Practical steps must be taken to ensure that young carers get the social care that they need

Twoo teenage boys laughing wioth project worker around a table

The issue

'It would be nice to get like regular check-ups…just seeing how you’re coping and things like that. Because it can get quite hard and you just don’t know who to speak to or anything' - Young carer affected by HIV

Adult and children’s services should be aware of the reasons why young carers and their families affected by HIV may remain hidden and unsupported. These may include:

  • The family structure  
  • The nature of the illness; HIV has an episodic nature meaning that the level of care needs change (although many young carers affected by HIV may continue to provide emotional support and worry about a family members health all the time) 
  • People living with HIV may not meet eligibility criteria or the services are not flexible and responsive to changing support needs
  • Stigma surrounding HIV may prevent families from seeking external support
  • Fear of the impact of seeking support or mistrust of mainstream services. This may be due to fear of children being taken away from families, culturally perceived beliefs of asking for state support or due to an insecure immigration status.

Some families may not know about the services and support available to them. Some families may be reluctant to involve agencies in their family situation or be fearful of acknowledging their child’s caring role. In addition to this many young carers are very loyal to their parents and would feel guilty asking for help. Some go to great lengths to conceal the illness because they fear the stigma associated with it.

Practical steps

The Children and Families Act 2014 requires local authorities to 'take reasonable steps to identify the extent to which there are young carers within their area who have needs for support' and take a whole family approach to their support.

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.

It is essential to develop pro-active practice that will enable families to feel able to ask for support. Adult services have a vital role in identifying families where there are young carers and offering timely reassessments of need for the cared for person. They must also offer a young carers assessment, to prevent a child or young person taking on inappropriate levels of care.

Children’s services and adult services should work jointly and take into account the needs of each family member and how these impact on one another. They must provide a confidential service which offers a diverse range of support such as emotional support, financial advice and practical support to families affected by HIV.

The updated Memorandum of Understanding – 'No wrong doors' – promotes working together between adults’ and children’s social care services and offers a framework which professionals can use to provide personalised and joined up support for young carers and their families.

Use the Whole Family Pathway - which signposts practitioners to support for young carers and their families - to help you understand the assessments and support available for families where there are young carers. There is a need to be sensitive to cultural perceptions and needs around HIV and caring whilst recognising a child’s fundamental right to a safe secure childhood. 

whole family pathway

Further resources 

Below is a list of further resources that can support professionals in social care to further understand the issues effecting families living with HIV, where there is a young carer.