Healthcare professionals will be the first people that young carers affected by HIV will have contact with

Male young carer sitting on sofa with younger sister

 'It would be good to ask my GP about what HIV is, but I don’t feel I can' - Young carer affected by HIV

The issue

One third of people living with HIV in the UK have experienced discrimination. Half of these instances involved healthcare workers. It is likely that Healthcare Professionals will be the first people that young carers affected by HIV will have contact with - this may be for their own health needs or the health needs of the person that they are caring for. 

Whether you work in health promotion, treatment or care, within a hospital or within the community, with adults or with children, you may be the only person who is able to ask the right questions to find out whether a child is taking on caring responsibilities. Timely intervention and support could prevent a child or young person undertaking inappropriate levels of care which could impact on their own well-being and development.

NHS England has published the Integrated approach to identifying and assessing carer health and well-being. The ‘integrated approach’ provides a toolkit that clarifies the new duties on NHS organisations under the Care Act 2014 and the Children and Families Act 2014, and provides a template Memorandum of Understanding (MOU) to support joined up working locally. It also includes numerous examples of positive practice of work that have proven successful in supporting carers and their families

Providing information

Many young carers have explained that although they may have significant, regular caring responsibilities, they are given minimal information about the health issues affecting their parent/relative. HIV presents additional complications as many parents/relatives feel they do not want to share the information about their HIV status with their children.  Supporting parents/relatives towards disclosure will take time, but providing the young carer with comprehensive information about any secondary illnesses is a start.

It is worth remembering that some young carers may be living with HIV themselves and although the term ‘affected’ can mean ‘uninfected or untested’, some children and young people with HIV are also ‘affected’ in terms of having caring responsibilities and these individuals may be identified as young carers through their own HIV healthcare.

Young carers affected by HIV often fall through the gap – particularly those who are not themselves living with HIV as they do not receive specialist HIV treatment or support and do not feel that they can talk to their GP’s

Key points

Children and young people look to healthcare professionals to give them clear, jargon-free advice and information about HIV, whilst upholding confidentiality. Stigma surrounding HIV may also inhibit people accessing healthcare. 
Identification of young carers may be difficult when seeing any patient. It is important to ‘think family’ and ask: 

  • To adults: Do you have any children? Do you need support in your parenting role? Is there anyone else that helps care for you?
  • To young people: Is there someone in your home that you help take care of? If you identify a young carer where might you be able to refer them to for HIV-specific youth-focused peer support?  

Healthcare professionals

It is important for healthcare professionals to have a good understanding of HIV, the impacts of taking on a caring role and of the support services available in their area. This will enable them to give children, young people and their families the correct information and support to systems available.  

GPs

Young carers affected by HIV tell us that it is important to raise awareness about young carers and HIV amongst all staff, including receptionists, as this will enable you to provide the best care available and have sensitivity to their needs.

Young carers affected by HIV often fall through the gap – particularly those who are not themselves living with HIV as they do not receive specialist HIV treatment or support and do not feel that they can talk to their GP’s. This is often due to fears around stigma and discrimination.  

Patients should be made aware that GPs are not allowed to refuse people to register because they are HIV-positive, or discriminate against them in any way because they are HIV-positive or because of their race, sexuality, sex or lifestyle.

Our General Practice pack provides resources and tools to raise awareness of young carers within doctors surgeries. It provides information for staff, resources to raise awareness, resources to support young carers within a practice to self-identify and a support guide to help doctors and nurses assess, support and refer easily.

Specialist HIV workers

A HIV specialist will be able to provide the most appropriate care for those living with HIV. They are also in a position to ask the right questions, to explore the caring needs of a family and identify young carers.  

School nurses

A key area of concern for young carers and their families affected by HIV, when seeking support from school nurses, is confidentiality.

It is important that clear systems and policies are in place. Good starting points include:

  • HIV in schools - good practice guide to supporting children infected and affected by HIV’
  • Life with HIV - offers information about confidentiality guidelines within schools.

Although the young person may not be aware of their own or their parent's/relatives' status, they may still need support in terms of their caring responsibilities. For further information see Whole Family Pathway.

The Queens Nursing Institute Carers Resource Project developed a free online resource to support School Nurses. It explores their role in identification, support and well-being of young carers. 

Dentists

According to the British Dental Association, the professional body for UK dentists, a dentist should not discriminate against a patient because they disclose their HIV status. Standard sterilisation and infection control procedures are sufficient to ensure that no patient poses a risk to dental staff or other patients.

Further resources