A qualitative study with West African women living in London who have difficulties adhering to their HIV treatment has found that many think of HIV treatment as a ‘life sentence’ that they long to escape from. Internalised stigma about HIV is an undercurrent in many of these women’s accounts, according to an article published online ahead of print by AIDS and Behavior. But some women described an improvement in their feelings about the medication over time, talking about the factors that helped them with adherence.
Johanna Spiers and colleagues used a qualitative research method known as interpretative phenomenological analysis (IPA). Rather than attempting to produce findings that are generalisable, this approach focuses on the particular experience of small samples of people in similar circumstances. It attempts to explore how people make sense of their experience, analysing the thoughts and emotions that interviewees ascribe to particular situations.
During interviews, the researchers emphasised that the participants were the experts on the topic of HIV treatment. They used open-ended questions to encourage participants to speak candidly about their experiences.
Ten West African women who were taking HIV treatment in London were interviewed. Most were in their forties, were single or separated, had children, and had been diagnosed with HIV in the previous decade. Six were Nigerian and most had been living in London for more than a decade.
All had been selected because their clinicians had identified them as having current or previous problems with adherence to HIV treatment – they had discussed difficulties or had had spikes in their viral load. Nonetheless they were all still engaged with medical care.
Difficulties with adherence
Nine of the ten women described negative experiences taking HIV treatment. Several women reported physical difficulties taking the medicines.
The tablets were often described as being big and brightly coloured. Their appearance seemed to bring up internalised stigma in some women – the big, strange tablets seemed to be there to deal with a big problem.
“They are orange and blue, they’re not the regular colour you would expect so for me, I am seeing something that just looks unreal really.”
“Everything, the size, the colour. If it was just this innocent, white tablet common size that you get with paracetamol.”
Several interviewees pointed to a problematic gap between the treatment they were taking and their personal sense of being well or ill. It could be difficult to make a connection between their experience of taking the tablets (several women felt that their adherence was good) and the outcomes of their treatment.
“It’s just taking the tablets I hate, because sometimes there is an improvement and sometimes there is not.”
This woman talked about her experience of treatment in passive terms – it was something that happened to her, rather than being something she actively engaged with.
“My doctor then change it and then I had another medication after some time the medication failed and I was asked to change medication again.”
The authors note that the interviewees did not say that HIV medications did not work in general, or that they did more harm than good – but they did sometimes feel that the medications did not work for them personally.
Some women described HIV treatment as making them feel they were trapped in a monotonous life sentence.
“They will tell you that you have to take it. It’s the words ‘for life’ I hate, I can’t stand it.”
Several of the women suggested that not adhering to their tablets was a way to try to escape this prison of adherence.
“Sometimes I just want to treat myself, I don’t want to take this medication today.”
“Let me get my freedom not taking it. So I put it in one corner and I carried on living my daily life without taking my tablets.”
In common with other studies, the social context in which the women lived could make adherence more difficult. Women often saw the tablets as things that should be hidden from family members or work colleagues. Shared accommodation was challenging for this woman:
“Initially people were living with me so because of the crowd I couldn’t take it.”
Improvements in adherence
Four of the women described an improvement in their relationship with the tablets as time passed.
“Before I used to put it a lot in my mind – I’m HIV positive, oh God, how can I be – but now I am ok. Don’t worry about your sickness, it’s undetectable, don’t worry, you are fine, you are fine, just be taking your medication. Since that time, the fear has gone.”
The tablets became normalised and interviewees found treatment combinations which suited them better.
“So far, so good, the one I’m taking now is fine, because they are not too big and I have time to take them at home.”
In describing how adherence improved, some referred to intrinsic motivators for better adherence. A desire for better health and the previous experience of ill-health spurred some women to take their tablets.
“Two years ago I stopped taking my medication. I was tired, I was pissed off so I just leave it and I travel for a week. But when I came back I collapsed. I was in hospital for two months, but from that I have been taking my medication on time. If I am going somewhere I will take it with me.”
Relationships with other people could act as motivators. Some women felt responsibilities to others:
“I have to take this thing to be here for my family, even when I was married I have to be there for my husband and my children. That is something you have to be looking at, if not then what are you living for?”
The support and feedback of loved ones could help:
“So I do take them then gradually, gradually, everybody was smiling at me again, even my smallest, ‘Ah mummy, you are back. You are not like a skeleton again’.”
Others wanted to be seen as ‘normal’ by other people:
“If you don’t take your medication people will know that you are sick but with taking the medication it’s good and I am taking it and feeling good about myself. Nobody knows my secret. When I am taking it, people don’t know. I am good looking but they don’t know what’s inside.”
Finally, a feeling of having a collaborative relationship with healthcare staff led to a heightened sense of agency and greater adherence in some women.
“So I give to him, this is what I want. So we are going to look for medication that goes like. If there is none, we have to check again (both laugh)! We have to adopt something, sort of thing! So I was quite happy we find what I needed.”
Based on their data, the authors make some suggestions for healthcare providers:
- Treat each person who struggles with adherence as an individual and listen carefully to what is pertinent to them.
- Involve patients in treatment decisions as much as possible, so as to encourage a sense of active engagement and collaboration.
- Educate patients on how HIV treatment works and how to adhere to it correctly.
- Encourage disclosure to friends and family, so that people taking HIV treatment are not isolated and can be supported by others.
Spiers J et al. The Experience of Antiretroviral Treatment for Black West African Women who are HIV Positive and Living in London: An Interpretative Phenomenological Analysis. AIDS and Behavior, online ahead of print, 2016.