Strategies to Promote Adherence to Antiretroviral Therapy Applied by Dutch HIV Nurse Consultants: A Descriptive Qualitative Study Sigrid C. J. M. Vervoort, RN, PhD Mieke H. F. Grypdonck, RN, PhD Boukje M. Dijkstra, RN, MSc Esther E. B. Hazelzet, RN, MSc Bert Fledderus, RN, MSc Jan C. C. Borleffs, MD, PhD Andy I. M. Hoepelman, MD, PhD This study describes strategies used by Dutch HIV nurse consultants to promote adherence to antiretroviral therapy (ART) and the assumptions on which these strategies were based. The study used a descriptive qualitative design with individual and focus group interviews. Individual semi-structured interviews (n 5 23) focusing on adherence-supporting procedures and case-based focus groups (3 groups with 5-7 participants each) focusing on adherence strategies were held with HIV nurse consultants (n 5 19). The strategies described were mainly based on experience. Theoretical principles were rarely discussed and participants seldom referred to the literature. Adherence-promoting strategies were identified for two phases: (a) before beginning ART and (b) during follow-up care while on ART. Strategies that were not used in one specific phase were categorized under ‘‘all phases.’’ Data yielded useful ideas for the care of HIV-infected patients, and findings can be applied to the development and use of adherencepromoting strategies. (Journal of the Association of Nurses in AIDS Care, 21, 489-502) Copyright Ó 2010 Association of Nurses in AIDS Care
Sigrid C. J. M. Vervoort, RN, PhD, is a Clinical Nurse Specialist in Infectious Diseases and AIDS, Department of Internal Medicine and Infectious Diseases, University Medical Centre Utrecht, Utrecht, The Netherlands. Mieke H. F. Grypdonck, RN, PhD, is a professor of Nursing Science, Nursing Science Section, University of Ghent, Ghent, Belgium, and Department of Nursing Science, University of Utrecht, Utrecht, The Netherlands. Boukje M. Dijkstra, RN, MSc, is a Nursing Researcher and Critical Care Nurse, Departments of Accident and Emergency and Critical Care, University Medical Centre St Radboud, Nijmegen, The Netherlands. Esther E. B. Hazelzet, RN, MSc, is a Clinical Nurse Specialist in Infectious Diseases and AIDS, Department of Internal Medicine and Infectious Diseases, University Medical Centre Utrecht, Utrecht, The Netherlands. Bert Fledderus, RN, MSc, is a nurse manager, Departments of Internal Medicine and Infectious Diseases, and Geriatrics, University Medical Centre Utrecht, Utrecht, The Netherlands. Jan C. C. Borleffs, MD, PhD, is a professor of Medical Education, University Medical Centre Groningen, University of Groningen, Groningen, The Netherlands. Andy I. M. Hoepelman, MD, PhD, is a professor of Medicine and Infectious Diseases, Department of Internal Medicine and Infectious Diseases, University Medical Centre Utrecht, Utrecht, The Netherlands. Andy I. M. Hoepelman reports the following relationships: consultancies with Bristol-Myers Squibbb, consultancies and research support with Gilead, consultancies with Novartis, research support and consultancies with Roche, consultancies with Tibotec, and research support and consultancies with Pfizer. The other authors report no real or perceived vested interests that relate to this article (including relationships with pharmaceutical companies, biomedical device manufacturers, grantors, or other entities whose products or services are related to topics covered in this manuscript) that could be construed as a conflict of interest.
JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 21, No. 6, November/December 2010, 489-502 doi:10.1016/j.jana.2010.03.002 Copyright Ó 2010 Association of Nurses in AIDS Care
490 JANAC Vol. 21, No. 6, November/December 2010
Key words: adherence-promoting strategies, focus groups, HIV nurse consultants, individual interviews
After the introduction of combination antiretroviral therapy (ART), HIV-related mortality decreased significantly in developed countries and became a chronic illness (Mocroft et al., 2003). The benefits of ART may not be achieved, however, without strict adherence to treatment. Low adherence has been shown to be associated with viral rebound, progression to AIDS (Bangsberg et al., 2001), death (Hogg et al., 2002; Lima et al., 2007), and drug resistance (McNabb et al., 2001). Effective adherence interventions are needed to assure success with ART. Because adherence is important for treatment success, most research seeks to describe influencing factors and the effects of interventions, providing information to health care providers on how to optimize adherence to ART (Amico, Harman, & Johnson, 2006; Clumeck, Dedes, Pozniak, & Raffi, 2008; Gazzard, 2008; Panel on Antiretroviral Guidelines for Adults and Adolescents, 2009; Simoni, Amico, Pearson, & Malow, 2008; Stone, 2001, 2002; World Health Organization, 2003). However, strategies for optimizing adherence that are applied in daily practice have only been reported to a limited extent. A qualitative study of 23 physicians, eight nurse practitioners, and four physician assistants aimed to deepen understanding of the challenges encountered in HIV care (Gerbert, Bronstone, Clanon, Abercrombie, & Bangsberg, 2000). The authors described factors that needed to be considered before initiating ART, including readiness and pretreatment strategies to enhance adherence such as education, placebo trial medication runs, and identification of cues as a reminder. Furthermore, they described the strategies that were used when the patient was on treatment: education about combination therapy, the consequences of nonadherence, anticipation of problems that might interfere with adherence, approaches to identify problems, discussions about medication regimens, instruction to the patient as to what to do if problems arose, encouraging patients to adhere, referral to programs to educate patients, and treatment of adherence-impeding conditions. Providers showed variation in the frequency and thoroughness
of adherence assessment. Some assessed adherence at every visit, others only if they expected problems. The study also showed that reliable information about adherence behavior could be obtained if the health care provider maintained a nonjudgmental attitude. Nurses can make important contributions to treatment adherence in HIV-infected patients. They play a central role in HIV care and can provide support, counseling, advice, and information based on patient care needs. In The Netherlands, there is a rich tradition of nursing care for HIV-infected patients. The first HIV treatment centers were established in the early 1980s in accordance with the Hospital Facility Act (Wet op de Ziekenhuisvoorzieningen), and the HIV Nurse Consultant (HNC) was introduced to HIV care. A governmental board specified that all centers should guarantee the presence of HNCs who were experienced in the field of HIV care, with or without postgraduate qualifications on a professional or academic level. At present, 25 hospitals are designated as HIV treatment centers. Physicians and HNCs work together to offer treatment and support to all HIV-infected patients in The Netherlands (Vervoort et al., in press). All patients have their own physician and HNC. Adherence is a major theme for nursing care of HIV-infected patients. All HNCs are members of the professional group of HIV/AIDS Nursing Consultants (Verpleegkundig Consulenten HIV/AIDS).
The Study The aims of our study were to explore the types of strategies that HNCs used to promote adherence to ART, discover the rationale behind these strategies, and describe how the strategies were used in daily practice. We followed a procedure based on the model for the development of evidence-based nursing interventions. Evidence-based nursing practice is defined as the use of empirical research findings to develop nursing procedures (van Meijel, Gamel, van Swieten-Duijfjes, & Grypdonck, 2004). After defining a problem, the model involves gathering the ‘‘building blocks.’’ A variety of sources are used to provide information for intervention development: findings from the published data, problem analyses, needs analyses, and an analysis of current practices.
Vervoort et al. / Strategies to Promote Adherence to ART
HIV nurses develop strategies for daily practice and then analyze the problems they encounter. Current practices are informative when developing new interventions; established strategies can be refined and developed further in a scientific manner. Information about current practices can supplement evidence with experience-based knowledge. The intervention/ approach will be designed and validated in subsequent studies.
Demographic and Background Characteristics Participants
Characteristic Women Men Age range (yr) Education level Without postgraduate qualification With postgraduate qualification (MANP/MSc)
In Individual Interviews
In Focus Groups
13 10 28-57
14 5 35-58
6 3 35-58
Study Design The study was descriptive and qualitative in nature. We used two data collection methods, individual interviews and focus groups, to explore HNC adherence-supporting practices. These methods were chosen (a) because of their complementary natures, (b) to achieve a more complete description of applied adherence-promoting strategies, and (c) to overcome the limitations of a single method. Sample One HNC from each of 23 HIV treatment centers completed an individual interview, and three focus groups included 19 HNCs from 13 different HIV treatment centers. All HNCs in the study were Dutch Caucasians. The years of experience as an HNC varied from 1 to 21 years (Table 1). Focus groups were discontinued when the third group did not provide any additional or new information. Procedure One respondent from each of 23 HIV treatment centers was selected for participation in an individual interview. Three of the researchers, who also worked as HNCs, had access to phone numbers and e-mail addresses of all Dutch HNCs. The most experienced nurse of the team (with one exception) at each center, based on his/her experience in the care of HIVinfected patients, was approached and invited to participate, as it was our aim to gather broad practice-based knowledge. The researchers knew which HNCs were most experienced from collegial
interactions. Each HNC was invited by telephone and all agreed to participate. Participants for the focus groups (n 5 19) were recruited from 71 HNCs at 13 of the 24 HIV treatment centers, using a convenience sampling method. All study participants were informed about the study purpose and methods verbally and in written format. Agreement and participation in the study were considered as consent. Confidentiality was guaranteed and all material was handled anonymously. The study was approved by experts of the University of Utrecht on its scientific merits and met the prevailing rules of approval of the University Medical Centre Utrecht. Data Collection Individual interview data were collected during 13 face-to-face and 10 telephone interviews using a semi-structured interview guide. The use of openended questions allowed participants to discuss their practices as well as their opinions, while a reasonably strong structure was maintained. The interviews were completed between May 2006 and February 2007 and were conducted by two researchers, both working as HNCs and both studying for higher degrees. The interviews lasted 45 to 95 minutes and focused on the specific care provided by the HNC, with an emphasis on strategies concerning adherence. Faceto-face interviews were held at the office of the participating HNC. The telephone interviews were held for practical reasons (distance, time constraints of the interviewee), at a time and place convenient for the participant.
492 JANAC Vol. 21, No. 6, November/December 2010
Focus group interviews took place between May 2007 and December 2007 and lasted 120 minutes each. All focus groups were led by one researcher and attended by another researcher, who served as an observer. Both had group interviewing experience. Patient cases were used to trigger discussion in the focus groups. The cases were made on the basis of patients in the researcher’s case load, and were made unrecognizable by changing some patient characteristics. The cases characterized clients in need of adherence support that the participants might meet in their own practices. Different adherence themes were represented in the cases (coping with the disease, preparation phase for the start of ART, regularly nonadherent and being treated with final treatment options, and quality of life issues). HNCs were asked to discuss how they would proceed in these cases. The group leader asked clarifying and probing questions and used a guide to put adherence themes forward if not spontaneously addressed by the panel. Three of the four cases were used in each focus group interview. Data Analysis All individual interviews and focus groups were audiotaped, except for one interview where the recording device did not work. Notes were taken during this interview, and the text of the notes were used in the analysis. All audio tapes were transcribed verbatim, and the texts were entered in the software program WINMAX-PRO (Kuckartz, 1998) for analysis of qualitative data. Texts of all of the data were read first to acquire an overall picture of the discussion and then reread several times to grasp the details. The focus group interviews were analyzed first because those data had more depth than the individual interviews, which covered more topics. Focus group discussions brought to light the trends of thought underlying proposed adherence strategies. The text was coded line-by-line and paragraph-byparagraph, extracting the themes and the content within the themes. Color coding was used to identify contributions of individual HNCs to follow the train of thought, and the code-tree was developed. Proposed strategies to promote adherence, as well as the underlying considerations and rationales for
the strategies were identified; both were explicated by the HNCs and clearly derivable from statements in the focus groups. Text parts that were coded with the same code were analyzed together, and main strategies and underlying arguments emerged. Interpretations were made in the context of other contributions as well as in the context of the interactions between HNCs. Concepts were described and categorized according to commonalities. Categories that emerged were checked in a constant comparative analysis. Analysis of the individual interviews was guided by results from the focus groups. The texts of the individual interviews were analyzed using the codetree developed during the analysis of the focus groups, and the code-tree was refined. A comparative analysis focused on similarities and differences with focus group findings. Four researchers were involved in this process, providing investigator triangulation (Denzin, 1970). They discussed the analyses until agreement was reached, continuously checking the interpretation with other data. The analysis of data from the first focus group provided input for the analysis of the second and third groups. Validity Validity was enhanced by creating a nonjudgmental atmosphere during the focus groups. Literal transcriptions of recorded data diminished chances of bias. The use of two data-gathering methods helped to overcome the limitations of a single strategy. Investigator triangulation in all phases of the study enhanced the validity of the interpretation (Denzin, 1970). We used researcher triangulation and memos, which reported tentative ideas and thoughts during the analysis process, throughout the entire analysis process.
Findings Strategies used by the HNC participants to promote adherence behaviors are reported according to two phases: before beginning treatment and during follow-up care while on treatment. As far as possible, the order of strategies has been defined by the process
Vervoort et al. / Strategies to Promote Adherence to ART Table 2.
Strategies Used by Participants to Promote Adherence Core Strategies
Strategies used in the phase before beginning treatment Preparing the patient for ART Preparing to start ART Assessing patient acceptance of HIV
Checking patient moods Ascertaining the role of disclosure
Passing on knowledge
Adjusting to the demands of ART
Preparing to manage side-effects Assessing motivation to start ART Assessing self-efficacy Preparing the patient to remember medications Arranging social support Reducing risks related to low economic status and homelessness Planning consultations to patient needs
Take time to prepare for ART Prepare for the start of treatment related to CD41T cell count Explore how well the patient has accepted the diagnosis Delay the start of ART when acceptance is insufficient Advise starting treatment and simultaneously address nonacceptance Check moods not directly related to having HIV infection Discuss disclosure of HIV Explore who has been informed and who has not Give tips and tricks to prevent unwanted disclosure Provide information about the treatment Tailor information to the specific patient Check whether the information provided is clear Involve the patient in the selection of specific antiretroviral medications Help patient think about the best times to take treatment Develop medication schedules Advise practicing with sweets or vitamins Teach patient about possible unpleasant side-effects Start treatment on non–work days Encourage patient to think about motivation Assess self-efficacy to take medication adherently Discuss ways to remember medications Advise the use of practical aids to increase adherence Discuss social relationships with the patient Find out whether a partner is supportive or not Offer intensive support and advise a regimen compatible with the patient’s life Arrange intensive contact
Strategies used during treatment phase Discussing (non)adherence behavior
Adjusting to the demands of ART
Assessing acceptance of HIV Evaluating when medication is forgotten Evaluating side effects
Ascertaining the role of disclosure Evaluating ambivalence Providing insight into the effect of treatment
Ask in-depth questions Reinforce adherence with praise Confront patients with observed adherence discrepancies Discuss medication intake and adherence Discuss solutions to problems Change medication to a simpler regimen Change the times when medications are taken Discuss nonadherence behavior Discuss motivation to change behavior Advise a drug holiday Assess whether acceptance problems are the reason for nonadherence Create a therapy break in case of nonacceptance Discuss forgetting during treatment Advise use of practical aids to increase adherence Assess for side effects Change medications Advise a therapy break Discuss nondisclosure as a possible barrier to adherence Give tips and tricks to prevent unwanted disclosure Discuss whether ambivalence toward medication is playing a role in nonadherence Explain lab results (Continued )
494 JANAC Vol. 21, No. 6, November/December 2010 Table 2. (Continued ) Core Strategies Passing on knowledge Assessing motivation to take ART Evaluating the effect of social support Planning consultations Reducing the risk for nonadherence related to low economic status and homelessness
Interventions Engage in multiple discussions about adherence and the consequences of nonadherence Discuss the patient’s motivation to take treatment and to be adherent Use Motivational interviewing Find out whether a partner is supportive or not Arrange intensive contact Offer intensive support Advise a regimen compatible with the patient’s life
Strategies used in all phases Offering support to diminish a patient’s psychological distress Building relationships
Thinking about professional roles and responsibilities Giving support in the patient’s home
Offer support Refer patients to other professionals as needed Build trusting relationships with the patient Use empathy and sympathy Acknowledge the patient’s situation Support patients; don’t make decisions for them Leave the responsibility with the patient Visit patients at home
NOTE: ART 5 antiretroviral therapy.
of adherence support as used in practice. Strategies that were not used in one specific phase were categorized under ‘‘all phases.’’ A summary is provided in Table 2.
Strategies Used Before Beginning Treatment Preparing the patient for ART. The HNCs said that they gave patients sufficient time to prepare for ART, as they believed that time to get accustomed to the idea of a life with medications had a positive influence on adherence in the long term. Early in the relationship, the HNCs would discuss the effect of starting treatment and how treatment would fit into the patient’s life. HNCs discussed misconceptions about treatment as needed. Preparing for ART. The HNCs started preparing patients for ART before the CD41 T cell count decreased to treatment levels (, 350 cells/mm3 in The Netherlands). HNCs thought nonadherence was more likely to occur when a patient had to start medication soon after hearing the diagnosis. Assessing patient acceptance of HIV. HNCs explored whether the patient had accepted the diagnosis, as they were convinced that nonacceptance
was a risk factor for nonadherence. They said that starting treatment could lead to a renewed confrontation with having a diagnosis of HIV and that effort was required to once again accept the illness. If acceptance had not been reached before starting ART, participants used different strategies. Some delayed the start of ART, proposing prophylaxis for Pneumocystis jiroveci pneumonia instead, thus creating time to accept the diagnosis before initiation of ART. They would also set a time limit within which ART should be started because they were convinced that waiting too long to start ART was a risk for nonadherence. Other HNCs advised starting treatment and simultaneously addressing nonacceptance. In all circumstances, the HNCs said they would address acceptance during follow-up consultations. One HNC told patients that acceptance of HIV could not be achieved from one moment to the next and offered patients the choice of delaying treatment for a while. Checking patient moods. The participants said that they assessed patients for depression when medication was started because depression in a patient’s history was an exclusion criterion for starting at least one ART agent (efavirenz). Depression was typically assessed during a conversation with the patient and without a depression scale. Interventions related to
Vervoort et al. / Strategies to Promote Adherence to ART
moods as possible influencing factors for nonadherence were not discussed in the focus groups. Ascertaining the role of disclosure. Participants said that they discussed disclosure of HIV in an early stage of the relationship with a client because nondisclosure tended to impede adherence and could lead to social isolation and loneliness. They argued that, for patients with specific cultural backgrounds (e.g., Ghanaian, Surinamese), privacy was an even greater issue. HNCs thought that disclosure should be encouraged because patients who disclosed to direct relations were more likely to be adherent. They were convinced that nondisclosure could lead to situations that would make taking medication difficult (i.e., when it was not possible to take medication secretly, a dose could be easily postponed, skipped, or forgotten), and that openness would facilitate support if significant others took on the task of reminding patients to take medications. Some of the HNCs said they told patients that they needed to break through the stigma for themselves before they could decide how to deal with disclosure. When discussing disclosure with patients, HNCs explored who had been informed, who had not, and the barriers for disclosure (e.g., fear of stigmatization and rejection, past experiences). They tried to identify the possibility of informing the partner, immediate family, or others close to the patient. They thought that patients themselves were in the best position to judge the ideas of people around them and helped patients evaluate the danger of stigmatization. Some HNCs summed up the advantages and disadvantages of disclosure and nondisclosure to help the patient assess the situation. The final decision, however, was left to the patient. One HNC advised patients not to link disclosure to starting treatment because starting ART would be stressful enough. Instead, tips were given on how to remain adherent while preventing unwanted disclosure. Passing on knowledge. The HNCs provided information about treatment to help prepare patients for ART. Participants said that patients could only make a well-informed decision to start treatment if they knew about the consequences and risks of therapy. HNCs thought that if patients did not understand the principles of ART, the risk of nonadherence
increased. HNCs assessed what patients did and didn’t know about HIV and its treatment before discussing these issues. They then corrected any gaps in knowledge and tailored information to the specific patient. The amount of information provided was adapted to what a patient was thought to be able to assimilate. If necessary, the HNCs planned for extra consultations. HNCs checked whether the information was clear by asking the patient to repeat the information in his/her own words. HNCs gave information about the effect of HIV on the body and explained that low CD41 T cell levels could lead to illness. They always discussed the goals of treatment, how the medication worked, and the importance of adherence with regard to HIV plasma levels and the risk of resistance. Some used drawings and graphs and simplified the information as needed. In some treatment centers, the HNC could also show a video on these topics. Adjusting to the demands of ART. HNCs believed it was important to adapt the treatment regimen to the patient’s lifestyle and to fit the medication schedule into the patient’s daily life. Most of the participants involved the patient in the selection of the treatment regimen. When the physician prescribed a regimen that did not fit the patient’s lifestyle, the HNC would discuss it with the physician and propose other regimens. HNCs encouraged patients to think about the best time of day to take medications. Between consultations and before starting ART, the HNCs allowed time for the patient to decide when it would be best to take medication and advised patients to choose a time that would fit both weekday and weekend schedules. They recommended schedules that would decrease the risk of unwanted disclosure (e.g., not taking medication at work). The HNCs prepared medication schedules (including times and pill stickers) that showed when each dose needed to be taken. Patients were given tips and tricks for adherence. Some HNCs advised patients to practice with sweets or vitamins to find out if a chosen schedule would work and to experience what it would be like to be adherent. They thought these trial runs helped patients identify potential barriers and allowed schedules to be adapted before actually starting treatment.
496 JANAC Vol. 21, No. 6, November/December 2010
The participants wanted their patients to decide when to start ART. They wanted their patients to get used to the idea and to create time to talk about it with others because they thought that taking time to make an informed decision would influence adherence positively. Preparing for side effects. All of the HNCs prepared their patients for side effects before ART was started because they were convinced that side effects could lead to nonadherence, especially if patients were starting ART during the asymptomatic phase. HNCs advised patients to start treatment on non–work days to be able to deal with any side effects more easily. Patients were also prepared for the possible reactions of others to the side effects, as those reactions could threaten secrecy and lead to adherence problems. Some HNCs informed patients about strange sensations that the medication could arouse and explained that the sensations were a sign that the medication was working. Patients were told not to worry too much about side effects. HNCs said they carefully weighed the amount of information to provide because they were afraid that, if too much attention was given to side effects, patients would focus on the negative aspects of treatment. Opinions differed between the HNCs as to how much to reveal about side effects. Assessing motivation to start ART. HNCs thought it was necessary to help patients think about their personal motivations to start treatment. According to the HNCs, motivation could be promoted by involving patients actively in the decision to start treatment. How they assessed a patient’s motivation or readiness was, however, not discussed. Assessing self-efficacy. Some HNCs assessed self-efficacy for medication adherence by discussing the patient’s ability to take treatment adherently. When self-efficacy was thought to be low, the start of treatment was postponed, if medically possible. Preparing the patient to remember medications. HNCs helped patients remember to take their medications and advised them to use reminders, such as a watch with an alarm or a mobile phone alarm system. They warned patients about situations that
could disrupt routines and advised them to have pills readily available. They advised patients to use pill boxes or medication blister packages. Some of the HNCs were convinced that the use of practical aids to increase adherence did not solve adherence problems, as the patient needed to remember to keep the watch, alarm, or cell phone on and with them. If patients lacked motivation or organizational skills, medication could still be forgotten. Arranging social support. HNCs said they discussed social relations with their patients and assessed the quality of those relations because they thought that social relations could facilitate adherence. They asked patients about people in their environments who could be supportive. Reducing risks related to low economic status and homelessness. HNCs explained that patients who were homeless had difficulties being adherent and that adherence was even more difficult for undocumented migrants, whose priorities were often related to basic survival. HNCs offered intensive support to these patients and constructed regimens as compatible as possible with the patients’ lives. Planning consultations according to patient needs. HNCs planned additional consultations when they thought it necessary for adherence. If a patient was not ready to start therapy, HNCs followed the CD41 T-cell count and discussed with the patient about treatment to encourage readiness. When HNCs expected difficulties related to adherence, they increased contact. However, some HNCs felt they should not ‘‘push the patient’’ into treatment. Strategies Used During Follow-up Care While on Treatment Discussing (non)adherent behavior. After the start of ART, HNCs discussed medication adherence at each consultation. They asked if taking pills was troublesome and if adherence problems had arisen. They explained that their aim was for patients to be honest about adherence behaviors. HNCs praised patients who were adherent, hoping this would help maintain adherence. Most of the HNCs asked patients to describe their medication schedules in detail (which pills, how
Vervoort et al. / Strategies to Promote Adherence to ART
many, and at what times), to identify adherence problems. Many of the HNCs used a sample pill box and asked patients to point out the pills they were taking. In some treatment centers, plasma drug levels were checked to assess adherence. One HNC confronted patients when plasma drug levels were low, explaining that this was a consequence of nonadherence. HNCs asked in-depth questions to uncover underlying reasons for specific behaviors, discussed nonadherent behaviors, and tried to determine if a patient was motivated to change. Some HNCs interpreted the needs of a patient and predicted behaviors based on the patient’s responses in this discussion. Some HNCs confronted patients with the consequences of their behaviors, but others were more reluctant to interpret their observations. In cases of persisting nonadherence, some HNCs would repeatedly warn the patient about potential consequences. HNCs explained that some patients said they felt guilty or frustrated about being nonadherent and they used the patient’s feelings to improve adherence. Some HNCs advised patients to stop treatment if they continued to be nonadherent. Participants believed that stopping treatment for a while would facilitate adherence when medications were restarted, especially if HIV-related symptoms recurred. The HNCs thought that patients often overestimated their adherence levels. Some said that when adherence was not a problem during the first period of taking ART, there would be no problems in the longer term, and that when problems occurred at the start, there was a greater chance that adherence would remain problematic. Some of the HNCs, however, expected that being adherent in the long term could be difficult for patients when they had to deal with life changes, such as the occurrence of psychological problems. Adjusting to the demands of ART. When they concluded that a regimen created too great a risk for nonadherence, HNCs talked to the patient and the physician about the possibility of changing medications to a simpler regimen, as they thought that simplification would facilitate adherence. When the medication schedule no longer fit into the patient’s lifestyle, dosage times were changed accordingly.
Assessing acceptance of HIV. During treatment, the participants tried to discover whether nonadherence was the result of acceptance problems. They said that if acceptance was a problem, patients were often not open to adherence suggestions. Some HNCs said that they advised a therapy break if nonacceptance was causing nonadherence. They hoped that having time to deal with the diagnosis would lead to greater acceptance and better treatment adherence. Evaluating when medication is forgotten. HNCs discussed forgetting during all consultations after starting ART and (a) tried to find out the circumstances under which medication was forgotten, (b) analyzed possible reasons, and (c) proposed solutions. Forgetting sometimes happened when taking medications became ‘‘too routine,’’ because taking medication would happen without thought and might be difficult to remember afterwards. Deviations from daily routine were also problematic. In the first instance, strategies focused on short-term solutions such as practical aids (reminders, pill boxes, etc.). When adherence was threatened by special circumstances, one HNC advised patients to take doses early to avoid long delays or forgetting. Evaluating side effects. The participants asked patients whether side effects were impeding adherence and/or influencing quality of life. If so, they considered whether medications needed to be changed and discussed their observations with a physician. Some HNCs would consider a therapy break when they suspected that nonadherence occurred because of side effects. When the development of lipodystrophy decreased adherence, cosmetic treatment was advised. Ascertaining the role of disclosure. HNCs talked to their patients about nondisclosure as a possible barrier to adherence during treatment. When nondisclosure was a main reason for nonadherence, HNCs saw disclosure as a solution, but they also discussed the risks of disclosure. Evaluating ambivalence. Participants asked patients about ambivalence (the experience of the paradox that the medications were both life-saving and harmful) and whether this was an issue. They
498 JANAC Vol. 21, No. 6, November/December 2010
acknowledged the patient’s feelings and carefully confronted patients with their observations. They tried to avoid upsetting the patient in doing so. The HNCs thought that facing these feelings was a precondition for taking stock and making appropriate choices for the future. When a patient viewed treatment as harmful instead of beneficial, HNCs discussed the patient’s motivation to continue therapy. They explored the patient’s quality of life and the role of treatment. One HNC would draw a scale and discuss the patient’s ability to bear the burden of treatment and the possibilities for renewed balance. Providing insight into the effect of treatment. HNCs said that, during treatment, patients were given their lab results. Most believed that showing the laboratory evidence of ART adherence helped to promote adherence. Others, however, were ambivalent about giving feedback about lab values: on the one hand, they thought that lab results could motivate patients to take treatment adherently, but, on the other hand, the lab results did not always correspond with the patient’s condition. They explained that patients set great store by lab results, especially the CD41 T cell count. When the CD41 T cell count was around 200 cells/mm3 and did not increase, the HNCs found it difficult to motivate the patient to continue treatment. Passing on knowledge. Participants tried to detect misconceptions about adherence as well as deviations from the prescribed regimen. They often provided information about adherence and the consequences of nonadherence. In particular, they emphasized that resistance could develop and that viral load levels might not increase immediately after missing medication doses. Assessing motivation to take ART. HNCs discussed motivation to take treatment adherently. Some used motivational interviewing methods to discuss these issues. If the motivation to continue on ART was very low, some HNCs advised stopping medication and waiting until the patient got ill before starting a new medication regimen. Others would sometimes propose stopping treatment for a while to give the patient time to solve the problems that
had lead to a lack of motivation. Some, however, considered this to be too dangerous as it could lead to resistance. These HNCs did not think that motivation would increase by temporarily stopping treatment. Evaluating the effect of social support. HNCs asked whether or not partners and significant others had been supportive during treatment. They said they paid special attention to the influence of the partner on adherence, as these relationships could either impede or facilitate adherence. Some helped set up ‘‘exchanging experiences’’ with other HIVinfected patients as a way to help motivate patients and promote adherence. Others did not think they should influence this process, assuming that patients would prefer anonymous contacts. Planning consultations. Experiences during ART initiation were considered important for future adherence. Many HNCs called patients within 1 week of starting therapy and usually saw them in clinic 2 weeks after starting. Reducing the risk of nonadherence related to low economic status and homelessness. The participants knew that patients who were homeless had difficulties being adherent. Those who were undocumented migrants had an even harder time taking medications routinely. HNCs offered intensive support to these patients. Strategies Used in All Phases Offering support to diminish psychological distress. HNCs offered support or referred patients to another professional (e.g., psychologist, social worker) when a patient experienced distress. They thought that distress was related to nonacceptance and that relationship or financial problems were related to nonadherence. They referred the patient to other professionals when they considered the task to go beyond their own abilities or when they saw no progress in the patient’s situation. These data seemed to demonstrate ambivalence about referrals: the HNCs wanted to remain involved with the patient but thought they did not have the appropriate expertise to help the patient.
Vervoort et al. / Strategies to Promote Adherence to ART
Building relationships. The data clearly showed that HNCs invested time and effort to build trusting relationships with patients. The quality of the relationships and openness of the patients were considered to be essential. Participants used empathy and sympathy, and they also acknowledged the patients’ situations. HNCs tried to optimize relationships with patients by showing solidarity and by respecting and treating patients as equals. They built relationships in which patients dared to discuss their feelings and problems and tried to avoid control issues. They strove for committed communications that encouraged patients to open up without fearing consequences. The HNCs planned consultations on a regular basis and wanted to be easily accessible to their patients. Thinking about professional roles and responsibilities. Participants saw the role of the HNC to be a supporter of patients, not a decision maker for patients. They left the responsibility for disease management and treatment adherence to the patients. They explained that, although they provided information and assistance, the patients were in charge and made their own choices. HNCs checked medication intake to find out how successful the patients had been, however, and said it was frustrating when the patients behaved differently from what was expected. In these cases, HNCs would discuss risks involved in the patients’ behaviors. One HNC stopped treatment when nonadherence continued, increasing the risk of treatment failure. In this case, the choice to take ART was not left to the patient. Giving support in the patient’s home. A few of the HNCs made home visits when they expected adherence problems to get pictures of patients’ circumstances. They supported the patients at home and gave advice on how to work within the circumstances to be more adherent.
Discussion The combination of two qualitative data collection methods, individual interviews and focus groups, yielded rich data about strategies HNCs in a developed country used to encourage ART adherence. Experienced researchers developed the interview
and focus group designs, served as interviewers, and facilitated discussions during focus groups. Investigating our colleagues’ practices did not appear to create a barrier to openness during the interviews or to have inhibited free discussions during the focus groups. Data collection benefited from spontaneous interactions between participants in the focus groups. The group leader let discussions develop and asked for clarification or more depth when needed. The HNCs often agreed with each other in focus groups. We have provided a detailed overview of the descriptive data on adherence-promoting strategies discussed by the HNCs in our study. In this section, we discuss the findings. The strategies used to promote or to maintain adherence discussed by the participants in our study were, for the most part, in accordance with the published data (Mills et al., 2006; Vervoort, Borleffs, Hoepelman, & Grypdonck, 2007), even though evidence of the use of explicitly designed interventions was limited. Several of the strategies used by the HNCs had been found to be effective in studies about promoting adherence to ART (Simoni et al., 2008). When discussing cases, the HNCs seemed to base their practices on experience rather than the published data, as they rarely talked about theoretical concepts that would have been applicable to the cases. Motivational interviewing was discussed as an adherence method, and general references were twice made to the published data to justify statements (i.e., ‘‘the literature says’’). During one individual interview, an HNC used self-efficacy as a theoretical concept and referred to a social-cognitive behavioral model in relation to motivation and adherence. Experience seemed to have been a reasonably adequate guide for the HNCs in our study. Experiential knowledge about influencing adherence proved to be largely congruent with research findings in the published data. The authors of a recent metaanalysis on the effect of standard care as provided to control groups in intervention effect studies found that standard care lead to high adherence rates in control groups. They concluded that current best practices were effective for adherence care (de Bruin, Viechtbauer, Hospers, Schaalma, & Kok, 2009). The opinion of several HNCs that when adherence was not a problem early in treatment, it would not
500 JANAC Vol. 21, No. 6, November/December 2010
become a problem in the longer term was, however, not congruent with research evidence. Adherence has been shown to be a dynamic phenomenon that varies in unpredictable ways; it has also been shown to decrease over time (Liu et al., 2006; Parruti et al., 2006). We found that some HNCs advised patients to stop treatment if they could not be adherent. Some of the participants even advised patients to stop therapy until HIV-related illness occurred. However, it has been shown that viral rebound, acute retroviral syndrome, rapid declines in CD41 T cell counts, HIV-disease progression or death, and development of drug resistance may occur as a result of treatment interruptions (Panel on Antiretroviral Guidelines for Adults and Adolescents, 2009). Levels of CD41 T cells below 350 cells/mm3 worsen the prognosis (Geng & Deeks, 2009; Robbins et al., 2009). Furthermore, the Strategies for Management of Anti-Retroviral Therapy Study revealed that volunteers randomized to a strategy in which ART was started when CD41 T cell counts dropped below 250 cells/mm3 and who were taken off treatment when their cell counts rose above 305 cells/mm3 had more than twice the risk of disease progression and of developing complications such as cardiovascular, kidney, and liver disease (El-Sadr et al., 2006). Studies using higher CD41 T cell counts as the threshold for treatment interruptions did not demonstrate these extra risks (Ananworanich et al., 2006; Danel et al., 2006). Furthermore, it is not known how short interruptions affect the risk of disease progression. The decision to stop ART because of nonadherence should only be considered if no other option exists and with full knowledge that the risk of developing resistance is high.
Limitations Twenty-three (32.4%) of 71 Dutch HNCs from 23 of 24 HIV treatment centers participated in individual interviews. Individual interviews gave good insight into working methods that the HNCs thought would encourage adherence, and more information about caring for patients with HIV was discussed during individual interviews than in the focus groups. The depth of the individual interviews may, however,
have been limited by focusing on a narrow purpose to describe current adherence-promoting strategies. Including more of the 71 Dutch HNCs would have provided more data. Nineteen (26.8 %) of 71 Dutch HNCs from 13 of 24 HIV treatment centers participated in the focus groups; 10 of the participants participated in both an individual interview and a focus group. Data provided by those 10 respondents did not differ from data provided by the other respondents. The use of cases to trigger discussions in the focus groups proved to be a fruitful technique. When discussing cases, focus group participants often started by giving advice or general information. Attention to or analysis of underlying problems was discussed only to a limited extent. Although the participants often offered examples from their own practices, adherence strategies discussed in the focus groups were limited by topics set forth in the cases. The picture of adherencepromoting strategies may have been limited due to recruitment strategies, the number of focus groups, and the limited number of participants in the focus groups. More focus groups might have provided a broader picture, although saturation was thought to have been achieved after the third group.
Conclusion This study provides insight into adherence strategies used in Dutch HIV care. The information about strategies used in daily practice has not been previously described to any extent in the published data. The information provided can contribute to the development of adherence-promoting interventions (van Meijel et al., 2004). The strategies used in practice by participants in our study provided additional information that can be used to improve nursing interventions that enhance and maintain adherence. Several additional studies would help to advance the field. The development of new interventions that are adapted to the individual patient would be enhanced by using valid assessment scales such as self-efficacy and depression and anxiety scales to assess patients. A more systematic approach to promoting and maintaining high levels of adherence
Vervoort et al. / Strategies to Promote Adherence to ART
would be desirable. The quality of care delivered by HNCs and whether that care is in accordance with evidence-based practice could be evaluated in an observational study. It would also be interesting to study the efficacy of interventions based on practical experience in a randomized controlled trial.
Dutch HNCs use several adherence-promoting strategies that are predominantly based on experience rather than research or theory. HNCs have a considerable role in helping HIVinfected patients to be adherent as they see patients regularly in consultation in the outpatient clinic. A more systematic approach based on current evidence to support medication adherence is needed.
Disclosures Andy I. M. Hoepelman reports the following relationships: consultancies with Bristol-Myers Squibbb, consultancies and research support with Gilead, consultancies with Novartis, research support and consultancies with Roche, consultancies with Tibotec, and research support and consultancies with Pfizer. The other authors report no real or perceived vested interests that relate to this article (including relationships with pharmaceutical companies, biomedical device manufacturers, grantors, or other entities whose products or services are related to topics covered in this manuscript) that could be construed as a conflict of interest.
Acknowledgments The authors acknowledge the contribution of the HIV Nurse Consultants from the Dutch AIDS treatment centers.
References Amico, K. R., Harman, J. J., & Johnson, B. T. (2006). Efficacy of antiretroviral therapy adherence interventions: A research synthesis of trials, 1996 to 2004. Journal of Acquired Immune Deficiency Syndrome, 41, 285-297. doi:10.1097/01.qai. 0000197870.99196.ea Ananworanich, J., Gayet-Ageron, A., Le, B. M., Prasithsirikul, W., Chetchotisakd, P., Kiertiburanakul, S., . Hirschel, B. (2006). CD4-guided scheduled treatment interruptions compared with continuous therapy for patients infected with HIV-1: Results of the Staccato randomised trial. Lancet, 368, 459-465. Bangsberg, D. R., Perry, S., Charlebois, E. D., Clark, R. A., Roberston, M., Zolopa, A. R., & Moss, A. (2001). Nonadherence to highly active antiretroviral therapy predicts progression to AIDS. AIDS, 15, 1181-1183. Clumeck, N., Dedes, N., Pozniak, A., & Raffi, F. (2008). Guidelines: Clinical management and treatment of HIVinfected adults in Europe. Retrieved from http://www. europeanaidsclinicalsociety.org/guidelinespdf/1_Treatment_ of_HIV_Infected_Adults.pdf Danel, C., Moh, R., Minga, A., Anzian, A., Ba-Gomis, O., Kanga, C., . Anglaret, X. (2006). CD4-guided structured antiretroviral treatment interruption strategy in HIV-infected adults in West Africa (Trivacan ANRS 1269 trial): A randomised trial. Lancet, 367, 1981-1989. doi:10.1016/S01406736(06)68887-9 de Bruin, M., Viechtbauer, W., Hospers, H. J., Schaalma, H. P., & Kok, G. (2009). Standard care quality determines treatment outcomes in control groups of HAART-adherence intervention studies: Implications for the interpretation and comparison of intervention effects. Health Psychology, 28, 668-674. Denzin, N. (Ed.). (1970). Sociological methods: A sourcebook (5th ed.). New Brunswick, NJ: Transaction. El-Sadr, W. M., Lundgren, J. D., Neaton, J. D., Gordin, F., Abrams, D., Arduino, R. C., . Rappoport, C. (2006). CD41 count-guided interruption of antiretroviral treatment. New England Journal of Medicine, 355, 2283-2296. Gazzard, B. G. (2008). British HIV Association guidelines for the treatment of HIV-1-infected adults with antiretroviral therapy 2008. HIV Medicine, 9, 563-608. Geng, E. H., & Deeks, S. G. (2009). CD41 T cell recovery with antiretroviral therapy: More than the sum of the parts. Clinical Infectious Diseases, 48, 362-364. doi:10.1086/595889 Gerbert, B., Bronstone, A., Clanon, K., Abercrombie, P., & Bangsberg, D. (2000). Combination antiretroviral therapy: Health care providers confront emerging dilemmas. AIDS Care, 12, 409-421. Hogg, R. S., Heath, K., Bangsberg, D., Yip, B., Press, N., O’Shaughnessy, M. V., & Montaner, J. S. G. (2002). Intermittent use of triple-combination therapy is predictive of mortality at baseline and after 1 year of follow-up. AIDS, 16, 1051-1058. Kuckartz, U. (1998). winMAX scientific text analysis for the social science. Berlin, Germany: BSS.
502 JANAC Vol. 21, No. 6, November/December 2010 Lima, V. D., Geller, J., Bangsberg, D. R., Patterson, T. L., Daniel, M., Kerr, T., . Hogg, R. S. (2007). The effect of adherence on the association between depressive symptoms and mortality among HIV-infected individuals first initiating HAART. AIDS, 21, 1175-1183. doi:10.1097/QAD. 0b013e32811ebf57 Liu, H., Miller, L. G., Hays, R. D., Golin, C. E., Wu, T., Wenger, N. S., & Kaplan, A. H. (2006). Repeated measures longitudinal analyses of HIV virologic response as a function of percent adherence, dose timing, genotypic sensitivity, and other factors. Journal of Acquired Immune Deficiency Syndromes, 41, 315-322. McNabb, J., Ross, J. W., Abriola, K., Turley, C., Nightingale, C. H., & Nicolau, D. P. (2001). Adherence to highly active antiretroviral therapy predicts virologic outcome at an inner-city human immunodeficiency virus clinic. Clinical Infectious Diseases, 33, 700-705. doi:10. 1097/01.qai.0000197071.77482.6e Mills, E. J., Nachega, J. B., Bangsberg, D. R., Singh, S., Rachlis, B., Wu, P., . Cooper, C. (2006). Adherence to HAART: A systematic review of developed and developing nation patient-reported barriers and facilitators. PLoS Medicine, 3, e438, Retrieved from. http://www.plosmedicine.org/ article/info:doi/10.1371/journal.pmed.0030438 Mocroft, A., Ledergerber, B., Katlama, C., Kirk, O., Reiss, P., d’Arminio Monforte, A., . Lundgren, J. D. (2003). Decline in the AIDS and death rates in the EuroSIDA study: An observational study. Lancet, 362, 22-29. doi:10. 1016/S0140-6736(03)13802-0 Panel on Antiretroviral Guidelines for Adults and Adolescents. (2009). Guidelines for the use of antiretroviral agents in HIV1-infected adults and adolescents. Retrieved from http://www. aidsinfo.nih.gov/ContentFiles/AdultandAdolescentGL.pdf Parruti, G., Manzoli, L., Toro, P. M., D’Amico, G., Rotolo, S., Graziani, V., . Boyle, B. A. (2006). Long-term adherence to first-line highly active antiretroviral therapy in a hospital-based cohort: Predictors and impact on virologic response and relapse. AIDS Patient Care and STDS, 20, 4856. doi:10.1089/apc.2006.20.48 Robbins, G. K., Spritzler, J. G., Chan, E. S., Asmuth, D. M., Gandhi, R. T., Rodriguez, B. A., . Pollard, R. B. (2009). Incomplete reconstitution of T cell subsets on combination antiretroviral therapy in the AIDS Clinical Trials Group protocol 384. Clinical Infectious Diseases, 48, 350-361. Simoni, J. M., Amico, K. R., Pearson, C. R., & Malow, R. (2008). Strategies for promoting adherence to antiretroviral therapy: A review of the literature. Current Infectious Diseases Report, 10, 515-521. doi:10.1007/s11908-008-0083-y Stone, V. E. (2001). Strategies for optimizing adherence to highly active antiretroviral therapy: Lessons from research and clinical practice. Clinical Infectious Diseases, 33, 865872. doi:10.1086/322698 Stone, V. E. (2002). Enhancing adherence to antiretrovirals: Strategies and regimens. Medscape General Medicine, 4(22). Retrieved from http://www.medscape.com/viewarticle/ 438193
van Meijel, B., Gamel, C., van Swieten-Duijfjes, B., & Grypdonck, M. H. (2004). The development of evidencebased nursing interventions: Methodological considerations. Journal of Advanced Nursing, 48, 84-92. doi:10.1111/j. 1365-2648.2004.03171.x Vervoort, S. C., Borleffs, J. C., Hoepelman, A. I., & Grypdonck, M. H. (2007). Adherence in antiretroviral therapy: A review of qualitative studies. AIDS, 21, 271281. doi:10.1097/QAD.0b013e328011cb20 Vervoort, S.C., Dijkstra, B.M., Hazelzet, E.E., Grypdonck, M.H., Hoepelman, A.I., & Borleffs, J.C. (in press). The role of HIV nursing consultants in the care of HIV-infected patients in Dutch hospital outpatient clinics. Patient Education and Counseling. doi:10.1016/j.pec.2009.11.016 World Health Organization. (2003). Adherence to long-term therapy: Evidence for action. Retrieved from http://www. who.int/chronic_conditions/adherencereport/en/