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Parent refuses consent

Case study: What should Dr Jegede do when an HIV positive mother refuses to allow her daughter to be tested for HIV?

Dr JegedeFara is 38 years old and was born and brought up in a sub-Saharan African country where until recently she lived with her husband and nine-year-old daughter, Amina. Fara’s husband died a year ago and Fara and Amina have spent the last six months living in the UK with Fara’s parents.

Fara was infected with HIV over ten years ago but received HIV treatment only sporadically during this period. Since arriving in the UK, she has started regular treatment and has been seeing an HIV specialist, Dr Jegede, at her local hospital.

Fara has had problems accepting her diagnosis and she has confided in Dr Jegede that she is very uncomfortable about letting people know she has HIV. Fara tells Dr Jegede that she is also anxious that her family would react badly and would blame her if they knew.

Fara has gone to the hospital for her third appointment with Dr Jegede where he takes her CD4 cell count and reviews her overall progress, which is good. Dr Jegede has asked Fara at a previous appointment whether Amina, who was conceived after Fara contracted HIV, has been tested for HIV, as the infection might have been vertically transmitted from Fara to Amina. Fara has told Dr Jegede that she never allowed HIV tests to be run on Amina and he has been trying to persuade Fara that testing Amina would be a good idea.

At this appointment Fara remains very reluctant to let Amina be tested and becomes upset when Dr Jegede brings up the subject. She tells Dr Jegede that Amina has always been healthy and that she would have become ill by now if anything was wrong. When Dr Jegede presses Fara, she adds that she is conscious of the stigma attached to HIV infection and wouldn’t want Amina to have to cope with the upheaval a diagnosis would bring to her life.

In paragraph 2 of Protecting children and young people: the responsibilities of all doctors, we say that all doctors must consider the safety and welfare of children and young people, whether or not they routinely see them as patients. Doctors who care for adult patients must consider whether their patient’s condition or behaviour poses a risk to a child or young person.

In paragraph 8, we also say that doctors should work with parents and families, where possible, to make sure that children and young people are receiving the care and support they need. Good communication with parents is essential.

In paragraphs 20–22, we say that doctors should normally discuss any concerns they have about the safety and welfare of a child or young person with their parents. Being open and honest with families, and avoiding judgemental comments or allocating blame, can encourage families to cooperate and help children and young people stay with their families in safety.