for quality and their results summarized to identify and present key findings and limitations.
The systematic review included 23 studies published between 1996 and 2015.The studies took place in high-income locations including Canada, the United States, the United Kingdom, the Netherlands and Australia. Almost half the studies took place in the United States. Data gathering methods included interviews and/or focus groups, questionnaires, rating of different aspects of care and a card-sorting exercise.
The review grouped the results of the 23 studies into seven themes.
1. Relationship with their healthcare provider
In 83% of studies (19/23), participants valued the relationship they had with their healthcare provider. This included valuing interpersonal factors, like comfort sharing personal issues with their healthcare provider, and personal characteristics of their provider, such as compassion, that helped respondents feel respected and supported.
2. Expertise of their healthcare provider
The expertise of healthcare providers was a valued aspect of care in 39% of studies (9/23). People with HIV valued their provider’s current, specialist knowledge of HIV. Concern was raised in some studies by respondents who perceived general primary care physicians as having insufficient knowledge or experience of HIV to deliver care to people with HIV.
3. Access to care
Easy access to healthcare was valued by people with HIV in 39% of studies (9/23). This included timely access to care, convenient clinic hours, timely response to phone calls, transparency of services, such as the ability to access personal health records, and reliability of services.
4. Receipt of information and support
People with HIV valued the receipt of accessible information to help them understand their treatment and care in 61% of studies (14/23). Clear and easy to understand information was important, specifically regarding HIV treatment, including side effects and the benefits and drawbacks of treatment. They also valued information and support with other areas of their life such as finances or immigration, as well as support from peers.
5. Coordination between services received
People with HIV reported that they valued good coordination and communication between the healthcare professionals involved in their care in 25% of studies (6/23). They also valued being linked to other services in their community such as housing or mental health services.
People with HIV were concerned about confidentiality of their HIV status in 35% of studies (8/23). This included concerns about unintended disclosure if they were seen in a location providing HIV-related services, or the need for disclosure and concerns about stigma and discrimination when accessing services beyond their HIV-specific care.
7. Participation in their care
Active participation in their heathcare was valued by people with HIV in 26% of studies (6/23). Some examples of healthcare participation included working in partnership with their healthcare provider, making the final decision about their care and maintaining personal records of their care.
While the variety of methods used and aspects of care examined did not make it possible to compare the importance of themes across studies, the relationship with a healthcare provider and receipt of information and support to help people with HIV manage their care were the themes that occurred most often. None of the studies examined the relative importance of all seven themes identified by the review. However, six studies did assess the relative importance of selected aspects of care, with the relationship with and expertise of healthcare providers often given high importance.
This systematic review provides insight into the aspects of care valued by people with HIV. The seven themes identified highlight patient preferences that can inform the delivery of HIV care, with the ultimate goal of improving engagement in care and health outcomes. Looking across themes, some implications for care include:
The quality of the relationship with their care provider was the aspect of care valued most frequently across studies. People with HIV also valued the expertise of their care provider. For people receiving care from general primary care physicians who may not have specialist knowledge of HIV, HIV-specific training may be beneficial for providers and contribute to patient confidence in their care.
People with HIV valued receiving accessible information to help them understand their treatment and care. They also valued being participants in healthcare decision-making. Providing information that is clear and easy to understand and otherwise supporting people who choose to take an active role in their care may help people feel more engaged in their care. People also valued the support of peers in peer programs.
People valued timely access to care and improved coordination of care among members of the healthcare team and through support and linkages with other services in the community. Models of care that facilitate coordination and communication among services may help to address diversifying care needs.
Fear of stigma and discrimination is still a concern for people with HIV and services that prioritize the confidentiality of a person’s HIV status can help to address this barrier to care.
The quality of the studies included in the review varied greatly with just over half of studies (13/23) assessed as being of good quality. Additional research with more rigorous methodology will help confirm the findings in this review. The authors were also unable consider the results by demographic characteristics, such as age or ethnicity. These findings may not be generalizable across all populations, with different populations possibly valuing unique aspects of care.
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Cooper V, Clatworthy J, Youssef E, et al. Which aspects of health care are most valued by people with HIV in high-income countries? A systematic review. BMC Health Services Research. 2016 Nov 30;16(1):677.
This article by Erica Lee previously appeared at CATIE, here.
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