Experience and outcome of pregnancy among women living with HIV in the UK: impact of ethnicity and African region of origin

Lead Research Organisation: City University London
Department Name: School of Health Sciences

Abstract

In recent years there has been a steady increase in the number of pregnant women with HIV in the UK, the majority (80%) born in Sub-Saharan Africa. This will be the first study to explore the experience of pregnant African women living with HIV in the UK.
Interventions, including the use of anti-HIV medication, have dramatically reduced the transmission of HIV from mother to baby. During the first part of the study, existing UK databases on HIV and pregnancy will be analysed to examine the impact of African ethnicity and region of origin on the success of these interventions and return for HIV care after delivery. So far, the data have only been analysed according to ethnicity. Given the diversity of African cultures, grouping countries into regions may be more appropriate.
The second part of the study will be conducted in three London HIV clinics. Approximately forty pregnant African women with HIV will be interviewed to explore their experience of pregnancy and attitudes towards medical care.
This project will provide an insight into HIV-positive African women‘s experience of pregnancy in the UK and help healthcare providers to develop appropriate and supportive medical services for this group of women.

Technical Summary

In recent years there has been a steady increase in the number of pregnant women with HIV living in the UK, rising from 80 in 1990 to 1300 in 2006. This trend is expected to continue. The majority (80%) of these women were born in sub-Saharan Africa. The overall aim of this proposal is to examine whether ethnicity and African region of origin have an impact on the outcome and experience of pregnancy among HIV-positive women living in the UK. To pursue this aim, we propose a collaboration between two universities (City University London; University College London) and three hospital trusts (Homerton; Newham; Guy‘s and St Thomas‘). We will undertake the research in two phases using quantitative and qualitative research methods.

In the first phase, the applicant (Shema Tariq) will analyse epidemiological data from two HIV pregnancy databases; (i) the National Study of HIV in Pregnancy and Childhood surveillance database with data on 8500 HIV positive pregnant women in the UK; (ii) the European Collaborative Study prospective cohort database with data on 8000 mother-child pairs in 10 European countries. The objective of the first phase is to examine the relationship between ethnicity/African region of origin and clinical outcomes including maternal HIV viral load at delivery, pregnancy outcome and infant HIV status. A further objective will be to ascertain the extent to which missing data introduce bias in these HIV-and-pregnancy databases.

In the second phase, the applicant will conduct qualitative interviews with 30 HIV positive pregnant black African women attending antenatal clinics in the collaborating hospitals. The objective of the second phase is to examine, for the first time in the UK, the experience of pregnancy and ante-natal care among this group and to look at the impact of region of origin on variables such as attitudes towards HAART, use of alternative therapies and models of healing.

This collaborative research project will provide an int into HIV positive African women‘s experience of pregnancy in the UK and allow health care providers and policy makers to develop appropriate and supportive antenatal services for this group of women. This intellectually challenging and multidisciplinary project will also provide training and a solid grounding in both quantitative and qualitative research methods for the applicant.
 
Guideline Title Guidelines for the management of HIV infection in pregnant women 2012
Description Citation in NICE approved BHIVA guidelines on management of HIV in pregnancy
Geographic Reach National 
Policy Influence Type Citation in clinical guidelines
 
Description BHIVA Research Award 2010
Amount £4,500 (GBP)
Organisation British HIV Association (BHIVA) 
Sector Charity/Non Profit
Country United Kingdom
Start 01/2011 
End 06/2011
 
Title Joint NSHPC/SOPHID 
Description Colleagues at the HPA have matched women from the NSHPC dataset to the national SOPHID dataset. Myself and a colleague at the ICH have created a joint dataset of matched women which contains information on attendance for HIV care in the UK before and after pregnancy. 
Type Of Material Database/Collection of Data/Biological Samples 
Provided To Others? No  
Impact Analysis is ongoing. Work has recently been submitted for presentation and will be written up for publication. 
 
Description Homerton University Hospital 
Organisation Homerton University Hospital NHS Foundation Trust
Department Department of Sexual Health
Country United Kingdom 
Sector Hospitals 
PI Contribution I have interviewed a number of participants recruited from this site.
Collaborator Contribution Provided potential participants to be recruited.
Impact This is a collaboration with clinicians. Data have been collected and currently being anlaysed.
Start Year 2010
 
Description Institute of Child Health 
Organisation University College London
Department Institute of Child Health
Country United Kingdom 
Sector Academic/University 
PI Contribution I am collaborating with the Institute of Child Health in detalied analysis of the National Study of HIV in Pregnancy an Childhood (NSHPC). In collaboration with the ICH I have been responsible for the analysis of the NSHPC and ECS databases looking at non-AZT vs AZT HAART. I am also currently undertaking an analysis of NSHPC with a particualr focus on migration, looking specifically at the impact of ethnicity and length of stay in the UK. This work will also include the creation of an imputed dataset.
Collaborator Contribution Access to national surveiilance databases, peer support when developing analysis, supervision and training, development of teaching skills
Impact 1) Poster Presentation: CROI, San Francisco, Feb 2010 Tariq S, Thorne C, Townsend C, Duong T, Elford J, Tookey P "Pregnancy Outcomes in HIV-Infected Women Using Non-Zidovudine HAART in Europe: 2000-2009 (awarded a young investigators award)
Start Year 2009
 
Description Newham 
Organisation Barts Health NHS Trust
Country United Kingdom 
Sector Public 
PI Contribution I have interviewed a number of participants recruited from this site.
Collaborator Contribution They have provided potential participants to be recruited.
Impact This is a collaboration with clinicians. Data have been collected and are being analysed.
Start Year 2010
 
Description St Thomas' 
Organisation Guy's and St Thomas' NHS Foundation Trust
Department Sexual Health Services
Country United Kingdom 
Sector Hospitals 
PI Contribution I have interviewd a number of participants recruite from this site.
Collaborator Contribution Provided potential participants to be recruited.
Impact This is a collaboration with clinicians. Data have been collected and are currently being analysed.
Start Year 2010
 
Description Conference presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Paper Presentation
Geographic Reach National
Primary Audience Health professionals
Results and Impact Tariq S, Elford J, Cortina-Borja M, Tookey P. The association between ethnicity and late presentation to antenatal care among pregnant women living with HIV in the UK and Ireland. 18th Annual Conference of BHIVA, Birmingham, UK, selected for oral presentation at research poster session.

Not known
Year(s) Of Engagement Activity 2012
 
Description Conference presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Poster Presentation
Geographic Reach International
Primary Audience Health professionals
Results and Impact Tariq S, Elford J, Cortina-Borja M, French C, Tookey P. Uptake of antiretroviral therapy in pregnancy is reduced in women from West Africa living in the UK & Ireland. 6th IAS Conference on HIV pathogenesis, treatment and prevention, Rome, Italy, abstract TUPE283, 2011.

Not known
Year(s) Of Engagement Activity 2011
 
Description Conference presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Poster Presentation
Geographic Reach International
Primary Audience Health professionals
Results and Impact Tariq S, Chau C, French C E, Elford J, Cortina-Borja M, Brown A, Delpech V, Tookey PA. Loss to follow-up after pregnancy among women living with HIV in England, Wales and Northern Ireland: the role of African ethnicity. XIX International AIDS Conference, Washington DC, USA, abstract 1370, 2012.

Not known
Year(s) Of Engagement Activity 2012
 
Description Conference presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Paper Presentation
Geographic Reach International
Primary Audience Health professionals
Results and Impact Tariq S, Elford J, Cortina-Borja M, Tookey P. The impact of ethnicity on presentation to antenatal care among pregnant women living with HIV in the UK and Ireland. 19th International AIDS Impact Conference, abstract 90, 2011.

Invited to submit manuscript which has now been published in AIDS Care
Year(s) Of Engagement Activity 2011
 
Description Conference presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Paper Presentation
Geographic Reach National
Primary Audience Health professionals
Results and Impact 19th Annual Conference of BHIVA, April 2013, Manchester. Loss to follow-up after pregnancy among women living with HIV in England, Wales and Northern Ireland: the role of African ethnicity. . S, Chau C, French C E, Elford J, Cortina-Borja M, Brown A, Delpech V, Tookey P A.

This presentation was awarded the 2013 Margaret Johnson Prize for best oral research presentation at 19th BHIVA Spring Meeting, 2013. It also received widespread publicity via social media.
Year(s) Of Engagement Activity 2013
URL http://www.bhiva.org/130418ShemaTariq.aspx
 
Description Conference presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Paper Presentation
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Tariq S, Argenti-Pillen A, Elford J, Tookey P. Sameness and difference: results from a mixed methods study exploring pregnancy in migrant African women living with HIV in the UK. 8th Mixed Methods International Conference, Leeds, UK, 2012.

Not known
Year(s) Of Engagement Activity 2012
 
Description Conference presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Poster Presentation
Geographic Reach International
Primary Audience Health professionals
Results and Impact Tariq S, Tookey P, Elford J, Argenti-Pillen A. 'I just accept it, but in my heart it pains me because as a woman you have to breastfeed your baby.' The impact of infant feeding decisions on African women living with HIV in London. XIX International AIDS Conference, Washington DC, USA, abstract 6632, 2012.

This work has prompted one UK centre to look at infant feeding more closely in their patient population and assess the economic impact of providing ART and regular monitoring in greater numbers of women who may wish to breastfeed.
Year(s) Of Engagement Activity 2012
 
Description Conference presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Poster Presentation
Geographic Reach National
Primary Audience Health professionals
Results and Impact Tariq S, Cortina-Borja M, Elford J, Tookey P. Among migrant African women, increased duration of stay in the UK or Ireland reduces the risk of detectable maternal HIV viral load at delivery. 17th Annual Conference of BHIVA, Bournemouth, UK, abstract P160, 2011.

Not known
Year(s) Of Engagement Activity 2011
 
Description Patient forum 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Local
Primary Audience Participants in your research and patient groups
Results and Impact 20 members of staff and patients at Homerton Hospital (a recruitment site for this research) attended a presentation and discussion based on some results from this project on infant feeding decisions in HIV.

Staff said they were more likely to explore this with patients. Patients stated that they felt more confident to raise these issues with staff.
Year(s) Of Engagement Activity 2012
 
Description Patient workshops 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation Workshop Facilitator
Geographic Reach Regional
Primary Audience Participants in your research and patient groups
Results and Impact I have facilitated a number of workshops at Body & Soul (HIV charity) based on findings from my research. Themes have included how to communicate better with healthcare professionals, the meaning of HIV blood test results, ART, and pregnancy and HIV.

Workshops have always prompted extensive discussion and have been rated highly by attendees.
Year(s) Of Engagement Activity 2010,2011,2012
 
Description Poster presentation at local research day 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Poster Presentation
Geographic Reach Local
Primary Audience Health professionals
Results and Impact Poster presentation on overall study design and aims at a research day at Newham General Hospital.

Not known
Year(s) Of Engagement Activity 2011
 
Description Presentation at collaborating hospital 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Local
Primary Audience Health professionals
Results and Impact 50 members of multidisclinary team at the GUM/HIV department at Guys and St Thomas' NHS foundation trust attended my presentation on the methods and snapshot of results of the study.

Members of the audience stated that this would change their approach to management of patients. One clinician asked to borrow slides to cite in her own talks.
Year(s) Of Engagement Activity 2012
 
Description Presentation at collaborating hospital 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Local
Primary Audience Health professionals
Results and Impact 50 members of multidisclinary team in GUM/HIV department at Barts health NHS Trust attended a 45 minute presentation on methods and main study findings.

Numerous nurses expressed interest in findings in terms of supporting their patients.
Year(s) Of Engagement Activity 2013