“I did not choose to be HIV positive, I was born with it. When I go to the hospital the nurses are very mean to me. They neglect me and at times throw insults at me. At times they task me to sort my treatment file among a pile of many files, without which they will not give me drugs. Worst of all in my school the teacher isolated me from the rest of the class and assigned a seat for me at the back of the class. I lost all my friends and I became a laughing stock in my school. I could not bear the shame and trauma so my uncle had to withdraw me from the school to learn hairdressing. Still, as soon as the hairdresser learned of my HIV status, I was banned from using any needle or scissors in the saloon. I became a passive observer. What wrong did I commit to deserve all these? It is not my fault that I am HIV positive, I got it from my mother as a baby”.
This sorrowful experience was shared by a 15-year old girl in the West regional capital of Cameroon, Bafoussam during a sensitisation and motivation campaign carried out by the FALCOH Foundation among adolescents living with HIV as part of the 2018 World HIV day commemorations. This tale, one of many, left the entire crowd of participants and facilitators sobbing in grief.
It is hard to believe that in this day and age, when there has been sustained global attention on the fight against HIV/AIDs and the promotion of women, children and adolescents’ health, HIV positive adolescents continue to experience stigma in hospitals and schools in low-middle income settings like Cameroon. A lot of investment (time, money, research and technical knowledge) has gone into eliminating stigma against HIV patients around the world, however, it appears that programmatic approaches to improving the quality of HIV/AIDS services (or any other vertical disease programme) which are done in silos without consideration for wider health service quality improvement, do not resolve the issue. Are global public health efforts missing the elephant in the room? And is there an aspect of quality improvement that HIV interventions, and the wider health system, have to pay attention to?
The one thread which has been identified to run through quality health systems, services and care is compassion. In recent times, quality health care has been highlighted as a prerequisite to achieving (quality) primary health care for Universal Health Coverage. For such safe, effective and people-centred care to be delivered there is a growing need for strong public health systems which design health services around individuals, with the full engagement of communities (personnel-personnel, personnel-user, facility-facility), yet this kind of engagement is lacking in most health service delivery systems in LMICs. Besides, what does it mean to be compassionate and how readily is this component of quality exhibited in healthcare delivery in Cameroon?
It is a common saying (and a biblical principle) that you should treat others as you would have them treat you. The feeling of empathy towards another’s suffering or pain and the drive to help relieve them of their suffering is the underlying principle of compassionate care, and compassion is deeply rooted in love for one another, an acknowledgement made by Donabedian (the father of quality in healthcare). Yet, isn’t it also true that you can only give what you have? By simple logic, it is clear that a health worker who is ‘not loved’ or well-treated by the system will find it hard to be compassionate.
Most HIV interventions have prioritised training programs for focal persons who are directly involved in HIV care, and some of these capacity building sessions usually have technical, as well as behavioural change dimensions. However, the health personnel are sometimes transferred from the facility where they were trained even before the programme is rolled out. In addition, poor transition mechanisms in health services often create a knowledge vacuum and disruption in the continuity of care. In fact, in some settings like the one mentioned above, patients’ antiretroviral treatment has been disrupted because the staff who initiated the patient on the regimen was absent for a variety of reasons. This highlights the importance of personnel-personnel or personnel-facility engagement. Besides, how often do the donors or care providers involve service users in designing training programs and care plans? And how often do we involve the teachers and other relevant stakeholders in designing the care plans of adolescents living with HIV?
Although a few day care centres exist in urban settings for paediatric & adolescent HIV care, most of the HIV treatment centres in my setting, like the ones our participants attended, are not adolescent-sensitive. Surprisingly, we realised that most of the adolescents we encountered have been swallowing pills blindly for years and even when they reached the age of disclosure of status this was hardly ever done. Often only their individual curiosity led them to the discovery that they had been HIV positive all along. This is not surprising when one thinks about the fact that many of their parents have passed away and some of them depend on relatives as benefactors. Besides, the healthcare is not tailored to meet their individual needs, anxieties or challenges; for instance, in the case above, the caregivers were not compassionate enough to realise that they were stigmatising the 15-year old, or that she had dropped out of school as a result of the same stigma from her teacher and peers. But perhaps this lack of compassion is a reflection of the entire health system.
Many health workers in LMICs must live with miserable salaries, deplorable working conditions and poor leadership, however HIV, and other heavily-funded disease programmes, provide regular training, better service delivery platforms and financial remunerations for health workers employed in such programmes, in order to improve the quality of their services. This creates a two-tier system within the same facilities and promotes envy, apathy and discontinuity in health services from the staff involved in routine care, so, the staff attitude may just be a reflection of the insensitivity embedded in the wider health system. The question then is, how can policymakers or donors in HIV and other vertical programmes improve the quality of healthcare for adolescents in the context of deficits in the health system as a whole?
First, HIV care has to be integrated into the general health care delivery. Resources for HIV interventions and other vertical programmes should serve as levers for strengthening the general workforce and building trusted relationships within health facilities, and between caregivers and local communities. Furthermore, enhancing compassion for quality care should be prioritised by all capacity building programs for staff within the entire health system. This will produce a boost in return on donors’ investments, and optimise the outcome (users’ satisfaction) from these interventions.
Second, special adolescent corners should be created in all HIV treatment centres in all health districts in Cameroon. Adolescence is a very delicate period in anyone’s life and stigma from the communities regarding a positive HIV status, may cast the dice in the wrong direction. They may for instance be traumatised when health facilities and schools which ought to serve as safe spaces become breeding grounds for stigma. To highlight the extent of the damage stigma can cause, the 15-year-old we encountered during the FALCOH campaign is currently enrolled for psychotherapy. Not only did she drop out of school, she also became severely depressed and delusional. This is particularly galling because a little compassion was all she needed from her caregivers and tutors, to live a normal life and fulfil her dreams in life.
Third, in addition to setting up these special care centres, a mechanism should be put in place to identify and actively engage all the significant others in the life of the adolescent in designing and planning for their healthcare – this is important because some of them in the course of seeking affection and care have ended up with early pregnancies which further compound their care needs. At the appropriate age, the status should be disclosed and the adolescent should be involved in designing their care plans according to their needs and preferences. In addition to training nurses and other clinicians to perform counselling roles, it is beneficial to have a psychologist or social worker in the care team.
Fourth, refocused sensitisation campaigns against stigmatisation should shift attention from local communities to the technical communities (teachers, nurses, midwifes, laboratory technicians, doctors etc). We had always assumed that these groups are knowledgeable enough to understand the sensitivity of the subject of HIV or any other pathology, but research has shown that behavioural change depends on many other factors in our environment, rather than acquired knowledge alone. The neuroscience of communication is one of those important factors which has to be taught and applied in building trusted relationships for compassionate care.
So, as we commemorate HIV week, let us be aware that HIV/AIDs stigma is still very much well and alive in LMICs like Cameroon, and this even more so for vulnerable groups like adolescents. We have to remove the log of stigma from our (clinicians’) eyes before seeking to remove the specks from the eyes of local communities. Compassion has to be carefully kneaded into healthcare, irrespective of the programme, if we are to reap the desired outcome (users’ satisfaction) in terms of quality, and the engagement of civil society organisations which are key actors in driving communication and behavioural change to improve the quality of healthcare for adolescents must be prioritised.
A lot of progress has been gained from global public health efforts to combat HIV/AIDs, but much still remains to be done to achieve quality UHC in which adolescents infected with the virus will not be left behind. It is not their fault that they are HIV positive. The health system is expected to promote well-being and ensure healthy living for all citizens, including HIV positive adolescents. To achieve this, the sexual and reproductive health and rights of adolescents must get priority in the policy and strategic planning for health in the country.