For families, disclosing a parents HIV status or the HIV status of a child is a difficult decision and can present complex concerns

Teenage girl talking to project worker on sofa

Common concerns for families disclosing information

'I’ve told them (her children) not to tell anybody at school because if you tell them about us they’re going to reject us, you’ll not have any friends' - Mother with HIV

Disclosure and confidentiality is a wide and varied subject; even the term disclosure itself can present problems and professionals are being encouraged to move away from the use of the concept of ‘disclosure’ to less stigmatising ideas of sharing and telling. Professionals need to raise awareness around how to disclose information appropriately, in a way that will enable more openness in family life and whilst maintaining confidentiality.

Concerns that are often highlighted are:

  • When is the right time to tell a child?
  • Will the child understand?
  • Will the child share this information with others?
  • What might the repercussions of this be?

Concerns are linked to the actual and anticipated experience of stigma and discrimination that families living with HIV face; if a child discloses their status they could in turn be disclosing a family member’s status.

How can we support this?

Good joint working relationships between HIV services and young carers services could offer the additional support the parent/relative feels their child needs to support disclosure.

Recent research suggests that parental disclosure of HIV to their children helps children to understand why they are being asked to care for their parent/family member and often leads to more supportive caring relationships within families.

Good joint working protocol, such as the memorandum of understanding, should include specialist support services to help foster positive joined up working and raising awareness of HIV.

There are many resources available to help support both practitioners and families in understanding disclosure. 

Children and young people are perceptive, many young carers affected by HIV state that they have already understood that something is going on within their family. Depending on their age and the protocols followed in partnership with the family, you may be able to give them some basic, clear explanations, adding more detail as time goes on.

For those young people who are aware of their parents' HIV status, feeling comfortable about when to disclose will differ between families, and should be agreed between the parent and the young person. They will know when they feel that discussing the HIV status is okay and when not to mention it. Consider the issue of disclosure when planning a referral to a young carers service and agree this with the young person in order to give them a level of control and security when accessing the service. 

Laws and guidelines

There are strict guidelines, laws and regulations in place to ensure that confidentiality is upheld within Healthcare. Social Care, schools, charities and other organisations should also have very strict confidentiality policies in place.

There are however practical limits to confidentiality, particularly when it comes to multi-agency working. Practitioners and organisations may need to share information to ensure that the best possible support is being received. This should always been done with family consent.  

The amount of information shared should be limited to what is essential - it is not always necessary to disclose someone’s HIV status.  When seeking support, we can say living with a long term illness.

Further resources