The Untold Story: HIV Discordant Siblings Dilemma

By Wendy C Mapfumo

Human Immunodeficiency Virus (HIV) sibling discordance is a scenario where siblings have different HIV status meaning one sibling will be HIV positive and the other sibling will be HIV negative. This can be as result of diverse factors. In this article, I hope to address some of the challenges experienced by HIV discordant siblings.

Myriad of challenges
Most studies have focused on HIV discordant couples turning a blind eye on HIV discordant siblings. The success of Prevention of Parent to Child Transmission has led to an increase in mothers who are living with HIV giving birth to HIV negative babies. HIV discordant siblings experience quite a number of challenges such as self-pity, stigma and discrimination, labelling, fear of rejection, emotional distress, shame, relationship dynamics and disclosure related issues. The challenges experienced by discordant siblings can vary depending on cultural context and availability of support systems. There are labels in the Zimbabwean context that are commonly used to describe people living with HIV such as “ano juicer, ari pachirongwa”.

The disclosure predicament

According to Willis et al (2019), adolescents living with HIV may encounter myriad of difficulties with adherence, including forgetting to take their medications, pill fatigue and lack of adherence support or they may be concealing their medication due to fears of stigma and discrimination. Chief among the challenges experienced by HIV discordant siblings are disclosure related issues. Caregivers experience mixed feelings on disclosing an HIV diagnosis to their child. In some unfortunate circumstances the child only finds about his or her HIV status on the internet. For some, issues of disclosure are initiated by health care workers. In some, instances disclosure of HIV status is done by the mother with the help of a health care worker. There are issues that arise due to lack of proper disclosure of HIV status. At times an HIV discordant sibling is excluded from going to holidays due to disclosure related issues.

Some of the reasons for non-disclosure of HIV diagnosis to a child include, fear of the negative psychological impact on the child, concerns on the child’s ability to keep the secret, age of the child, care giver feeling guilty and fear of hatred by the child (Boon-yasidhi, 2005). Non-disclosure issues start within the nucleus family. At times, caregivers tend to deceive their child on his / her HIV diagnosis. The child is informed that the medication that he /she is taking daily is for example, asthma. The lack of disclosure has a bearing on the child’s sense of belonging. Therefore, delayed disclosure remains an issue.

Low self-esteem

The other issue associated with HIV sibling discordance is self-pity. This is pity directed towards own self. HIV discordant siblings tend to have lots of unanswered questions regarding their HIV diagnosis. The most popular question they ask is “why me? Some have a tendence to isolate themselves because of their HIV diagnosis. This makes them feel inferior to other siblings in their household.

Benefits of knowing HIV status early
Early disclosure of a child’s HIV-positive status has positive implications to treatment and adherence. Disclosure of an HIV diagnosis to a child, enables the child to embrace his/ her status.

Need for psychosocial support

There is need for psychosocial support intervention towards, alleviating these challenges to do with HIV sibling discordancy. England et al (2015) defines psychosocial support interventions as interpersonal and informational activities or strategies that can target biological, behavioural, cognitive, emotional and interpersonal, social or environmental factors aiming to improve an individual health functioning and mental well- being.

The role of family

The family is the most important facet in addressing HIV sibling discordancy. Open communication within the family is encouraged when there are HIV discordant siblings. Discussion can be centred on HIV, transmission, disclosure among other issues. Family support has a potential and essential role to play in promoting psychosocial and mental well-being of HIV discordant siblings. According to Murray et al (2009) family support is essential to an individual in the sense that, the family provide warmth, love non -judgemental attitude the individual may find it easy to navigate through the challenges. In the same vein, family support boosts the individual’s esteem and mental well- being. Support from the family plays a pivotal role in the lives of people living with HIV. Family support helps HIV discordant siblings to have a sense of self worthy and belonging.

Support groups matter

In addition, support groups are key. HIV discordant siblings can be encouraged to join support groups where they can share their lived experiences and be encouraged with others. Within health-care facilities, support groups can be facilitated by counsellors, nurses, health promoters, psychologists, social workers and peer educators. Support groups provide emotional support. HIV discordant siblings are able to share their experiences and challenges living with HIV. Furthermore, it creates a platform for discussion and how to live with HIV.

‘Sense of belonging’

In the same vein, support groups serve the purpose of sharing experience, encouraging disclosure, reducing stigma and discrimination, improving patient’s self- esteem, enhancing patient’s coping skills and psychosocial functioning and supporting medication adherence and improved retention in HIV care (Chensy, 2000). Support groups help individuals develop a sense of self worthy, sense of belonging and have a positive attitude towards life. HIV discordant siblings are strengthened when they share their life experiences with other siblings with similar situations. Support groups are empowering fulfilling.

Counselling

Counselling can help improve the mental well-being being of the HIV discordant siblings. Counselling services can be provided per raising need. Self- care should be encouraged among HIV discordant siblings to help reduce stress and improve mental well-being. They can be encouraged to exercise among other things.

What do we learn?

We learn that HIV discordant siblings tend to suffer in silence, therefore there is need to raise awareness on some of the challenges they encounter and proper support is offered. Awareness, involves educating the community on the challenges experienced by HIV discordant siblings and possible solutions.

Wendy C Mapfumo is an MSc Counselling Psychology Student at Great Zimbabwe University and writes in her own capacity. She can be contacted via email wendymutambirwa@gmail.com