Families affected by HIV

Identification

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.

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.

What training is needed?

Awareness raising training should include:

How to identify young carers how to maintain up-to-date and relevant information about HIV signposting to service provision

Specific routine and introductory training regarding living with HIV and young carers issues, should be provided to universal services. These services should include:

Healthcare services education services adult's services children's services voluntary sector youth services youth justice teams carer's services  Any other services that are in contact with families.

Multi-media and the internet should also be utilised - i.e. creating links from your website to other organisations that offer information about HIV and caring. 

Confidentiality is often a large barrier to families accessing and maintaining contact with services. This is compounded when families are affected by stigmatised illnesses such as HIV. It is important to include information sharing guidance and address confidentiality issues in training undertaken with professionals. The Department for Education has produced clear practical guidance for information sharing drawn from experience and consultation.

The problems with stigma and discrimination
Stigma continues to disproportionately affect people living with HIV.

Families affected by HIV are often discriminated against when their status is discovered. Many people keep their status a secret for as long as possible because they fear people’s reactions. A large proportion of children and young people living with and affected by HIV are not told about their own or family member’s status. Parents/carers fear the children’s reaction, and that the child/children will not uphold confidentiality.  It is very common for children to not know about a family member’s HIV status, whether that is the parent/carer or a sibling, although many HIV affected young people have reported finding out years before actually being told.

What needs to be done

For young carers ‘keeping a secret’ results in added pressure and stress for them. It can be very isolating and affect their well-being and social interactions.

In order to tackle this stigma, it is vital that this group are present in all generic children’s services, and that services acknowledge that this stigma exists, putting policies and practice into action to ensure the service is a safe place for young carers and their families affected by HIV. 

 

Common concerns for families disclosing information

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.

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

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.

Families with insecure immigration status are particularly vulnerable to social exclusion and isolation. They may be very worried about seeking support from services outside the family due to a fear of deportation. All services should be integrated, inclusive and responsive to the needs of all families - including those from a refugee and asylum seeking background.

Specialist information and resources to support these families is available from a range of voluntary and statutory services. 

Addressing the needs of families

It can be distressing for children and young people to be asked to interpret inappropriate information for family members. Service providers must ensure that any need for professional interpreters is properly addressed. Families are entitled to interpreting services and multilingual resources which can help to prevent children and young people taking on inappropriate translation roles for a family member with HIV.

The Department for Health has an Emergency multilingual phrasebook which has been designed for use in medical emergencies - i.e. where the patient does not speak English. It contains a list of essential questions in 36 languages, with English translations.

For more general resources visit Aidsmap, where you will find a huge range of translated basic information in the form of illustrated factsheets as well as straightforward booklets.

 

Supporting young carers in schools

Inappropriate levels of caring can heavily impact on children’s own physical health and emotional well-being, as well as their educational achievements and life chances.

Additional barriers in education exist for young carers who are affected by stigmatised illnesses, such as HIV. These barriers are perpetuated by a lack of awareness and understanding of the issues surrounding HIV. Education professionals also have a crucial role in educating children and young people about the illness. If schools, colleges and universities were able to provide clear and accurate information about HIV this would work towards reducing the stigma and prejudice that surrounds it. 

The Young Carers in Schools Programme offers schools a systematic approach to supporting young carers within schools. It provides tools and resources to support whole school awareness of stigmatised illnesses and hidden young carers. Schools are also able to gain recognition for their work and an award to showcase their commitment to young carers within schools. 

 

Issues

There are many issues that young carers affected by HIV can face. These include:

Confidentiality Isolation Problems concentrating at school Limited time to do homework Being late/poor attendance at school due to caring responsibilities Restricted time for play, sport or leisure activities with their peers Experiencing stigma and bullying  There are also positives for young carers who are well supported. For example, their caring role can equip them with valuable life skills and give them special relationships within the family

Practical Steps

What educational professionals can do to help:

Implement a school policy around young carers and HIV, which includes information sharing and confidentiality Have information about young carers and about potential sources of support visible and accessible for staff and young carers Train staff to identify young carers and raise awareness amongst all the staff Train all staff in basic understanding and awareness of HIV Establish and maintain a working group within the schools that includes HIV professionals, young carers workers and other service professionals in a position to support young carers Implement lessons in schools about HIV using trained staff and professionals who have accurate, up to the date information which is age appropriate. Learning Positive also provides an introduction and educational curriculum to support teachers in delivering HIV awareness.

Higher Education

Colleges and Universities have a role in supporting young people into the transition of adulthood and should provide a support system for young carers affected by HIV. They can also request a transition assessment from the Local Authority to ensure the correct support is in place for a young adult carer in reaching their potential. 

They also have a role in educating those who plan on working within Education, Healthcare or Social care, so that they are aware of the issues that the families and young people that they may be working with face. Our Include service can offer training to trainee teachers, social workers and healthcare professionals amongst others to ensure that they are able to identify and support young carers; including those affected by HIV. For more information contact us.

Initial Teacher Education Providers (ITE) can also access the ITE Toolkit from the Young Carers in Schools Programme that provides essential tools, templates and guidance for the providers to include the needs of young carers in their training, making it as easy as possible to ensure trainee teachers are equipped to support young carers within schools.

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. 

 

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.

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.

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.  

GP's

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.

Accessing 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.

 

HIV support services

HIV support services are likely to be the first people that a family affected by HIV turn to for help. Whether you work in the statutory or voluntary sector, with adults or 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 young carers assessments and re-assessment for the cared for person, intervention and support should prevent a child undertaking inappropriate levels of care and could offer much valued support for children, young people and their families.

HIV services should be aware of young carers’ project in their area, though some young people and families may not wish to access generic young carers services due to the actual and anticipated stigma which surrounds HIV.

Some HIV services have been in a position to create their own young carers support with great success, being able to offer both specialist HIV support and young carer provision which offers both respite and participation in the development of services and focuses on supporting the whole family.

Young carers’ organisations work successfully with other stigmatised conditions such as parental mental ill health or substance misuse. Therefore they should be able to offer a safe, confidential and supportive setting for all young carers affected by HIV, who as with all young carers are first and foremost young people.

 

Vital role of faith leaders and faith-based organisations

Faith plays a particularly large role in the lives of many UK African communities who are disproportionately affected by HIV.

As stigma and discrimination around HIV is reported to be particularly strong in these communities, faith leaders and faith-based organisations have a vital role to play in reducing this, given their influence within society. They can help to strengthen HIV initiatives and promote prevention, testing and treatment to better inform the local community about issues related to HIV.

Faith leaders and faith-based organisations are also in a position to identify young carers within their communities and are able to build close relationships with families.

Training and guidance in HIV awareness and young carer issues should be implemented at all levels.

 

Raising awareness within your community

'Raise awareness of young carers affected by HIV all the time not just on World Aids day' - Young carer affected by HIV 

Anyone working in the community is in a position to identify, support and raise awareness of young carers affected by HIV.

On this page you will find links to a range of resources which will support community members, volunteers, youth workers, young people and anyone else who wishes to make a change to reduce stigma and discrimination within their community and highlight the needs of young carers affected by HIV.

Whether you would like to develop your own knowledge or the knowledge of others, it is important to gain an understanding of:

Young carers issues Current terminology surrounding HIV Basic HIV, sexually transmitted infection and sexual health awareness Cultural awareness and sensitivity to caring roles and HIV.

We are able to provide information, training and support around young carers and their families.

CONTACT US FOR MORE INFORMATION