Adherence to HAART : A study of patient's perspectives and HIV nurse consultants' strategies

The aim of this thesis was to gain deeper insight in the influences of adherence to highly active antiretroviral therapy (HAART), to examine the underlying processes at play and to explore the current adherence practice in the HIV care in the Netherlands. In designing the framework to develop an adherence intervention that can be tailored to patients’ individual situation, information from the patients’ perspective is essential. The literature about influencing factors of adherence from patients’ perspective was examined to identify processes underlying the influencing factors, apparent from quantitative studies. We summarized findings of reviews of quantitative studies on factors related to or predicting adherence to antiretroviral therapy and presented the results of qualitative studies and identified influencing factors of adherence and non adherence. The in-depth qualitative study we conducted revealed that adherence to antiretroviral treatment is mainly influenced by the acceptance or non-acceptance of being HIV-infected. Actual adherence is the result of two elements: the determination to be adherent and the way patients deal with encountered obstacles. Acceptance leads to ‘‘being determined to be adherent’’ (life requires adequate HAART) and non-acceptance leads to ‘‘medication is subordinate to other priorities in life’’ (HAART should not take precedence over life). In the study on the role of disclosure and nondisclosure in people taking antiretroviral therapy and its influence to adherence it became clear that disclosure or nondisclosure of HIV are not always rational choices and HIV infected persons do not have only one disclosure-status. Per phase of being HIV infected, different disclosure patterns are seen and are different considerations at play. Whether HIV is disclosed to others is influenced by patients’ personal manner of coping with HIV and the degree of acceptance of HIV. Furthermore the study revealed details about different disclosure patterns and its relation to adherence. A descriptive study explored the role of HIV nurses in the care of HIV-infected patients in the Netherlands and revealed that since the last years a change has occurred in the division of responsibility between physicians and HIV nurse consultants; substitution of care. Fifty-eight percent of the centres perform substitution of care/alternating care. Substitution leads to a slight, non-significant decrease in number of consultations. Adherence support is provided at the start of, and during treatment. Respondents try to resolve encountered difficulties with the patient to prevent non-adherence. An explorative study using two methods for data-gathering, individual interviews and focus group interviews, provided insight into the existing adherence support strategies as used by the HIV nurse consultants in the Netherlands. The results of this study make clear that an adherence approach needs to be adjusted to patients’ personal factors rather than using the same procedure for all patients The knowledge was used in the development of a patient tailored approach to enhance and maintain adherence