Why

Their perceptions of the (potential) positive and negative effects of early treatment greatly influence this. The H-TEAM wanted to gain insight into the motivating and demotivating factors in order to develop strategies that enable people living with HIV to make a fast and successful start to their treatment.

Approach

The intention was to investigate a group of participants that was as diverse as possible (in terms of gender, age, ethnicity and attitude towards early starting) to give a broad overview of the factors that play a role in the decision-making process of starting treatment early or not.

Results

Ideas about early treatment that played a prominent role were mainly connected to the possible positive and negative effects on the physical and mental health of patients. In this context, the chances of experiencing side-effects in the short and long run play a role. Also, the impact of treatment on the patients’ sense of control appears to be an important reason to either start treatment immediately or not. The positive effect of treatment on the further spread of the virus in the Netherlands was seen as an additional advantage.

Both patients and practitioners underlined the importance of having a number of patient-related conditions in place for early treatment. Patients’ willingness and likelihood of adhering to medication over a long period of time was considered an essential condition for being allowed to start treatment (quickly). In this context, patients’ (emotional) stability, in particular, plays a crucial role. That is, both the overall mental condition of patients and the degree to which they are still emotional about the diagnosis. Finally, decision-making about early treatment was largely determined by the degree to which the treatment matched the patients’ identity (such as their personality and cultural background).

During the interviews, the practitioners frequently stated that the major challenge comes from a small group of patients who postpone starting treatment for a very long time. That is why we wanted to investigate the characteristics of this group and their reasons for not wanting to start treatment. During the research, the group of patients who were being seen by healthcare workers but did not want to start treatment appeared to be very small, and they could not be reached or did not want to be interviewed about their reasons for postponing treatment. In addition, we couldn’t discover a clear patient profile (in terms of background and disease characteristics) for this group. Nearly all patients who had stopped visiting healthcare services for their HIV-infection, and were therefore unlikely to be receiving any form of treatment, appeared to be men, and the majority of them had an African background.