Introduction
Methods
Study design
Context and areas of the study
Study participants and recruitment procedures
Sample size
No. of experts | Country | |
---|---|---|
Experts – in research about HIV and self-management | 10 | South Africa, Uganda, and Ethiopia |
Experts in HIV program areas | 8 | South Africa, Uganda, and Ethiopia |
Health care providers | 6 | Ethiopia |
Topic guides, data collection and management
Data analysis and reporting model
Results
Context dimensions
Condition specific factors: lack of understanding that HIV is a lifelong disease
In the first place, HIV patients should accept that HIV is a life-long illness that needs treatment and care for life regardless of their clinical condition. Most of our patients are not very well-oriented about this. Sometimes we see patients discontinuing their treatment when they get better. Nurse, service provider, Ethiopia.
Physical or facility environment: knowledge of health care workers and their relationship with their patients
Care should be viewed in a broader context rather than only focusing on clinical treatment. You know that, in addition to appropriate and effective clinical medication, adequate psychological support and good interactions with patients are critical for treatment success. If I received better psychosocial assistance in addition to clinical medications, I would be more motivated to take the prescribed medications. So, remembering that everything I do as a health care professional is for a person, putting the patient in the middle and dealing with the problems is crucial. Researcher, University of the Western Cape, South Africa.
In South Africa, in some health facilities, due to the high number of patients, we are using self-management as part of service delivery. What we do is equip them [PLWH] with the skills of self-management. … So, since these patients are only screened for symptoms and get viral load done once a year, the rest of the time, they must basically care for themselves using their skills of self-management. … we really don’t have the capacity to really have detailed management of patients, so the patient needs to be empowered to care for themselves. Researcher, Stellenbosch University, South Africa.
…Health professionals should demonstrate emotional intelligence and interact in a supportive manner to their patients to detect what is going on with them when they are having a bad day. Even though the patient did not comply with the care, they [health professionals] must actually say to their patient, “I am not angry with you, I just want to help you,” and the patient is more likely to calm down and engage in a better way. Researcher, Stellenbosch University, South Africa.
Social environment: disclosure, stigma and discrimination and consequences
Most of our patients come from distant areas, some of them from different regions of Ethiopia, and when we tell them to seek service from the nearby health facilities, they are unwilling because of a fear of stigma and discrimination. The problem is that it is common to see treatment discontinuation and poor adherence among these patients because they cannot afford transportation costs for every appointment. To resolve this problem, it is better to work on stigma and discrimination while also encouraging patients to disclose their status. Physician, health service provider, Ethiopia.
Usually, the difficulty is with females and younger patients. Currently, there are some adolescents who are getting HIV from their families. …, they make sexual intercourse with their peers, and when they join another, they do not disclose sexual activity to their peers, even if there is some. They refrain from disclosure. Researcher, Hawassa University, Ethiopia.
Stigmas and defense mechanism of patients and solution
It could be difficult in cases of internal stigma. It may be difficult for the client [patient] to evaluate himself or herself, prepare, and fix things. He or she can manage the situation easily if someone who has had the same experience as him or her shares their experience on how to manage the situation. Program expert, NGOs, Ethiopia.When someone faces external stigma, there are personality differences from one person to another in how they respond to it. … There are individuals who are vulnerable to anxiety and depression; others are vulnerable to other problems. If the situation arose, the client [patient] should assess himself or herself, be aware, and be prepared to respond. Program expert, NGOs, Ethiopia.
Individual health problems and family support
Unhealthy lifestyle: risky behaviors
Following diagnosis, most HIV patients are not stable and engage in bad behaviors like smoking tobacco chewing khat, drug use, and alcohol drinking. These behaviors have negative consequences, resulting in not starting medication, forgetting to take the medications, and expose other people to the virus. Reducing these behaviors might be difficult to do immediately, but I think they should be reduced step by step and removed if possible. Expert, from government health bureau, Ethiopia.
Context-specific nutrition
...professionals should be considerate of patients’ setting and backgrounds while counselling on nutrition. For example, if the context is in the Gurage area [one of the areas in the southern part of Ethiopia], the nutritious menu can be prepared by making kocho [a food with high fiber prepared from false banana] as the main food item. If there is an option for food or if there is an economic problem, the client can use this and adjust himself/herself. Program person from NGO, Ethiopia.
Support of families or friends
…If I am infected with HIV and living with my family, the burden of the condition is not just on me; it also goes to my family. If I have good support, then I will be able to save money, and the family will be able to save money too. But if I didn’t have good support and if I didn’t manage myself, I would get sick and there would be more financial expenditure, more time spent in hospital, more disturbance in the family, and there would also be a limited opportunity for a person to achieve growth and be more productive. Researcher, University of the Western Cape, South Africa.
Process dimensions
Knowledge and information access of the patient
They don’t know about some medications and their common side effects because they are not in a position. … What is “lifelong treatment”? Some patients might think that they might be free from the virus [HIV] after one or two years of treatment. When we say lifelong, we mean lifelong. The goal of treatment needs to be clear. So, I think these things should be made clear by the providers. Why I am empathizing with this is because it directly affects their self-management and then treatment outcome, focus should be given to increasing their [patient] awareness. Medical doctor, Ethiopia.
Outweighing spiritual beliefs more than medical care
They [patients] may believe that they can be cured by certain religious or spiritual activities. That’s why they just drop the drug and rely on religion, and finally it gets complicated, and they come back to the healthcare professional. And then we ask them why they did this, and they usually say that they were misinformed. Sometimes they are also fed up with medication; … They also want to get rid of HIV. But we told them that it is a lifelong medication… Medical doctor, Ethiopia.
Self-esteem skills & abilities
…It is better to work on developing our patients’ confidence. This is one of the common problems that I observe in my routine duty. Most of our HIV patients have low self-esteem, never value themselves, and have a sense of dependency. As a result, it is preferable to devise a strategy for releasing them from this problem. Nurse, Hawassa University, Ethiopia.
Taking one’s own responsibility and goal setting
I am the master of my destiny. There are a lot of other things around me that interfere with it, but at the end of the day, it is me who wins and wakes up in the morning. Yeah, with that kind of responsibility, it is me who is going to open that bottle and swallow the tablet. I think taking that kind of ownership is very important. Once one understands, then they will be able to take ownership and see the visit to healthcare professionals as their own personal business and plan for achieving the objective they have set for themselves. Researcher, University of the Western Cape, South Africa.
Social facilitation: sources and types of support
As it is known in our country [Ethiopia], we do have a limited number of health professionals, so it is difficult to properly counsel every patient, be it on his dietary practice or other healthy lifestyle conditions, so every patient should be linked to adherence supporters and case managers. Nurse, Hawassa University, Ethiopia
Self-management practices and recommendations
Self-management practices
In South Africa, in some facilities, due to the high number of patients, we are using self-management as part of care. What we do is equip them [patients] with the skills of self-management. … Those who are stable and have viral suppression come only once a year for symptom screening and to get viral load investigation. For the rest of the time, they must basically care for themselves using their skills of self-management. … Patients need to be empowered to care for themselves since we really don’t have the capacity to have detailed management of patients. Researcher, Stellenbosch University, South Africa.
Context-specific and comprehensive self-management
Adults are often thought to practice self-care. However, many teenagers today are aware of their HIV status and are receiving treatment, so we don’t just have to think about adults only. Moreover, the need and type of self-care before and after conducting sexual intercourse is different since their context varies, so we must make self-care age-appropriate and context specific. Expert, NGOs, Ethiopia.