Factors influencing adherence
Adherence involves more than remembering when to take medication. Individual, medication, social and health service factors all impact on an adolescent’s ability and motivation to adhere to treatment and remain engaged in care for ongoing monitoring and support. Health providers need to understand the influencing factors affecting adherence in order to appropriately address them and provide adequate support.
A number of individual factors can impact an adolescent’s adherence. Most adolescents have busy and often changing daily routines and competing priorities such as school work, socializing and family commitments. Their busy lives can lead to forgetfulness, not carrying medications with them or not taking doses on time. Some adolescents can also lack the motivation to adhere to treatment because they do not want to be defined by their HIV and constantly reminded of it by having to take burdensome medication on a daily basis. Related to this, many adolescents are discouraged from taking medications because they do not want others to learn about their HIV status and they fear that the constant need to take pills is a public signal of their status and may invite unwelcome curiosity and questions. If an adolescent is not aware of their HIV status or the reason for taking medication, they may lack the knowledge and motivation that can support adherence. Those recently diagnosed or aware of their HIV status may have difficulty accepting or coming to terms with their situation, which can lead to despondency or depression. Mental health issues and substance use, including alcohol, can reduce adherence. Additionally, poor understanding of treatment and the importance of adherence – and beliefs about health and medication that are often influenced by religious teachings or cultural traditions – can also lead to non-adherence. Adolescents who are unwell and experience advanced HIV-related conditions, or those with impaired neurocognitive functioning, may also face challenges in adhering to their treatment.
Medication factors. ART can be difficult to take. Pill burden affects adherence for many adolescents; unpleasant taste, frequency of doses and the number of pills can all discourage adolescents from taking their medications in a consistent and effective way. Treatment fatigue can also set in for adolescents who have been on ART for a long time and can discourage adherence particularly for those who were perinatally infected. Side-effects of medications, especially those that cause changes to physical appearance can be distressing for adolescents who are self-conscious about their looks and their evolving sexuality.
Social factors such as the adolescent’s family situation and social and cultural environment can also influence his/her ability to adhere. An adolescent may lack social or emotional support especially if they have not disclosed their HIV status to a supportive friend or family member or if they are affected by stigma. For an adolescent living in poverty, which impacts their housing situation, food availability, school attendance and ability to meet the costs associated with health care such as transport, clinic fees and other medical charges, adherence can be particularly challenging. In some cases, more than one person in a family may be HIV positive, draining financial and emotional resources and leading to non-adherence. The presence of more than one person living with HIV in a given household can also help to encourage and ensure adherence to treatment. When adolescents are responsible for care-giving of sick family members or looking after younger children, their own needs, including for treatment adherence, may be neglected. In some cases, high HIV-related mortality in parents and caregivers can result in instability in care-giving structures when an adolescent has to move from the household of one family member/caregiver to another; inconsistencies in care can disrupt the support for adherence that adolescents need.
Health service factors can significantly impact adherence. Many of these are associated with access to reliable, adolescent-friendly services (discussed in another section of this tool). They include convenience of services such as distance to clinic, services and transportation costs and clinic hours for adolescents. Adherence may be negatively impacted when an adolescent cannot take time off school or work to attend clinic where they would receive ART and support for adherence. Additionally, the adolescent–provider relationships that are based on trust, care and good communication can foster an open honest environment to discuss issues around adherence. The relative lack of health providers with experience in adolescent health care may further impact adherence, as can the availability of drugs, which can be a problem for all age groups.