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1.11 Blood Borne Viruses - H.I.V, Hepatitis B and C

SCOPE OF THIS CHAPTER

This chapter details the process needed to plan and support children infected and/or affected by Hepatitis or HIV or those who may be infected including Looked After Children. It deals with consent and confidentiality issues and support systems available.

RELEVANT LEGISLATION AND GUIDANCE

Children Act 1989

Working Together to Safeguard Children 2015

Children In Need and Blood Borne Viruses: H.I.V and Hepatitis DOH GUIDANCE 2004

Practice Guidance: Supporting Young People with HIV Testing and Prevention

AMENDMENT

In January 2017, a link was added to Practice Guidance: Supporting Young People with HIV Testing and Prevention in the Relevant Legislation and Guidance section. This practice guidance is for professionals who do not provide HIV testing, treatment or advice as part of their day-to-day work. It is primarily intended for those working outside health settings, such as social workers or voluntary sector practitioners.


Contents

  1. Introduction
  2. Practice Guidance
  3. Testing for Blood-Borne Viruses
  4. Service Provision


1. Introduction

HIV in children in the UK has affected primarily haemophiliac child and those borne to injecting drug users. With regards to Hepatitis B the numbers are very small with cases coming mainly from South East Asia. Hepatitis C remains rare in the under 16 age group but does increase in people of drug using age.

Despite this low prevalence, Children's Social Care Service recognises the need to plan carefully for the care of children infected and/or affected by Hepatitis or HIV. The Department must also exercise its shared Parental Responsibility where the Local Authority looks after a child, in such circumstances.

As each case will differ with its own circumstances and complexities, there should be a Child and Family Assessment and appropriate plans agreed to meet identified needs. Many of the families and children affected by HIV are from African communities, and it is particularly important that cultural considerations and views are fully appreciated and taken into account.

The right of the child to be protected from discrimination, stigma and fear is essential.

Children should be as fully involved in the discussions and decision making as their age and understanding permits.


2. Practice Guidance

Confidentiality and Consent

The consequences of the breach of confidentiality may be particularly serious for a child and family because of the stigma that may be associated with infection. Departmental staff need to ensure confidentiality is safeguarded.

As well as other sensitive medical issues, information about the Hepatitis/HIV status of a child should only be disclosed when it is in the best interests of the child and on a need to know basis. This includes disclosure within the Department and in teams/units. It may be necessary to pass on information about the Hepatitis/HIV status of the child to another professional, carer or agency in order to plan the child's care. This issue should be addressed as part of the Child and Family Assessment, and discussed with the child and/or parent. Staff should consult their line manager before any disclosure is made.

Disclosure should only take place with the express consent of the child and/or parent/person with parental responsibility. Before disclosing information about blood-borne viruses to any agency or individual, staff should be satisfied that all of the following criteria are fulfilled:

  • The child and/or the child's parents have given their written consent to the transfer of information;
  • The disclosure of the information would be in the best interests of the child and would benefit the welfare of the family in a specific way, or the disclosure would protect an individual at risk of infection;
  • The person(s)/agencies receiving the information are aware of its confidential nature and are able to maintain the confidentiality of the information provided.

The child's consent to disclosure of information about their blood-borne virus should be sought wherever the child is of an age and understanding to provide it. Parental consent should be sought where the child is not capable of giving informed consent. Where the Local Authority has parental responsibility, the birth parents and any other person with parental responsibility should always be consulted, unless the Service Manager has decided that such consultation would not be in the best interest of the child. Staff will need to liaise closely with other agencies to ensure that their procedures for maintaining confidentiality are appropriate, so that they can advise children and parents.

Staff should provide full information in terms which the recipient can understand describing both the advantages and disadvantages. Information about the suggested need for disclosure should be non-directive and sensitive to the child's family's ethnic background, culture and language. Information to discuss includes:

  • What are the specific advantages and disadvantages for the child and/or family which may result from the disclosure;
  • Who will have access to the information if disclosed;
  • What confidentiality procedures are in place to protect the information before, during and after transfer.

If consent is withheld, the decision of the child and parents should be followed wherever possible. If the child opposes disclosure, the parents' consent should generally override the child's wishes only if the child is not of an age and understanding to consent. If there is concern that the welfare of the child and/or family is diminished because of their objection to disclosure, further discussions with the family may be appropriate. If the child and family are still opposed to disclosure, their wishes should generally only be overruled if any of the following applies:

  • The child is at risk of Significant Harm if disclosure is not made;
  • There is a legal requirement for the information to be disclosed (e.g. Court proceedings);
  • Public interest requires disclosure in order to prevent others being put at risk.

(This decision should only be taken by a Service Manager or more senior, after taking legal advice).

If it is considered necessary to overrule the wishes of the family, they should be told to whom the information is to be disclosed and the reasons for overruling their wishes, should be given in writing.

Case files should not bear any external marking on the cover to indicate that Hepatitis/HIV is a factor in the case. Within residential units no reference to Hepatitis/HIV should be made in diaries, day books or logs. Information on the Known Persons Index should not indicate Hepatitis/HIV status. Recording of a child’s Hepatitis/HIV status should be contained within the Child and Family Assessment, or for a looked after child, contained within their health assessment records.


3. Testing for Blood-Borne Viruses

Testing should not be undertaken either routinely or without careful consideration of where it is justified and what the implications of a positive test result might be for the child concerned. Where the child is Looked After, the Team Manager should arrange a preliminary discussion with the Medical Adviser and an independent person or advocate should also be available for the child to ensure that the child's wishes have been appropriately ascertained if old enough to be consulted. In any decision whether or not to offer a test, the welfare of the child must be the paramount consideration.

In relation to Children Looked After, it may not be appropriate for the case review to discuss this, because of the sensitive nature of the information. A separate planning meeting should be convened.

If exposure to infection has only recently occurred, it may be necessary to carry out a further test as antibodies may take up to 3-6 months to develop. Specialised tests will be used to determine whether the person is carrying the particular virus for which the test has been carried out. Tests for antibodies in young children under the age of 18 months will not necessarily indicate whether the child has been infected, as the antibodies may have been acquired from their mother during pregnancy.

Suggested indicators for considering testing

Where a child may have been exposed to HIV, Hepatitis B or Hepatitis C, it should be considered whether it would be in the child's best interest to be tested. Testing enables the child to receive appropriate medical attention if needed. The table below summarises suggested indicators for considering testing for HIV, Hepatitis B or Hepatitis C.

Suggested indicators for considering need for testing

HIV Hepatitis B Hepatitis C
  • A child born to an infected mother, or a mother considered to be at risk of having HIV - unless it is already established that the child is not infected.
  • A child born to an infected mother, or a mother considered to be at risk of having Hepatitis B - unless it is already established that the child is not infected.
  • A child born to an infected mother, or a mother considered to be at risk of having Hepatitis C - unless it is already established that the child is not infected.
  • A child who may have shared contaminated needles, syringes and other equipment while injecting drugs, or who has been injured by such a needle due to somebody else’s drug use.
  • A child who may have shared contaminated needles, syringes and other equipment while injecting drugs, or who has been injured by such a needle due to somebody else’s drug use.
  • A child who may have shared contaminated needles, syringes and other equipment while injecting drugs, or who has been injured by such a needle due to somebody else’s drug use.
  • A child who may have had vaginal, anal or orogenital sex with an infected person.
  • A child who may have had vaginal, anal or orogenital sex with an infected person.
  • A child who has come from a country in which Hepatitis C is highly prevalent, e.g. Egypt, some other part s of Africa, South East Asia and Southern Europe.
  • A child who has come from a country in which HIV is highly prevalent, e.g. sub-Saharan Africa, North Africa, the Middle East, South and South East Asia and the Caribbean.
  • A child who has come from a country in which Hepatitis B is highly prevalent, e.g. South east Asia, Indian sub-continent, sub-Saharan Africa, South America, parts of the Middle East and some countries of Eastern Europe.
  • A child with symptoms of acute Hepatitis C such as jaundice2.
  • A child with clinical symptoms suggestive of HIV infection (e.g. weight loss and oral thrush - specialist advice is necessary).
  • A child with symptoms of acute Hepatitis C such as jaundice2.
 

There is still stigma and fear associated with HIV, and to a lesser extent with Hepatitis B and C. There will therefore always be concern that disclosure of the child's status will lead to prejudice, rejection and even harassment by relatives, friends, neighbours and peers. For some cultures, a positive test can lead to a woman and her child/children being ostracised from the rest of their families. The process of having the test may be stressful in itself, whether or not the result is positive.

Consent to Testing

Children under 16

Children under the age of 16 may give consent to or refuse testing, examination and treatment, if they are capable of understanding the nature and implications of the test. The child should be given information and advice appropriate to their age and understanding. If the child lacks capacity to consent, or has capacity and refuses and the parents are also opposed to testing, there is case law (Re C (HIV test) (1999)) that the courts may overrule parental opposition if testing is regarded as being in the child's best interest. Again, in such situations the Children's Service Manager should seek legal advice.

Children aged 16 or over

A young person aged 16 or over may give their own consent to medical tests, examination or treatment. To help them reach a decision, young people should be given information and advice so that the nature of the test and the implications of a positive test are well understood. However, if a child aged 16 or over lacks capacity to take the decision, consent may be given by a person with Parental Responsibility. If the child does have capacity, but refuses, the refusal can be overridden by either a person with Parental Responsibility or the courts. In such circumstances if the outcome may have serious implications for the child, it may be appropriate to seek a ruling from the court rather than proceeding on the basis of consent from the person with Parental Responsibility. In such situations the Children's Service Manager should seek legal advice.

Parental responsibility

Parental consent should be sought where the child is not capable of giving informed consent. Whether or not the Local Authority has full Parental Responsibility or shares this with parents, the birth parents and any other person with Parental Responsibility should always be consulted, unless Children's Service Manager has decided that such consultation would not be in the best interests of the child. When a child is not in the care of the Local Authority and the parents refuse consent to testing, the Department needs to consider applying for an appropriate court order (e.g. a Section 8 specific issue order) to make the case for testing, if after an Assessment of Need it is concluded it would be in the child's best interests. Legal advice should be sought.

Information about the suggested need for testing should be non-directive and sensitive to the child's and family's ethnic background, culture and language. Similarly any sensitive issues relating to the sexuality of the child will need to be addressed.


4. Service Provision

All child care services should be provided where parents and/or children are infected and/or affected by Hepatitis B/C or HIV on the same basis as for any other child, i.e. on the basis of assessed need. There will clearly be a variety of factors which arise in particular service areas.

Child Protection

Infection by Hepatitis or HIV is not in itself a reason for considering child protection procedures and it is important that staff and those who may need services are aware of this. Some families in high risk groups, e.g. drug users may fear their status will trigger Child Protection services and prevent them accessing help with HIV related problems.

Similarly, behaviour that is deemed high risk in relation to HIV or Hepatitis infections such as injecting drug use, unsafe sex, is not on its own sufficient for Child Protection procedures to be invoked. These factors need to be taken into account as part of a Child and Family Assessment.

In any ICPC or RCPC, discussion of a child's or parents Hepatitis or HIV status should only take place if absolutely necessary for a full consideration of the need to protect the child. Where such discussion does take place, it should not distract the conference from its purpose of considering the full range of protection issues.

Family Support/Children’s Centres

Standard hygiene precautions should always be followed in all settings providing day care and other services for children. This is to ensure that children are not unnecessarily exposed to risk of infection, including HIV and Hepatitis.

Where it is in the child's best interests and with informed consent, the manager and key workers should be informed of the HIV or Hepatitis status of the child. The manager must decide which group of key staff should be informed.

Young children with HIV are particularly vulnerable to childhood illnesses such as measles or chicken pox. Children’s centres should have policies in place to inform all parents when there is an outbreak of an infectious disease, to enable parents/carers to decide how best to protect their child's health without breaching confidentiality.

Where services are provided in the family home by home care assistants, and where this involves intimate care, the individual staff should be informed of any HIV or Hepatitis status of the child and standard hygiene precautions applied.

Foster Care

The principles to be considered when a child with Hepatitis or HIV is to be fostered should be the same as those for any other child. There should be a medical examination and written Health Assessment as part of the Placement / Care Plan. As part of the foster placement agreement with foster carers there is a duty to pass on any relevant information about the child's state of health and need for health care. The carers should be advised about the risk of infection, precautions to avoid the transmission of infection, the protection offered by immunisation (for Hepatitis B) and the implications for the child and health care. Foster carers should be assisted in obtaining immunisation against Hepatitis B, if a risk assessment warrants it. Foster carers looking after a child with Hepatitis B are included in the recommendations of immunisation for close household contacts of a case of carrier of Hepatitis B.

Where a child is not infected with Hepatitis or HIV, but has been affected by this in their birth family, it may be in the child's best interests for the foster carers to be given full information about the child's background in order to promote the child's welfare.

Adoption

Similar procedures should be followed in relation to prospective adoptive parents. There is a duty to provide information about the health and development of children proposed for adoption.

Testing for Hepatitis or HIV prior to adoption is not a routine practice and the indicators outlined in Section 4 will apply.

Many children available for inter-country adoption have been abandoned or placed for adoption by parents who provide little background or medical information. Prospective adopters should be advised to establish which medical conditions are endemic in the child's country of origin and to have the necessary immunisation before travelling to pick up the child.

Prospective adopters should be made aware than the HIV and Hepatitis tests in infants may give a misleading result. For example, infants with HIV regarding results may actually be developing the antibodies and could become HIV positive later. Other infants with positive tests may be carrying maternal antibodies, which will naturally decline within the first year of life. The accuracy of tests performed in some countries from which children may be adopted may be questionable and give rise to a false sense of security. Such issues should be discussed with the Medical Adviser.

Where a family is adopting a child known to be infected with HIV/Hepatitis a specific plan of training, care and on-going support which takes account of the issues needs to be drawn up.

Where a child is not HIV/Hepatitis positive, but the virus is present within the birth family, it is likely to be in the child's best interests for the adoptive parents to be given full information about the child's background to promote the child's welfare. The processes in relation to disclosure outlined in Section 3.1 apply.

Residential Care

Young people Looked After who are engaging in risk taking behaviour and/or are vulnerable to exploitation may be at risk of HIV or Hepatitis infection, e.g. engaging in unsafe sexual activity, injecting drug use or involvement in sexual exploitation. Unit managers should familiarise themselves with issues of confidentiality, testing, health education, HIV and Hepatitis awareness and hygiene procedures, and ensure their staff receive appropriate training.

Where a young person infected with HIV/Hepatitis becomes resident in an establishment, a health assessment should be done which is incorporated into the placement/care plan. Where risk taking behaviour is identified, this should be included in a risk assessment.

Whatever the advice given by staff to a young person, there may be situations where a resident with HIV or Hepatitis infection behaves in a manner which puts other residents at risk (e.g. unprotected sex, needle sharing). The rights of that young person with HIV or Hepatitis infection in relation to confidentiality may have to be balanced against the interests of other residents (to be protected from reckless behaviour). However staff should in most instances be able to communicate the risks associated with specific risk taking behaviour without disclosing an individual’s HIV or Hepatitis status.

This should be fully discussed with the young person, those with Parental Responsibility and advocate/independent person where appropriate. Where unmanageable risks remain, disclosure to those at risk should be considered. 

End