Don’t Forget the Children Untested children of mothers with HIV Wendy Majewska Courtyard Clinic St...

Don’t Forget the ChildrenUntested children of mothers with HIV

Wendy MajewskaCourtyard Clinic St George’s NHS Trust

‘Don’t Forget the Children’

MISSION STATEMENT

The HIV status of all the children of known

HIV-positive adults in the UK should be known as a matter of clinical urgency

BHIVA/CHIVA/BASHH consensus 2009

Current situation

Undiagnosed HIV is a well-recognised problem in the UK among adults and is associated with late presentation and increased morbidity and mortality. It is less well understood in children


Current situation

The children of HIV-positive adults attending HIV services are a readily accessible group of children at risk of HIV infection.


Current situation

There is a current lack of robust protocols in place to ensure that children at risk of HIV infection are identified and tested.


Current situation

Undiagnosed HIV infection in children is a significant cause of potentially avoidable morbidity and mortality.


Current situation

Children of HIV-positive parents in the UK who were born abroad are those most at risk of undiagnosed paediatric HIV infection as they are less likely to have had antenatal HIV testing and treatment.


Current situation

HIV testing of children is clearly in the medical interests of the child and, in the majority of cases, testing the children of HIV-positive parents is straightforward. However, if the parents consistently refuse, thereby putting the child at risk of having undiagnosed HIV infection, it may become a child-protection issue and need to involve the courts.


Testing children of adults attending HIV Clinics Specific issues with testing children

disclosure of parents HIV status safeguarding children when parents refuse

disclosure guilt/stigma

Little data on number of untested children in UK

Audit Jan – June 2009

Aim Identify number of women attending Courtyard

Clinic during this period Identify how many of these women had children How many of these children had been tested for

HIV

Methods

Case notes review of women attending HIV services at Courtyard Clinic from January to June 2009

Information gathered from HIV case notes, obstetric and paediatric records and face to face consultations

Collected on central database

Results

461 women attended January to June 2009

461/461 (100%) case notes reviewed 364/461 (79%) had children

364 mothers had 828 children

Results

516/828 (62%) had been tested for HIV 455/516 (88%) had been tested HIV negative 61/516 (12%) had been tested HIV positive

663/838 (80%) lived in the UK 481/663 (75%) had been tested for HIV

165/828 (20%) lived outside of the UK 35/165 (20%) had been tested for HIV

HIV status of children

312182

130

455424

3161 57 4

0%10%20%30%40%50%60%70%80%90%

100%

Overall UK Abroad

Positive

Negative

Untested

Untested Children ≤ 18 years 61/312 (16%)

untested children were aged ≤18 years

61 children were born to 43 mothers

24/61 (40%) of these lived in the UK

24

37

61251

Untested >18y

Untested≤18UKAbroad

Ethnicity of mothers

All mothers (364)

291

21

3319 Black African

Black CaribbeanWhite British

Other

Mothers (43) with untested children aged ≤ 18 years

39

1 12

Reason for not testing child ≤ 18 Child not perceived to be at risk by mother Lost contact Child declined to be tested Unknown

Conclusion

24/828 (3%) untested children aged ≤ 18 years live in the UK

Urgent and on-going work needs to continue

Priority needs to be given to working with parents to facilitate testing

Recommendations (summary)

Protocols and procedures must be in place to ensure all children of HIV-positive parents are tested

A multi-sector, multidisciplinary team needs to be identified and be responsible for setting up protocols and managing cases if and when they arise

Pathways need to be developedBHIVA/CHIVA/BASHH consensus 2009


All HIV units will need to perform a ‘look back’ exercise to establish the HIV status of any children whose HIV-positive parents attend that service

All new HIV-positive patients attending adult HIV services should have any children identified, tested and the information clearly documented



Joint protocols should be in place between health and social care

All healthcare professionals have a duty to ensure the safety of children and ensure safeguarding issues are addressed

Follow-up support should be provided for all children and parents to help with disclosure or adjustment issues


Thank You

All staff involved in this project in particular Katia Prime, Rosemary Handyside, Shalini Andrews, Helen Webb, Simone Ghosh and the multi-disciplinary team at St George’s NHS Healthcare Trust.

Don’t Forget the Children Untested children of mothers with HIV Wendy Majewska Courtyard Clinic St...

Documents

Transcript of Don’t Forget the Children Untested children of mothers with HIV Wendy Majewska Courtyard Clinic St...