NESTOR study
Research type
Research Study
Full title
iNvEStigating The pregnancy and pOst-paRtum health experience of women living with HIV: The NESTOR Study
IRAS ID
290413
Contact name
Julia Greig
Contact email
Sponsor organisation
Sheffield Teaching Hospitals NHS FT
Duration of Study in the UK
0 years, 5 months, 30 days
Research summary
Research Summary:
Good clinical care and antiviral medicines are very effective at preventing HIV infection passing from pregnant women to their babies and maintaining the new mothers’ health. However, the period following pregnancy can be a vulnerable time for these women, with studies demonstrating poor adherence to therapy and women being lost to clinical follow up. A growing body of work from low and middle income settings, is exploring the psychosocial and social experience of these women, but the issue remains relatively un-investigated in the UK.
A review of the Sheffield Teaching Hospitals’ HIV service in 2011 identified that women in the period following pregnancy had problems adhering to HIV treatment, missed appointments and reported high rates of depression and social problems.
We wish to measure and understand the psychosocial and health experience of women living with HIV and how these impact on engagement with HIV care.
To do this we will conduct structured interviews with women living with HIV who receive HIV care in STHNFT and use qualitative research methods to draw out common themes of their experiences.Lay summary of study results: iNvEStigating The pregnancy and pOst-paRtum health experience of women living with HIV: The NESTOR Study. Plain language summary
Introduction: Women living with HIV often find being pregnant and looking after a new born baby can be stressful. It can be difficult to come to routine HIV clinic appointments and this can cause problems for their health. This study aimed to explore the health experiences of these women.
Methods: The NESTOR (iNvESTigating the pregnancy and pOst-paRtum health experience of women living with HIV) study was a UK based study that interviewed women who had attended an HIV service while they were pregnant. Interviews were conducted via telephone or video call. Interviews were recorded.
Results: 11 women were interviewed. Three main themes were identified. The first was 'infant feeding decisions'. Women discussed the difficulty they had in deciding whether to bottle feed or breast feed their babies. They felt sad that they might not be doing the best for their baby, if they choose to bottle feed. They were also concerned that friends and relatives would ask why they were bottle feeding. The second theme was 'managing the risk of mother to child transmission'. Women discussed how worried they were about the risk of passing HIV on to their babies. It was often very stressful waiting for the final blood test to confirm the baby did not have HIV. The third theme was 'managing the knowledge of their HIV status'. Women talked about the stigma associated with living with HIV and how hard it could be to go to clinic appointments.
These themes offer detailed insights into the psychological and emotional challenges these women had experienced. The women also found that practical support from doctors and nurses in both HIV and maternity services, had helped them to manage these challenges.
Discussion: There have been life-changing developments in the treatment and care for people living with HIV. However, even in the U = U (undetectable = untransmittable) era, traditional concerns about breastfeeding, risk of transmission to the infant and stigma, continue to shape the care of women during pregnancy and in the first months with a new baby. As these impact on their emotional and psychological wellbeing, support in these areas needs to be prioritised.REC name
Yorkshire & The Humber - South Yorkshire Research Ethics Committee
REC reference
20/YH/0329
Date of REC Opinion
7 Jan 2021
REC opinion
Further Information Favourable Opinion