Children at Risk of Blood Borne Viruses and HIV Infection
This is intended to give all staff working with children and families confidence at recognising and responding to potential risk of blood borne viruses / HIV infection for children and young people.
1. Introduction
1.1 Blood borne infections occur where infected blood or other bodily fluids are transferred into the body.
1.2 The Hepatitis Viruses (Hepatitis B, C and D) which cause liver disease, and HIV that causes AIDS, can sometimes be found in certain groups of population. A person may be a carrier of a virus without realising as they have not shown any of the symptoms. They can however still pass the virus on through accidental exposure to another person’s blood or other infected blood fluids.
1.3 Most people recover from Hepatitis B after a period of 6 months. About 10% of people who get the infection develop a chronic condition where there is more risk of damage to the liver. They may also become long-term carriers of the infection.
1.4 Hepatitis A and E viruses are normally transmitted by faecal or oral route. They do not present a significant risk of blood-borne infection.
1.5 Blood Borne viruses are rarely a sole cause for child protection concerns. Professionals should maintain collaborative working and refer to existing procedures in order to ensure that any such diagnosis within a family does not prejudice the assessment or outcomes of any child protection/welfare concern.
1.6 The advent of combination therapy (Combination therapy is the use of two or more drugs at the same time for the same disease) has brought hope to people with HIV, but it has also brought new moral and ethical dilemmas about treatment and testing, particularly in relation to children. Recent research into the role that ante-natal treatment and breastfeeding play in transmission raises new practice issues about promoting the health and welfare of infants. Parental wishes about treatment for their child may conflict with medical and child protection views about what is best for that child's health and development.
1.7 Due to the advancement of medical practice, children with HIV who were not expected to survive beyond their fifth birthday are now adolescents beginning relationships with their peers. They need to be able to make informed decisions about their own sexual health and the health of their prospective partners.
2. Recognition of Risk
2.1 The main child protection issues likely to arise with the blood borne viruses are when a:
- Mother known / thought to be to be HIV+ declines testing and treatment for herself in pregnancy and / or for the baby following delivery
- Mother known to be HIV+ positive insists on breastfeeding her baby against medical advice (breastfeeding currently nearly doubles the risk of transmission from mother to child in the UK)
- Child is thought to have a blood borne virus infection and his/her parents refuse to agree to medical testing and / or treatment resulting in significant harm.
- Child not being brought for appropriate treatment, such as vaccination against hepatitis B, hepatitis C or HIV, and this being likely to result in significant harm.
- Child is on the appropriate treatment, but medication is given inconsistently or stopped altogether and there is a danger of resistance developing
- Child has been sexually abused and the abuser is thought to be/known to be infected with a blood borne virus, HIV and Hep B testing should be considered but is being refused by a parent
- Child has been exposed to contaminated needles and syringes
- Child is a young carer for a parent known to be infected with any blood borne virus and repeatedly protective measures are not used / encouraged when cleaning / dressing open wounds
2.2 Children at risk of hepatitis B or HIV infection should be identified early and those risks explained to the parents. Risks may arise due to the lifestyle of the parents e.g. substance misuse, or relate to a pre-existing medical condition in one or both parents. Consideration of the risks to children from blood borne viruses is an integral aspect of assessment.
3. Transmission risks to the unborn baby
3.1 Most commonly, children with HIV are infected as a result of transmission of HIV infection from their mothers. Mother to child (vertical transmission) can occur before or during the birth, or afterwards through breastfeeding.
3.2 There is clear evidence that the risk of transmission can be greatly reduced by interventions such as anti-retroviral drug treatment, elective caesarean section and the avoidance of breastfeeding.
3.3 When risks of infection are identified in the antenatal period, most commonly via the infectious disease antenatal screening programme, health professionals must make adequate plans to ensure that risks to babies from delivery are minimised. Furthermore, plans should ensure that, following delivery:
- Babies at risk of HIV are tested appropriately and appropriate medication is initiated.
- Babies at risk of hepatitis B are vaccinated (and given immunoglobulin if this is appropriate) within 24 hours of delivery. The process for completion of a full course of Hep B vaccinations and testing for infection at one year is also initiated.
3.4 In the UK, mothers with HIV infection are encouraged not to breast feed as this increases risks of transmission. When a mother chooses to breast feed, helpful guidance should be sought from Health Professionals e.g. Health Visitor, General Practitioner. It is estimated that breastfeeding doubles the risk of HIV transmission to the baby. Together with anti-retro-viral treatment, a caesarean section and the total avoidance of breastfeeding the levels of mother-to-child HIV transmission can be reduced significantly to around 5%.
3.5 All professionals must maintain contemporaneous records of all discussions with the parents regarding risks to their children and advice given or actions taken to safeguard the children.
4. Reducing the risk of HIV Transmission
4.1 Intervention to reduce the risk of vertical transmission can only take place if a pregnant woman is aware of her own HIV infection. The Government has set targets for the increased uptake of ante-natal HIV testing and testing is now offered to all pregnant women, although it is not compulsory. A number of women will decline an HIV test in pregnancy and this is their prerogative. The most rapid spread of HIV infection is now as a result of unprotected heterosexual sex. As a result of these factors, there will be an increase in the number of pregnant women who test positive for HIV.
5. Liaison with Children’s Social Care re Rejection of Medical Advice
5.1 There should be a referral to Children's Social Care Services where parents appear to be refusing intervention to reduce the risk of vertical transmission. However professionals should not submit a referral until they have discussed their concerns with their safeguarding lead and obtained consent from the patient or the person with parental responsibility where a child is too young or not able to provide informed consent. Such refusal may be due to a number of reasons, for example cultural beliefs, concerns about bonding, or in order to maintain confidentiality about HIV status. (see section below re: consent)
5.2 In rare situations, before the birth, a pregnant woman may decline some or all of the interventions offered, or may indicate that she intends to breastfeed. Under UK law, unborn children do not have any legal status, and pregnant women cannot be compelled to have an HIV test, to accept medication or to undergo a caesarean delivery. However, Children's Social Care Services should become involved where there is concern that an unborn child may be likely to suffer significant harm. Such involvement can include convening a pre-birth child protection conference, placing the unborn child on the list of children subject to a Child Protection Plan and agreeing a plan to protect the baby as soon as she/he is born.
5.3 Following the birth, the baby has rights of her/his own, including a right to 'the highest attainable standard of health and to facilities for the treatment of illness' (UN Convention on the Rights of the Child: Article 24). Consideration may need to be given to whether the baby is suffering, or is likely to suffer, Significant Harm (Children Act 1989: Section 47) and whether action is needed to safeguard the baby. In practice, concerns will arise at this stage where parents are declining anti-retroviral medication for the baby following the birth, or breastfeeding where safe alternatives are available.
5.4 Whether concerns arise before or after the birth, the first aim regarding the risk of vertical transmission must be to work in partnership with the parents to reduce the risk to the baby. In almost every case it is in the child's best interests to be cared for by parents and this principle should underpin the assistance offered to the family.
5.5 There can be no universal guidelines as to the best course of action and each family will require an assessment and decisions made on the basis of:
- The opinion of an Obstetrician/Paediatrician with expertise in HIV infection;
- The nature and degree of harm to the child;
- The general context of parenting.
5.6 The conclusion of the assessment may be that the baby is at increased risk of being infected with HIV as a result of actions or in-actions by the parents. A decision will need to be made whether this constitutes a likelihood of suffering significant harm, and therefore whether child protection procedures or a legal intervention is required.
6. Concerns around sexual abuse and infection
6.1 Adults who have been raped are offered HIV testing and prophylactic (protective) treatment, but this is not routine practice with children who have been sexually abused. Consideration should be given as to whether such intervention may promote the health and wellbeing of individual children where they have been exposed to the risk of HIV infection. It should also be recognised that children may have fears about HIV infection even where this is unlikely to be a realistic risk, and they should be provided with relevant information and support to make an informed decision.
7. Sexually active/intro-venous drug use
7.1 It is the responsibility of all those working with young people to ensure that they are aware of safe sexual practices and the dangers of needle sharing. Where a young person requests an HIV test, they will need advice or support. Unless there are exceptional circumstances, such requests must be on their own initiative rather than at the suggestion of adults. It is never appropriate to suggest that a young person have an HIV test because they are thought to pose an infection risk to others.
8. Response to Identified Risks for a Child
8.1 Concerns about blood borne viruses such as hepatitis and HIV should be sensitively explored. If a child’s concerns arise because they have suffered abuse, s/he may need time to make a full disclosure. It is in the best interest of any infant/child/young person thought to be at significant risk of exposure to a blood borne virus to be tested. Information about the suggested need for testing should always be non-directive and sensitive to the child and family’s ethnic background, culture and race.
8.2 The risk of community acquired HIV is extremely low, however children and adolescents are potentially at risk of contracting HIV from a variety of exposures including needle stick injury, sexual abuse, consensual sexual activity in adolescence, biting or being bitten by another child. There have been no school-related transmissions. Counselling should be considered as appropriate for anyone deciding whether or not to be tested for blood borne viruses such as HIV.
8.3 If a professional is concerned that a child may have been placed at risk of HIV or hepatitis B an informed decision must be made about whether to raise this with the child or parent/s.
8.4 Post exposure prophylactic treatment (PEP) may be indicated for children who have been exposed to HIV, hepatitis B or hepatitis C e.g. through a needle-stick injury or sexual assault. This treatment minimises the risk of infection. HIV prophylaxis should be started ideally within an hour of exposure. PEP is now generally not recommended after 72 hours post – exposure. HIV PEP is most effective if started within 1 hour of exposure but may be beneficial up to 72 hours after the risk of exposure. Following exposure to blood borne viruses, it should be remembered that the risk of transmission is highest for Hepatitis B, then Hepatitis C and lastly HIV. Professionals should seek urgent specialist advice about treatment. (NB Inoculation injuries and children in schools and similar settings: Risk Assessment Guidelines for Health Protection Unit November 2009, HPA)
9. Treatment of babies and young children
9.1 Without any treatment, HIV infection in children may result in chronic disease and about 20% of HIV infected children develop AIDS or die in the first year of life. By the age of 6 years, about 25% of the children will have had some illness because of their infection.
9.2 The long-term picture is unknown, but it is likely that most children with HIV will benefit from early life prolonging treatment. HIV may manifest as AIDS defining illnesses such as PCP (Pneumocystis Carinii Pneumonia), Candidiasis, Cytomegalovirus or Tuberculosis, or it may take a more non-specific form. Failure to thrive, unexplained persistent fever and diarrhoea are frequent features of this syndrome.
10. HIV
10.1 A significant number of children born to HIV positive parents and living in the UK remain untested. Testing is in the interest of any infant / child / young person thought to be at risk of exposure to HIV. Many of these children could potentially be infected with HIV and survive through childhood to adolescence without any symptoms.
10.2 Many HIV infected parents are reluctant to test their child despite the increasing knowledge about HIV and improved prognosis with highly active antiretroviral therapy (HAART). Some of the main reasons for refusing testing are:
- The child being well
- Fear around disclosure of parent HIV diagnosis to the child
- Stigma/isolation/guilt
- Inability to cope with a positive result
10.3 Prior to closure of the charity in December 2016 the Medical Foundation of AIDS and Sexual Health (MedFAST), and the British HIV Association (BHIVA) reinforced that: “it is within the competencies of all clinicians and appropriately trained healthcare workers to obtain consent and perform an HIV test. There is no need for special counselling skills beyond those required for routine clinical practice.”
10.4 HIV testing in children should be seen as a process, a time frame of 6-12 months of negotiation is a guide. The urgency of the process depends on the age and health of the child:
- In the case of infants and symptomatic children a test must occur immediately.
- Where the child is too young to consent for themselves and parental consent is required, time may be required to discuss and obtain consent. However a maximum time period of 6 months is advised before additional advice on the family is sought from legal teams and named / designated doctors or nurses.
- In the case of asymptomatic non – sexually active young people it is felt that up to a year is acceptable.
- For sexually active young people, the possibility of onward transmission makes testing urgent.
10.5 The decision for a parent to agree to HIV testing for a child may take a period of time. Professionals must always keep the timescales for the child in focus and seek advice from health specialists in the field to ensure that risks to the child are not increased by this delay.
10.6 Where a child has reached the age of 16, she/he is deemed to be capable of giving or refusing consent to their own medical examinations and treatment, but younger children may also be regarded as being capable if they are of sufficient age and understanding. This is known as being Gillick competent and must be explored on a case-by-case basis with the child concerned.
11. Monitoring and treatment of HIV positive children
11.1 The progression of HIV disease is not the same in children as in adults, and the range of drugs used to treat children is not as extensive. Children and young people who are positive will require careful monitoring to ensure that the appropriate treatment options are considered at the right time. Developmental checks, blood tests and hospital appointments are an important part of this process.
11.2 Medication suitable for children is often made up as a liquid. This means that it has a short shelf-life and prescriptions have to be made up more frequently than is the case for tablets. If medication is missed, resistance to the drug can develop. Parents and carers may require help to understand the importance of regular medication and practical assistance in maintaining supplies. Some parents and carers may not want to give powerful drugs, whose long-term effects are not yet known, to a child who appears to be healthy.
11.3 Parents need access to good quality information and consultation in order to make informed decisions. Every situation involving a child where the giving, or not giving, of medication has become a cause for concern for professionals needs to be considered individually. These cases are unlikely to have simple solutions. Where a child's health is going to be adversely affected by the withholding of treatment, it is appropriate to institute child protection procedures and obtain legal advice. In many of these situations where child protection issues arise it will be possible to consider an application to the courts for a Specific Issue Order. It is good practice to consider the need to involve a culturally sensitive advocate who can represent the parents' views and also explain the concerns to the parents.
12. Confidentiality and Consent
12.1 Both parents and the child have rights which are protected by UK law. Disclosure of medical information about a child may indirectly provide information about the parent. Informing the child of the parent’s HIV status without parental permission will infringe the parents right to medical confidentiality and must be justified. Similarly, informing other professionals about the child’s HIV status may indirectly provide information about the parent. Never the less, such a disclosure may be justified to protect the rights of the child.
12.2 Decisions to share information without parental, or in some cases, the child’s consent, are complex and should be explored carefully. When necessary, a professional should seek advice from their own legal advisors.
12.3 Within health this will be via internal legal advisors and decision making should also involve the Named Nurse or Doctor or the organisation’s safeguarding lead. Disclosing a person’s medical condition to a third party without their consent is a breach of the Data Protection Act 1998 and the European Convention on Human Rights, Article the right to respect for a private and family life, but it may be justified if any disclosure is necessary and proportionate.
12.4 Each case will need to be carefully considered in its own right. The Gillick competence of the children may be a significant factor as they may be able to consent to testing. An application to a court may be required prior to disclosing information about a parent. Legal action should be considered as a final resort. It is preferable to work collaboratively with families to bring about a positive outcome for their children.
12.5 Under the Children Act, several parties may share parental responsibility for the same child. Regardless of whether a local authority shares parental responsibility under an interim care order or care order, it still has to balance any duty to disclose against the child or parent’s right to confidentiality about their medical condition. Parental consent (to testing or sharing of information) should always be sought where the child is not capable of giving informed consent. Although consent may be given by one person with parental responsibility, caution should be exercised if there is evidence of disagreement between two parents. Legal advice must be sought in these cases and it may be necessary to involve the courts.
12.6 There may be situations in which a parent or carer is adamant that disclosure should not be made. In such circumstances an on-going dialogue with the parent or carer should be maintained. Additionally it is possible to provide the child/young person with detailed information about their health and illness without naming their disease.
12.7 While affected children and young people have no absolute right to information about another family member the strain of living with this sort of secret can affect the whole family. Again it is possible to provide appropriate information and support without disclosing the diagnosis of the individual family members.
12.8 If the child is a young adult over 16 or is under 16 but Gillick competent and it is their own health that is affected, there may be compelling reasons for disclosure to take place. A young person of 16 has a right to make decisions about their medical care and to give consent to treatment. In addition, they may be in a sexual relationship or be considering a sexual relationship. In the case of a child or young person under 16 who is not Gillick competent, it is the parent or guardian who has the right to make decisions about whether disclosure is made.
12.9 A delicate balance needs to be struck between considering the wishes of the parent or carer and the rights and emotional wellbeing of the young person and if disclosure is considered to be necessary, legal advice should be sought before such disclosure takes place.
13. Unintentionally Breaching Confidentiality
13.1 In some cases a professional who works exclusively with patients who have blood borne conditions such as HIV may have cause to refer the family to children’s social services for other reasons. This increases the possibility of breaching confidentiality unintentionally. When knowledge of a blood borne virus is not essential to assessing risks and providing support to the family, social services may need to ensure that other professionals involved with the family do not know about the involvement of specialist health staff.
14. Local Education Authorities, Proprietors Providing Service in Schools, Early Years and Child Care Settings
14.1 The decision to inform a child’s education setting must be taken on a case by case basis. In schools, early years and childcare settings there may be reasons why the proprietor/person in charge should be informed. These reasons include if the child is frequently absent due to ill health or to attend hospital appointments and may need additional educational support. If the child is on medication, arrangements may be needed to manage the medication safely.
14.2 Where the education setting is informed every effort should be made to safeguard the child’s confidentiality and right to privacy. Those who are made aware should be strictly confined to those who need to know in order to ensure the proper care of the child and for any additional pastoral and educational support that may be required.
14.3 Information should not be disclosed to carers or in schools solely on the basis that it might help protect those involved in the care or treatment of a child with blood borne virus infection. Standard hygiene precautions should be in use to protect against infection and it is a requirement under COSHH for risk assessments to be done in all settings to assess the risk and to control and minimise the risk of infection.
14.4 Under the Equality Act 2010, schools have duties not to discriminate against students on grounds relating to a disability in admissions, education and associated services, and exclusions from school. In exceptional circumstances, where a child’s behaviour is thought to pose a serious risk of infection to others, disclosure of the child’s blood borne virus status may be warranted (e.g. if a child is deliberately trying to harm other children by activities involving the direct exchange of fresh blood).
15. Useful Guidance Pathway Tools, Contacts and Websites:
15.1 Professionals in all agencies should contact, the lead officers within their own agency for specialist advice and support or the Tees Sexual Health Service.
- Blood Borne Viruses – Family Pathway (Children's Society)
- Supporting Young People with HIV Testing and Prevention (National Children's Bureau)
- British HIV Association Standards of care for people living with HIV 2018
- Tees Sexual Health Service.
- Inoculation injuries and children in schools and similar settings: Risk Assessment Guidelines for Health Protection Unit November 2009, HPA 2009
1. Introduction
1.1 Blood borne infections occur where infected blood or other bodily fluids are transferred into the body.
1.2 The Hepatitis Viruses (Hepatitis B, C and D) which cause liver disease, and HIV that causes AIDS, can sometimes be found in certain groups of population. A person may be a carrier of a virus without realising as they have not shown any of the symptoms. They can however still pass the virus on through accidental exposure to another person’s blood or other infected blood fluids.
1.3 Most people recover from Hepatitis B after a period of 6 months. About 10% of people who get the infection develop a chronic condition where there is more risk of damage to the liver. They may also become long-term carriers of the infection.
1.4 Hepatitis A and E viruses are normally transmitted by faecal or oral route. They do not present a significant risk of blood-borne infection.
1.5 Blood Borne viruses are rarely a sole cause for child protection concerns. Professionals should maintain collaborative working and refer to existing procedures in order to ensure that any such diagnosis within a family does not prejudice the assessment or outcomes of any child protection/welfare concern.
1.6 The advent of combination therapy (Combination therapy is the use of two or more drugs at the same time for the same disease) has brought hope to people with HIV, but it has also brought new moral and ethical dilemmas about treatment and testing, particularly in relation to children. Recent research into the role that ante-natal treatment and breastfeeding play in transmission raises new practice issues about promoting the health and welfare of infants. Parental wishes about treatment for their child may conflict with medical and child protection views about what is best for that child's health and development.
1.7 Due to the advancement of medical practice, children with HIV who were not expected to survive beyond their fifth birthday are now adolescents beginning relationships with their peers. They need to be able to make informed decisions about their own sexual health and the health of their prospective partners.
2. Recognition of Risk
2.1 The main child protection issues likely to arise with the blood borne viruses are when a:
- Mother known / thought to be to be HIV+ declines testing and treatment for herself in pregnancy and / or for the baby following delivery
- Mother known to be HIV+ positive insists on breastfeeding her baby against medical advice (breastfeeding currently nearly doubles the risk of transmission from mother to child in the UK)
- Child is thought to have a blood borne virus infection and his/her parents refuse to agree to medical testing and / or treatment resulting in significant harm.
- Child not being brought for appropriate treatment, such as vaccination against hepatitis B, hepatitis C or HIV, and this being likely to result in significant harm.
- Child is on the appropriate treatment, but medication is given inconsistently or stopped altogether and there is a danger of resistance developing
- Child has been sexually abused and the abuser is thought to be/known to be infected with a blood borne virus, HIV and Hep B testing should be considered but is being refused by a parent
- Child has been exposed to contaminated needles and syringes
- Child is a young carer for a parent known to be infected with any blood borne virus and repeatedly protective measures are not used / encouraged when cleaning / dressing open wounds
2.2 Children at risk of hepatitis B or HIV infection should be identified early and those risks explained to the parents. Risks may arise due to the lifestyle of the parents e.g. substance misuse, or relate to a pre-existing medical condition in one or both parents. Consideration of the risks to children from blood borne viruses is an integral aspect of assessment.
3. Transmission risks to the unborn baby
3.1 Most commonly, children with HIV are infected as a result of transmission of HIV infection from their mothers. Mother to child (vertical transmission) can occur before or during the birth, or afterwards through breastfeeding.
3.2 There is clear evidence that the risk of transmission can be greatly reduced by interventions such as anti-retroviral drug treatment, elective caesarean section and the avoidance of breastfeeding.
3.3 When risks of infection are identified in the antenatal period, most commonly via the infectious disease antenatal screening programme, health professionals must make adequate plans to ensure that risks to babies from delivery are minimised. Furthermore, plans should ensure that, following delivery:
- Babies at risk of HIV are tested appropriately and appropriate medication is initiated.
- Babies at risk of hepatitis B are vaccinated (and given immunoglobulin if this is appropriate) within 24 hours of delivery. The process for completion of a full course of Hep B vaccinations and testing for infection at one year is also initiated.
3.4 In the UK, mothers with HIV infection are encouraged not to breast feed as this increases risks of transmission. When a mother chooses to breast feed, helpful guidance should be sought from Health Professionals e.g. Health Visitor, General Practitioner. It is estimated that breastfeeding doubles the risk of HIV transmission to the baby. Together with anti-retro-viral treatment, a caesarean section and the total avoidance of breastfeeding the levels of mother-to-child HIV transmission can be reduced significantly to around 5%.
3.5 All professionals must maintain contemporaneous records of all discussions with the parents regarding risks to their children and advice given or actions taken to safeguard the children.
4. Reducing the risk of HIV Transmission
4.1 Intervention to reduce the risk of vertical transmission can only take place if a pregnant woman is aware of her own HIV infection. The Government has set targets for the increased uptake of ante-natal HIV testing and testing is now offered to all pregnant women, although it is not compulsory. A number of women will decline an HIV test in pregnancy and this is their prerogative. The most rapid spread of HIV infection is now as a result of unprotected heterosexual sex. As a result of these factors, there will be an increase in the number of pregnant women who test positive for HIV.
5. Liaison with Children’s Social Care re Rejection of Medical Advice
5.1 There should be a referral to Children's Social Care Services where parents appear to be refusing intervention to reduce the risk of vertical transmission. However professionals should not submit a referral until they have discussed their concerns with their safeguarding lead and obtained consent from the patient or the person with parental responsibility where a child is too young or not able to provide informed consent. Such refusal may be due to a number of reasons, for example cultural beliefs, concerns about bonding, or in order to maintain confidentiality about HIV status. (see section below re: consent)
5.2 In rare situations, before the birth, a pregnant woman may decline some or all of the interventions offered, or may indicate that she intends to breastfeed. Under UK law, unborn children do not have any legal status, and pregnant women cannot be compelled to have an HIV test, to accept medication or to undergo a caesarean delivery. However, Children's Social Care Services should become involved where there is concern that an unborn child may be likely to suffer significant harm. Such involvement can include convening a pre-birth child protection conference, placing the unborn child on the list of children subject to a Child Protection Plan and agreeing a plan to protect the baby as soon as she/he is born.
5.3 Following the birth, the baby has rights of her/his own, including a right to 'the highest attainable standard of health and to facilities for the treatment of illness' (UN Convention on the Rights of the Child: Article 24). Consideration may need to be given to whether the baby is suffering, or is likely to suffer, Significant Harm (Children Act 1989: Section 47) and whether action is needed to safeguard the baby. In practice, concerns will arise at this stage where parents are declining anti-retroviral medication for the baby following the birth, or breastfeeding where safe alternatives are available.
5.4 Whether concerns arise before or after the birth, the first aim regarding the risk of vertical transmission must be to work in partnership with the parents to reduce the risk to the baby. In almost every case it is in the child's best interests to be cared for by parents and this principle should underpin the assistance offered to the family.
5.5 There can be no universal guidelines as to the best course of action and each family will require an assessment and decisions made on the basis of:
- The opinion of an Obstetrician/Paediatrician with expertise in HIV infection;
- The nature and degree of harm to the child;
- The general context of parenting.
5.6 The conclusion of the assessment may be that the baby is at increased risk of being infected with HIV as a result of actions or in-actions by the parents. A decision will need to be made whether this constitutes a likelihood of suffering significant harm, and therefore whether child protection procedures or a legal intervention is required.
6. Concerns around sexual abuse and infection
6.1 Adults who have been raped are offered HIV testing and prophylactic (protective) treatment, but this is not routine practice with children who have been sexually abused. Consideration should be given as to whether such intervention may promote the health and wellbeing of individual children where they have been exposed to the risk of HIV infection. It should also be recognised that children may have fears about HIV infection even where this is unlikely to be a realistic risk, and they should be provided with relevant information and support to make an informed decision.
7. Sexually active/intro-venous drug use
7.1 It is the responsibility of all those working with young people to ensure that they are aware of safe sexual practices and the dangers of needle sharing. Where a young person requests an HIV test, they will need advice or support. Unless there are exceptional circumstances, such requests must be on their own initiative rather than at the suggestion of adults. It is never appropriate to suggest that a young person have an HIV test because they are thought to pose an infection risk to others.
8. Response to Identified Risks for a Child
8.1 Concerns about blood borne viruses such as hepatitis and HIV should be sensitively explored. If a child’s concerns arise because they have suffered abuse, s/he may need time to make a full disclosure. It is in the best interest of any infant/child/young person thought to be at significant risk of exposure to a blood borne virus to be tested. Information about the suggested need for testing should always be non-directive and sensitive to the child and family’s ethnic background, culture and race.
8.2 The risk of community acquired HIV is extremely low, however children and adolescents are potentially at risk of contracting HIV from a variety of exposures including needle stick injury, sexual abuse, consensual sexual activity in adolescence, biting or being bitten by another child. There have been no school-related transmissions. Counselling should be considered as appropriate for anyone deciding whether or not to be tested for blood borne viruses such as HIV.
8.3 If a professional is concerned that a child may have been placed at risk of HIV or hepatitis B an informed decision must be made about whether to raise this with the child or parent/s.
8.4 Post exposure prophylactic treatment (PEP) may be indicated for children who have been exposed to HIV, hepatitis B or hepatitis C e.g. through a needle-stick injury or sexual assault. This treatment minimises the risk of infection. HIV prophylaxis should be started ideally within an hour of exposure. PEP is now generally not recommended after 72 hours post – exposure. HIV PEP is most effective if started within 1 hour of exposure but may be beneficial up to 72 hours after the risk of exposure. Following exposure to blood borne viruses, it should be remembered that the risk of transmission is highest for Hepatitis B, then Hepatitis C and lastly HIV. Professionals should seek urgent specialist advice about treatment. (NB Inoculation injuries and children in schools and similar settings: Risk Assessment Guidelines for Health Protection Unit November 2009, HPA)
9. Treatment of babies and young children
9.1 Without any treatment, HIV infection in children may result in chronic disease and about 20% of HIV infected children develop AIDS or die in the first year of life. By the age of 6 years, about 25% of the children will have had some illness because of their infection.
9.2 The long-term picture is unknown, but it is likely that most children with HIV will benefit from early life prolonging treatment. HIV may manifest as AIDS defining illnesses such as PCP (Pneumocystis Carinii Pneumonia), Candidiasis, Cytomegalovirus or Tuberculosis, or it may take a more non-specific form. Failure to thrive, unexplained persistent fever and diarrhoea are frequent features of this syndrome.
10. HIV
10.1 A significant number of children born to HIV positive parents and living in the UK remain untested. Testing is in the interest of any infant / child / young person thought to be at risk of exposure to HIV. Many of these children could potentially be infected with HIV and survive through childhood to adolescence without any symptoms.
10.2 Many HIV infected parents are reluctant to test their child despite the increasing knowledge about HIV and improved prognosis with highly active antiretroviral therapy (HAART). Some of the main reasons for refusing testing are:
- The child being well
- Fear around disclosure of parent HIV diagnosis to the child
- Stigma/isolation/guilt
- Inability to cope with a positive result
10.3 Prior to closure of the charity in December 2016 the Medical Foundation of AIDS and Sexual Health (MedFAST), and the British HIV Association (BHIVA) reinforced that: “it is within the competencies of all clinicians and appropriately trained healthcare workers to obtain consent and perform an HIV test. There is no need for special counselling skills beyond those required for routine clinical practice.”
10.4 HIV testing in children should be seen as a process, a time frame of 6-12 months of negotiation is a guide. The urgency of the process depends on the age and health of the child:
- In the case of infants and symptomatic children a test must occur immediately.
- Where the child is too young to consent for themselves and parental consent is required, time may be required to discuss and obtain consent. However a maximum time period of 6 months is advised before additional advice on the family is sought from legal teams and named / designated doctors or nurses.
- In the case of asymptomatic non – sexually active young people it is felt that up to a year is acceptable.
- For sexually active young people, the possibility of onward transmission makes testing urgent.
10.5 The decision for a parent to agree to HIV testing for a child may take a period of time. Professionals must always keep the timescales for the child in focus and seek advice from health specialists in the field to ensure that risks to the child are not increased by this delay.
10.6 Where a child has reached the age of 16, she/he is deemed to be capable of giving or refusing consent to their own medical examinations and treatment, but younger children may also be regarded as being capable if they are of sufficient age and understanding. This is known as being Gillick competent and must be explored on a case-by-case basis with the child concerned.
11. Monitoring and treatment of HIV positive children
11.1 The progression of HIV disease is not the same in children as in adults, and the range of drugs used to treat children is not as extensive. Children and young people who are positive will require careful monitoring to ensure that the appropriate treatment options are considered at the right time. Developmental checks, blood tests and hospital appointments are an important part of this process.
11.2 Medication suitable for children is often made up as a liquid. This means that it has a short shelf-life and prescriptions have to be made up more frequently than is the case for tablets. If medication is missed, resistance to the drug can develop. Parents and carers may require help to understand the importance of regular medication and practical assistance in maintaining supplies. Some parents and carers may not want to give powerful drugs, whose long-term effects are not yet known, to a child who appears to be healthy.
11.3 Parents need access to good quality information and consultation in order to make informed decisions. Every situation involving a child where the giving, or not giving, of medication has become a cause for concern for professionals needs to be considered individually. These cases are unlikely to have simple solutions. Where a child's health is going to be adversely affected by the withholding of treatment, it is appropriate to institute child protection procedures and obtain legal advice. In many of these situations where child protection issues arise it will be possible to consider an application to the courts for a Specific Issue Order. It is good practice to consider the need to involve a culturally sensitive advocate who can represent the parents' views and also explain the concerns to the parents.
12. Confidentiality and Consent
12.1 Both parents and the child have rights which are protected by UK law. Disclosure of medical information about a child may indirectly provide information about the parent. Informing the child of the parent’s HIV status without parental permission will infringe the parents right to medical confidentiality and must be justified. Similarly, informing other professionals about the child’s HIV status may indirectly provide information about the parent. Never the less, such a disclosure may be justified to protect the rights of the child.
12.2 Decisions to share information without parental, or in some cases, the child’s consent, are complex and should be explored carefully. When necessary, a professional should seek advice from their own legal advisors.
12.3 Within health this will be via internal legal advisors and decision making should also involve the Named Nurse or Doctor or the organisation’s safeguarding lead. Disclosing a person’s medical condition to a third party without their consent is a breach of the Data Protection Act 1998 and the European Convention on Human Rights, Article the right to respect for a private and family life, but it may be justified if any disclosure is necessary and proportionate.
12.4 Each case will need to be carefully considered in its own right. The Gillick competence of the children may be a significant factor as they may be able to consent to testing. An application to a court may be required prior to disclosing information about a parent. Legal action should be considered as a final resort. It is preferable to work collaboratively with families to bring about a positive outcome for their children.
12.5 Under the Children Act, several parties may share parental responsibility for the same child. Regardless of whether a local authority shares parental responsibility under an interim care order or care order, it still has to balance any duty to disclose against the child or parent’s right to confidentiality about their medical condition. Parental consent (to testing or sharing of information) should always be sought where the child is not capable of giving informed consent. Although consent may be given by one person with parental responsibility, caution should be exercised if there is evidence of disagreement between two parents. Legal advice must be sought in these cases and it may be necessary to involve the courts.
12.6 There may be situations in which a parent or carer is adamant that disclosure should not be made. In such circumstances an on-going dialogue with the parent or carer should be maintained. Additionally it is possible to provide the child/young person with detailed information about their health and illness without naming their disease.
12.7 While affected children and young people have no absolute right to information about another family member the strain of living with this sort of secret can affect the whole family. Again it is possible to provide appropriate information and support without disclosing the diagnosis of the individual family members.
12.8 If the child is a young adult over 16 or is under 16 but Gillick competent and it is their own health that is affected, there may be compelling reasons for disclosure to take place. A young person of 16 has a right to make decisions about their medical care and to give consent to treatment. In addition, they may be in a sexual relationship or be considering a sexual relationship. In the case of a child or young person under 16 who is not Gillick competent, it is the parent or guardian who has the right to make decisions about whether disclosure is made.
12.9 A delicate balance needs to be struck between considering the wishes of the parent or carer and the rights and emotional wellbeing of the young person and if disclosure is considered to be necessary, legal advice should be sought before such disclosure takes place.
13. Unintentionally Breaching Confidentiality
13.1 In some cases a professional who works exclusively with patients who have blood borne conditions such as HIV may have cause to refer the family to children’s social services for other reasons. This increases the possibility of breaching confidentiality unintentionally. When knowledge of a blood borne virus is not essential to assessing risks and providing support to the family, social services may need to ensure that other professionals involved with the family do not know about the involvement of specialist health staff.
14. Local Education Authorities, Proprietors Providing Service in Schools, Early Years and Child Care Settings
14.1 The decision to inform a child’s education setting must be taken on a case by case basis. In schools, early years and childcare settings there may be reasons why the proprietor/person in charge should be informed. These reasons include if the child is frequently absent due to ill health or to attend hospital appointments and may need additional educational support. If the child is on medication, arrangements may be needed to manage the medication safely.
14.2 Where the education setting is informed every effort should be made to safeguard the child’s confidentiality and right to privacy. Those who are made aware should be strictly confined to those who need to know in order to ensure the proper care of the child and for any additional pastoral and educational support that may be required.
14.3 Information should not be disclosed to carers or in schools solely on the basis that it might help protect those involved in the care or treatment of a child with blood borne virus infection. Standard hygiene precautions should be in use to protect against infection and it is a requirement under COSHH for risk assessments to be done in all settings to assess the risk and to control and minimise the risk of infection.
14.4 Under the Equality Act 2010, schools have duties not to discriminate against students on grounds relating to a disability in admissions, education and associated services, and exclusions from school. In exceptional circumstances, where a child’s behaviour is thought to pose a serious risk of infection to others, disclosure of the child’s blood borne virus status may be warranted (e.g. if a child is deliberately trying to harm other children by activities involving the direct exchange of fresh blood).
15. Useful Guidance Pathway Tools, Contacts and Websites:
15.1 Professionals in all agencies should contact, the lead officers within their own agency for specialist advice and support or the Tees Sexual Health Service.
- Blood Borne Viruses – Family Pathway (Children's Society)
- Supporting Young People with HIV Testing and Prevention (National Children's Bureau)
- British HIV Association Standards of care for people living with HIV 2018
- Tees Sexual Health Service.
- Inoculation injuries and children in schools and similar settings: Risk Assessment Guidelines for Health Protection Unit November 2009, HPA 2009