‘The person cutting the path does not know his trail is crooked’. Drawing lessons learned from people accessing antiretroviral treatment services to propose a person-centered care (PCC) minimum practice standard

Abstract

Introduction: Person-centered care (PCC) in HIV services aims to improve client experiences, advance service accessibility and treatment outcomes and accelerate progress towards epidemic control. For PCC to be responsive, providers and clients must work together to identify clients’ priorities. However, providers often neglect to identify non-clinical client concerns and clients may feel inhibited due to language or unequal power dynamics.

Methods: While evaluating results from a mixed-methods study on implementation of a Person-Centered Care Assessment Tool (PCC-AT) in Ghana, our study team identified contrasting perspectives from people on antiretroviral treatment (ART) and providers that elucidated the need for a PCC minimum practice standard. Our team examined qualitative data to propose a five step PCC minimum practice standard.

Discussion: Because PCC is a broad concept, with scarce practical implementable information to support a framework for its operationalization, its consistent and accurate implementation is unlikely without the presence and utilization of a Minimum Practice Standard. Future research should identify aims and further elucidate quality standards within each component of the minimum PCC practice standard.

Keywords:

• Person centered care
• minimum practice standard
• HIV
• anti-retroviral treatment
• assessment
• client experience

Person-centered care (PCC) is increasingly recognized as fundamental to improving client experiences in HIV care, advancing service accessibility and treatment outcomes and progressing towards epidemic control [1–3]. The International AIDS Society defines PCC as ‘…a multidisciplinary, integrated and long-term focused approach to care for people living with and affected by HIV that is responsive to their evolving needs, priorities and preferences’ [4]. Providers and clients must work together to identify clients’ priorities, however providers often neglect to identify non-clinical client concerns and clients may feel inhibited due to language or unequal power dynamics, resulting in a lack of responsive PCC models that proactively and consistently solicit clients’ inputs [2].

We conducted a mixed-methods study in Western region of Ghana that examined implementation of the Person-Centered Care Assessment Tool (PCC-AT) which measures ART provider perspectives on PCC service delivery. The PCC-AT is based upon a PCC framework that we developed via a systematic literature review [5]. Drawing upon data from PCC-AT pilots in five study facilities, which were followed by key informant interviews with ART clients (n = 20) and focus group discussions with ART providers (n = 37) in each study facility, we examined PCC-AT feasibility and content validity. Focus group discussions with providers gathered information on the feasibility of the PCC-AT and their perspectives on ART services. Client key informant interviews gathered data on their experiences accessing ART services and the relative importance of different PCC activities. We then compared client experiences and health staff perspectives on ART services.

During this comparison and while considering the larger evidence base for PCC in HIV treatment settings, our study team identified a clear and urgent need for a minimum PCC practice standard in HIV treatment settings to provide a framework against which HIV treatment services can be upheld and evaluated [6]. (Figure 1). In proposing this novel minimum PCC practice standard, we aspire to overcome common challenges to PCC implementation including deeply ingrained medical paternalism, and other harmful practice norms, so that PCC can effectively and sustainably be practiced, ultimately contributing to improved client outcomes.

Figure 1. PCC minimum practice Standard.

Standard 1: Integrate questions into clinical assessments that ask clients about what is important, what concerns them and partner with them to address those challenges

Client concerns caused a significant amount of anxiety that providers were not aware of. For example, clients shared that delayed and lost HIV viral load (VL) results are a significant source of anxiety with multiple reports of lost or delayed VL results resulting in additional blood draws and fears that their VL results were suboptimal. Asking clients about their concerns and accordingly providing information on when to expect the results and how the results will be shared with them, may help to reduce anxiety before it arises.

My only concern is when I come and do the test for my (HIV) viral load and I ask for my results, they say it’s not available and then I’m asked to take another one. It makes me so worried. – Client

Some clients shared that financial constraints were a source of stress that influenced their ability to follow through on the treatment plan prescribed by their provider. Exploring barriers to care with clients and resolution options available within the facility, or the community may support clients to sustain treatment continuity [7].

Okay the medication they give us is very good but the blood tonic, the multivitamin, we buy it ourselves. The prices have increased and there is hardship. Septrin is selling for GHc 4.00 in some areas and I have to buy it for my child and me. So sometimes when you don’t have money, it’s difficult. It becomes difficult for us both. You have to take the blood tonic daily…Last Saturday, I went to the hospital and the doctor said I had low blood levels and so he was putting me on a blood tonic for three months. However, I told him I couldn’t afford it so I’ll use turkey berries as an alternative and come back to get tested to see how it’s going. – Client

Standard 2: Give clients options and let them select how they would like to receive services

ART providers shared the mistaken perspective that clients prefer not to receive digital outreach including appointment reminders, ART adherence check-ins or follow-up on missed appointments due to fears of unintentional disclosure. However, almost overwhelmingly, clients indicated that digital check-ins would be extremely helpful to support their treatment journeys.

I think calling the patient to find out her state of health and to ask whether she has taken her medication, will serve as motivation for the patient to take her drugs since most of the patients do not take the drugs as they should. It also demonstrates love and care on the part of the health workers, and this is a way for patients and caregivers to draw closer to one another. This will influence patients positively to take their drugs. – Client

All clients reported receiving appointments on a specific day and being served on a ‘first come-first serve’ basis upon arrival. While this model was acceptable to most clients, some expressed that flexibility regarding which day they visit the facility would be helpful.

Because personally I don’t see any reason why we can’t come. Nurses will be here from Monday to Friday and the person will come all the way from Accra and you’ll tell them it is not clinic day so you let the person go. I don’t see any sense in it. – Client

Standard 3: Integrate mechanisms to collect PCC preferences in client records

Simple adaptations to client medical visit forms can standardize conversations that identify and document client concerns while making them accessible to other staff. Medical visit forms can also be adapted to include checkboxes with options for when and where clients prefer to receive services, options for digital check-ins and differentiated treatment delivery.

…and in terms of documentation, there are certain things we do as a facility, we don’t have a standard register though it’s being done. So when such things come up, we remind ourselves that we need to get something standard where we can put in feedback and things like that… – ART provider

Standard 4: Institutionalize convenient, anonymous, and friendly client feedback mechanisms and build clients’ trust in responsive services

Staff from four out of five study facilities reported having some form of client service feedback mechanisms including sharing a telephone number and randomly soliciting client feedback during appointments. Despite this, clients were often unaware that they could provide feedback, or lacked confidence to provide it.

It is because as the Fantes will say, “the person cutting the path does not know his trail is crooked.” So it’s important to ask for feedback because they have to know that the fact that they are attending to people doesn’t mean they don’t have their own problems…So if you ask for feedback, I think it will be of great help. – Client

Interventions to institutionalize widely accessible, anonymous client feedback mechanisms (e.g. telephone hotlines, WhatsApp/SMS, drop boxes), should also raise client awareness that they exist, build their confidence to use them, and ensure that clients trust that their feedback will result in responsive services.

I’ve seen some people writing them (texting a hotline), but I don’t know if the number works or even on weekends. And even when we come here to meet them personally, they don’t have time so how will they have time for that? So as for me, it won’t be necessary for me to take the number. – Client

Standard 5: Use quality improvement (QI) to ensure standardized and responsive implementation of PCC

The utility of the above steps will be limited unless the information gathered is used to shape responsive services that are tailored to the needs of clients. QI approaches [8], such as the PCC-AT and/or routine assessments drawing upon PCC documentation in clients’ medical records and client feedback data can help ART providers identify opportunities to strengthen PCC services and to identify systems strengthening priorities that enable consistent PCC implementation.

…is that with such things (assessment tools) it helps us to abreast ourselves with the current and the standardized methods. – ART provider

Maybe we were doing it but not doing it well. Some of your things (the PCC-AT) were also reminding us of what to do – ART provider

Where do we go from here?

Our study findings from Ghana and our emerging findings from a larger study in Zambia, and the recent surge of PCC models emerging in the literature, call to attention the importance of a minimum PCC practice standard to ensure that PCC models consistently solicit clients’ inputs and build clients’ trust through responsive services that align with client’s needs and expectations. Because PCC is a broad concept, with scarce practical implementable information to support a framework for its operationalization, its consistent and accurate implementation is unlikely without the presence and utilization of a Minimum Practice Standard. Future research should further elucidate quality standards within each component of the minimum PCC practice standard.

Consent

We confirm that all participants including ART providers and clients provided informed consent in order to participate in this research.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

Support for this article was funded by JSI Research and Training Institute, Inc.