By Oratai Butterworth, Study Nurse
When we started recruiting volunteers for the PREDICT study in April 2006, many children were brought to the screening process. They undertook a journey with us until the study was completed in August 2011. Three years of following up allowed us as healthcare personnel to get to know our volunteers, whose lives are different yet interesting. They all have their own story to tell.
Nong A, 16 years old
Nong A participated in a HIV-NAT long term children cohort study called HIV-NAT 015 prior to joining the PREDICT study. He was only 8 years old when he first joined HIV-NAT; and like many children in the cohort that had HIV from mother to child transmission, his whole family comprising father, mother and younger sister were also HIV infected and they all receive antiretroviral treatment at HIV-NAT. As everyone in the family takes antiretroviral treatment, they help each other adhere to the regimen.
However, there was a time when Nong A had poor adherence to medication. When he was 11, Nong A did not take ARV as regularly as he was supposed to. At that time he did not know his status and as the physician recommended that he learn about his HIV status that is the reason he has to take medication every day. The doctor explained to his parents about the reason for disclosure, and they agreed to share with Nong A the secret of the family. Nong A cried when he learnt about his status but knowing about his medical condition made him understand the need for good antiretroviral treatment adherence.
HIV-NAT held a participants’ meeting at the end of the PREDICT study. Nong A’s mother took the opportunity to thank the PREDICT team for providing continuous care to her family and giving them the confidence to stay in the project until the study was completed. The HIV-NAT team very much appreciated her kind encouragement.
Nong A’s family very much values education and both his parents are teachers. We are very proud that Nong A enjoy going to school. He always does well at school and gets good grades. We are happy that about his plan to participate in a student exchange program in USA this year and we hope that he will enjoy a bright future like other children do.
Nong B has not been as fortunate as Nong A and many other children. We met B when he was 4 years old. His mother passed away from HIV/AIDS complications. He lived with his father and his younger sister who were both HIV negative. B’s father, not having a full-time job, takes up odd jobs occasionally. He thus found it difficult as a single father to support the family and take care of the two children. Nong B joined PREDICT study and he had to take ARV as stipulated by the protocol.
AZT/3TC/NVP were prescribed for B when he first joined the study project. It was a challenging time for both his father as a primary care giver who had to prepare ARV in liquid form for B and B himself who was very young and had to take awful-tasting antiretroviral medication. Nonetheless, every three months the father managed to carry 29 bottles of ARV back home and bring empty bottles back to HIV-NAT. It was not an easy time for the family but B adhered well to the regimen thanks to his father’s great efforts.
Taking ARV medication became easier for B as the PREDICT protocol allowed participants to take ARV in tablets form later on. However, B’s life has not become any easier as one day the father decided to take B to HIV health care center because he could not afford to look after his son any longer due to financial hardship. B has had to stay at the center with other HIV infected children. On our frequent visits to the center we can see that B missed his father very much. He looked a lot less happy than he ever was when we first met him. However, as time went by, he has become more familiar with new friends and successfully adapted himself to his new life at the center. He has lived at the center for 4 years now. His father comes to visit him from time to time and we are glad to learn that B is healthy and happy. Luckily, his body responds well to the ARV therapy; as a result, he still takes the same regimen prescribed to him when he first started. He has enrolled in the PREDICT cohort study and the HIV-NAT team wishes B good education and future even though his life is more difficult than that of many other children.
I am proud to be a part of the PREDICT study project and hope that the study results will benefit many children living with HIV. It was a pleasure getting to know and providing care to the volunteers.