Informing a child or YP LWHIV of their HIV status can be a difficult task, best done as a gradual, family-centred process (8). Once a child/YP knows they are LWHIV, parents and health staff can support and educate them appropriately (9). Disclosure is best done in a planned, systematic way, rather than unplanned or forced (9) and nurses can support and educate the caregivers on how to do so.
The disclosure process ideally starts from a young age: 8 years or before, in an age- and developmentally appropriate manner. Nurses should address the family’s issues and concerns concurrently. Caregivers/parental concerns may need to be explored and resolved before progressing with disclosure of the child’s HIV status. Referral to a psychologist may be useful and the nurse may collaborate with the parents’ adult HIV provider (with parental permission) to ensure that the parents are as well supported as the child. Before full ‘naming’ of the virus, the nurse can support caregivers in assessing the benefits and barriers to progressing. The rights of the child/YP should also be considered while balanced with concerns caregivers may have such as the impact of the child/YP sharing information independently (15).
The following case studies illustrate some of the complex issues that can arise in the care of children LWHIV, and the role of an HIV specialist nurse within a multidisciplinary setting. They also illustrate the importance of family-centred care and the multiple family members that the nurse may need to interact with to optimise the child’s care.
All identifying details have been changed but the case studies depict actual events.
Case study 1
B. is a female age 9 years, diagnosed with HIV as a neonate. She was born in Australia to a woman LWHIV, whose HIV status was known before conception but who did not adhere to ART throughout pregnancy. The father’s HIV status was unknown. The mother reported a history of family violence. Furthermore, she experienced prolonged rupture of membranes during labour.
The infant commenced ARV at age 1. Starting ART had been delayed due to complex psychosocial issues impacting the family’s capacity to adhere to the regimen. After initiating ART, the family administered it to B. sporadically. As a result, she developed resistance to some agents, and therefore ARVs were ceased.
B. developed severe thrombocytopenia and intravenous Immunoglobulin (Ig) was administered. There were challenges accessing Ig from Life Blood as B. did not meet the usual criteria for this treatment. The medical team continued to promote adherence to the new ART regimen, but unsuccessfully.
As B. grew, she demonstrated developmental and speech delays. She was eventually diagnosed with Attention Deficit Hyperactive Disorder (ADHD), which impacted negatively on her school and learning experiences. She had behaviour problems at school and was at risk of suspension. She was referred to a speech therapist.
The HIV nurse specialist engaged with the Child Protection Unit, and other support organisations became involved. With the support of the Child Protection Unit, a hospital admission was arranged to observe her taking her treatment directly. The nurse specialist taught B. pill swallowing.
B. experienced recurrent skin and ear infections. She had regularly been given food as a way of managing her challenging behaviour, resulting in obesity and insulin resistance.
B’s mother was in poor physical and mental health. The parents separated and the mother became B’s principal carer.
ART was successfully re-initiated when B. was age 7. She achieved viral suppression.
Disclosure of her HIV status will be carefully addressed as B. moves towards puberty.
Case study 2
S. is a 17-year-old female from Sierra Leone. Her mother died suddenly of an unknown illness. Her father died in a motor vehicle accident one month later, before her move to Australia at age 7.
S’s older sibling is her official guardian and carer. S. became unwell after arriving in Australia and was diagnosed with HIV. No other family members are LWHIV.
ART was commenced soon after diagnosis once her pill-swallowing ability had been assessed by the HIV nurse specialist.
S. has been adherent to ART, is healthy and growing and developing in line with her peers. Throughout her care, the nurse specialist linked her with services such as a Child Life Therapist (formally known as a Play therapist) and clown doctors, with the aim of enhancing her hospital experiences.
Throughout her care, the nurse specialist spoke with her at age-appropriate stages about her health, however at age 14 years, she was still not aware of her HIV status. This was due to her sibling/carer’s reluctance to allow progress in the disclosure process.
The nurse specialist engaged in intensive education and counselling of the sibling guardian over a long period. Despite this, the sibling remained very concerned about disclosure and felt the best course of action was to protect her by avoiding it. During this prolonged period, the nurse specialist continued to work with the young person, discussing general aspects of health.
Although the young person had been told rudimentary information about her health, she was not aware of any details until she searched the name of her medicines on the web and discovered they were for the treatment of HIV. The nurse specialist worked hard with the young person and family to restore trust and build their relationships. This work will continue.