Improving adherence requires a continual process of assessment and monitoring of adherence, identification of influencing factors or barriers to adherence specific to individual adolescents, and identifying and implementing the most acceptable and effective strategies to address those factors or barriers. In some cases, a combination of strategies may be more successful in addressing adherence issues.
Approaches to improving adherence may work for some adolescents but not for others; health providers need to be flexible in their recommendations to each patient, taking the time to understand the particular needs of the individual and encouraging the participation of each person in developing strategies and solutions that will work best for him or her. Establishing trust and respecting the views and concerns of adolescents during consultations are key to effective support for adherence.
Improving understanding. Adolescents often have limited knowledge and understanding about why they have to take ART, how it works and how it benefits them. Some adolescents may not yet be informed about their HIV status or the medication they take; some may have been recently diagnosed or disclosed to and are still adjusting to their HIV status and have not been able to absorb information about treatment. In some cases, adolescents have received information that is not developmentally appropriate, or they are too young to attend treatment preparation classes. Health providers may also bear responsibility for the limited treatment literacy of adolescents if they have not dedicated the necessary time to educate their patients or to practice good adolescent-friendly communication skills. When adolescents have knowledge and understanding, they have more control over their lives and they are more able to make informed decisions about their health.
It is vital that adolescents understand treatment in a detailed way – why they have to take ART, how it works, the benefits of ART and their own role in taking full advantage of HIV treatment.
In order to support this level of understanding, health providers need to educate adolescents about:
- HIV and its effect on the body;
- how ART works;
- why adherence is important;
- risks and consequences of drug resistance;
- benefits of adherence.
Information provided to improve understanding needs to be presented in a clear way. Visual aids to audible explanations (i.e. simple animations/drawings to illustrate verbal explanations) – as well as repetition – assist adolescents to process information and gain a better understanding. The advantage of chronic care is that adolescents attend regularly and information can be built upon at each visit. When written materials such as pamphlets are provided, it is beneficial to go through the information with the adolescents to ensure they comprehend the information presented before leaving the consultation room.
Facilitating independence. Understanding adolescent development is key to being able to facilitate independence and responsibility in adolescent patients. As part of natural development, adolescents seek to become more independent, evolve in their capacity to make decisions and take responsibility for themselves. Adherence to HIV treatment as part of managing their health care should be no different. For perinatally-infected adolescents with HIV this period of transition can be particularly complicated as they transition to adult services and take progressively more responsibility for their ART. This gradual process should start as early as possible, facilitated and encouraged by both the health provider and the caregiver. The pace of this transition process should be determined by the adolescent.
Integrating ART into daily lives. Assisting adolescents to integrate ART into their daily lives is crucial. When taking lifelong treatment, even the smallest inconveniences can have a significant impact and lead to non-adherence. Where possible, health providers should select an ART regimen for adolescents that best fits in their lifestyle (e.g. trying to avoid those that require food or that need to be taken during school hours. ART regimens need to be user-friendly and as minimally stigmatizing as possible).
Lack of structure in an adolescent’s life and the constant changes that occur can have a considerable negative impact on adherence. Competing priorities and busy schedules can lead to forgetfulness. Practical adherence tools, especially those using technology in countries where it is available, that engage with and remind adolescents to take their medication, may assist in addressing forgetfulness. If forgetfulness is an ongoing issue and impacts on other areas of their life, particularly schooling, assessment for neurocognitive functioning may be required.
Practical adherence tools include:
- weekly boxes assist with organizing and keeping track of what doses have been taken;
- single dose boxes make it easier to keep doses on their person, in their bag, school locker, or at a relative’s house etc., and allow for flexibility and discretion;
- phone applications;
- SMS reminders;
- cues, triggers, associations with activities of daily living;
- treatment buddies – not necessarily authority figures.
Treatment-focused strategies. Pill burden – the size, taste and number of pills to be taken – can greatly affect adherence. Where possible, reduction in the number of tablets and the frequency of doses can assist adolescents to adhere more effectively to treatment. Once- daily dosing is typically preferred by adolescents and has demonstrated improvement in adherence.
For more information on ART regimens and treatment simplification, please refer to WHO Consolidated guidelines on the use of antiretroviral drugs for treating and preventing HIV infection.
Side-effects associated with various ARVs, even mild ones, can provoke non-adherence. It is important to explain the potential side-effects of ART before initiating treatment so that adolescents know what to expect. Side-effects that cause changes to physical appearance and make them look different from their peers, such as such as lipodystrophy (redistribution of body fat), rashes or discoloration of the skin, are particularly concerning for adolescents. Provision of symptom treatment and reassurance that some side-effects improve with time should be part of routine consultations. If the side-effects continue, switching to other appropriate ART regimens can be considered.
Role of health care providers. Health providers are essential in supporting adherence. Supportive and non-judgmental attitudes and behaviours of health providers encourage an environment of honesty, openness and trust regarding adherence and related barriers. Health providers can encourage honesty by reassuring adolescents that their discussions are confidential and that they will not get in trouble for non-adherence; rather, honesty about adherence barriers or lapses helps the health provider to provide better information and support for adherence.
Health providers need to be frank with adolescents: taking daily medication is not easy. When an adolescent is practicing good adherence, the provider needs to acknowledge this and not neglect any opportunity for positive reinforcement. When their efforts and achievements are recognized and affirmed, adolescents can develop confidence in their strength and draw on this as motivation to continue adhering to treatment.
Health providers can also support adherence by recognizing that as an adolescent’s needs and circumstances change over time, so too will the factors influencing their ability to adhere to treatment; as influencing factors and barriers change, strategies to address those issues that may have been working in the past must be adjusted to be more appropriate and to meet the changing needs of the adolescent. Health providers, together with their adolescent patients, will need to tailor a strategy or combination of strategies to maximize adherence based on individual barriers and opportunities.
Supporting adherence requires a multidisciplinary approach. Each health provider brings a different skill set and experience and has a unique role in supporting an adolescent to adhere to ART. For those adolescents with persistent adherence challenges and severe immunosuppression, multidisciplinary team meetings with the adolescent and, where appropriate, the caregiver, can enable further patient-centered adherence planning. Where psychologist support is available, psychological approaches such as cognitive behavioural therapy and motivational interviewing can assist adolescents in addressing adherence difficulties.
Community-based approaches including peer support have been shown to be a useful strategy to help improve and support adherence. Regular home visits by nurses, community-based workers or peer supporters provide support for adherence while addressing additional psychosocial support needs. Community-based approaches increase the accessibility of adherence support bringing it closer to home. Through peer support, adolescents are able to discuss with others the adherence challenges they face and share what strategies they have used to overcome them. Additionally, peers or siblings can act as treatment buddies.
2. A physician role in supporting adherence
3. A nurse role in supporting adherence
4. A pharmacist role in supporting adherence
5. A social worker role in supporting adherence
6. A support group leader role in supporting adherence