Policy, realities and challenges of breastfeeding in HIV:Innovative, Public-Informed Approaches of Community

Engagement in elimination of mother to child transmission (eMTCT)

Betty SamburuProgramme Manager Maternal Infant and Young

Child Nutrition -Kenya

Outline of presentation

• Rationale• Aim and objectives• Methodology• Key findings and recommendations

What did we set to find out? Innovative, Public-Informed Approaches of Community

Engagement in eMTCTWhat did we do? Conducted qualitative participatory action

research

GoingEvidence

From Policy

Rationale • Evidence has shown HIV can be eliminated; (CUBA)• However many children are still being infected in Kenya (13000

new infection in 2013)• Kenya has adopted and endorsed the WHO guidelines

– EBF for six months and continued BF up to at least 1 year– Counselling mothers on safer breastfeeding practices

• However, in most cultures, decisions on infant feeding are rarely made by the mother alone

• Such national policies have under looked such issues. • Prelacteal feeds and mixed feeding is common • This is a risk for HIV transmission• The current concern is whether BF by HIV positive women could

be made safer to reduce the risk of transmitting HIV• However, there is little evidence on how this could be done at the

community level.

Aim and objectives

Aim To obtain a deeper understanding on the experiences and challenges faced by HIV positive women and their communities in adhering to WHO (also national guidelines) for breastfeeding

Objectives• To identify gaps and challenges for safe breastfeeding among

HIV positive women • To identify proposed community structures for support of HIV

positive mothers

T

Method Participatory action research in Koibatek Sub County, Baringo County, KenyaInterviews = 65 (Pilot and Main study)Total of 205 respondents involved in Focus Group Discussions, In-depth interviews and Key Informant InterviewsFDGs (12) KIIs (16) IDIs (12)

Fathers Community leaders Pregnant women

Grandmothers Religious Leaders HIV Positive Mothers (Child <2)

CHVs TBAs Breastfeeding mothers (Child <2)Young Mothers Health administrators Health care workers- (SCHMT) Nurses, Nutritionists, COs

Older Mothers Herbalists

Method Sampling and informed consent process• Purposive sampling used to get the respondents.• Identification of respondents done through key informants,

community leaders and community health workers• Snowballing to identify further participants.• Oral and written informed consent sought from participants

before participating in the interviews Data collection: recording using digital recordersData analysis• Qualitative data was transcribed verbatim and coded in NVIVO

10 to identify primary and meta codes and major themes• Analysis across all transcripts was done thematically Period the study was done • August 2014 for a period of 1 month in the field including

training of data collectors

Key findings and recommendations

1. Current guidelines not clear to both community and health workers

2. Poor implementation of policies

“Exclusively breast feed for 6 months then stop completely (KII HW )

“When a mother is HIV the baby should not breast feed (FGD)

“Breastfeeding should stop by 6-8 months “ (FGD)

“I can say some of the policies being brought on board are good but the implementation part is what is the problem”, because the mother who is HIV positive should be doing exclusive breastfeeding for six months but you find back at home these people are not prepared for exclusive breastfeeding”(KII H/W)

3. There is a challenges to Uptake of PMTCT due to1. late ANC“I was six months when I went for my first ANC since then I

went three times then I gave birth” (IDI +VE)“Most mothers here their time of going to the clinic is when

they are six months and above “ (KII HCW ) 2. Home deliveries “We still have a problem because we have not brought in

board those TBAs on issues of risks, some of them have received the information but because that is where they get their daily bread they go as far as mobilizing them”(KII )

3. Lack of health facilities and human resource capacity“But on these sides of Saos Kibias the facility in Kibias is a

dispensary there are no delivery services so they tend to go to the traditional TBAs (KII)”

4. Ignorance

4. Minimal partner involvement in PMTCT

• “but coming as a couple to PMTCT to be counseled together and tested or to be told of issues as pertains antenatal care clinic follow ups, men don’t come. For example for the last three months out of many mothers who were seen in ANC six were couples so the male involvement is very low”. (KII)

5. Gender barrier which women face (family influence)

• “when I gave birth I was told that I could choose to breastfeed or not to breastfeed at all so I chose not to breastfeed but my mother inlaw and my husband were insisting that I breastfeed. so in that state I became confused so I breastfed the baby for two weeks then they brought the formula then I started giving the formula. When the baby was one year seven months he started to diarrhea so they took the PCR and went with it to Kericho and it came back that the baby was infected. But the health of the baby was not good he had diarrhea and vomiting so I took him to hospital but he later died. So after that one died I became pregnant again so with this pregnancy I had learnt that breastfeeding is good for the baby and my baby is negative (IDI +ve )

6. Cultural practices and traditions handed down over generations which hinder best practicesViews regarding expressing breast milk • Not a common practice in the community –considered

UNNATURAL• “Unless the mother is sick or has undergoes an operation but

is not allowed in our community…if the child is born prematurely, the mother can express milk and the child is feed with the milk…Its only problem that can allow that…The hygienic conditions is the big problem…The problem is how this milk will be kept and the right temperature that the child is supposed to get milk” (FGD, Grandmothers, Mumberes)

• Concerns with issues of expressing and handling/ preserving the milk

• Expressing “destroys bond between mother and baby”

Facilitators to EBF• Counselling• Mother Mentors• ARV drugs and success storiesHIV positive women who were interviewed reported they strictly

practiced EBF with the current child because they attributed mixed feeding to death of their previous

• “Yes even the one who died I gave that is what corroded the stomach and he became sick throughout”. IDI +ve

• “It is bad because like me I gave the child food and also breastfed and that child died so there is no need of giving that child food since I gave the child herbs they scratched the throat and so the baby got the virus since I was still breastfeeding. So it is better that you even stop breastfeeding if you see that you will not make it and give other foods other foods rather than doing mixed feeding” ( IDI +ve )

• Identify such to be used as mother mentors in the community

Barriers to EBF1.Misinterpretation of EBF to only exclude solid foods from breast milk

• Water considered very important and necessary for child survival

• “I give water every day like three spoons I thought you were asking about food.” (FGD, Older mothers, Timboroa)

2. Crying babies –BM considered NOT enough3. Pre lacteal feeding widespread: Herbs, tonic water, Plain

water, water solution (glucose, salt and sugar), “sukaringuru” solution, diluted milk– Given as early the first day of birth– Given to feed baby when it is perceived “not enough milk

produced” after delivery.– To relieve “imagined” stomach upsets –when child cries

incessantly – Sometimes even advised by health care workers at health

facilities

Barriers to EBF4. Social pressure and lack of control over EBF • Partner • Mother in law 5. Lack of disclosure• Women who did not disclose their status to their partners,

mothers or mother in law had challenges in EBF • “My grandmother brought for me herbs and told me that they

clean the child’s stomach so I told her to light the fire since at that time I am not allowed to go to the kitchen but I can tell you the truth before God I poured it on the baby’s clothes, since she is cooking on the other side and you can’t pour it on the floor since she will see so I poured it on the baby’s clothes until it was over.” (IDI +ve)

6. Abandonment by spouse and family “I was pregnant and I went to the clinic when it was five months so I

was tested and I was told. So when I went home I told my husband and he reacted negatively he denied so I did not … my mother in law really humiliated me and she incited her son to leave me when they learnt my status they said I should be sent back home so that she can take care of her son then me I go back to my parents but I persevered She thought it was me who came with the disease and not her son.” (IDI, HIV positive mother, )

7. Stigma and peer pressure-Perception that EBF is for HIV +VE women

• Presence of women who are also breastfeeding but not practicing EBF paused a challenge because of stigma

“You have to breastfeed in secret so the other people are curious are you breastfeeding or not so they come to confirm. The other stigma is when you are giving the child Nevirapine because they ask why the child is being given the drug and others are not given so that is the reason I told you that you have to breastfeed in secret so that they don’t see you giving the child the drug”.+ve rvn

8. Inadequate counselling

• Some mothers didn’t get adequate counselling on infant feeding and ended up mix feeding

“by that time they just wrote it down and even it was being bought in Eldoret and it was costing 900 shillings so when it was brought I read the instructions and mixed it myself” +ve .

• Reason –inadequate staff and lack of counselling skills• “At times we get the scenario that somebody who is not

trained fully on PMTCT only OJT is taken to that service entry point so at times to me the quality of PMTCT service may not be done to what it is supposed to be”

• Lack of capacity building on PMTCT…few staff who are trained

9. Lack of adequate food contributes to HIV mother not adhere to EBF

• Food security (access, availability, affordability, quality and quantity)

“The mother could not because she said she does not have food to eat so the child does not have milk so what we did we introduced the nutritionist Miriam so she is aware and she has been following that case. So there is a big problem because the ARV drugs if one takes on an empty stomach that is a big problem we have been insisting that they have to eat food”

10. Opportunistic infections such as cold and other illnesses“At times I get tired, I get colds and other illnesses…other times I can wake up feeling very tired I cannot do anything so I am forced to just sit down.” (IDI, HIV positive mother, Ravine)

11. Alternative medicine is a challenge making mothers to default

“Even they go as far as even wooing the HIV positive mothers even to defaulting they stop taking our medicine they start taking theirs they come here after developing opportunistic infection”(KII)

12. Employment and work“she (BF mother) will leave at 8 and then go to work in

someone's compound upto six ln the evening until the boss comes back so you can imagine all those hours the baby has not breastfed but has been given other foods as they wait for the mother to come in the evening and most bosses don’t like you carrying your baby to work, she feels that when she comes with her baby, she will concentrate more on her baby than the job (FDG CHV)”

13. Perception that ARVs reduce breast milk

Support structures in the community towards MIYCNSupport structures for HIV infected -at health facilities1. Integrated PMTCT services at the ANC at the District Hospital has

enhanced testing for HIV among pregnant women• Has led to low missed opportunities because previously a

mother could be tested and referred to the CCC which is far from MCH and because of the stigma would disappear

• Has led to reduction of defaulters• Has enhanced issues of adherence to drugsNB: some think integration is not feasible for lower level

facilities and has also led to increased work load2. Counseling on PMTCT…mother gets integrated full package at one

point 3. Early ANC attendance…contributor to zero HIV transmission4. Mother mentors at the PMTCT clinic

Support structures in the community towards MIYCN

1. Mentor mothers to support HIV infected mothers on MIYCN2. Establishment and support to breastfeeding support groups3. Social support structures…churches offer much needed material

support “When we hold meetings for women in the church, I usually go

and talk with them and I try to emphasize that they eat well and also grow traditional foods like cassava, millet, so that they have adequate and nutritious food to eat” (KII, Chief, Poror)

4. Conduct community mobilization and advocacy5. Political will/buy in -member of county assemblies (MCAs) to

be role models to take their wives to clinic then others follow6. Use model mothers with success stories especially those ones

who have succeeded BF & their children turned -ve

Enhancing community support structures 1. Empower community strategy…facilitation, capacity building of

CHV2. Integration of MIYCN module in the community strategy package

“To some extent I can say that infant feeding has been given a raw

deal in the community strategy because even when you look at the community nutrition it is just touching on issues of kwashiorkor, marasmus use of MWAK just a small package so if need be where a certain module can be found which is dealing with infant feeding the CHWs are trained on it” (KII, Sub County Community Strategy Coordinator)

3. Establishment of breastfeeding support groups-TBAs, men/fathers, CHWs, young mothers, local administrators to give credibility to the groups, experts/health workers to provide advice

4. Engage men in support structure formation

Relaying health messages to community

1. Health facilities/workers…e.g. ANC/PNC, clinics…IEC materials at health facilities

2. Community Health Volunteers (CHVs)3. Barazas…4. Mobile phones…text messages5. Community action days and dialogues days, outreaches…

CHWs6. Churches Mosques –Religious leaders 7. Support groups/ self help groups/ Women groups…8. Mass media…radio…Chamugei FM…Newspaper (poorly

read)9. Seminars

Recommendations

• Community based peer counselling and support Provide home-based care and information to enhance continuum of care through the community health strategy.

• Incorporate MIYCN module in community health strategy

• Provide evidence on cost effectiveness of community health strategy

• Have mother mentors at the community level

1. Real need for primary health services, counselling and support

Recommendations2. A holistic approach to MIYCN

• Involvement of husbands, and fathers• Mother, mother in-law, grandmothers • Friends and peers, other key family level influencers

3.Strengthen existing structure• Village chiefs• Traditional birth attendants• Peer mother support groups involving health

professionals, and community health volunteers• Self help groups

Recommendations 4. Communicating clearly, consistently and in unisonCommunity: encourage health seeking behaviours such as

(i) ealy ANC attendance (ii) address cultural practices and barriers (iii)use multiple innovative IEC channels

Health Professionals: (i) Provide tailored tools such as job aids to CHVs;

(ii) Ensure clear messaging and communication flow from government to communities

5. Allocation of county and national resources for implementation of MIYCN activities at the community

6. Implementation of workplace policies both in formal and informal sector

Conclusion

• There are complexities surrounding infant feeding for HIV positive women hence the need for a holistic approach to interventions aimed at achieving elimination of mother to child transmission (eMTCT).

Way forward• Adoption of Baby Friendly Community Initiative (BFCI) to

enhance MIYCN at the community level

MediaHousehold help

Work

Husband

Family

Friends

Health Professional

Mother Support Group

Appreciation

• MOH-Kenya• African Population for Health Research Centre• UNICEF-Kenya