An ethical reflection on paediatric compliance for chronic conditions in Thyolo Hospital, Malawi

My elective took place in Thyolo District Hospital, a government run hospital in southern Malawi. I set out to evaluate compliance in low resource countries and what can lead to lack of adherence here, focussing on adolescence. At the time of my elective little was known about adolescent treatment of chronic conditions across Sub-Saharan Africa. Indeed, when comparing kidney disease, David et al [1] commented about how little is known in a stark contrast to Mellor et als [2] extensive review of issues faced within the UK. Since my elective, there has been some progression within this field, for example Vreeman et al [3] explored potential factors effecting adolescent adherence such as time on ART (anti-retroviral therapy) or enrolment into a programme with a higher number of participants influencing adherence.

For this report I shall use the fictional cases of 2 young children. Child A is 14 with a mother who is also taking ART. They have no other family as when discovering their HIV status, they were left abandoned by the child’s father. They have no other siblings. They have good access to healthcare, able to reach their well organised and utilised community ART clinic weekly to receive their medication. Contrasting, Child B is a younger child of 10 who also has HIV. They are one of 8 and their mother and therefore their care is often divided by surrounding relatives and the community as a whole. They live far from their clinic, having to walk themselves and often make it about once a month.

Leroy and Dahourou [4] discuss at length previously known challenges of compliance with paediatric ART in Sub-Saharan Africa. With this reasoning in mind, Child B is less likely to adhere to their ART regime in comparison to Child A. Beyond the obvious factors such as proximity to medication, aspects such as multiple care givers also add to the lack of stability to the regime [3]. They state that having a single care giver also on treatment further increases adherence. Additionally, the likelihood is that Child A has HIV due to their mother, and therefore there is speculation that a guilt complex surrounding this may be a further contributing factor. Whilst this may be the case for Child B, it is also said that the shame surrounding an HIV diagnosis is so strong that often it is kept from the father, therefore forcing a child to potentially hide their diagnosis and manage it more independently [4].

When exploring the ethics behind these cases, it is important to consider both autonomy and capacity regarding adherence. Ross states that ‘a child’s decisions are based on limited world experience and so…are not part of a well-conceived life plan.’ These ideas are further evaluated with Eekalar stating that where basic and developmental interests take precedence over autonomy should conflict arise between the three. These theories are explored in detail with Mellor et al [2]. Expanding on their discussion, as children grow and develop their autonomous choices become an important factor in their adherence, yet the transition to adulthood is a varied and blurred line. I found this to be the case when on my elective. Child A for example, would not yet be considered as having the autonomy to make their own decisions, yet Child B you might argue would. I found huge discrepancies in community clinics regarding who was in charge of a patient’s ART, be it young children in charge of their own (Child B), or older children still relying on their care-givers (Child A).

When considering capacity in refusing or consenting to ART it is important to remember that capacity is decision specific [2]. I found that often whilst the basic knowledge of the severity of HIV was well known throughout the patients I encountered, the understanding behind the reasoning for treating was lesser known. I found Malawi largely operated on a paternalistic picture of health, particularly when referring to adherence in children. Mellor et al. discuss that when the risks are higher the thresholds for a minor to have capacity for their decisions is set much higher when refusing treatment than consenting to it. From my experience, the time restraints alongside the sheer number of people seen in each clinic meant that proper explanations and analysis of patient capacity could not always be performed. Using the ethics that children may not reach the threshold for capacity due to the high risk of refusal of medications, it could be argued that this paternalistic take is necessary. Subsequently, often patients are prescribed medications without knowledge as to why or how to properly take them, and with effects of medication taking a while to show it can be disheartening for patients to continue.

More immediate factors appeared to be far more important to all patients I encountered. For example, the harsh side effects that you find with anti-retrovirals are minimised by taking the medication on a full stomach. Given the poverty surrounding Malawi, the solution that numerous clinics provide is a further prescription of food such as maize or a peanut butter like substance to increase caloric intake. With this being said, Child B receiving free food would undoubtedly be shared out within the family. This posed another dimension to adherence that I had previously not considered and is an area that I believe is often overlooked within studying humanitarian aid.

In conclusion, the complexities surrounding paediatric adherence in low resource countries are vast. Whilst aspects of ethics are possible to compare between the UK and Malawi, the differences in socioeconomic situations, alongside societal intricacies make it particularly difficult. The balance between allowing children autonomous decisions and adherence to treatment is one that I believe I will encounter numerous times throughout my medical career and I strongly believe that my experiences will help me think about this from different aspects. I cannot thank the Institute of Medical Ethics enough for the Bursary they kindly provided to enable me to undergo this elective.

References:
1. Davidson B, Okpechi I, McCulloch M et al. Adolescent Nephrology: An emerging frontier for kidney care in sub-Saharan Africa. Nephrology. 2017. doi: 10.1111/nep.13135
2. Mellor JS, Hulton S, Draper H. Adherence in paediatric renal failure and dialysis: an ethical analysis of nurses’ attitudes and reported practice. Journal of Medical Ethics. 2015;41:151-156.
3. Vreeman RC, Ayaya SO, Musick BS, Yiannoutsos CT, Cohen CR, Nash D, et al. Adherence to antiretroviral therapy in a clinical cohort of HIV-infected children in East Africa. PLoS ONE. 2018 doi: 10.1371/journal.pone.0191848
4. Dahourou DL and Leroy V. Challenges and perspectives of complaiance with paediatric antiretroviral therapy in Sub-Saharan Africa. Medecine et maladies infectieuses. 2017. doi: 10.1016/j.medmal.2017.07.006