PH C ABSTRACT Introduction: The purpose of this study was to examine medical providers’ views from two primary care programs regarding adherence to antiretroviral therapy among HIVinfected children. Method: Ten medical providers (five physicians and five registered nurses) working with perinatally HIV-infected children completed a structured questionnaire examining provider-patient/family relationship and participated in an individual qualitative interview regarding providers’ views on pediatric adherence to antiretroviral therapy. Results: Providers believed that the limited treatment options currently available to HIV-infected children presented families with tremendous challenges to adherence. Most children were prescribed difficult treatment regimens and needed increasingly complex regimens for possible success in the future, placing further demands on the adherence issue. Although providers were able to identify several helpful communication strategies in theory, they were not able to consistently implement them in practice. Further, many families are also struggling with poverty, mental health and substance use problems, additional HIV disease in the family, and disclosure issues. Discussion: Adherence to antiretroviral therapy is a long-term, ongoing problem that is directly tied to the family life of the HIV-infected child. Providers clearly play an integral part in this struggle. J Pediatr Health Care. (2003). 17, 252-260.
Pediatric HIV Medication Adherence: The Views of Medical Providers From Two Primary Care Programs E l i z a b e t h B ra ck i s - C o t t , P h D, C l a u d e A n n M e l l i n s , P h D, E l a i n e A b ra m s , M D, Te j a s R e va l , BA , & Curtis Dolezal, PhD
arge numbers of children have chronic illnesses requiring treatment regimens that are complex and need to be managed over the course of a lifetime. Such illnesses include asthma, diabetes, cystic fibrosis, rheumatic diseases, and, more recently, human immunodeficiency virus (HIV). As increasing numbers of these children are surviving into adolescence and Elizabeth Brackis-Cott is an Assistant Professor of Medical Psychology in the Department of Psychiatry at Columbia University and a Research Scientist at the HIV Center for Clinical and Behavioral Studies at the New York State Psychiatric Institute. Claude Ann Mellins is an Assistant Professor of Clinical Psychology in the Department of Psychiatry at Columbia University and a Research Scientist at the HIV Center for Clinical and Behavioral Studies at the New York State Psychiatric Institute. Elaine Abrams is an Associate Professor of Clinical Pediatrics at the College of Physicians and Surgeons, Columbia University, and the Director of the Family Care Center at Harlem Hospital. Tejas Reval is a third year medical student at Brown Medical School. Curtis Doleza is a Research Scientist at the HIV Center for Clinical and Behavioral Studies at the New York State Psychiatric Institute. Supported by (a) a pilot grant to Dr Mellins from a center grant from the National Institute of Allergy and Infectious Diseases to the Columbia-Rockefeller Center for AIDS Research (P30 AI42848; principal investigator, David Ho, MD); (b) a comprehensive center grant from the National Institute of Mental Health to the HIV Center for Clinical and Behavioral Studies at New York State Psychiatric Institute and Columbia University (P50-MH43520; principal investigator, Anke A. Ehrhardt, PhD); and (c) a training grant from the National Institute of Mental Health (T32 MH19139 Behavioral Sciences Research in HIV Infection; principal investigator, Zena Stein, MD). Reprint requests: Elizabeth Brackis-Cott, PhD, HIV Center for Clinical and Behavioral Studies, Unit 29, 1051 Riverside Dr, New York, NY 10032; e-mail: [email protected]
Copyright © 2003 by the National Association of Pediatric Nurse Practitioners. 0891-5245/2003/$30.00 + 0 doi:10.1067/mph.2003.13
PH ORIGINAL ARTICLE C adulthood, treatment adherence is being recognized as an important clinical problem (Riekert & Drotar, 2000). The challenge of managing complex and tedious treatment regimens daily can be an overwhelming task for sick children, their families, and their medical providers. However, nonadherence can lead to illness-related morbidity and mortality. For children with HIV infection, recent advances in the use of antiretroviral therapies have significantly improved life expectancy (Abrams et al., 2001; De Martino et al., 2000; Gortmaker et al., 2001). However, as with other chronic pediatric diseases (eg, Divertie, 2002; Fink, 2001), adherence to the complex antiretroviral regimens has been identified as a major barrier to realizing the full potential of the treatments. Recent studies in adults indicate that at least 95% treatment adherence is crucial for HIV/AIDS management (Carpenter et al., 2000; Patterson et al., 2000), and that even brief episodes of missed medication doses can permanently undermine HIV treatment, leading to reduced efficacy of and increased resistance to medications (Bangsberg et al., 2000; Chesney, Morin, & Sherr, 2000). In addition, some strains of HIV are resistant to currently available medications. The few studies of adherence to antiretroviral regimens in children suggest that only 25% to 50% of HIV-infected children are adherent to all doses of their regime (Falkenberg, 1999; Reddington et al., 2000). The challenges to adherence in HIVinfected children are numerous (Albano, Spagnuolo, Berni Canani, & Guarino, 1999; Fish, Lung, & the Antileukotriene Working Group, 2001). Antiretroviral medications generally require frequent dosing and are supplied in formulations that may be difficult for children to tolerate (eg, large pills, bitter-tasting liquids, and gritty powders). Antiretroviral medications have been associated with significant short- and long-term adverse effects (eg, nausea, rashes, hypersensitivity reactions, lipodystrophy, and anemia). Also, many children are unaware of their disease and are dependent on adults for their care (Mellins, BrackisCott, Dolezal, Richards, & Abrams, 2001). Adherence to antiretroviral regimens can be particularly daunting for HIVinfected children who often live in families affected by poverty, substance abuse, multiple life stressors, limited re-
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sources, and family disruption (BoydFranklin, Aleman, Jean-Gilles, & Lewis, 1995; Gewirtz & Gossart-Walker, 2000). Further complicating matters is the lack of a “gold standard” to measure adherence across health conditions (Matsui, 2000). A number of clinical and research measurement strategies exist, including pill counts, electronic monitors, diaries, and interviewer-administered or self-report questionnaires (Chesney et al., 2000); yet none are without flaws, and the limitations of these methods are even more pronounced when working with children (Matsui, 2000). For example, not all of the pediatric med-
ithout a gold
standard for measuring adherence, health care providers are often left in the position of subjectively judging families about their adherence, and families are often left in a position of defending themselves.
ications come in pill form and therefore pill counts are often inappropriate. Because caregivers often prepare syringes with correct dosages or pill boxes for the week, Medication Event Monitoring Systems, which record each time a medication bottle has been opened, are often impractical to use clinically or in research studies involving children. Social desirability is the issue most typically associated with self-report questionnaires. In addition, in the case of child adherence, the best source of information is not always clear. Younger children are typically given their medications by a parent, another family member, or other adults (eg, home health aids, school nurses) and
may not even know what medications they are supposed to take. On the other hand, as children get older, they may take on more responsibility for managing their medication regimens, and in the transition, the role of the adult changes. Adults may remind the child to take his or her medicine, check medications to determine whether the child appears to be taking them, and/or continue to administer some of the medications themselves. In some cases, adults and children may each have incomplete information on adherence. Pediatric HIV medical providers often need to make important medication decisions yet often lack the tools to reliably assess reasons for medication failure (eg, inadequately suppressive regimens, drug resistance, and poor adherence; Miller & Hays, 2000). Providers must work closely with the infected child as well as his or her family members and other providers (eg, a school nurse or visiting nurse) to coordinate efforts and ensure the communication of accurate knowledge regarding the disease and treatment. Providers must follow up with these various persons (eg, child, primary caregiver, and other caregivers) regarding adherence, all the while monitoring and attending to the child’s health. Without a gold standard for measuring adherence, health care providers are often left in the position of subjectively judging families about their adherence, and families are often left in a position of defending themselves. The usual “trusting” relationship between family and provider is intuitively undermined because no adequate measures exist. This relationship becomes riddled with suspicion and unstated accusations, especially in the context of failing regimens. Many children have received antiretroviral medications for many years prior to the introduction of more recent therapies. These children probably developed resistance to therapies during long periods of treatment with inadequately suppressive medication regimens. Furthermore, the need for strict adherence did not become apparent until more recently. Therefore, it is often difficult to determine whether treatment is not working for a child because he or she has a strain of HIV that is highly drug resistant or because adherence was inadequate. Even short periods of incomplete adherence can lead
PH ORIGINAL ARTICLE C to the development of viral resistance, further complicating the situation. Despite medical providers’ integral role in the adherence process (Fish et al. 2001; Tsasis, 2001), few studies have examined medical providers’ views on antiretroviral treatment and adherence in children. In a qualitative study of HIV-infected adults, Roberts (2000) examined physicians’ beliefs (n = 15) regarding efficacy of adherence communication, barriers to communication, and their roles and responsibilities regarding adherence communication. Most physicians believed that communicating about adherence was important, a good use of their time, and within their role. However, they were not confident that doing so would have an immediate impact on their patients’ behaviors. Time constraints were cited as a barrier to adequate communication about adherence, and several physicians believed that other factors in patients’ lives (eg, housing, substance abuse, and social support) had a greater influence on adherence than did physician-patient communication (Roberts, 2000). To our knowledge, there have been few if any published studies involving pediatric HIV medical providers’ views on children’s adherence to HIV medical treatment. The goal of this study was to examine medical providers’ views regarding the primary care of HIV-infected children. Using qualitative and quantitative interview techniques with providers recruited from two family-based pediatric HIV clinics in New York City, we examined the level of communication about medications and adverse effects, perceived empathy, flexibility, and cultural sensitivity of providers, as well as providers’ views on pediatric adherence to antiretroviral regimens.
METHOD Research Participants Participants included 10 medical providers (five physicians and five registered nurses [RNs]) working with perinatally HIV-infected children. Participants were recruited from two HIV primary care programs in New York City, one of the epicenters of the pediatric HIV epidemic in the United States. Typically, physicians at these clinics provide general medical as well as HIV specialty care to infants, children, and youth with HIV infection, prescribe medications,
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and evaluate responses to treatments. RNs evaluate and triage patients, provide adherence and medication training, and monitor adherence to medications at monthly medical visits. All physicians and nurses working directly with children in these clinics were eligible for this study and all agreed to participate. Both clinics serve families primarily from New York City and Bronx, New York. Children are seen from birth through adolescence, although approximately 75% were ages 6 to 13 years at the time of the study. The majority of children at both institutions were infected perinatally; approximately 50% reside with single-parent caregivers, 65% to 80% are African American, and 12% to 30% are Latino. Ninety percent of patients are undergoing some form of antiretroviral therapy.
t is often difficult to
determine whether treatment is not working for a child because he or she has a strain of HIV that is highly drug resistant or because adherence was inadequate.
Procedures The authors of this study attended a provider team meeting at each of the two clinics. The project was presented by them, including procedures for ensuring confidentiality. All providers at the meetings were asked to participate in an individual qualitative interview lasting between 30 and 45 minutes (see Measures section) and complete a questionnaire. All of the providers agreed to do so, and the interviews were scheduled at the provider’s convenience. Written consent from the provider was obtained at the time of the interview. All interviews were audiotaped and
transcribed. This study received local Institutional Review Board approval.
Measures The caregiver/patient-provider relationship was assessed with a brief questionnaire developed by the authors addressing quantity and types of patient visits and with a modified structured questionnaire assessing communication strategies, originally developed for assessing the teaching and communication behavior of pediatric asthma providers (Clark et al., 1997). Adequate psychometric properties with ethnic minority populations were obtained for the original version (Clark et al., 1997). It was modified slightly (eg, changing the word HIV for asthma) to assess HIV primary care providers’ relationships with patients (eg, level of communication about medications and adverse effects, perceived empathy, flexibility, cultural sensitivity, etc). Provider beliefs about adherence were assessed with a qualitative individual interview addressing the following themes: (a) antiretroviral treatment decisions, (b) strategies used for engaging caregivers and HIV-positive children into ongoing HIV/AIDS treatment services, (c) working with difficult caregivers, (d) disclosure issues, (e) referrals made to address providers’ and families’ concerns, (f) prioritizing needs, and (g) intervention advice. Probe questions were tailored to each participant based on his or her responses.
Data Analysis For the qualitative data, content analysis of transcripts involved one research assistant, trained in qualitative data analysis and supervised by the first author, reviewing half of the transcripts to identify salient themes relevant to the study questions (eg, types of referrals made and prioritizing treatment goals). From the text he developed a coding nomenclature for each question in consultation with one of the principal investigators. Then he and another trained rater reviewed all of the transcripts and used the nomenclature to code the transcripts. Discrepancies were resolved by consensus discussion; final codes resulting from this process were then assigned. Inter-rater reliability was assessed using κ coefficients. κ ranged from 0.79 to 0.93. Descriptive statistics are presented for quantitative data.
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TABLE 1 Provider ratings of how helpful various strategies are in achieving better management of HIV and how often each strategy is used Strategy is very or Strategy is very often extremely helpful (%) or always used (%)
Tailor the medication regimen to the family’s routine Find out the patient’s underlying worries or concerns about HIV Help the patient/family to use criteria for making decisions about HIV management (when to change medications, miss school) Show attentiveness by using nonverbal communication (leaning toward the patient when listening, positioning yourself close to the patient) Give encouragement by using non-verbal communication (patting the patient’s shoulder, smiling, nodding to indicate approval) Give verbal praise for things that have been done well Maintain an interactive conversation (using questions that require more than a yes/no response, using simple language and analogies) Give specific reassuring information in response to worries expressed by the patient Reach an agreement with family on a short term goal for managing HIV at home (until next visit) Review the long-term therapeutic plan for the patient with the family
90 80 80
70 30 60
RESULTS Sample Description Half of the providers were physicians (n = 5) and half were RNs (n = 5). The majority were women (80%) and White (70%). Two of the physicians were men and three of the providers (one physician and two nurses) were African American.
Visits with Patients Providers typically saw between 2 and 15 patients (mean = 8.7) per clinic session. Time spent with newly diagnosed patients ranged from 20 to 90 minutes (mean = 48.9). Time spent with previously diagnosed patients ranged from 10 to 30 minutes (mean = 23). More than half of the providers (60%) found time spent with patients to be adequate. Nurses were less satisfied with the time spent with patients than were physicians; all five physicians but only one nurse believed that the time spent was adequate.
Adherence Communication Strategies Providers were asked to rate how helpful a number of strategies were in achieving better management of HIV, regardless of whether the strategy had been implemented in their clinic (see Table 1). The most helpful strategies included tailoring the medication regimen to the family’s routine, finding out the patient’s underlying worries or con-
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cerns about HIV, and helping the patient’s family use some type of criteria (eg, level of symptoms) for making decisions about HIV management. Providers were also asked to rate how often they used different strategies during visits with HIV-infected children and their caregivers (see Table 1). The most commonly used strategies included giving verbal praise for things that have been done well, giving encouragement by using nonverbal communication, giving specific reassuring information in response to worries expressed by the patient, and tailoring the medication regimen to the family’s daily routine. It is noteworthy that many of the adherence communication strategies rated by providers as “very or extremely helpful” (eg, finding out the patient’s underlying worries, tailoring the medication regimen to the family’s routine, and helping the patient to use criteria for making decisions about HIV management) were not consistently used.
Antiretroviral Treatment Decisions We asked providers to discuss aggressive and early antiretroviral treatment with HIV-infected children of different ages. All of the providers supported aggressive treatment with patients who had high viral loads and declining T cell counts. Only three providers (two
doctors and one nurse), all of whom work in the same clinic, believed that newborns put on very aggressive regimens do well. While supporting aggressive treatment, providers were concerned about the family’s readiness to adhere to medications, the high rates of unexplained medication failure, and the “overtreatment” of some children because of the medical community’s hopes to treat or cure the disease. Perhaps of greatest concern was the impact of nonadherence on drug resistance and the impact of drug resistance on future medication options. Providers did not want to set children up for treatment failure if the prescribed regimens were too difficult for families to follow. One physician described the difficulties of balancing what “on paper” looks like a need to change or initiate medications with a high risk for patient nonadherence. In such cases, the fear of resistance and “blowing medication opportunities” forces providers to make the difficult decision of holding off or stopping treatment until the family is better prepared to adhere to the regimen. When there are concerns about the caregiver’s ability to administer medications (eg, because of substance abuse or mental illness), and adjusting the regimen is not an option, providers often increased the responsibility of the infected child.
PH ORIGINAL ARTICLE C Strategies Used for Engaging Families Into Ongoing Treatment Services The most common strategies for engaging families in ongoing treatment services included building rapport; being available, flexible, and sensitive to social and emotional issues; and discussing clinical issues with the family (eg, health status, treatment, adverse effects, resistance, etc). One physician reported the following about her communication with families: [I try to be] reassuring concerning our exams...where we want T cells and viral load to be, and whether we think the medicines are working. [I] encourage [them] to contact us ... if questions come up or emergencies come up in between visits, and encourage [them], if they ever find the need to use an emergency room....to ask the treating physician in the emergency room to contact us so that we can share medical information that might be appropriate to their HIV diagnosis...You want it to be a collaboration. You want the patient or the family to be involved, to understand...why we are asking them to do what they are doing. Another frequently used strategy was adapting the treatment to the family’s lifestyle (eg, twice-a-day regimens and involving the school nurse). One nurse stressed the importance of helping families anticipate adherence difficulties during weekends, evenings, and vacations; providing education; reviewing the regimen; and stressing the importance of adherence: We give them examples of what to do on the weekends ...how to take their meds around their evening activities, how to travel with the meds... and just keep talking to them every time they come in about the importance of giving the meds because they tend to stop because they look at their child and say ‘oh, well, he looks good, he’s fine, why does he need medicine?’ But they don’t understand that inside, the virus is still living and multiplying. Additional strategies that providers believed were important were addressing needs other than medical care (eg,
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educational and monetary needs) and making appropriate referrals (eg, emotional/mental health), using tangible adherence tools (eg, phone calls, beepers, calendars, and pill boxes), and, when appropriate, increasing the child’s involvement in his or her own treatment (eg, having more discussions with the child, giving the child more responsibility). Providers stressed the importance of collaboration within the treatment team and with the family to assess and address concerns related to adherence and medication changes. Providers recommended open communication with families. Another prevalent strategy mentioned by providers was to neither start nor change a regimen if family
he most helpful referral
sources mentioned by providers were visiting nurse or respite care, supportive case management services, and mental health referrals.
problems were contributing to nonadherence. Providers recommended first assessing provider-patient/family communication problems that might be contributing to nonadherence. For example, perhaps the family misunderstood the directions or the provider wasn’t thorough enough in explaining the details of the regimen. When families continue to have difficulties, providers recommended having a nurse educator spend time with the family, initiating pharmacy programs (eg, having medications delivered to the home), or setting up temporary home health services. Some providers believed that it may be useful to improve stability and organization in the overall home environment before targeting specific adherence behaviors with the caregiver. As one physician stated, “There’s probably
a direct correlation between organizational skills and the usefulness of educational interventions.” However, many families are reluctant to allow service providers into their homes for a variety of reasons (eg, fear that mental health and substance use problems will be noticed and that their children will be removed from the home). When caregivers refuse help, most providers believed that reducing the responsibility of the caregiver and finding alternative caregivers or involving the child more directly is necessary.
Working With Difficult Caregivers All of the providers agreed that their concerns about the caregiver, child, or caregiver-child relationship had an influence on medication choices. The majority of providers reported that they use strategies to engage families and improve adherence that are individualized to the needs of each family, rather than trying to fit the caregiver into some sort of “risk category.” However, providers considered caregivers with mental health and/or substance abuse problems, or who are elderly or HIV-infected, to be at risk for nonadherence. Caregivers who have serious mental illness or who are actively using drugs and/or alcohol may be less likely to attend medical appointments, to give the correct dose of medications or to give them at the correct times, and to be proactive about refilling prescriptions. Some providers mentioned using home monitoring services to help some caregivers adhere to medical regimens. Unfortunately, most providers believed that there were too few strategies available to them for addressing mental health and/or substance abuse problems. It is not uncommon for HIV-infected children to be in the care of an elderly grandparent because of the death of biologic parents (Nicholas & Abrams, 2002; Rotherum-Borus et al., 2002). Typically grandparents agreed to take home young babies with a fatal illness, and may not have expected to make a long-term commitment to the child. Because of decreased mortality, increasing numbers of perinatally infected children are surviving into their teens and beyond. Elderly caregivers are often illequipped to handle emerging teens with complex medical needs and may lack the stamina necessary for bringing
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PH ORIGINAL ARTICLE C children to numerous medical appointments and for ensuring that their children are adhering to difficult medication regimens. Some elderly caregivers are coping with their own medical problems and their own complex medication regimens. The added responsibility of caring for an HIV-infected child can be overwhelming. Anticipating elderly caregivers’ difficulties in managing medications, repeating instructions, and reminding caregivers of their roles and responsibilities were useful strategies noted by providers. A few providers mentioned the HIV status of the caregiver as a concern. When the caregiver is HIV infected, he or she is simultaneously coping with his or her own illness, related psychosocial issues, and complex medication regimens. A perinatally HIV-infected child is often a painful reminder of the caregiver’s contribution to the child’s illness. According to providers, it is not uncommon for biologically related family members to have less structure and stability when compared with foster families. In addition to their own illness, HIV-infected caregivers may still be struggling with dangerous lifestyles and the risk behaviors that contributed to their contracting the virus. One physician stressed the importance of making sure that HIV-infected mothers have their own illness under control before trying to begin a treatment regimen for the child. Other providers noted that HIV-infected parents committed to their own health management are often especially attentive to adherence to their children’s regimens.
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ence. All but one provider believed that nondisclosure could be a formidable barrier to adherence. Most providers believed that the importance of adherence could not be explained sufficiently if the child did not understand why he or she was taking the medicines. Providers also stressed the importance of assessing the developmental level and maturity of the child before using disclosure as an adherence-enhancing strategy. One nurse suggested that early disclosure could be used as a strategy to help children
iven the significant
health and public health consequences of nonadherence to antiretroviral treatment, tools to more accurately assess adherence and interventions to improve adherence to HIV medications are urgently needed.
Disclosure Issues Providers were asked to discuss how disclosure or nondisclosure of HIV status to the child affects providers’ strategies for engaging families into treatment and helping them to adhere to treatment regimens. The benefits of disclosure listed by providers included being able to explain the usefulness of medications in a more sophisticated manner, increasing the level of honesty in the relationship, and helping children prepare earlier for their futures as HIV-infected adolescents and adults. Most providers believed that nondisclosure creates a “dishonest dialogue” and limited their ability to leverage a trusting relationship to improve adher-
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understand their disease and prepare for adolescence: “When you start preparing them when they’re 7, by the time they’re 13 or 14 they have a real grip on what they have and they’ve had seven years to internalize it.” Similarly, one physician stated: “When kids are disclosed to when they’re in the sort of genuinely industrious ages of 7, 8, 9, or 10, it helps a lot because I think there are so many fears that get conquered.” The overall opinion shared by providers was that developmentally appropriate disclosure in the context of a supportive family could help adherence by increasing the child’s understanding of the disease and medications, by in-
creasing the level of honesty between the parties involved, and by providing opportunities to work directly with the child. Social disclosure (ie, disclosing the child’s status to people other than the child) was also an important issue noted by providers. When caregivers choose not to disclose the child’s status to other family members or people in the child’s social network, the child may be limited in his or her ability to take medications in public or at other people’s homes, and the caregiver is limited in his or her ability to mobilize a support system to help with medication adherence.
Referrals Made to Address Providers’ and Families’ Concerns The most helpful referral sources mentioned by providers were visiting nurse or respite care, supportive case management services, and mental health referrals. In addition, providers mentioned hospitalization, referrals for other medical consulting services (eg, dental), referrals for educational services, and reports to child welfare services.
Prioritizing Needs Providers unanimously reported that families affected by HIV/AIDS typically have multiple problems and that prioritizing needs is a challenge. One physician admitted, “[Medical] providers are not well equipped to balance out the multiple demands that a family faces.” The first priority for about half of the medical providers in this study was “organizing” the family before prescribing difficult treatment regimens for the HIV-infected child. For example, before beginning a new treatment regimen, a family needs to have a place to live, food to eat, monetary support, and a responsible adult to take care of the child. The other half of the providers believed that their first priority was the child’s physical health. Two of these providers, both physicians, suggested that social issues should be addressed by the social workers and that physicians should be free to attend to the medical health. One of the nurses stated that home issues and medical issues should be dealt with concurrently. It is interesting to note that differences in provider’s prioritization of treatment goals may be a result of differences between the two recruitment
PH ORIGINAL ARTICLE C clinics rather than ideological differences between individual providers. Half of the providers work in an outpatient clinic without social workers, whereas the other half work in a clinic that includes full-time social work staff. Four out of five of the providers who found medical problems to be a first priority were from the latter clinic. Providers who work in clinics without designated social workers have to address social issues themselves and may be more likely to consider these issues as a priority than do providers who can refer to the team’s social work staff. Not surprisingly, there was no clear consensus among the providers regarding the best way to prioritize goals. As one physician stated, there is not “any given order that we always follow,” and the treatment team should “prioritize by what’s the easiest and what’s the biggest barrier to the child’s wellness.” This often means that the child’s HIV may not come first.
Intervention Advice Lastly, providers were asked the development of short-term interventions to increase HIV-infected children’s treatment adherence. Providers suggested having a multidisciplinary plan and approach in order to customize a set of services for one complete intervention. The majority of providers mentioned the importance of personal communication with the family to assess the barriers to adherence and the need for further “adherence education.” One idea proposed by several providers was to increase monitoring and observation of medication taking through direct observational therapy at the clinic, or through home visits or inpatient care when changing regimens (direct observational therapy has proven to be efficacious in small pediatric HIV samples; Gigliotti, Murante, & Weinberg, 2001). Several providers also suggested a short-term increase in nonmedical services, such as occupational therapy, social work assistance, or substance abuse interventions. Other suggestions included having the families take a break from medications and increasing the use of beepers and telephone reminders. If adherence problems are a result of chaotic home environments, providers suggested sending in a homemaker to help organize the home. Also, in keeping with the aforementioned strategies,
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a few of the providers suggested the creation of full-time pediatric HIV care centers. These centers would ideally provide “one stop shopping,” with day care, educational programs, and fully staffed medical and social services. In these centers mothers could have respite care and mothers and children could be educated on medications and health-related issues.
uture research should
not only focus on the families that are struggling with adherence but on the families that are succeeding.
Overall, the providers in this study believed that few short-term interventions were available to help increase treatment adherence and that shortterm interventions may not be useful because adherence is an ongoing challenge. Providers often believed that implementing effective short-term interventions was not currently feasible because of the relatively small number of medications currently approved for use with children and the formulations of approved medications that often are not child friendly. As one physician stated: “The single most important thing...would be better medicines... better, simpler regimens. That’s the biggest problem. The medications are too complicated...conditions are too narrow...so the burden is too high for most families.”
DISCUSSION This study is one of the first to examine the views of pediatric HIV medical providers concerning antiretroviral medication adherence. All of the providers in this study worked in two pediatric programs that are devoted to the care of HIV-infected children and located in high seroprevalence neighborhoods. The providers were very involved, both medically and psychosocially, with the
children and the families in care. Providers not only faced difficult treatment decisions (eg, what medications to prescribe), but they also needed to determine if the family was capable of adhering to the prescribed medication regimens and, if not, how to help them with adherence. Providers had to accomplish these tasks while typically seeing nine patients per day and spending an average of 23 minutes with their long-term patients. Although providers were able to identify several helpful strategies to enhance communication with the families regarding adherence, they were not always able to implement these strategies in practice. The providers in this study believed that the limited treatment options currently available to HIV-infected children present families with tremendous challenges to adherence. Most children were prescribed difficult treatment regimens and needed increasingly complex regimens rather than simplified ones, placing further demands on adherence. Unfortunately, even the most promising of medicine may be useless if it cannot be taken as prescribed, whether it is because of palatability of the medicine itself or poor adherence on the part of caregivers or patients. Pediatric HIV medical providers are in a difficult position. Medication options are limited and no gold standard for assessing adherence exists. These challenges are superimposed on the context of working with families that are typically stressed by poverty, HIV disease, substance use, and mental health problems in multiple family members (Havens, Mellins, & Hunter, 2001). Furthermore, caregivers often struggle with the issue of disclosing the child’s HIV status to the child or members of the family’s social network (Mellins et al., 2001). There is also “adherence fatigue” for providers, who are constantly forced to check on families, and for the families, who are bombarded by “adherence checks” at each of the child’s monthly clinic visits. With no gold standard for measuring adherence, either for clinical or research purposes, providers are often unable to differentiate between a failing regimen resulting from drug resistance and one resulting from poor adherence. This situation, in turn, disrupts the trusting provider-patient relationship that all of the providers spoke about. Unfortu-
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PH ORIGINAL ARTICLE C nately, nonadherence is not a new problem and assessing adherence has remained an elusive challenge across most pediatric health conditions (Matsui, 2000). As HIV-infected children live longer, coping with their illness as a chronic condition, pediatric HIV care providers face many of the same issues regarding treatment adherence that physicians treating conditions such as asthma, diabetes, epilepsy, and cancer have struggled with for decades (Bender, Milgrom, Wamboldt, & Rand, 2001; Delamater, 2001; Matsui, 2000). Although no disease process has remained immune to treatment adherence problems, and nonadherence has been difficult to predict across diseases, there are certain conditions and treatments that result in worse adherence. These include conditions that are chronic in nature as opposed to acute (Matsui, 2000), conditions that require prophylactic rather than therapeutic treatment (Dajani, 1996; Fotheringham & Sawyer, 1995), conditions that require more than twice-a-day medication regimens (Dajani, 1996), and conditions that require long term regimens as opposed to shortterm regimens (Fotheringham & Sawyer, 1995). Unfortunately, the providers in this study noted all four of these characteristics of HIV disease. Given the significant health and public health consequences of nonadherence to antiretroviral treatment, tools to more accurately assess adherence and interventions to improve adherence to HIV medications are urgently needed. The providers at these two clinics unanimously reported mental health and substance use problems in the families as factors contributing to nonadherence. Unfortunately, the US health care system, which typically lacks comprehensive services, hinders resolution of these issues, which can be major barriers to adherence. Drug use (Coyle, 1998; Havens, Mellins, & Pilowski, 1996; Haverkos, 1998), depression, and other mental health problems (Dowling, 1994; Lee, Lester, & Rotherum-Borus, 2002; Mellins, Ehrhardt, & Grant, 1997; Murphy, Koranyi, Crim, & Whited, 1999; Rotherum-Borus, Lightfoot, & Shen, 1999; Schuster et al., 2000) continue to represent significant issues among HIV-infected adults. Traditionally, services are separated by system and age group. Thus, mental health, drug use, and health care for children and adults
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are in multiple places with multiple providers. The separation of services often results in failure of any to meet the needs of HIV-affected families, which often have multiple co-morbid disorders. This, in turn, limits the engagement and retention of HIV-affected families. There is an urgent need to integrate mental health care into pediatric health care settings in general, and among settings treating families affected by HIV/AIDS, larger issues need to be taken into account and integrated into the services provided. The sample of New York–based medical providers in this study was small and the data may not be representative of the experiences of other medical providers in other cities. Additional research should be conducted with larger samples from more diverse locations. However, we believe that the families served by the clinics from which the providers were recruited are representative of the perinatally HIV-infected pediatric HIV population, and we were able to interview 100% of the eligible providers. In conclusion, there are significant challenges to adherence in pediatric HIV disease above and beyond those typically noted in studies of other childhood illnesses. Adherence is an ongoing problem that is directly tied to the family life of the HIV-infected child. This is the only study to date that examines medical providers’ beliefs and attitudes about adherence to antiretroviral regimens and strategies for improving the health and well-being of HIV-infected children. Providers clearly play an integral part in the improvement of adherence efforts. Although adherence continues to be one of the leading challenges facing pediatric HIV providers, many children and families are able to adhere to their medication regimens. Future research should not only focus on the families that are struggling with adherence but on the families that are succeeding. Differentiating these two groups and identifying child, family, and other psychosocial factors that promote adherence would be beneficial to the development of effective adherence interventions. We gratefully acknowledge Megan Block, Daisy Reyes, Evelyn Badillo-Cordero, Maxine Frere, all of the staff at Harlem Hospital’s Family Care Center and the Incarnation Children’s Center, and all of the families who contributed their time.
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