1.4.12 HIV and Blood Borne Viruses
Read in conjunction with:
- Consent: A guide for children and young people. 2001. Department of Health;
- ‘Don’t Forget the Children’: guidance for the HIV testing of children with HIV-positive parents. 2009. BHIVA, CHIVA and GASHH.
Milton Keynes Hospital Foundation Trust (MKHFT) staff should read this policy in conjunction with the MKHFT ‘Guidelines for HIV Positive Pregnant Mothers who do not engage with the Team or take up a Pregnancy Treatment Plan’ and ‘Guidelines for Testing children and Young People of HIV Positive Parents’.
Approved by MKSCB BMG February 2012.
- 1. Introduction
- 2. Transmission
- 3. Testing of Children
- 4. Rejection of Medical Advice / Testing / Non-engagement
- 5. Monitoring and Treatment of Positive Children
- 6. Disclosure
Human immunodeficiency virus (HIV) is never in itself a child protection issue. However, there will be a small number of families affected by HIV in which child protection issues arise, as they do in other families where there may be concerns about children. In some instances, concerns will be nothing to do with HIV and will be about parenting ability or neglect or occasionally abuse. In other cases, concerns will be directly related to HIV and may be to do with treatment and care.
Children from families affected by HIV are entitled to the same support and protection by the local authority as children from other families. The Children Act, Department of health Guidance and local child protection procedures should all be applied in the same way as they would be to any child, and the interests of the child must be the paramount consideration for all professionals involved with the family, regardless of their specific role.
The advent of combination therapy 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. Parental wishes about treatment for their child may conflict with medical views about what is best for that child's health and development. Parents may fear that child protection procedures will be used to coerce them into making decisions about testing and treatment about which they are unhappy.
Professionals should maintain collaborative working and refer to procedures in order to ensure that the diagnosis of HIV within a family does not prejudice the assessment or outcomes of any child protection/welfare concern.
The main child protection issues likely to arise with blood-borne viruses are:
- When a mother who is known to be HIV positive refuses to accept treatment for herself in pregnancy and /or for the baby following delivery;
- When a mother who is known to be HIV positive insists on breastfeeding her baby against medical advice;
- Where a child is thought to have a blood-borne disease and their parents refuse to agree to medical testing and/or treatment;
- Where a child is on the appropriate treatment, but medication is given inconsistently or stopped altogether and there is a danger of resistance developing;
- Where a child has been sexually abused and the abuser is thought to be infected with a blood-borne disease;
- Where a child has been exposed to contaminated needles and syringes.
Without any treatment, HIV infection in children may result in chronic disease and about 20% of HIV infected children develop AIDS (acquired immune deficiency syndrome) 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. 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.
The most common route of HIV infection in a child is through vertical transmission - transmission of HIV infection from their mothers - but there may also be concern that children may have been exposed to infection where:
- Children have received medical treatment in countries without access to sterile equipment or safe blood products;
- Children have been sexually abused; or
- Young people are practicing unsafe sex or sharing needles.
Mother to child (vertical) transmission can occur before or during the birth, or afterwards through breastfeeding. There is clear evidence that the risk of transmission can be greatly reduced by interventions such as anti-retro viral drug treatment, elective caesarean section and the avoidance of breastfeeding. Given that many of these women are from, and may return to, resource-poor countries, the decision to deliver vaginally may be agreed between the family and medical staff as their individual needs dictate. Many women currently deliver vaginally with anti-retro viral cover to reduce the risks of vertical transmission and results are currently promising. The estimated risk of mother-to-child HIV transmission in the UK and Europe, when breastfeeding was avoided, was between 15 and 25%. It has been estimated that breastfeeding more than doubles the risk of mother-to-child transmission of HIV. Together with other interventions as above, when breastfeeding is avoided the risk of mother-to-child HIV transmission can be reduced to less than 5%.
Reducing the risk of vertical transmission
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.
Once women are aware of their HIV infection, most choose to accept interventions that will reduce the risk of vertical transmission and protect their babies. Most women will agree a plan with medical and midwifery staff for the management of the pregnancy and birth and will agree not to breast feed. It is essential that women be offered every support to carry out the plans made. For example, assistance may be needed to arrive at a strategy for explaining decisions to partners/relatives in a way that does not breach confidentiality. Women may also need practical or financial assistance in order to carry out the plan e.g. access to bottle-feeding equipment and money for formula milk. This will be particularly important for women who do not have access to public funds. Local health trusts/social care departments may need to develop working arrangements to ensure that culturally appropriate support is offered, including the use of advocates.
3. Testing of Children
The PCR (polymerase chain reaction) test can provide accurate information about the HIV status of babies from the first few weeks of life. Given the advances in treatment, there are real advantages in determining the HIV status of children who may have been exposed to the risk of infection. This is particularly the case for children under the age of 1 year, where prophylactic (protective) treatment reduces the risk of life threatening opportunistic infections. If a baby is found not to be infected it prevents him or her being exposed to unnecessary monitoring and treatment with antibiotics.
Testing should never be routine and is only indicated on the basis of the child's health needs, rather than to alleviate the anxieties of carers or professionals.
Consent is always required before a child can have an HIV test. This consent must be both informed and freely given. Where a young person 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. Where children are considered to be too young or otherwise unable to understand the issues, consent must be obtained from a person with parental responsibility.
Under the concept of Gillick competence, older children may consent on their own behalf to medical treatment if they are considered to be of sufficient maturity and judgement to enable them to understand what is proposed. (Gillick competence is broader than Fraser competence; the Fraser guidelines relate specifically to competence for consenting to contraceptive treatment).
A child need not necessarily be of a specific age to be deemed Gillick competent to consent to HIV testing and treatment. But they must be appropriately informed about what they are being tested for. In practice, this can be challenging if the parent does not want to disclose their diagnosis to the child. Documented agreement of the child as well as the parent should be obtained. The Department of Health has produced guidance on this in ‘Consent: A guide for children and young people (2001). It must be remembered that the parents have rights too. Informing the child of the parent’s status without the parents consent will infringe the parent’s right to medical confidentiality and must be carefully justified. It is essential to work with parents to negotiate ways forward that do not isolate them but also ensure the children rights are upheld. Section four of Don’t forget the Children, offers examples of successful approaches to negotiate the successful testing of Gillick-competent children where the parent does not want to disclose their own HIV status.
Both parents and children should have access to culturally appropriate information and support to enable them to reach a decision.
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 well being 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.
Young people who are sexually active/sharing needles
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.
4. Rejection of Medical Advice / Testing / Non-engagement
Parents may refuse intervention to reduce the risk of vertical transmission. 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.
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 should always become involved where there is concern that an unborn child is likely to suffer Significant Harm. Such involvement can include convening a pre-birth child protection conference, and making the unborn child subject to a child protection plan, to protect the baby as soon as she/he is born.
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/child. 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.
HIV positive mothers routinely meet with the Obstetric team and the Sexual Health team as part of their routine care to discuss the management of the pregnancy, delivery and postnatal care.
If this is not accepted, then further efforts should be made to talk to her. This should be by the most appropriated professional, e.g. Obstetrician, Paediatrician, Sexual Health Consultant, GP, Midwife or HV.
These episodes of contacting the mother must be documented as they may be required as evidence at a later date. When contacting the mother it is important to explain why the meeting is required.
If after these two episodes of contacting the mother there is no response, then the following steps should be taken with the Adult HIV Team taking the lead (see hospital guidelines for templates):
- Letter sent to mother explaining the treatment plan to reduce the risk of transmission to her baby and inviting her to clinic. This letter will offer a 2 week reply period and copied to Obstetrics, Adult HIV team, Midwife, GP and Hospital Safeguarding Leads;
- Prior to the letter being sent it is important to establish what the mothers’ first language is and if she is able to read;
- If the offer is declined then a second letter will be sent, which will include a statement informing the mother that Children's Social Care will be contacted if she makes no return contact. Consideration needs to be given to hand delivering the letter;
- Involved staff to compile a chronology detailing involvement and all the attempts that have been made to engage the family, and submitted to Adult HIV team;
- Health to convene a professional meeting, inviting Children's Social Care to attend;
- Possible referral to Children's Social Care using the information from the professional meeting and chronology, sending a copy of the referral and chronology to the Hospital Legal Services Department;
- Strategy meeting. Hospital Legal Services to be invited;
- Maternity alert distributed by Lead Midwife for Child Protection.
Refusal of testing in a Child/Young Person
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-retro viral medication for the baby following the birth, or breastfeeding where safe alternatives are available.
Where a child is of sufficient age and understanding to be aware of all the issues and refuses to have an HIV test, this decision should be respected, but in the context of an on-going dialogue with the child in the event of their wanting the test at a later date.
Where a parent refuses permission for their child to be tested, this may be considered to be a child protection issue, if it denies the child access to suitable health care. The age and health of the child are important considerations. It may be that there are more pressing reasons for knowing the HIV status of vulnerable children under the age of one year and/or children who are unwell, than older children who are in good health. Each case should be considered on its own individual basis and every effort should be made to work in partnership with parents before considering legal action to override their wishes.
- Give a 6-12 month timescale of negotiation with parents, depending on the age and health of the child and the support needed by the parent(s). In the case of infants and symptomatic children, a test is required immediately. 6 months is felt acceptable if the child is too young for consent; asymptomatic non-sexually active young people - up to a year; and sexually active young people, with the possibility of onward transmission makes testing urgent;
- Consultant Paediatrician HIV lead sends a letter sent to parent(s) offering an appointment (using the letter template in Hospital guidelines). This will include a Frequently Asked Questions information sheet and copied to Sexual Health team, GP, HV and Hospital Safeguarding Leads;
- Prior to the letter being sent it is important to establish what the mothers’ first language is and if she is able to read;
- If the offer is declined then a second letter will be sent, which will include a statement informing the parent(s) that Children's Social Care will be contacted if they make no return contact. Consideration needs to be given to hand delivering the letter;
- Involved staff to compile a chronology detailing involvement and all the attempts that have been made to engage the family, and submit to involved Paediatrician;
- Health to convene a professional meeting, inviting Children's Social Care to attend;
- Possible referral to Children's Social Care using the information from the professional meeting and chronology, sending a copy of the referral to the Hospital Legal Services Department;
- Strategy meeting. Hospital legal services to be invited.
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. Monitoring and Treatment of Positive Children
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.
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 need help to understand the importance of regular medication and practical assistance in getting 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.
Parents need access to good quality information 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.
HIV status should normally only be disclosed with the informed consent of the person concerned. Where the child is infected, their consent to the sharing of information about their status must be sought if they are of sufficient age and understanding. Otherwise, consent should be from the parent or other person with parental responsibility. Consideration should only be given to disclosing an individual's HIV status where there is a clear 'need to know' in order to safeguard the child. Fears about infection risk do not constitute a legitimate reason for disclosing information about HIV status. If a child and/or her/his family are opposed to the disclosure of HIV status, they should only be overruled if a failure to do so would place the child at risk of significant harm and/or there is legal requirement to disclose.
Inadvertent disclosure of HIV status
All workers should take care that they do not inadvertently disclose a service user's HIV status during the course of a child protection investigation, e.g. a number of families will not have disclosed their HIV status to their GP. A worker unfamiliar with HIV work might not know this and might inadvertently disclose the client's HIV status to the GP as part of a routine check. Only where the HIV status is integral to the concerns raised should it be discussed.
Disclosure at Child Protection Conferences
There will be situations in which HIV status is not relevant to the matters to be decided at the Child Protection Conference. In other cases, it may be impossible to decide about concerns regarding a child without mentioning their medical needs associated with the HIV infection, although this may be discussed using alternative terminology for example, 'a medical degenerative condition'. It is good practice for all conference chairs to reiterate confidentiality issues at the outset. Remember that the informed consent of the infected person or their carer can alleviate difficulties around issues of confidentiality.
Disclosure to the child or young person
Disclosure to the child or young person is a very sensitive issue. Parents and carers may have strong views about when disclosure should take place. These views may not always fit with professionals' ideas about best practice. Each family needs to find the time and the way that is right for them. Culturally sensitive professional support should be offered to families to help them tackle this difficult task.
Disclosure to an affected child or young person
A child who is affected does not have a clear right to know information about the HIV status of another person, even though that person may be their parent or sibling. The right to confidentiality remains with the person who is HIV positive.
Disclosure to an infected child or young person
A child who is infected has a clear right to know information about their own medical situation but parents and carers may want to protect their child from some of the consequences of knowing (fear, concerns about their parents, whether to tell friends at school). Disclosure needs to be age appropriate, and the child needs to be able to understand what they are being told. They also need some understanding of wider issues, like prejudice and confidentiality, which affects the lives of people with HIV. A child or young person who does not know their status and is on combination therapy may have questions about their medication and hospital appointments. Disclosure can make sense of a situation that has become worrying. Decisions to disclose diagnosis should always be taken with other professionals and the family.
Refusal to allow disclosure
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.
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.
If the child is a young adult over 16 or is under 16 but Fraser 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 Fraser competent, it is the parent or guardian who has the right to make decisions about whether disclosure is made.
A delicate balance needs to be struck between considering the wishes of the parent or carer and the rights and emotional well being of the young person and if disclosure is considered to be necessary, legal advice should be sought before such disclosure takes place.
Further information can be found at CHIVA.org.