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Published in final edited form as: Patient Educ Couns. 2019 Mar 25;102(8):1535–1540. doi: 10.1016/j.pec.2019.03.017

What patient involvement means to new patients at two HIV clinics: a longitudinal, qualitative study

Jennifer Freytag 1,2,3, Zhixin Jiang 4, Thomas P Giordano 1,2,3, Robert A Westbrook 5, Sheryl A McCurdy 4, Sarah Njue 1,2,3, Bich N Dang 1,2,3
PMCID: PMC6565493  NIHMSID: NIHMS1525970  PMID: 30948202

Abstract

Objectives

This study 1) defines patient involvement from the perspective of patients new to a provider, 2) describes provider communication that patients perceive as promoting involvement, and 3) examines changes in patient definitions of involvement over time.

Methods

We enrolled 56 patients at two HIV clinics in Houston, Texas, from August 2013 until March 2015. We interviewed patients at three times during the first year of care and analyzed interviews using content analysis.

Results

The mean age was 45 years; 54% were men. Patient definitions of involvement ranged from adherence- to decision-oriented. Analysis revealed three provider communication behaviors that can foster patient involvement: 1) soliciting patient feedback, 2) discussing treatment options and trade-offs, 3) narrating the decision-making process. Expectations of involvement can change over time as providers reframe the patient’s illness as manageable and through perceived partnerships with the provider.

Conclusion

Provider communication plays a critical role in shaping new patients’ perception of involvement and can make patients feel involved even when patients do not actively make medical decisions.

Practical implications

Finding strategies to make patients feel involved in their care is important, particularly for new patients, even if those strategies do not necessarily promote more talk from the patient.

Keywords: Patient involvement, patient provider communication, HIV infection

1. Introduction

Patient involvement is considered a core component of patient-centered care [1, 2]. It is associated with improved patient satisfaction and health outcomes in a variety of disease conditions and medical settings [3–9]. However, the concept of patient involvement is operationalized in a number of different ways [10–12]. Some define it in terms of provider behavior, asking what the provider has done to ‘involve’ patients by soliciting their participation, checking understanding, and clarifying and giving information [2, 3]. Others have conceptualized patient involvement as patient behavior, or the patient’s act of seeking information, asking questions, and taking an active role in clinical conversation [4–5, 8]. Still others consider involvement from a patient’s perspective [6].

In this study, we focus on involvement from the patient’s perspective. Patients’ understanding of ‘involvement’ in their care can differ depending on their condition and personal characteristics [13–18]. Individual preferences for level of involvement can vary greatly [14–15, 19–24]. Some patients dismiss the idea that they should be ‘involved’ in their care at all [18]. Others hold different expectations—ranging from passive acceptance of instructions to active participation in the decision-making process [14–15, 18]. Additionally, patients’ desired level of involvement in their care—whether choosing a medication or deciding when to start a treatment plan— is fluid and can vary with age, knowledge of disease and treatment options, disease severity, and the patient’s feelings of empowerment [19–23, 25].

This study seeks to further articulate the way patients think about involvement in their care by examining the perceptions of patients who see a new provider. We interviewed patients with HIV infection who presented for their first visit with an HIV primary care provider. The first visit to a new provider, particularly for patients with chronic, life-altering diseases, can cause uncertainty and vulnerability. Understanding how these patients perceive involvement can yield insight into their expectations before and after meeting a new provider.

Through qualitative analysis of these interviews, we aim to: 1) present definitions of patient involvement from the perspectives of patients seeing a new provider, 2) examine physician behaviors that patients identify as cultivating their involvement, and 3) identify some of the ways new patient expectations of involvement change after their first visit with a new provider. Finally, we discuss ways that our results can help inform strategies for cultivating patient involvement.

2. Methods

2.1. Study population and design

This study is part of a larger qualitative study that aims to understand patients’ expectations and experiences of care with a new HIV provider, as well as the change over time in these expectations and experiences (NIH K23 MH100965). In-person interviews were conducted with 21 patients from Michael E. DeBakey Veterans Affairs (VA) Medical Center and 35 patients from Thomas Street Health Center (TSHC) in Houston, Texas. Patients at the VA generally had higher levels of education and income than patients at TSHC, which is a part of the county health system. To participate in this study, patients had to have a confirmed HIV diagnosis, be 18 years of age or older, and have no prior appointment with an HIV provider at the clinic prior to enrollment. Patients were new to the HIV provider, but not necessarily newly diagnosed or naïve to HIV treatment.

Participants were interviewed at three different times. The first interview (T1) took place prior to participants’ initial visit with the provider. The second interview (T2) took place within two weeks of the initial visit, and the third (T3) at 6–12 months after the first visit. The first interview assessed participants’ expectations of their new HIV provider, as well as concerns regarding the visit. The second interview covered participants’ impressions of the provider, and how and to what extent they were involved in deciding on a treatment plan. The third interview consisted of the same questions as the second interview and assessed changes in patient attitudes and experiences with the provider over an extended period of time.

After setting up the first appointment with the HIV provider, clinic staff informed patients eligible for the study about the opportunity. The research staff contacted all patients who expressed a willingness to participate. Recruitment took place from August 2013 to July 2014 at the VA and from August 2014 to November 2014 for TSHC. Recruitment continued until data saturation was achieved (i.e., no new themes appeared).

The principal investigator (BD) and a study coordinator (SN) conducted the in-person interviews, which lasted 60 minutes on average. Although interviews covered a range of topics related to patient expectations and experiences with their new provider, this analysis focuses on the portion of interviews related to patient involvement in their treatment plans. Interview questions related to involvement can be found in Table 1.

Table 1.

Post-Visit interview questions relating to treatment and patient involvement**

Treatment factors

  • Tell me about what you and your doctor decided to do about HIV treatment. What is the plan for treating your HIV?

  • Was it what you thought would happen?

  • How involved were you in the plan for treating your HIV?

  PROBES:

  •    For you as a patient, what does being involved mean?

  •    How involved do you want to be?

  •    Did you have a say in the plan for treating your HIV? Tell me more.

  •    Did you have as much say as you wanted? Why/ why not?

  •    Did the doctor ask you what you felt or thought about the plan for treating your HIV?

  •    What do you like about your HIV treatment (plan)?

  •    What do you not like about your HIV treatment (plan)?
Open in a new tab
**

Note T1 pre-visit questions were similar to T2 and T3 post-visit questions, except that previsit questions ask about patient expectations for their treatment with their new physician.

The Institutional Review Board at Baylor College of Medicine and the DeBakey VA Research and Development Committee approved this study. Prior to the initial interview, all participants signed a written informed consent. Participants mentioned in this paper were assigned pseudonyms to ensure confidentiality. Compensation was offered to participants: $10 for the first interview, $15 for the second, and $25 for the third.

2.2. Data analysis

All interview transcripts were imported into the database management program Atlas.ti version 7. Researchers BD and SN listened to all the interviews, reviewed the transcripts and marked all passages concerning patient involvement in the treatment plan. They then generated a query report consolidating all passages related to patient involvement into one document. Next, the research team (BD, ZJ, and JF) used an iterative approach to analyze the data – continually reviewing the data, comparing it to what is already known in patient involvement (based on the background literature and the team’s prior work, e.g. decision-making preferences, patient and physician participation in medical visits, treatment planning, and the connection between patient and physician) [26]. The team noted passages that prompted new ideas and/or ways of thinking about patient involvement. They also noted new ideas and ways for providers to cultivate feelings of patient involvement, based on examples of what patients said made them feel involved. During this process, the team met frequently to compare notes, ensure analysis lined up, and reconcile differences [27]. In analyzing the data, the team used two approaches: recurrent cross-sectional and trajectory. The recurrent cross-sectional approach provided a snapshot of all participants at one point in time. This let us delve into the range and breadth of experiences and perspectives at each time point. In contrast, the trajectory approach allowed us to examine the change in attitude that occurred over time in each participant [28].

3. Results

A total of 56 patients completed T1 interviews, 48 completed T2 interviews, and 34 T3 interviews. The average patient age was 45 years (range 20–66). Males made up 54% of the study population. The study population was composed of participants from diverse racial and ethnic backgrounds: 28 non-Hispanic black, 14 Hispanic, 13 non-Hispanic white, and 1 Asian/Pacific Islander. We present our findings here in three broad categories that reflect new ideas related to the aims we specified: patient definitions of involvement, physician behavior that patients believe promotes involvement, and the way patient ideas of involvement changed over time.

3.1. How patients define involvement

The patients we interviewed frequently answered that they were actively involved in their care. However, patients’ actual definitions of involvement varied greatly.

3.1.1. Adherence-oriented involvement

For many patients in our sample, involvement meant meeting provider expectations and following instructions. This adherence-oriented definition included arriving on time to appointments and taking medications as instructed. One patient, Tom, a 22-year-old male recently diagnosed with HIV described this type of involvement as “doing your part” to maintain health:

It’s you taking your meds…You do what you’re supposed to do. You can take it, or you cannot take it. You can decide if you want to live or not to live. Me, personally, I want to live, so I’m going to do my part and take my medicine, keep my appointments, you know…But, involvement is just doing your part

(T1).1

3.1.2. Information-oriented involvement

For others, involvement meant seeking information. This information-oriented definition included asking questions regarding the treatment plan and understanding how medications work. Such is the case for Eugene, a 23-year-old Hispanic male who made a point of finding out about treatments included in his regimen. At his initial appointment, Eugene asked many questions regarding the new medications:

I decided to ask more questions regarding the medications. What could happen? How long does it take for a patient to become resistant to a medication or something like that? Um, so I asked pretty much a lot of questions regarding my medications

(T2).

This information-oriented definition of involvement also included seeking out information from sources prior to the first visit with the provider. For James, a 26-year-old Hispanic male, it was important to use his visit to fill in gaps in his knowledge. He defined involvement as:

Doing my research, asking the questions that aren’t so clear as far as my research through the internet or asking people online. If something doesn’t seem so clear, then that’s where I ask the doctors… I’ll ask their opinions on it. Because I feel like I’m aware and I feed myself a lot of information on it

(T1).

3.1.3. Decision-oriented involvement

A final way of defining involvement included maintaining a sense of control over treatment decisions. Adam, a 28-year-old male who received his HIV diagnosis a few months prior to his interview, defined involvement as “[Being] able to pick the medication that I wanted… [The doctor] didn’t pick it for me…” (T2). He also followed with, “I was pretty involved and all of my questions were answered.” For him, being involved included the ability to select a particular treatment option for himself, rather than being told what to do.

3.2. How patients describe physician communication that promotes involvement

For many patients, involvement was not defined entirely by their own behavior, but how their physician cultivated an environment conducive to patient involvement. The physician behaviors described include a range of communication techniques, from ones that involved more complex exchanges between patient and physician, to simply narrating physician thought processes.

3.2.1. Soliciting patient feedback

Robert, a 54-year-old Hispanic male diagnosed with HIV 28 years ago, felt involved in his care when his physician solicited his opinion about a treatment option. The physician suggested a particular drug and asked what Robert thought about the drug. Robert agreed to take it. Although Robert defined involvement as letting the physician “tell me what is the right thing to do,” (T1) he felt actively included in his care when the physician asked for his opinion, and to him, his agreement in response to the question was involvement. Aaron, a 47-year-old male, echoed the importance of his physician soliciting his opinion. “Everything has been slow, thorough… a whole lot of communication. Not only from the doctor’s point of view. The doctor also wants to know your point of view, asking what’s your point of view, what do you think…” (T3).

3.2.2. Discussing treatment trade-offs

Patients also reported feeling involved in their care when physicians provided information about treatments and trade-offs, whether prompted by a patient’s question or not. Many patients were specifically concerned about the side effects of HIV medications, which can limit daily function. Brian, a 25-year-old male, was concerned about the effect of starting medication on his daily life. His provider’s discussion about the side effects of the medication allowed him to weigh the trade-offs associated with different treatments and to decide which treatment regimen would best fit with his preferences. He described the encounter as follows:

The doctor did let me know…the side effect[s]…And he just went through a list of medicines with me and he let me know…there was one pill where…one of the major side effects that people complained about was diarrhea versus the- one medication was…crazy dreams…I can deal with diarrhea any day over messing with my sleep… So I would say I was very involved with that like we…discussed it as partners instead of doctor patient

(T2).

For some patients, their physician’s willingness to discuss treatment options also cultivated a safe and ‘caring’ environment that encouraged involvement. For Aaron, communication of his treatment options as well as asking for his experience with medications not only led to more interaction with the physician, but showed his new physician’s genuine care. “[My doctor asked] did you like this particular medication? Or we’re gonna do this again, and [do] you have any bad feelings or [do you] think it’s working, you make sure you let me know immediately. That’s caring” (T3).

3.2.3. Narrating decision-making processes

For other patients, involvement did not require their physician asking questions or soliciting feedback. In fact, for some, involvement meant a sense that their physician anticipated their questions by talking through how the physician arrived at a treatment decision. Guy, a 25-year-old who received his diagnosis within the past year, felt involved when listening to his physician’s thought process:

[The doctor] told me he was going to start me on one type of medication, and then… he kind of talked me through how he made the decision on what to put me on versus other ones… Because I like to know why and know as much about things as possible. He was explaining so much without me having to ask, which was really nice

(T2).

Although this characterization of involvement runs counter to what is commonly thought to be ‘active’ patient engagement—making sure a patient talks during the encounter—Guy interpreted the physician’s narrating his decision-making process as fostering involvement.

Even for Adam, the 28-year-old discussed earlier who conducted internet research prior to his visit, his physician’s detailed narration of his decision-making process “made [the process] that much… easier [and gave] me a lot of peace of mind…nowadays you can’t really trust most of the things you see online” (T2). This sentiment was echoed by many patients--understanding how physicians made their decisions created a sense of participation.

3.3. Changes in patients’ expectations of involvement

While some patients’ expectations of involvement were met, others’ changed after their first visit. These were primarily patients who initially described adherence-oriented involvement, and their expectations changed based on provider behaviors that fostered involvement.

3.3.1. Reframed role in care

Because of the stigma associated with an HIV diagnosis, some new patients did not prioritize involvement in their care as much as coping with their fears of the unknown. Julie, a 34-year-old, who was diagnosed with HIV within the past year, altered her perceptions about HIV after her physician described her role in managing her care. Because she was new not only to the provider, but to managing HIV, she did not have a concept of how to be involved in her care until her physician framed her illness as one that could be managed on a daily basis. Prior to her appointment, she expressed fear that her physician would tell her that her condition was ‘hopeless.’ After her initial appointment, she stated:

I was just terrified… I went in there with a negative mind, but I came out with a positive mind. I didn’t know what to think. I didn’t even know that there was going to be a plan. I didn’t know anything about numbers, how they work, or anything… After my visit and understanding how my numbers work and how to get to where I’m undetectable, how to take the medicine every day, then I kind of understood, that’s not that hard to do

(T2).

This example underscores how ‘involvement’ in care for new patients may be less about participating in the initial consultation as learning how to think about their condition and frame it as a process in which the patient can become involved.

3.3.2. Involvement in decision making

A common change in patients’ perceptions about involvement stemmed from their physician involving them in making decisions. Before his first appointment, Robert reported that he was, “gonna let [the doctor] guide me and tell me what is the right thing to do” (T1) regarding his treatment plan. During the interview immediately following the initial appointment, Robert reported that the doctor asking him “what do [you] think?” made him feel involved. He stated:

How involved was I in the plan? I was very involved. I told the doctor ‘I’m giving myself to you and together we’ll work… You tell me what it is that I have to do in order to combat the virus.’ So it was both. He just didn’t say ‘this is what you’re gonna take and blah, blah, blah, blah.’ He says ‘this is what I suggest. What do [you] think?’

(T3).

By soliciting his thoughts and concerns, his provider changed Robert’s perspective on his involvement in his care.

Similarly, Ian’s perspective on participation changed when he became involved in planning his treatment. Before his visit, Ian framed involvement as answering physicians’ questions, stating “I don’t have a list of questions…I usually try to have a list of answers. Because they usually ask you questions. So I want to…remember all the answers” (T1). Several months later, he noted how important involvement in treatment decision making is, even though he did not get the treatment regimen he was expecting. He stated:

At the beginning of the appointment it was like doctor patient but towards the end of the appointment like I said it was more like we were partners and we were devising this plan [for] what was going to work out really well for me. I had input and a say so. I didn’t like that I didn’t walk out with medication, but I understand why not though

(T3).

3.3.3. Formed partnership

A final way that patients’ expectations of involvement changed over time was through perceived partnerships with their providers. Jacob, a patient who had HIV for several years, at first described involvement in his care as following the direction of his physician, as though the physician is “an additional parent if you’re not doing right. They’re going to tell you what you need to do to fix it…My doctor she stays on me…I like that. It’s almost like a parent and you do what they say” (T1). However, after working with his new physician for several months, he stated, “I would say I was very involved [because] we discussed [my treatment plan] as partners instead of doctor patient.” (T3). Jacob further described choosing a treatment plan that worked best for him and taking a more active role in his treatment.

Arnie also initially described involvement as listening to his physician, stating that involvement in his care meant discussing “the rest of my lab work. [To tell me] if I’m alright you know. And if it’s affecting something else in my body” (T1). After his visit with his new provider, he described his new relationship with his physician as a partnership because the physician would “talk at my level like we were friends; she treated me real good of course” (T2). He further described involvement as having a “sharper” idea of how HIV was affecting his health and having a better understanding of the ways his medications worked.

4. Discussion and Conclusion

4.1. Discussion

The themes we found in our interviews reflect the variety of ways patients define involvement, the different clinician behaviors they see as cultivating involvement, and the way their definition of involvement changes over time. It is thus first important to recognize that patient perception is a critical conceptual piece of involvement, along with patient and provider behavior. Although much of the work in this area seeks to optimize patient and provider behavior for maximum patient involvement, understanding that patients differ in the way they think of involvement is a critical starting point for crafting these interventions [4–9]. Sensitivity to this variation could be particularly useful for clinicians seeing new patients, whose expectations of involvement might differ from the clinician’s. As discussed in the literature of patient preferences for decision-making, a clinician might interpret a patient’s reticence to contribute to clinical decision-making as a lack of involvement [23–25]. Our findings help explain that patients might be expecting clinicians to activate their involvement in other ways, such as clear instructions with which they can comply. It is thus important to recognize that for some patients, involvement in care is more a matter of adhering to a treatment plan than deliberating clinical decisions, while for others, it is a matter of gathering information.

We also found that new patients perceive some physician behaviors as important to cultivating involvement. The first two types of behaviors we discussed—soliciting feedback and discussing tradeoffs—fit with previous work identifying the clinician behavior patients perceive as facilitating their involvement [14–15]. Narrating decision-making processes, however, has not been discussed in this context. Similar to the patient expectations discussed above, this behavior does not involve eliciting patient responses, but instead involves a clinician discussing her thought process. Again, this theme underscores the idea that patients can feel involved when understanding how clinical decision are made, as opposed to taking an active role in making those decisions.

Finally, patient perception of involvement can change over time. Although some patients maintained their ideas about involvement over time, many patients’ ideas changed. One way to reconcile patients’ changing views with the themes we have discussed is to understand that while patients might begin a relationship with a new physician with specific ideas about involvement in mind, these ideas can change as their relationship continues. A patient who initially does not want to be involved in making decisions might ultimately become comfortable enough to take a more active role in making treatment choices. The notion that patients’ ideas of involvement differ within different contexts, such as severity of illness, is not new [13–18]. However, our findings highlight the fact that each individual patient’s perceptions of involvement are also dynamic, and their expectations can change over time.

Future studies are needed to articulate and test specific methods to effectively elicit patients’ desired level of involvement and assess how it changes over time. Previous work has noted the gap between self-reported patient involvement and actual patient behaviors (e.g. asking questions, stating preferences) [6–8]. Our work can be used to complement future work that seeks to bridge the gap between perception of involvement and patient behavior.

This study has a few limitations. We conducted our study among mostly male patients diagnosed with HIV infection at two public institutions, so the themes we have discussed with depth may be unique to this population. We should also note that a majority of the study participants were Non-Hispanic Black or Hispanic, groups often underrepresented in studies on patient-provider communication [29–31]. Longitudinal drop-out also reduced the amount of data available to study the potential change in attitude towards being involved. However, with over 30 participants at our last interview and given the largely homogenous characteristics (i.e., all patients had HIV infection and were new to the clinic), we reached data saturation [32].

4.2. Conclusion

Our study findings revealed that patients who were seeing a new provider for the first time interpreted and perceived being ‘involved’ differently, identified different physician behaviors as cultivating involvement, and changed their ideas about involvement over time. Given the growing attention to personalized care and precision medicine, researchers and clinicians must recognize this variation and develop interventions that take patient perception into account.

4.3. Practice Implications

Both clinicians and researchers should recognize that patients’ ideas of involvement can vary greatly, and strategies for cultivating involvement must be tailored to individuals. Undoubtedly, clinician behavior not only contributes to actual patient involvement, but perceived patient involvement as well. Thus, particularly for new patients, finding strategies to make patients feel involved in their care is important, even if those strategies do not necessarily promote more talk from the patient.

Highlights.

  • Patients defined involvement in terms of adherence, information, and decision-making.

  • Patients also defined involvement in terms of encouraging physician behaviors.

  • Patient definitions of involvement changed over time.

Acknowledgments:

We thank Sarah M. Njue, a Masters-level research coordinator with formal training in qualitative methods, who, along with Dr. Dang and as part of the larger study, conducted many of the in-person interviews and independently coded the data.

Funding: Dr. Dang is a current recipient of the K23 Mentored Patient-Oriented Research Career Development Award from the National Institutes of Health (K23 MH100965). This study is supported by the Baylor College of Medicine Chao Physician-Scientist Award and the K23 Award (K23 MH100965). It is also supported in part by the facilities and resources of the Department of Veterans Affairs, Veterans Health Administration, Health Services Research and Development Service, and the Center for Innovations in Quality, Effectiveness and Safety (#CIN 13–413), Michael E. DeBakey VA Medical Medical Center, Houston, Texas.

Ethics approval and consent to participate: The Institutional Review Board at Baylor College of Medicine and the DeBakey VA Research and Development Committee approved this study. All participants gave written informed consent.

Footnotes

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Consent to publish: Not applicable

Availability of data and materials statement: This is a qualitative study with full length interviews. Requests to view de-identified interview data will be considered on a case-by-case basis, following written request to the Principal Investigator.

Competing interests: The authors declare that they have no competing interests.

Publisher's Disclaimer: Disclaimer: The views expressed in this article are those of the authors and do not necessarily represent the views of the Department of Veterans Affairs.

1

For each quotation provided, we include the interview time at which the quotation occurred: T1, T2, or T3.

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