Support is vital in ensuring a safe and confidential place to talk

Two teenagers laughing outside

'Projects like PPC give us a chance to say what we are going through, I can talk to them about HIV and I can talk to them about being a young carer' - Young carer affected by HIV and Positive Parenting and Children (PPC) service user

Assessing the needs

When assessing the needs of young carers it is essential to take into account the needs of the whole family. In families affected by HIV there are specialist issues that also need to be addressed, such as the stigmatised nature of the illness and the episodic patterns of need related to HIV.

The support of young carers’ organisations - in successfully reaching out to young carers affected by HIV - is vital in ensuring it is a safe and confidential place to talk, reducing stigma and building support for this hidden group.

Medication and health care in the UK is such that people living with HIV are living long, healthy lives. A young person affected by HIV may only meet the young carer’s criteria due to a secondary illness of the person they are caring for. This may relate to a HIV related long term medical condition; the toxicity of the drugs that need to be taken; or mental ill health due to the impact of living with a highly stigmatised chronic illness. 

It is important to remember that the emotional impact felt by young carers affected by HIV may continue, even when the person they have been caring for is well. 

Areas of consideration

In consultation with a range of young carers’ services and HIV services, we have identified these areas that need to be considered in relation to HIV.

1. Referral and working with HIV services

Due to the actual and anticipated stigma faced by people living with HIV, many often choose to only access HIV services. There are few HIV family services, as most services focus on the needs of the adult living with HIV.  

The HIV services may not be aware of or have considered the needs of the family as a whole. They may not know what constitutes a young carer, or be aware of the support available to them.  Some may have had no experience of young carers’ services and fear breaches in confidentiality for their service users.

Action: Building links and raising awareness within HIV services is a good starting point. Establishing a relationship with the local/regional HIV service will offer opportunities for an exchange of training - for example the HIV service may be able to deliver basic HIV awareness training for young carers' staff and the young carers’ service may be able to deliver training in identifying and referring a young carer to HIV service staff. 

This is also a way of ensuring the referral and assessment process upholds confidentiality. Include discussions about young carers affected by HIV in organisational development days and team meetings. You could also form a working group to write a protocol as part of staff professional development. HIV services may be apprehensive at the start – it is important to acknowledge that many have experienced breaches in confidentiality that have led to appalling experiences for their users – but by working together, trust will be established. HIV services are more likely to help if the issues surrounding HIV and above protocols have been already considered. 

Where local authorities have developed a local Memorandum of Understanding (MoU) to support joint working, voluntary and healthcare services and issues of confidentiality and information sharing should be addressed to ensure all practitioners are aware of their responsibilities.

2. Confidentiality and information sharing

Confidentiality is fundamental for many people living with HIV. Even within a family, there will be some people who are unaware of a family member’s HIV status.

Parents and carers are not required to inform a school that their child is living with HIV, however best practice guidance for schools states that if a pupil is infected or affected by HIV only the head teacher and a designated member of staff need to know. This translates to any children’s or young person’s service.  

Action: Young carers’ services record and store information about young carers and their families in different ways. An easy way to resolve any concerns over confidentiality is to be able to offer a family living with HIV the level of confidentiality they may need in order to feel happy giving permission for a young person to access a service. Therefore only the overall manager and one designated worker need to know that the family are living with HIV. A separate filing system with perhaps a different colour paper form can be kept by the manager to monitor how many young carers affected by HIV are accessing the service, to support possible service developments for them or for funding and monitoring purposes.

3. The young carer who does not know the parent has HIV

It is not unusual for children to be unaware of their parent’s HIV infection. Therefore, a referral may come through from a HIV service where the young carer does not know, or is thought to not know, about the HIV status of the person they care for.

If the service is running a discrete group for those caring for a person living with HIV, then this young carer will not be able to attend the group. However, once the family has built a relationship with the project, disclosure could be something that the young carers’ service supports the family with. It is widely agreed that open and honest dialogue with children in relation to their parent’s poor health helps the child and the family cope and support each other better.

Action: The young carers’ service needs to decide its stance on this issue. If a young carer grows to trust the workers, they may start to ask questions. No child-centred organisation would advocate lying to a child, but it is also not the organisation’s information to share - protocols therefore need to be established and then agreed with the parent/carer prior to the young person accessing the service.  

Setting out an agreed practice will ensure that staff are equipped to deal professionally with any situation that arises. It will also demonstrate that young carers’ services have fully taken on board HIV related issues, and are making themselves open to all young carers affected by HIV - both to those who know about HIV in their family and those who do not.