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The INSPIRE Studies

6 WHO studies to retain HIV+ mothers on treatment

Chikonde, from Malawi, tested positive while pregnant at the age of 18, but then stayed away from the health centre for fear her husband would divorce her. For years she lived a double life as she built her family, unable to tell her husband. One of her children died. Her eldest daughter was fequently sick.

This only changed when she met Patricia Kapesi, an "Expert Mother" who had overcome her own story of tragedy to give peer support to other women who test HIV+ during pregnancy. Patricia helped Chikonde and her HIV + daughter to start life-saving treatment.

These films weave the moving stories of women who took part in one of the largest ever research projects evaluating different ideas to retain HIV positive mothers on treatment. INSPIRE encompassed six WHO backed studies, recruiting 5100 women in Malawi, Nigeria and Zimbabwe. 

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The interventions evaluated included: Continuous Quality Improvement of Health centres; integrated HIV+ mother/infant clinics; SMS messaging; enhanced counselling; health centre based peer support groups; and individual peer support by health centre based "Mentor Mothers" and community based "Expert Mothers." Individual peer support gave the best results with significant improvements in retention in both Malawi and Nigeria.

The Story of INSPIRE (2017) – 7 Mins

A short overview, concentrating on the stories of the Expert and Mentor mothers and the studies in Malawi and Nigeria which they participated in.

The Story of INSPIRE (2017) – 20 Mins

This film weaves together stories from all six INSPIRE studies to summarize the evidence as to what works and what does not work to improve retention in PMTCT programs.  Peer support by well trained Expert and Mentor Mothers was found to be most effective.

INSPIRE: Expert and mentor mothers – why they are effective – 15 Mins

The evidence provided by INSPIRE studies that peer support by HIV+ mothers works, making a significant improvment to retention rates in PMTCT programs. This film weaves the stories of Mentor and Expert mothers, their clients, along with evidence provided by researchers.

Retaining mothers on treatment: workshop film 1 – the importance of retention – 3 mins

This film looks at why it is so important for mothers who test HIV positive to be retained on treatment throughout pregnancy, birth and breatfeeding, so their babies can be born free of the virus. It shows evidence to suggest official retention figures are too optimistic.

Retaining mothers on treatment: workshop film 2 – why mothers drop out of treatment – 3 mins

This film uses the voices of mothers living with HIV and experienced Peer Supporters to explore the many reasons women drop out of treatment. These range from pill burden to religious belief.  But difficulty disclosing to male partners is the most common.

Retaining mothers on treatment: workshop film 3 – six interventions to improve retention – 4 mins

This film summarises interventions from INSPIRE and why they were chosen for evaluation. The film is designed to spark a discussion about possible ideas for interventions to improve retention.

Retaining mothers on treatment: workshop film 4 – results of six interventions to improve retention – 5 mins

This film briefly gives the results of the studies carried out to evaluate the six interventions. Most of these were Cluster Randomised Trials, and so provide good evidence. Researchers give explanations as to why some interventions had more of an impact on retention than others.