How you can identify and support young people living in families affected by HIV

Female young carer bringing food to dad

'I would like them (agencies) to learn more from talking to our family' - Young carer affected by HIV


It should not be assumed that all children in families where someone is living with HIV, are automatically young carers.  

Problems arise when the level of responsibility taken on by the young person is inappropriate and impacts upon their own well-being. Children and young people may not disclose or even be aware that a member of their family is living with HIV, and therefore may not reveal their caring responsibilities. A child or young person’s lack of knowledge about the nature of their parent's illness should not lead to a lack of support. 

Services should be provided with information to support families and to ensure that children and young people are not affected by inappropriate caring roles and responsibilities.

Awareness raising and training sessions should be used to:

  • Increase the self-identification of young carers
  • Increase the awareness and understanding of HIV.

All services have a role to play in the identification and support of young carers affected by HIV, this toolkit provides further information for: 

Within local areas professionals should consider implementing a ‘Memorandum of Understanding’ to promote joint working between adult’s and children’s social care services and enhanced partnership working with health and third sector partnerships. Joint commissioning between adult's services and children's services should consider providing specialist HIV family workers, information services and further support.

For more information see the Whole Family Pathway a web based resource for all practitioners to support young carers and their families. Following the pathway will help you to understand the assessments and support available for young carers.  


Think Family

The Children and Families Act 2014 and the Care Act 2014, both significantly strengthened the rights for young carers. When a child is identified as a young carer, the needs of the person they care for and the whole family should be considered. Assessments and support should be preventing children and young people from taking on excessive or inappropriate care. 

HIV presents very specific needs concerning confidentiality and acknowledgement of, and sensitivity to, the real and perceived stigma faced by families affected by HIV. 

Many families affected by HIV, fear breaches in confidentiality and may be reluctant to access support for young carers because of this.

Support for young carers

Local authorities must offer an assessment where it appears that a child is involved in providing care. This should automatically trigger a reassessment of the needs of the cared for person to determine if additional support to the cared for person can reduce the caring role of the young person.

Local young carers services often provide routes to assessment and support for young carers. Building strong working links with local young carers services - to establish referral processes and information - sharing is vital. These services may need support from specialist HIV professionals and a partnership could therefore offer the opportunity for an exchange of training and shared expertise.

If the family do wish to inform other professionals the young people should be able to access confidential support services, such as young peoples’ specialist HIV support services or a lead teacher.

To find out more about whole family working, referrals to other services including your local young carers project, see the Whole Family Pathway.

Other considerations

You may also wish to consider: 

  • Requesting a 'Young Carers Assessment' from your local authority. This should be done alongside a reassessment of the cared for person, to ensure young carers are not negatively impacted by inappropriate caring roles.
  • Requesting a 'Transition Assessment' so the young carers can consider their wishes and aspirations for their future.  The Care Act 2014 places a duty on local authorities to assess young carers before they turn 18, so that they have the information they need to plan for their future.
  • Consideration should also be given as to whether direct payments can be used by the cared for person to reduce the caring role of the young person.