Eliminating Paediatric AIDS in Zimbabwe Project Do mother support groups increase retention in PMTCT programmes? Preliminary results of an 'INSPIRE' randomised controlled trial in Zimbabwe Dr Geoff Foster1,2, Dr Abigail Kangwende3, Dr Talent Maphosa1, Dr Angela Mushavi1, Prof Simbarashe Rusakaniko4, Tonderai Sengai2, Bridget Shumba2, Pemberai Zambezi2

Study Objective To test whether mother support groups based at health facilities increase retention of HIV-exposed infants and their mothers in PMTCT programmes

Mother Support Groups MSGS are established at some health facilities in some countries Some MSGs employ mentor mothers and provide incentives for attending mothers MSGs have not been adopted by Ministries of Health in national PMTCT programmes Attending MSGs may increase retention in PMTCT programmes. But scientific evidence is lacking

Design of MSGs Formative research led to the MSG design: Meetings every two weeks at rural clinics Administered by trained volunteer coordinators Involving nurses as resource persons Promoting retention, PS support and education Not providing incentives (transport, refreshments nutritional support, materials etc) Designed a sustainable model that might be replicated at Zimbabwe’s 1,600+ health facilities

EPAZ Research Project Other formative research: Scale of and Rusape reasons for non-retention in PMTCT Intervention: Mother support groups, est. 2014 Sites: 30 rural health facilities in 2 districts randomised to standard of care or intervention arms Enrolment: 394 HIV+ mothers < 35 weeks gestation attending antenatal care in 2014/15 in two arms Follow-up: Mothers and infants till 12 months postnatal Rusape Mutare

30 rural health facilities (clinics) Arm 2, Mother Support Groups Arm 1, Standard of Care 15 clinics Arm 2, Mother Support Groups 15 clinics HIV+ pregnant women attending ANC 526 HIV+ pregnant women attending ANC 454 980 Not assessed 48 Assessed 478 Assessed 432 Not assessed 22 910 Not eligible 154 Eligible 324 Eligible 308 Not eligible 124 632 Not enrolled 136 Enrolled 188 Enrolled 206 Not enrolled 102 394 279 Mother or baby died 11 Deliveries * 104 Deliveries * 175 Mother or baby died 11 PN follow-up >6m* 92 * As at 31 Oct. 2015

Mother Support Groups MSGs meet every two weeks HIV-positive mothers join groups soon after booking MSGs meet every two weeks Groups are led by volunteer coordinators Health information is given by clinic nurses

MSG Member Characteristics (n=51) Not enrolled Age (yrs) Primary Secondary Pentecostal Apostolic or Zionist sects Mainline traditional churches

Anti-retroviral treatment Infant nutrition & health MSG Topics Mother- to-child transmission Male participation Anti-retroviral treatment Infant nutrition & health 8 1 7 2 SESSION 6 3 Family planning & STIs 5 4 Disclosure Delivery & infant testing Positive living 4-monthly cycle

Mothers graduate after 6 months postnatal

Retention activities Retention in ANC/PNC is stressed at each meeting

Promoting attendance Members receive a reminder before each MSG meeting Non-attenders are contacted after missing an MSG meeting The coordinator informs the sister of non-attenders This activates home visits by village health workers

Retention in HIV care definition Retention in HIV programmes: defining the challenges and identifying solutions: meeting report. WHO, 2012 2. Consolidated Strategic Information Guidelines for HIV in the Health Sector. WHO, May 2015 “When a patient enrolled in HIV care routinely attends these services, as appropriate to the need”

Retention Definitions, EPAZ, 2013 Attended in month 11 or 12 1 2 3 4 5 6 7 8 9 10 11 12 Postnatal Month “Retained-in-care” at 1-year

Retention Definitions, EPAZ, 2013 Did not attend in month 11 or 12 1 2 3 4 5 6 7 8 9 10 11 12 Postnatal Month “Not retained-in-care” at 1-year

Retention Definitions, EPAZ, 2013 Attended at least once every 2 months 1 2 3 4 5 6 7 8 9 10 11 12 Postnatal Month “Fully retained-in-care” at 1-year

Retention Definitions, EPAZ, 2013 Did not attend at least once every 2 months 1 2 3 4 5 6 7 8 9 10 11 12 Postnatal Month “Partially retained in care” at 1-year

Retention Definitions, EPAZ, 2013 Did not attend at least once every 2 months 1 2 3 4 5 6 7 8 9 10 11 12 Postnatal Month “Not retained-in-care” at 1-year “Partially retained in postnatal care”

Postnatal MSG attendance rates of mothers 93 mothers reached 6 months postnatal Full 6m. MSG Attendance (42%) Partial 6m. MSG Attendance (21%) Partial MSG Attendance (25%) No MSG Attendance (13%) Attended M5/6, M1/2 and M3/4 (39) Attended M5/6 but not M1/2 or M3/4 (19) Did not attend M5/6, attended other MSGs (23) Never attended any MSG (12)

Postnatal Attendance Rates of Mothers at MSGs by 2-month periods

MSG ATTENDANCE RATES BY CLINIC (n=143) no. of enrolled mothers at each site 4 10 5 11 9 8 18 14 17 143 % 41% 34%

Reasons for MSG non-attendance (n=51)

Conclusions 1. MSG establishment is feasible; groups function well with limited external support 2. Retention-in-care and on-treatment definitions are needed to guide PMTCT service delivery 3. Early data on attendance of mothers in MSGs is encouraging. Results of whether MSGs increase retention in postnatal PMTCT care expected in 2016 4. If MSGs prove to be successful, expansion of MSGs at other sites may be implemented

centre of prevention of Placing children at the centre of prevention of Where is the child in campaigns to vertical transmission. We need to make sure children are central in Prevention of Mother to Child Transmission Responses.

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Postnatal mothers not attending an MSG

Mobile Phone Ownership Health Facility No. mothers enrolled in MSG Members without phones No. (%) Marange 20 Mayo 2 14 3 21 St Theresa 11 27 Chipfatsura 7 2 29 Nyazura 4 Chinyadza 8 38 Zvipiripiri 22 9 41 Rukweza 12 5 42 Matsika 43 Tandi 6 55 Burma Valley 58 Weya 16 10 63 Mayo 1 75 Total 188 67 36%

Average attendance at MSG meetings

No. enrolled mothers by health facility

Attendance at MSG meetings Facility no. mothers never 1-3 meetings 4-7 meetings  8 meetings av. attendance Matsika 8 2 4 64 Chipfatsura 5 1 3 60 Chitakatira 22 7 10 Nyazura 18 54 Mayo 2 16 51 Chinyadza 6 Mayo 1 49 Marange 23 11 44 Tandi 42 Burma Valley 14 38 Weya 12 Rukweza St Theresa 19 36 Zvipiripiri 33 TOTAL 218 12 (5%) 62 (28%) 105 (48%) 39 (18%) 47%