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REPORT OF AN ACTION RESEARCH STUDY

ON

FEEDING PRACTICES OF HIV EXPOSED, INFECTED

AND AFFECTED CHILDREN UNDER THREE YEARS OF AGE IN

SELECTED DISTRICTS OF KARNATAKA

BY INTERNATIONAL SERVICES ASSOCIATION

INSA-INDIA 5/1 Benson Cross Road

Benson Town Bangalore 560046

Tel +9180 23536633; 23536299 Email: insaind@airtelmail.in

Web www.insa-india.org.in

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FOREWORD

India is proclaimed as a country that has ‘emerged’. Presently competing with the super power countries to secure a permanent seat in the UN Security Council, India's economy is enjoying a GDP growth of 9.0% .From 2007 to 2008 India’s GDP per capita boomed by 50 percent. India produces one of the world’s large force of technical graduates. India also boasts of having many billionaires. Yet ,the paradox is ‘Malnutrition in India has fallen only six percentage points, to roughly 46 percent, since economic reforms began in 1991.

Malnutrition is an abnormal physiological condition caused by deficiencies, excesses or imbalances in energy, protein and/or other nutrients. Under nutrition is when the body contains lower than normal amounts of one or more nutrients i.e. deficiencies in macronutrients and/or micronutrients. The most pervasive form of malnutrition to date in the poorest countries is under nutrition.1 Malnutrition, under-nutrition and hunger are all man-made problems.

India is ranked 65th out of 84 countries in the Global Hunger Index of 2009. This ranking falls below countries including North Korea and Zimbabwe. The image of ‘emerged India’ is paradoxical with such a ranking in hunger. It hinders India's ambitions to channel its demographic dividend to fuel its global economic ambitions’.2

Among the malnourished children in India, 63% presented with Marasmus, 13% with Kwashiorkor and 24% with both forms of malnutrition. A report by UNICEF on child nutrition reports that out of 146 million children under the age of five who are underweight in the developing world, 57 million is in India, giving it by far the biggest share of the problem. Doctors say every year almost eight million babies in India are born weighing less than 2,500gm (5.125 lbs) and that millions of underweight babies die in the country annually’.3

Challenges leading to malnutrition are compounded when children are exposed, infected or affected by HIV infection. The sociological challenge of stigma, broken families, loss of a parent or both parents, fear of infecting their off-spring make the WHO’s recently announced protocol on exclusive breast feeding for the first six months of life along with prophylactic ARV an unknown domain. Will mothers agree? How do mothers perceive what’s best for their child? What are health care providers directly in touch with mothers saying about feeding practices? These questions are critical to the nutritional promotion of health for children exposed, infected or affected by HIV infection. This research study aims to find answers to these questions.

1 The Mother and Child Health and Education Trust http://motherchildnutrition.org/ mother and child nutrition: mother infant

young child malnutrition and nutrition. 2010 Hong Kong registered charity no 91/10374

2 India richer, but also hungry, malnourished Reuters Posted on Apr 20, 2010 at 10:47 | Updated Apr 20, 2010 at

15:27 3 Geeta Pandey, Spotlight on India's malnourished children. BBC News, Shivpuri. Tuesday, 2 May 2006,

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ACKNOWLEDGEMENTS

This research would not have been possible without the aid of several experts, organisations and people, who went out of their ways to guide INSA- India through the stages of this study. Our thrust to strengthen evidence based interventions was realized through engaging in the minute details first- hand of this study. All this would not have been possible without the open sharing of 104 mothers living with HIV infection who participated in the interview with confidence and a desire to help other mothers and children. Our heartfelt thanks to each one of them. Their children and family members who accompanied them for the data collection interviews in the varied sites are acknowledged for support rendered to the mothers being interviewed for this study.

The finalization of the areas of research study, the methodology, tools and plan for analysis were whetted by experts who gave of their valuable time and expertise with commitment. This research study is enriched by their participation. We acknowledge our deep appreciation to our research advisory committee comprising of Ms. Saroja and Ms. Lakshmi of KNP+, Dr. Troy Cunningham of Engender Health, Dr. Chandra Shekar Gowda of Swasti, Ms. Priya Anand, an independent consultant, Mr. Krishnan, Mr. Vasu and the Analysis Team of YRG CARE-Chennai and Mr. Saud Akhtar of SAN! SIP.

The YRG-Care team under the leadership of Mr Srikrishnan and Mr Vasudev deserves our humble appreciation for the patient way in which they supported INSA- India with data entry and analysis

We thank Ms. Priya Anand for initially writing the concept note and drafting an initial questionnaire format.

We are lucky to work with a committed hard working team at INSA-India, some of whom burnt midnight oil to complete the analysis and the report. A big thank you to the following INSA-India staff members viz.,

• Ms. Agatha Sekhar, Ms. Reena Halli, Shantha Kumari Ms. Charlet Vijay and Rev. Devahi Selina Dayam for coordinating and undertaking data collection in the varied sites;

• Ms. Issac Roy, Ms. Salma, Ms Venkata Lakshmi, Ms. Damayanthi, Ms. Hanadi Ahmed, Ms. Shantha Kumari and Rev. Devahi Selina Dayam for entering the data

• Ms. Shantha Kumari for scrutinizing some of the key data variables of the research and coordinating analysis with YRG-Care.

• Ms. Sunanda Nag for editing and proof reading the concept note and report.

• Ms. Padma and Ms. Beena for helping in prompt issuance of budgeted funds, when needed.

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This research study would not have the completion it has without the able coordination of Rev. Devahi Selina Dayam and Ms. Shantha Kumari , Program officers at INSA-India. They are commended for their excellent coordinating the research program all through and engaging the participation of the following experts and organisations, whom we deeply acknowledge:

• Dr. Shivananda, Dr. Sajeeva, Mr. Yashwanth, Ms. Udaya and team from the Indira Gandhi Institute of Child Health, { IGICH} Bangalore

• Dr. Ashok Rau, Mr Christopher Skill, Dr. Nirmala Skill and the entire PPTCT Team of Freedom Foundation, Bangalore

• Ms. Saroja, President of KNP+ (Karnataka Network of Positive People) and the Karnataka District level network leaders of Jeeva Jyothi Network- Mudhol, Spandana Network-Belgaum, Sankalpa Network-Bijapur, Jeevan Asha Network- Kolar, Deepa Jyothi Network-Udupi, Jeevanmukthi Network-Hubli, Jeeva Jyothi Network- Bagalkot, Hongirana Network-Mangalore,

• Organisations : Milana-Bangalore, Accept-Bangalore, SPAD-Bangalore and Kolar.

Automated Data Systems that aided with software challenges encountered and Mr. Sarathi of ASK Xerox worked behind the scenes to assist the team at Bangalore. One cannot but forget the numerous cups of tea and coffee that were served by our office help and assistants, Ms Selvi, Ms Araveena, and Ms Adi Venkatalakshmi. They each made it possible for us to reach this stage and to all we say a BIG THANK YOU

This research study acknowledges support of the INSA-India governing board and financial support received from ICCO, Holland. We acknowledge their trust and timely assistance in undertaking this study.

If we have left out any person or organisation that participated in the study, the error is just ours, and we apologise, if so be the case. It was totally unintentional. With grateful thanks to those not mentioned, who helped behind the scenes in a kaleidoscope of roles.

Ms. Edwina Pereira Ms. Florence David Program Director –Training Program Director-Administration

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TABLE OF CONTENTS

SI. NO

Contents Page Numbers

1. Glossary 6

2. Table of charts 7

3. Chapter 1 Need for the Study

8

4. Chapter 2 Review of literature

13

5. Chapter 3 Research methodology

20

6. Chapter 4 Findings, analysis and interpretations

28

7. Chapter 5 Recommendations from the study

44

8. Conclusion 50

9. LIST OF ANNEXURES:

1. Concept note approved by ethical clearance board

2. Questionnaire for focus group discussions 3. Individual interview schedules 4. Graphic representation of malnutrition status of

girls exposed, infected and affected by HIV under 3 years of age

5. Graphic representation of malnutrition status of

boys exposed, infected and affected by HIV under 3 years of age

52-73

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GLOSSARY

AIDS : Acquired immune deficiency syndrome

ART : Anti retroviral Therapy

CABA : Children Affected by HIV and AIDS

CCC : Community Care Centre

DIC : Drop in Centre

GDP : Gross Domestic Product

HIV : Human Immunodeficiency Virus

ICCO : Interchurch organization for development cooperation

IGICH : Indira Gandhi Institute of Child Health

INSA-India : International Services Association

KNP+ : Karnataka Network Positive People

MDGs : Millennium Development Goals

NGO : Non-Governmental Organization

ORWs : Outreach Workers

RAC : Research Advisory Committee

SAN SIP : Stop AIDS Now- South India Project

SPAD : Society of People’s Action for Development

SSPS : Social Service Payment System

PLHIV : People Living with HIV

PPTCT : Prevention of Parent to Child Transmission

PMTCT : Prevention of Mother to child transmission

YRG CARE : Y.R. Gaitonde Centre for AIDS Research and Education

UNAIDS : United Nations Program on HIV and AIDS

UNICEF : United Nations Children's Fund

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Table of charts Page no Chart 1 Educational status of the respondents 20

Chart 2 Age-wise distribution of the respondents 21

Chart 3 Marital Status of the respondents 21

Chart 4 Employments status of the respondents 22

Chart 5 Have you disclosed your HIV status to anyone? 22

Chart 6 Details of delivery 23

Chart 7 Prophyxis administered 23

Chart 8 Prohylaxis in institutional delivery 24

Chart 9 Knowledge on Nutrition 28

Chart 10 Feeding practices 29

Chart 11 Advice received on feeding practices 29

Chart 12 Sex of children and feeding practices 30

Chart 13 Feeding practices and sex distribution 31

Chart 14 Education of the respondents and feeding practice 32

Chart 15 Support for mixed feeding 33

Chart 16 Exclusive breast feeding person 33

Chart 17 Obstacles for breast feeding 34

Chart 18 Support for exclusive replacement feeding 34

Chart 19 Support for exclusive replacement feeding (person) 35

Chart 20 Obstacles for exclusive top feeding 35

Chart 21 Obstacles for exclusive replacement feeding (person) 36

Chart 22 Support for mixed feeding 36

Chart 23 Support for mixed feeding (Person) 37

Chart 24 Marital status of the respondent and feeding practices 37

Chart 25 Number of children and feeding practice 38

Chart 26 Income and feeding practice 39

Chart 27 Did the child face any health problems during the first six months/year 39

Chart 28 HIV Status and feeding practice 40

Chart 29 HIV related service to assist/guide for better nutrition 41

Chart 30 Self stigma & its relationship to feeding practice 42

Chart 31 Self stigma among respondents 43

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CHAPTER 1

"We are guilty of many errors and many faults, but our worst crime is abandoning the children, neglecting the foundation of life. Many of the things we need can wait. The child cannot. Right now is the time his bones are being formed, his blood is being made and his senses are being developed.

To him we cannot answer "Tomorrow". His name is "Today". Gabriela Mistral, 1948. How relevant it is still

Globally, children aged under 15 years accounted for an estimated 2 million of the estimated 33 million people living with HIV infected in 2007. An estimated 2.7 million people were newly infected with HIV in 2007. Of these, 370 000 were children under 154. The overwhelming source of HIV infection in young children is mother-to-child transmission. Transmission from mother to child occurs during pregnancy, labour and delivery, or by breastfeeding (UNAIDS, 2000).

Need for the Study

In 2005, the National AIDS Control Organization dramatically increased access to antiretroviral therapy for children, and several thousands of children were successfully initiated on specific anti-HIV therapy. However, background co-morbidities make positive living a challenge for children in India. Two common co-morbidities include anaemia and poor nutrition. Their detrimental effects are magnified when a child is living with HIV infection5. This research study hopes to study underlying factors that determine feeding practices among children exposed , infected and affected by HIV.

More than half of all child deaths are associated with malnutrition directly or indirectly Malnutrition weakens the body's resistance to illness. Poor diet, frequent illness, and inadequate or inattentive care of young children can lead to malnutrition. HIV, AIDS and malnutrition are interrelated. Research suggests that malnutrition increases the risk of progression of HIV infection. Further, it may also increase the risk of HIV transmission from mother to baby. In turn, HIV infection makes malnutrition worse through its attacks on the immune system and its impact on nutrient intake, absorption and the body's use of food. Malnutrition associated with HIV infection has serious and direct implications for the quality of life of people with HIV and AIDS. In addition, opportunistic infections may develop at different stages in childhood with visible manifestations such as growth retardation6.

4 UNICEF in action Updated: 7 January 2010 5 Anaemia and growth failure among HIV-infected children in India: a retrospective analysis. Anita Shet, 1 Saurabh Mehta,2 Nirmala Rajagopalan,3 Chitra Dinakar,1 Elango Ramesh,4 NM Samuel,5 CK Indumathi,1 Wafaie W Fawzi,2 and Anura V Kurpad6

Low birth weight, decreased energy intake, diarrhoea, malabsorption, chronic diseases of the heart, kidney and lungs, micronutrient deficiencies, neuroendocrine abnormalities and repeated episodes of infection

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Many of these opportunistic infections in turn can lead to mal-absorption and malnutrition. 7 This study aims to study the associations between feeding practices and services provided to children under three years of age who were exposed infected or affected by HIV and mothers living with HIV infection.

Several studies have been conducted in relation to Paediatric HIV, malnutrition and opportunistic infections. However many of these are clinical in nature, focus on statistics and do not include data of a qualitative nature that can be used to develop guidelines and manuals to train laypersons and NGO staff on preventing early childhood malnutrition and reduce the impact of malnutrition in children exposed, infected and affected by HIV infection.

A Brief of the Organisation Undertaking the Research

The International Services Association, INSA-India was established in 1982 and is committed to the vision of ‘A Just Society living with Health and Development’. As a trainer organization, INSA-India offers training opportunities for all levels of staff working in registered organizations addressing community health and development issues to reach the Millennium Development Goals. INSA-India is one of the lead organizations in pioneering work for HIV and AIDS prevention, care and support programs that include HIV mainstreaming, children at risk, gender, sexuality, reproductive health, empowerment and rights programs in India. As a result of INSA-India’s training and unique individual follow-up services at the site of the participants, successful health and development programs which are culturally appropriate and cost effective have been established in remote and rural as well as urban areas of India, Nepal and Bangladesh.

INSA-India had, in its wide experience with people living with HIV infection garnered empirical data, incidental experiences on mothers’ challenges with feeding their children. With the World Health Organisations protocol of exclusive breast-feeding of children when mothers are living with HIV infection, INSA India understood that the complex dynamics required scientific study in order to design meaningful interventions for promoting the health and development of children who are exposed, infected or affected by HIV.

Nutritional status is a key pointer of many components of an individual like poverty and hunger, poor health, and inadequate education and social conditions. Good nutrition is very much crucial to reach the health, education and economic goals contained in the MDGs [Millennium Developmental goals]. Devoid of good nutrition good health which is a foundation to cognitive-development growth and productivity cannot be achieved. Poorly nourished children cannot grow and develop properly, resist infections or learn to their full potential. Ultimately nutrition improvement programs have an imperative role to play in reaching the MDGs.

7http://www.whoindia.org/LinkFiles/Care_and_Support_Activities_Clinic_Manifestations_of_HIV_AIDS_in_Children.pdf

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Good nutrition contributes to the fight against poverty. “It protects and promotes health; reduces mortality, especially among mothers and children.8

During the training programs for people living with HIV infection over the past few years and the detailed needs assessment of the participants, INSA-India gained rich experience in understanding how much self worth determined health seeking behavior. Additionally, through personal counseling, and the sharing of children who accompany the parents to the two weeks training, INSA India understood that feeding practices was not an area of empowerment programming that existed presently. “The fish” was most often given, instead of people learning how to fish. INSA team had noticed that women and their infants were malnourished or under nourished. While the reasons for these were many, there was hardly any study carried out in India on the PLHIV feeding practices of children less than three years exposed, infected and affected by HIV. Therefore a definite need for research with regard to feeding practices was felt. Further, for any meaningful intervention to take place and effective service delivery to materialize, evidence based intervention could be designed only when the problems are understood. Since the problems are conditioned by the context and nature of morbidity, such research was felt necessary. This motivated and challenged INSA –India team, a rookie in research, to undertake this study of feeding practices.

Statement of the Problem

The study aims to describe the feeding practices of HIV exposed, infected and affected children under three years of age in selected districts of Karnataka.

Objectives of the Study

The study was designed to address gaps in understanding of what feeding practices are preferred by mothers, why and its associations with promoting health of HIV exposed, infected and affected children below 3 years of age. The specific objectives of the study were to:

• Describe feeding practices of under three exposed, infected and affected by HIV

• Determine the prevalence of malnutrition among exposed, infected and affected children

8Food and Agriculture Organisation (FAO)., Information note for the technical consultation on gender,

property rights and livelihoods in the era of AIDS, Rome, November/ December 2007

World Health Organization.,What are the Options?, Gedneva By department of child and adolescent health and development, © World Health Organization 2004.

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• Understand the processes of exclusive breast feeding; mixed feeding and exclusive

replacement feeding for exposed children

• Understand enablers and barriers to the above feeding options.

• To identify, disseminate and pilot cost effective sustainable strategies based on findings.

Scope and Limitations of the Study

The study does not reflect the performance and quality of the services provided by any organization involved in the study.

The study is not clinical based but studies the relevant social drivers of malnutrition from the perspectives of mothers. It is not an in-depth analysis of feeding practices. However, the study can be used for further research or program development and can be replicated in other cities and rural areas

Study focuses only on feeding practices of the exposed, infected and affected children under three years of age as expressed by their mothers. The field of study was delimited to 104 mothers living with HIV infection who had exposed, infected and affected children aged under three years of age who are accessing care from service delivery centers such as DIC, PPTCT, Govt. Hospital and NOG run care centers in Karnataka including Bangalore city. Mothers involved in the study were identified from those contacted through institutions and networks in Karnataka.

The study is undertaken only in those areas where mothers are accessing the ‘best available care’ from HIV related services in Karnataka. The rational being to gauge whether in this setting there are still gaps in addressing challenges of feeding practices that required addressing.

Basic assumptions

• Mothers or care givers will remember and be truthful in answering questions related to nitty gritty details asked during the data collection regarding feeding practices of their children below three years of age.

• All mothers selected by the various sites are certified to be living with HIV infection because they belong to the HIV positive network. It is assumed that children born after they were detected to be living with HIV infected are hence, exposed, infected or affected by HIV infection

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• There is a relationship between HIV related self-stigma and feeding practices that impacts children’s health.

• Identifying conducive factors and barriers will enable the development of an intervention program that promotes nutritional status of the child thereby strengthening the health and development of children exposed, infected or affected by HIV

• Mothers living with HIV infection will access care and support from HIV related services including, DICs and PPTCTs.

Presentation of the Report

The present chapter introduces the research study. Review of literature is presented in the second chapter. The third chapter outlines the methodology adopted for the study. The findings, analysis and interpretations of the data are presented in the fourth chapter. The final chapter deals with the conclusions, implications, learnings and recommendations for further action.

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CHAPTER 2

REVIEW OF LITERATURE

The scientific review of literature enables a deeper understanding of the feeding practices of exposed, infected and affected children in their early childhood. This promotes a periodic recapitulation of existing available accessible data. It also helps gauge the extent to which such data is available to those who most need such information – those most affected, the children and mothers, their immediate care givers . Further a scientific review of literature aided in understanding the integration and mainstreaming of feeding practices in the available programs promoting health and rights of mothers and children living with HIV infection. INSA-India program officers Rev Selina, Ms Agatha, Mr Issac, Ms Shantha undertook an in depth search of review of related literature within the purview of our objectives.

Understanding Malnutrition and HIV

In India HIV is more prevalent among the economically deprived section of the people. Malnutrition is one of the major complications of HIV infection and a significant factor in AIDS. In resource-constrained settings HIV infection combined with pre-existing malnutrition makes a tremendous burden on people’s ability to remain healthy and economically productive9. Malnutrition and HIV affect the body in similar ways as both conditions affect the capacity of the immune system to fight infection and keep the body healthy. Knowing all these well, yet there is scarcely any study focused on this pertaining issue of infant feeding practices among the PLHIV in regard to malnutrition.

Studies exist that indicate that most of the children are born with an average birth weight but they were not able to sustain the weight of the children. In one study, reasons provided for this inability to prevent malnutrition ranged from poor access to existing government health and nutrition services. Further the study indicated that the problem of positive mothers is compounded by the issue of high costs of infant formulas, lack of time, stigma and discrimination. ‘People with HIV who suffer from malnourishment are six times more likely to die than other {HIV} positive people after starting on treatment’10 . If a woman is malnourished during pregnancy, or if her child is malnourished during the first two years of life, the child's physical and mental growth and development may be slowed. This cannot be made up when the child is older which has wider ramifications on the future family, community and country.

Nutrition and infant feeding

There is enough of documentation for decades that breastfeeding is nature’s gift to children and it bonds the infant with her/his young mother.

9 Nutrition and HIV/AIDS: A Training Manual Kampala: RCQHC[, Regional Centre for Quality of Health Care] P.26

10 Michael Carter. Malnourishment Sabotages HIV Treatment, July edition of HIV medicine. June 29, 2006

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It provides best balanced nutrition, protects child from disease, infections such as diarrhea, stomach upsets, respiratory infections, child will have superior mental development and teeth will grow in straighter, builds the good immune system. Children have the right to a caring, protective environment and to nutritious food and basic health care to protect them from illness and promote growth and development. Yet for mothers living with HIV infection this fact conflicts with fear of transmitting infection to her baby.

Research stands by the fact that a very sick mother is eight times more likely to transmit HIV to her infant than a healthy mother. A child’s nutritional future begins with the mother’s nutritional status in adolescence and in pregnancy. Low birth weight occurs because of poor maternal health and nutrition and poor foetal growth. Latest estimates suggest that 18 million low birth-weight babies are those weighing less than 2.5 kilogram’s11.

HIV and nutrition are intimately linked. HIV infection can lead to malnutrition, while poor diet can in turn speed the disease’s progress. As ART regimens become increasingly available by government subsidy, critical questions are emerging about how well the drugs work for poor people who are short of food. HIV infection also ‘interferes with the body’s ability to absorb nutrients, an effect that occurs with many infections. Data suggests that improvements in micronutrient intake and status may help strengthen the immune system. Further, nutritional supplements, particularly antioxidant vitamins and minerals, may improve HIV-related outcomes, particularly in nutritionally vulnerable populations’12. With ‘individualized choice’ being the widespread belief and no single public health message on ideal infant feeding practice being propagated in areas of low and high HIV prevalence, mothers of newborn infants are often confused by what feeding practice is best for their child. They are at the mercy of the advice of individual health workers or family members.13

The World Health Organization promoted the concept that mothers living with HIV infection should be facilitated/counselled by trained health or nutrition workers to make informed choices about the best infant feeding option in their own situation based on what is Acceptable, Feasible, Affordable, Sustainable and Safe (AFASS)14.

However an awning gap is the paucity of a single policy guidelines on infant feeding practices when mothers are living with HIV infection that is based on local circumstances and health system capacity: either to counsel and support mothers living with HIV infection to breastfeed

11 UNICEF in action Updated: 7 January 2010 12 Ghuman MR, Saloojee H, Morris G. Infant feeding practices in a high HIV prevalence rural

district of KwaZulu-Natal, South Africa. South Africa: Journal of Clinical Nutrition. [2009]. 22(2) Pp. 74-79

13 Ibid. Pp. 74-79 14 WHO. Counselling the HIV Positive Mother. WHO: IMCI Complementary Course on HIV/AIDS;

Module 3 2007

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and receive ART interventions or to avoid all breastfeeding as the strategy that will give the best chance of remaining uninfected and alive.’15

Improving and maintaining good nutrition may prolong health and delay HIV disease progression. The impact of the replacement feeding or top milk, the alternative for breast milk poses the higher susceptibility of infants catching fatal gastro or lung related infections. There is scant literature on how such choices are made and what influences change in feeding practices.16

Research suggests that the critical age is between six and 24 months, when mothers usually start supplementing breast milk with other foods. The government and NGOs working with children exposed, affected and infected by HIV have linked or directly supply of supplementary nutrition packages. These are affordable energy-dense paste made with milk powder, which is easy to eat and require neither refrigeration nor preparation. Reports studied indicate that mother can effectively treat the child herself so only the most severe cases need to be hospitalized. Food supplementation made it also possible for larger reach of many more children, most of who recover remarkably quickly. Despite all this, only five per cent of the 20 million children at risk of death receive food supplementation17.

Stigma related to feeding practices of HIV infected mothers

There were many studies conducted on feeding practices of mothers living with HIV infection in the past, which reveals that most of them are stigma related to socio and economic context. Only very few studies minutely pointed in specific the stigma related to feeding practices of mothers living with HIV infection. As a result of few studies revealed that the scope for social stigma associated with replacement feeding is a potential concern. 18.

There are strong cultural barriers to the recommended feeding strategies either exclusive breastfeeding for the first 6 months and rapid weaning or replacement feeding. There can also be issues of stigma and pressures from family if the mother did not disclose or reveal her status in the family with regard to breast feeding or replacement feeding, of larger concern, mixed feeding.19. “Many women prepare to try out formula food after receiving counseling on the

15 Snehavaani New WHO guidelines on PPTCT and infant feeding Bangalore: newsletter of Samastha

Project-Care & Support Programme, [2010] p.27 16 Community and International Nutrition Infant Feeding Practices of HIV-Positive Mothers in India

The American Society for Nutritional Sciences Journal of Nutrition. 133:1326-1331, May 2003

17 Médecins Sans Frontières [is the world’s leading independent organization for medical humanitarian aid] October 2009

18 Department of Medical Education and Research (DMER), Government of Maharashtra, Mumbai, India on ‘Community and International Nutrition’, on October 27, 2010.

19 International Treatment Preparedness Coalition (ITPC), ‘Missing the Target: Failing Women, Failing Children: HIV, Vertical

Transmission and Women’s Health’, May 2009

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possibilities of breast milk infecting the infant after birth and information on formula feeds. But the problem crops up when the woman is back in home with the extended family, who are not aware of the HIV status of the mother or the couple.20”

There are studies that indicate that African women living with HIV have to break with tradition and stop breast-feeding to prevent passing it on to their children. ‘The medical experts said at an international AIDS conference in Uganda that the problem of breast-feeding in many countries in Africa is that the decision to feed does not always rest with the mother, but with close relatives, including mothers-in-law. They pressure them to feed the baby’21.

Stigma is very much related to cultural feeding practices, which also lay pressure on women to risk transmitting HIV to their infants rather than reveal their HIV-positive status. Achola said, "If not tackled, (incorrect infant feeding) this could erode the gains already made in preventing transmission amongst infants, especially in rural areas where traditional beliefs and stigma still hold sway.22" The family support in the household clearly affects the woman’s decision to continue with her intended feeding plan.

Poverty, gender and malnutrition

Poverty protects breast feeding in the developing countries is an old wisdom. But poverty actually threatens breast feeding both directly and indirectly.23

The attractive marketing strategies have overtaken the old wisdom from its reality. It is very much easy to feed the child for just 6 months and continue if possible with supplement feed which can protect 13% of death among the under five children.24 In the HIV and AIDS scenario there is a strong link between poverty and malnutrition. The majority of the 33 million individuals infected with HIV and AIDS are mostly women and children. The socio-economical status of women is a strong driver to this situation.

Most women are single parents who are not economically secured. The dependency of women increases with HIV infection and malnutrition is interlinked between economic developments.25

20 Suniti Solomon. YRG Care Research institute. Journal and conference, Chennai. 21 Lucy Connell. African Women Have to Stop Breast-feeding to Prevent Passing HIV to Babies. South Africa: Centers for

Disease Control and Prevention of the Chris Hani Baragwanath Hospital.

22 Chatterjee, "Mother-to-child HIV transmission in India", Lancet Infectious Diseases 3(12), December 2003 23Annette Beasley and Lisa H Amir., Infant feeding, poverty and human development - Wellington,

New Zealand: International Breastfeeding Journal -school of Social and Cultural Studies, 2007 , 24 Ibid –page 32 25 Ravinder Kaur Sachdeva, Ajay Wanch .,Women’s Issue in HIV infection. Chandigarh (India). JK

Science Review Article- Vol. 8 No. 3, July-September 2006. p. 129

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Studies prove that out of the 1 billion people living with less than a dollar day, alarmingly 70 per cent are women, two-thirds of the world’s working hours are from women, women produce half of the world’s food, yet they earn only 10 percent of the world’s income and own less than 1 percent of the world’s property. More than 850 million people suffering from hunger and malnutrition mostly are women and children26.

In so many ways HIV and AIDS disproportionately affect women than men. When women get HIV they are thrown away from the husbands’ family and they are some time non-acceptable from the siblings too. When women become destitute they often bear greater hardship than men. Most of the times they lack rights to property, inheritance and child custody and suffer greater stigma due to HIV and AIDS and their access to health care is minimum. As caregivers, particularly in areas of poor public services, feeding mothers have less time for economical activity or productive tasks. Care-related costs can push a family further into poverty. Thus in the context of HIV and AIDS, poverty and women are very much linked.

Literature indicates that due to poverty , food scarcity and access to food is itself at stake. Some studies stressed the importance of addressing malnutrition through building food security

Malnutrition is not solely related to poverty. Some studies show that although somewhat better than the poorest, a sizeable proportion of children even from the richer families suffer from undernourishment. Ensuring adequate nutrition requires not only access to food, but also adequate knowledge on how to prepare it, the nutritional needs of children, and how often feeding is required. Further, the importance of a conducive environment for the feeding of children was stressed. Recommendations from such studies stressed that interventions pertaining to nutrition should complement with the poverty alleviation initiatives and programming on enhancing knowledge, skill and practices for the mothers and contributors of feeding in the family and community27.

Feeding Practices and HIV

In the early 90’s breast feeding, was not included as a mode of transmission of HIV. However, WHO has now documented that the accepted range of HIV transmission through breastfeeding of any kind without any interventions is 5-20%28. Even among the groups met and the focus group discussions with care givers, we found that, similar to some studies, the fear of transmissions of HIV through breast feeding is over

26 Ibid-page 4 27Ravinder Kaur Sachdeva, Ajay Wanch .,Women’s Issue in HIV infection. Chandigarh (India). JK Science Review Article- Vol. 8

No. 3, July-September 2006. p. 129

28 WHO, UNICEF, UNFPA and UNAIDS. HIV Transmission through Breastfeeding: Review of Available Evidence. Geneva, 2004. Available on WHO web site, http://www.who. i n t / c h i l d - a d o l e s c e n t - h e a l t h / N e w _ Publications/NUTRITION/ISBN_92_4_156271_4.pdf

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estimated and over perceived as real.29 . Few studies that have shown a link of transmission of HIV infection through breast milk are summarized below:

• When mothers living with HIV infection practice breast feeding as per conventional norms, this carries a risk of HIV transmission of between 0.8 and 1.2 per child-month30. It was hence suggested then, to promote breastfeeding for a shorter period than usual in order to reduce the cumulative risk.

• Exclusive breastfeeding does carry a risk. From about six weeks to six months the risk of HIV transmission was documented to about 4% in South Africa31 .

• Studies do promote the fact to provide antiretroviral (ARVs) women need when their viral loads increase and CD4 counts drop. Women with high viral load or low CD4+ count are most likely to transmit HIV through breastfeeding. There is increasing evidence from observational studies presented as abstracts32 that women with lower viral loads and higher CD4 counts, better facilities to prevent feeding related complications like mastitis are less likely to transmit HIV through breast feeding.

Exclusive breastfeeding At the time of WHO’s October 2000 technical consultation, the main reason for recommending exclusive breastfeeding for HIV-infected women who choose to breastfeed was the many well-documented benefits of exclusive over predominant33 or partial34 breastfeeding on infant health. The consultation was also aware of the possible benefits of exclusive breastfeeding in relation to HIV transmission35. Since then, other studies have shown that exclusive breastfeeding carries a lower risk of HIV transmission than mixed breastfeeding 36and these findings support the earlier recommendation. The studies recommended that health workers should be reminded that exclusive breastfeeding for the first six months is the gold standard for babies.

Mixed feeding

29 Chopra M and Rollins N. Infant feeding in the time of HIV: Assessment of infant feeding policy and programmes in four

African countries scaling up prevention of mother to child transmission programmes. Archives of Disease in Childhood, published online 8 Aug 2007. Available at: http://adc.bmj.com/cgi/content/abstract/ adc.2006.096321v1, accessed September 1, 2007.

30 The Breastfeeding and HIV International Transmission Study Group (BHITS), A. Coutsoudis, F. Dabis, W. Fawzi, P. Gaillard, G. Haverkamp et al. “Late postnatal transmission of HIV-1 in breast-fed children: An individual patient data metaanalysis.” Journal of Infectio s Diseases 2004 189(12): 2154-2166

31 Coovadia HM et al. Mother-to-child transmission of HIV-1 infection during exclusive breastfeeding: the first six months of life. Lancet, 2007, 369:1107-1116.

32 Arendt V et al. AMATA study: effectiveness of antiretroviral therapy in breastfeeding mothers to prevent post-natal vertical transmission in Rwanda. Fourth International AIDS Society Conference, Sydney, Australia, 22-25 July 2007. Available at: http:// www.ias2007.org/pag/Abstracts.aspx?SID=52&AID=5043, accessed September 1, 2007

33 WHO, UNICEF, UNFPA and UNAIDS. Ibid. 34 Chopra, M, ibid. 35 Coutsoudis A et al. Influence of infant feeding patterns on early mother-to-child transmission of HIV-1 in Durban, South

Africa: a prospective cohort study. Lancet, 1999; 354:471-476 36 Coovadia HM et al. ibid

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Studies highlighting that mixed feeding carry a higher risk of HIV transmission than exclusive breastfeeding were beginning to be noticed. The risk with mixing breastfeeding with formula milk or solids is substantially higher than the risk from adding water or other non-food fluids. 37

The recommendations of these studies represent significant shifts in practice in several areas. The key recommendations documented are:

• Antiretroviral therapy for all HIV-positive pregnant women with a CD4 count below 350 or WHO stage 3 or 4 HIV disease, with treatment to begin without delay using a backbone of AZT and 3TC or Tenofovir and either 3TC or FTC.

• Longer provision of antiretroviral prophylaxis for HIV-positive pregnant women who are not in need of ART for their own health.

• Where mothers are receiving ART for their own health, infants should receive prophylaxis with Nevirapine for six weeks after birth if the mother is breastfeeding, and prophylaxis with either Nevirapine or AZT for six weeks if the mother is not breastfeeding.

• For the first time there is enough evidence for WHO to support giving antiretroviral therapy to the mother or child throughout the breastfeeding period, with the recommendation that breastfeeding and prophylaxis should continue until twelve months of age if the infant is either HIV-negative or of unknown status.

• Where mother and infant are both HIV-positive, breastfeeding should be encouraged for at least the first two years of life, in line with recommendations for the general population.

37 Coovadia, ibid.

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CHAPTER 3

Research Methodology

The study is primarily an empirical research through questionnaires and in-depth interviews and involvement. The research also did some background research study review.

The concept note for the research study and the tools developed for the study, including the consent forms were submitted and approved by Freedom Foundation’s Ethical Review Board and the Research Advisory committee which included focal point persons from KNP+, an organisation involved with CABA care, experts in HIV and a research organisation. No group of mothers were approached directly since the INSA India team valued the supportive assistance rendered by the organisations they were linked to in the follow up of the study. The leadership of each of the organisations/networks involved was first met for discussions and their approval sought.

The Sample

Stratified purposive sampling was used with KNP+ and organisations identifying available mothers that fitted the criteria for the study. The criteria included they have a child/children under the age of three years after they found out they were living with HIV infection. A sample size of 105 children {53 boys and 52 girls} and 104 Mothers Living with HIV having children {after they knew their HIV status} in the age group below three years was considered. The study selected mothers and children already accessing care and support from available HIV related services. Mothers or care givers of children exposed infected or affected by HIV were the primary respondents to the interview schedule administered. A brief profile of respondents follows:

CHART - 1

29% of the total respondents are illiterate. 39% of the respondents have studied more than middle school. Only 32% of the respondents have studied up to high school and more.

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CHART - 2

CHART – 3

Majority of the

respondents were in

the age group of 18

to 29. Mean age of

respondents is 27

years.

Majority {76%} of the respondents are married.

18% of the respondents are widowed and 5 % separated

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. CHART - 4

. CHART -5

44% of the respondents earn

a daily wage, with no regular

source of income. 14% of them

are either professionals, working

in the private or government

sector. Homemakers constitute

36% of the respondent sample

Majority { 96%} of the respondents have disclosed their HIV status.

Out of all the mothers who have disclosed their HIV status, 83% of women have disclosed their status to their partner.

4% of them have not disclosed their status to any person in their homes.

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CHART 6

CHART - 7

Among 94% of the

respondents who

responded to the

question; ,majority (79)

have undergone

institutional delivery.

NVP or AZT prophylaxis

was administered for majority

of both mother and child pair.

29% of deliveries are done

without administering any

prophylaxis both mother and

child.

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CHART- 8

The Children in the sample:

All children below 3 years of age who were born after the mother knew of her HIV status were included in the study. Data about only those children were gathered for the study. Although details {names, sex,age} of all children were taken, data about feeding practices of those children who were born before the mother knew the HIV status were not considered for the study. Data collection of the 104 children included directly taking their heights and weights. This was undertaken for a general understanding of whether malnutrition did exist. However the present study did not go into details to associate malnutrition with the type of feeding practice, although raw data did exist. One assumption made was that weighing scales in all the care centres are standardized.

Among the respondents, who

delivered in health care settings, 78%

received NVP prophylaxis to both

mother and child. 18% have not

received any prophylaxis.

Majority of the children are malnourished. More number of girl children{73%} are malnourished compared to boys{ 57%}.

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Data Collection

In-depth interviews to the mothers and Focus Group Discussions for the peer counselors in the Positive network and Drop In Centres was used as data collection tool and process. The samples of women were selected from various CCC, PPTCTs and ART Centres both from private and Government sectors. Non governmental organisations such as Freedom Foundation, Indira Gandhi Institute of Child Health, Milana and Accept, KNP+DIC, and District Positive networks in 9 districts of Karnataka participated in obtaining consent and getting the mothers for the study. Written consent form assuring anonymity of responses and identity was provided to all respondents in the regional language too.

Tools for Data Collection

Interview schedule:

An interview schedule was prepared to assist in data collection. The following were the topics covered in the interview schedule.

Section I: General Information covered socio-demographic details, number of children and HIV status, details of HIV status of the respondent, questions to assess Access To Basic HIV Services, morbidity history of family member during the last two years

Section II: Feeding Practices of Children under three

This section contained open ended questions regarding the General History of the child, Advice received about feeding practices, type of feeding practice/ adopted for the specified child {under three year old child exposed infected or affected by HIV} viz., exclusive breast feeding- exclusive/ mixed and exclusive replacement feeding . The section also covered the weaning process, health status of child and Health Seeking Behaviour

Section III: General information on nutrition from mothers covered questions to assess Malnutrition and HIV and general knowledge on basic nutritional tips on nutrition for children below 3 years of age.

Section IV: Self Stigma Assessment was a self stigma assessment closed ended tool.

Procedure of data collection:

Four program officer staff of INSA-India was trained for data collection using the tools. The research group interviewer introduced the topic and purpose of the study to the respondents. Strict confidentiality was assured to the respondents in answering the questionnaire saying that the information furnished by the respondents and results of this research well be reported in statistical form to preserve strict anonymity. The consent form was translated in regional language and was explained before given to the respondents . They placed their signature to indicate consent before interview. An amount of Rs. 150/- was paid towards a day’s wage. The questionnaire/interview schedules were prepared in English. This was administered to the

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respondents by the INSA-India trained staff interviewer in the language of their choice in Kannada, Tamil, Hindi and Telugu and filled in the questionnaire/ interview schedules in English. The data collection from 104 mothers and focus group discussions was done from February 2010 to September 2010. 7 Focus group Discussion format with questionnaires were administered to PMTCT, DIC, and district Network peer counselors.

Methods of data processing:

The data obtained was classified and coded for analysis. Both open ended and closed questions were classified into different categorized and the frequency of each item was tabulated. Dummy tables were prepared to highlight the findings of the analysis.

Plan of Analysis

Selective sampling techniques were used to identify mothers who have children below the age of three after knowing that the mothers are living with HIV infection. Information collected through semi structured interview cum questionnaire schedules were collated and analysed both quantitatively and qualitatively as per the objectives of the study. A specific framework based on the interview schedule was developed using MS Excel and SSPS programmes. All data were entered into the framework to facilitate analysis of information provided by respondents. Data entry and checking was done jointly by YRG-Care, Chennai and INSA-India staff and was passed through the Research Advisory Committee before adoption. At the end of analysing data from the first 6 respondents and generating a report, an analysis of emerging data highlighted the gaps in the interview schedule or methods for data entry.

With adaptations made based on those findings, the interview schedules were administered to the remaining 104 mothers. Based on recorded anonymous data, cross linkages between specific parameters (for example, influencers of feeding practices – family, medical staff etc. and health status of children) mentioned in interview schedule were analysed using percentages and statistical inferences in order to work out possible interventions. Both quantitative and qualitative determinants was highlighted and arrived analyses using percentages, T value of significance depicted in tables and graphs. Case studies of specific respondents were also documented to highlight variation in feeding practices and resultant outcome in health status of child.

Time Frame

The research was done from October 2009 to November 2010.

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Setting: The study was undertaken HIV care settings in the state of Karnataka, India. The respondents are from Bangalore rural and urban and from other 9 districts. The sites where the data was collected were as follows: Drop In Centre - KNP+ Bangalore; Milana, Accept, ASHA Foundation and Freedom Foundation are all Bangalore based NGO care centres; The following networks participated in the study too, viz., Deepa Jyothi Network, Udupi; Jeevanjyothi Network Mudhol; Jeevanmukthi Network Hubli; Hongirana Network Mangalore; Spandana Network Belgaum; Sankalpa Network Bijapur and Jeevan Asha Network , Kolar. The apex child care institution in Bangalore , Indira Gandhi Institute of Child Health, Bangalore [IGICH] Bangalore also permitted data collection and aided with finalizing the concept note.

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CHAPTER 4

FINDINGS, ANALYSIS AND INTERPRETATIONS

A total of 104 mothers who cared for 105 children were part of the study group. The graphs, tables below depict the key findings of the study.

CHART- 9

In alignment with WHO’s new protocol for infant feeding vis a vis HIV, 76% of the respondents agreed that exclusive breast feeding for six months helps to prevent common infections, like diarrhea and respiratory problems. 96% correctly stated that eating green vegetables increases the body’s resistance power. Respondents also answered correctly in varying capacity that using minimal water while cooking is advisable{63%}, not washing vegetables after cutting them{47%} , boiling vegetables with their skin on{ 70%} , boiling egg in cold water{55%}, mixing cereals and pulses together in cooking{ 76%} and washing rice in less amount of water{90%}.

The chart implies that although correct information does exist, mothers need reinforcement on nutritional tips and feeding practices to ensure universality of the sample with correct information. This is critical since each of the respondents is a mother/care giver of a child who was exposed, infected or affected by HIV .

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Feeding practices of children under three exposed, infected and affected by HIV

CHART- 10 CHART 11

Out of 105 children, only 16% (17) have been exclusively breast fed for the first six months of life, 28% (29) were mix- fed and 56% (59) were reportedly given exclusive replacement feeding.

The national and WHO guidelines had less influence on the mothers’ practice of feeding choices for their exposed baby. Fear of infecting their little one had more power than scientific data on the advantages that exclusive breast feeding had to offer. The study also depicts that although mothers reported they were given advice on nutrition, {81%] there were 28% of the total sample that mix-fed their baby.

One mother shared, “ I was counseled on exclusively breast feeding my child for the first six months. I was planning to listen to this advice. However, when I was coming out of the centre, I saw the poster on the different ways HIV infection is transmitted. Breast milk was mentioned there. Hence I refused the advice and opted for replacement feeding”

Chart 8 depicts that 81% of them had received nutritional counseling. However another respondent mentioned, “ I received the counseling on feeding practices. But who is going to listen to that young man {counselor} about feeding practices?”

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CHART - 12

A total number of 53 boys and 52 girls below the age of 3 were part of the study. Among the total number of 17 mothers who chose to exclusively breastfeed, it can be observed that, more number of boys are breast fed (71% out of 17 totally breast fed) compared to girls(29%).

Majority of children are given exclusive replacement feeding and the number of girls who are on exclusive replacement feeding compared to boys is high (boys- 46%, girls- 54%). Part of the reasons observed included the organization policy of the care giving site promoting replacement feeding.

Of concern is that 29 of the 105 children were made more susceptible to HIV infection since mixed feeding was practiced. The need to educate all mothers about the consequences of mixed feeding needs to be strengthened.

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Summarized below are key findings of the feeding practices and sex distribution

CHART- 13

The chart depicts a marginal number of girls {30%} are likely to receive replacement feeding compared to boys {25.7%} . Am equal number of boys and girls {14 each} were fed mixed feeding. A small sample of girls {4.8% and boys {11.4%} were exclusively breast fed for the first six months.

Exclusive replacement feeding: 32(30.5%)

Boys: 53 (50.5%)

Exclusive breastfeeding: 12 (11.4%)

Mixed feeding: 14 (13.3%)

Exclusive replacement feeding: 27(25.7%)

Total number of children participated in the

study

Sex of the child and feeding practice

Girls: 52 (49.5%)

Exclusive breastfeeding: 5 (4.8%)

Mixed feeding: 14 (14.3%)

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The findings imply more scope for nutrition education on exclusive breast feeding using WHO’S latest protocols and national guidelines. There was no significant difference of the choice of replacement and mixed feeding practices based on sex of the child. However, boys were more likely to be exclusively breast fed than girls.

AN INSA-INDIA OBSERVATION

All respondents were under the care of specialised HIV care and support services. We were able to contact them only through these service links. Yet, we find that , irrespective of the sex of the child, irrespective of the bias some of the organisations had towards exclusive replacement feeding, mothers practiced mixed feeding in large numbers for their children.

It hence is imperative that:

~A need to design behaviour change communication strategies to stress on the dangers of mixed feeding in our counseling and reinforcement strategies is needed

~Mothers urgent need for antiretroviral therapy is vital to the success of the PPTCT program

Key findings and relationship of feeding practices and other factors:

CHART= 14

It was observed that there is an increase in the level of breastfeeding as the education level of the respondent goes up to high school and drops once again for college going mothers undertaking the baccalaureate or post graduate courses. Of concern is that the educational qualifications had no significance with the choice of mixed feeding practiced.

This implies the urgent need for the consequences of mixed feeding in relation to increased vulnerability of HIV infection to be undertaken for all mothers irrespective of their educational qualifications.

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CHART- 15

CHART- 16

Well informed suggestion to breastfeed was seen as a primary support for exclusive breastfeeding

This implies the need to strengthen counseling on feeding practices in existing set ups. Some received both suggestions and counselling

Implications include shifting paradigms for feeding practices from a cultural perspective to a health perspective for promoting well being of the child.

Doctor and the mother of the respondent were seen as major support for exclusive breastfeeding. Husband and nurse were also identified as important supports.

Implications include including nutritional education as basic and mandatory in all staff levels and cadres.

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CHART -17

v Suggestion of not to breastfeed was considered as a major obstacle for exclusive breastfeeding. Fear of infection and illness of husband were also among the mentioned obstacles.

v 59% of the respondents who have chosen to breastfeed faced no obstacles

CHART - 18

Mother in law and in

laws were seen as a

major obstacle for

exclusive breastfeeding.

However, few of them

have also specified

mother, counselor

husband and doctor as

Emotional support, suggestion to bottle feed , food advice along with financial support was considered major support to continue exclusive replacement feeding.

The present enablers for mothers choosing exclusive replacement feeding for their child do not significantly include ‘fear of infection’ as was the premise.

This implies that the care giver organization has a significant role to play in the choice to replacement feed. However, how sustainable will this be once the care giver organisation’s project ends?

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CHART- 19

CHART - 20

.

Mother of the respondent {17 out of 59} was the major support for exclusive replacement feeding. Doctor counselor and husband’s support were also major among the respondents.

Sustaining exclusive replacement feeding is as important to avoid resuming mixed feeding.

This has implications of including the wider family circle without breaking the circle of confidentiality

47% of the respondents faced no obstacle for exclusive replacement feeding. Among the respondents, frequent questions and comments from neighbors, relatives (52%) and financial difficulty (39%) were listed as the major obstacles

Sustaining counseling on the exclusive replacement feeding continuing is essential in the first few weeks when replacement feeding is begun to ensure its adherence. Need for mothers to manage the natural flow of breast milk and avoid abscess needs to be worked into the program.

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CHART - 21

CHART - 22

Extended family and neighbors were found as the major obstacles for exclusive replacement feeding.

Implications of this data are in congruence with other studies that depict the conflicts of stigma, non disclosure of status and feeding practices.

Feeding practices need to be worked on using a wider lens that addresses stigma too

Preparing food, financial support and taking care of the child were seen as major factors supporting mixed feeding in the family.

Implications include the need to strengthen information flow on the consequences of mixed feeding.

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CHART - 23

CHART- 24

Mother and mother in law/ in-laws and husband offered support to most of the mothers who practiced mixed feeding for their child.

There are still gaps in the uptake of the WHO feeding protocol for children, which needs to be addressed. The child cannot wait!

It would be possible for this to be addressed within a group counseling program since most of the people influencing mothers for mixed feeding are primary care givers of the mother post delivery .

Significant number of widows have chosen to mix feed their children (42%) compared to married women (24%); Whereas, majority of married (60%), widowed(47%) and separated women have chosen to provide replacement feeding to their children. Exclusive breastfeeding was found more among married women (16%of married women consisting of 76% of the total exclusively breastfed mothers)

The marital status of respondents had no significance with the choice of their feeding practice. Once again of concern is the fact that mixed feeding was practiced across the sample regardless of marital status.

Implications for this finding include the need for tailor making the nutrition education based on national and WHO protocols and offering it to all mothers irrespective of their marital status.

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CHART - 25

Exclusive replacement feeding is chosen by majority irrespective of the number of children they have. (52% among mothers of one child, 57% among mothers of 2 children, 66% among mothers of 3 children and 60% among the mothers of 4 children).

This finding implies that choice of whether to exclusively breast feed, mix feed or replacement feed is not related to the number of children that mother has.

The priority for ART inclusion in PPTCT, PNC is critically required

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CHART- 26

CHART- 27

Irrespective of the income, majority

of the respondents have chosen to

feed exclusive replacement feeding.

This chart implies that income does

not determine choice of feeding

practice adopted

Of the 105 children in the study,

55% of them were reported to have

faced a health challenge in the past

six months.

With health and nutrition having a

positive influence on each other, the

need for integrating services for the

two is an area to be explored.

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CHART- 28

.

HIV Status Exclusive Breast

feeding (in percentages)

Mixed feeding (in percentages)

Exclusive replacement feeding (in

percentages)

HIV +ve 25 54 21

HIV -Ve 7 27 67

Don't know 18 14 69

Total (in percentages) 100 100 100

It is significant to note that 25% of children who were reportedly exclusively breast fed and 21% of children who were reportedly exclusively replacement fed are presently living with HIV infection. The implications could be that although the mothers know the definitions of exclusively ‘breast fed’ or ‘exclusively bottle fed’ , there is more mixed feeding happening than reported. This concern highlights the need for mothers to be put on ART regardless of what feeding option they choose/report choosing.

Majority of children who are mixed fed are infected with HIV(54%). Majority of the children who are fed exclusively on replacement food are not HIV infected. Majority of the children whose HIV status is yet to be diagnosed have opted for exclusive replacement feeding

This implies an urgent intervention is required for sensitization of mothers and care givers on the consequences of mixed feeding more vigorously and more strategically

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CHART- 29

CHART 30 Self stigma and its relationship to feeding practices:

In a study undertaken on selected HIV positive speakers from Karnataka, INSA India came out with a finding that 47% of them experienced self stigma38. The association of self stigma and feeding practices were part of this research study. The study attempted to find out their HIV status and feelings of guilt , their feeling about socializing, feelings about being a mother , about having children and their idea of whether that was a blessing, and according to them how important they felt they were int heir child’s life. Further the study attemped to glean their feelings of guilt regarding breast feeding or not breasting their child/ren.

The key findings are shown as the each of these above statements in Chart 30 below.

38 INSA-India Action Research report on HIV and AIDS Related Stigma{2008}, undertaken by Catalyst Management Services,

support by NACO-UNDP, INSA-India, Bangalore.{unpublished}

Out of all the respondents, a majority {53%} feels that counselors are the right people to guide them on feeding practices, a significant minority feel that doctors {32%} will be able to assist mothers in choosing better nutrition. Only 7 respondents recommend ORWs.

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Majority of the mothers do not feel guilty about living with HIV infection. However there is an association between feeling of guilt is seen among mothers and their choice/practice of not breastfeeding their children.

Majority of women feel they are the most important people in their child’s life and feel blessed to have a child/children.

Counseling and empowerment of mothers requires an input to ensure that they do not feel guilty because of their HIV status, they feel good about being a mother since these are associated with their feeling of disempowerment to ‘demand for services, facilities and support for child care’ {48%} and enjoy their choice of either feeding or not breast feeding their child.

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Chart 31: Self Stigma among respondents

Majority of the respondents reported not experiencing self stigma . The prevailing stigma and discrimination climate makes them try hard to keep their HIV status a secret. 19% reported feeling worse about themselves because they are living with HIV. There is still so much that needs to be done in the HIV care settings to address self stigma . Would their answers been the same if they do not have HIV infection? Women in general are socialized with low self concepts about ‘feeling good about them’ .The scope of this research is limited to find other associations regarding this.

Nearly 50% of the respondents feel worse about self because of their HIV status, in spite of being attached to a support group, HIV care centre. Care givers in these facilities do know them. They have all undergone counseling. This research then throws light on finding solutions to the gaps found in service delivery or service design. The research throws up more questions about other variables, the respondents experience. Is it their change of hormones that make them more sensitive about themselves? The research did not delve further, however.

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CHAPTER 5

Recommendations from the study

There exists a need for an improved follow up of the pregnant mothers, after delivery and the infants. The doctors and counselors have an important role in helping women in their intended feeding choice as well as actual practice. The time immediately after delivery was noted as critical for re-counseling about infant feeding and further support of the woman’s decision, thus lowering the risk of mixed feeding.

A uniform and a consistent correct feeding practice messages to mothers during and after delivery is needed because many mothers expressed that they were confused by the contradictory messages they received from different stakeholders peer counselors, network, PPTCT, doctors, nurse, lab technician etc.

Different stakeholders need to be appropriately trained, so that infant feeding messages clearly told to mothers; by a trained and an experienced person not by a young unmarried man as expressed by a mother during the data collection.

There is an added need to empower communities and connect communities with the consequences {negative} of mixed feeding and bring the findings of the study to be mainstreamed into interventions for the Childhood Malnutrition Eradication Program. Key activities that need to happen at balwadies, crèches and under five care settings, need to mainstream nutrition education while monitoring infant growth rates and help delivering vital micronutrients that enhance the nutritional value of food and have a profound impact on a child’s development and a mother’s health

There is a need to promote good hygiene, and food and water safety provide growth monitoring and insisting that HIV-infected children are at high risk for growth failure body weight, height should be monitored regularly (at least monthly). Providing treatment for severe malnutrition as many children exposed, infected or affected are likely to become severely malnourished. Local guidelines for the management of severe malnutrition should be followed.

Mothers living with HIV infection need to be counseled on the risks and benefits of different infant feeding options and should be helped to select the most suitable option for her situation.

Mothers living with HIV infection need be advised by health workers on all options available to reduce HIV transmission to the baby while maintaining the health status of their children.

In brief recommendations emerging out the study are as follows:

1. Out of 105 children, only 16% (17) have been exclusively breast fed for the first six months of life, 28% (29) were mix- fed and 56% (59) were reportedly given exclusive replacement feeding . Although correct information about nutrition does exist among the respondents, mothers need reinforcement on nutritional tips and

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feeding practices to ensure universality of the sample with correct information. This is critical since each of the respondents is a mother/care giver of a child who was exposed, infected or affected by HIV.

2. The study also depicts that although mothers reported they were given advice on

nutrition, {81%] there were 28% of the total sample that reported that they mix-fed their baby. There is a need to standardize nutrition education especially about feeding options to mothers and their families.

3. A total number of 53 boys and 52 girls below the age of 3 were part of the study.

Among the total number of 17 mothers who chose to exclusively breastfeed, it can be observed that, more number of boys are breast fed (71% out of 17 totally breast fed) compared to girls(29%). The need to include gender education as part of the counseling is priority.

4. All respondents were under the care of specialized HIV care and support services.

We were able to contact them only through these service links. Yet, we find that, irrespective of the sex of the child, irrespective of the bias some of the organisations had towards exclusive replacement feeding, mothers practiced mixed feeding in large numbers for their children.

It hence is imperative that:

~ A need to design behaviour change communication strategies to stress on the dangers of mixed feeding in our counseling and reinforcement strategies is needed

~ Mothers urgent need for antiretroviral therapy is vital to the success of the PPTCT program

The educational qualifications had no significance with the choice of reported mixed feeding practiced. This implies the urgent need for the consequences of mixed feeding in relation to increased vulnerability of HIV infection to be undertaken for all mothers irrespective of their educational qualifications.

5. Emotional support, suggestion to bottle feed, food advice along with financial

support was considered major support to continue exclusive replacement feeding. The present enablers for mothers choosing exclusive replacement feeding for their child do not significantly include ‘fear of infection’ as was the premise. This implies that the care giver organization has a significant role to play in the choice to replacement feed.

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However, how sustainable will this be once the care giver organisation’s project ends? It is imperative for care giver organisations to plan sustainability of advice for the mothers undertaking exclusive replacement feeding through fund raising options irrespective of whether they have a project continuity or not.

6. Mothers of the respondents {17 out of 59} were the major support for exclusive

replacement feeding. Doctor counselor and husband’s support were also major among the respondents. Sustaining exclusive replacement feeding is as important to avoid resuming mixed feeding. This has implications of including HIV care and support providers structuring the inclusion of the wider family circle without breaking the circle of confidentiality.

7. 47% of the respondents faced no obstacle for exclusive replacement feeding.

Among the respondents, frequent questions and comments from neighbors, relatives (52%) and financial difficulty (39%) were listed as the major obstacles Sustaining counseling on the exclusive replacement feeding continuing is essential in the first few weeks when replacement feeding is begun in order to ensure its adherence. The need for mothers to manage the natural flow of breast milk and avoid abscess needs to be worked into the programme.

Mothers and mothers in law/ in-laws and husband offered support to most of the

mothers who practiced mixed feeding for their child. There are still gaps in the uptake of the WHO feeding protocol for children, which needs to be addressed. The child cannot wait! It would be possible for this to be addressed within a group counseling program since most of the people influencing mothers for mixed feeding are primary care givers of the mother post delivery.

8. Significant number of widows have chosen to mix feed their children (42%)

compared to married women (24%); Whereas, majority of married (60%), widowed(47%) and separated women have chosen to provide replacement feeding to their children. Exclusive breastfeeding was found more among married women (16% of married women consisting of 76% of the mothers who reported total exclusive breastfeeding their children who were exposed at birth to HIV)

9. The marital status of respondents had no significance with the choice of their

feeding practice. Once again of concern is the fact that mixed feeding was practiced across the sample regardless of marital status.

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Implications for this finding include the need for tailor making the nutrition education based on national and WHO protocols and offering it to all mothers irrespective of their marital status.

10. Exclusive replacement feeding is chosen by majority irrespective of the number of children they have. (52% among mothers of one child, 57% among mothers of 2 children, 66% among mothers of 3 children and 60% among the mothers of 4 children). This finding implies that choice of whether to exclusively breast feed, mix feed or replacement feed is not related to the number of children that mother has. The priority for ART inclusion in PPTCT, PNC is critically required.

Irrespective of the income, majority of the respondents have reportedly chosen to

exclusive replacement feeding for their children exposed at birth to HIV. Of the 105 exposed to HIV at birth {some of whom are affected or infected} children in the study, 55% of them were reported to have faced a health challenge in the past six months. With health and nutrition having a positive influence on each other, the need for integrating services for the two is an area to be explored.

11. It is significant to note that 25% of children who were reportedly exclusively breast fed and 21% of children who were reportedly exclusively replacement fed are presently living with HIV infection. The implications could be that although the mothers know the definitions of exclusively ‘breast fed’ or ‘exclusively bottle fed’, there is more mixed feeding happening than reported. This concern highlights the need for mothers to be put on ART regardless of what feeding option they choose/report choosing. Further, an urgent intervention is required for sensitization of mothers and care givers on the consequences of mixed feeding more vigorously and more strategically.

Out of all the respondents, a majority {53%} feels that counselors are the right people to guide them on feeding practices, a significant minority feel that doctors {32%} will be able to assist mothers in choosing better nutrition. Only 7 respondents recommend ORWs. Nearly 50% of the respondents reportedly feel worse about self because of their HIV status, in spite of being attached to a support group, HIV care centre. Care givers in these facilities do know them. They have all undergone counseling. This research then throws light on finding solutions to the gaps found in service delivery or service design. The research throws up more questions about other variables, the respondents experience. Is it their change of hormones that make them more sensitive about themselves? This research did not delve further, however.

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12. Majority of the mothers do not feel guilty about living with HIV infection. However there is an association between feeling of guilt is seen among mothers and their choice/practice of not breastfeeding their children. Majority of women feel they are the most important people in their child’s life and feel blessed to have a child/children. Counseling and empowerment of mothers requires an input included to ensure that they do not feel guilty because of their HIV status, they feel good about being a mother since these are associated with their feeling of disempowerment to ‘demand for services, facilities and support for child care {48%}’ and enjoy their choice of either exclusively feeding or not breast feeding their child. This will ensure that their feelings of guilt does not spur them to mix feed their child.

In conclusion, HIV care and support centres, drop in centres and other HIV related services need to highlight the consequences of mixed feeding on the children exposed, infected and affected by HIV more constructively and with added focus than is presently happened. The urgent need to mainstream ART universally accessible and adherence for mothers living with HIV cannot be more understated.

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1. REVISING THE FEEDING PRACTICE MESSAGE WITH KEY POINTS

• Stress the advantages of breast feeding Out of 105 children, only 16% (17) have been exclusively breast fed for the first six months of life The national and WHO guidelines had less influence on the mothers’ practice of feeding choices for their exposed baby. Fear of infecting their little one had more power than scientific data on the advantages that exclusive breast feeding had to offer. That one out of every three babies die of diarrhoeal diseases and respiratory infections if NOT breastfed is not stressed .

• Highlight the harmful effects of mixed feeding

The study also depicts that although mothers reported they were given advice on nutrition, {81%] there were 28% of the total sample that mix-fed their baby.

2. CONSISTENT AND UNIVERSAL MESSAGE ON FEEDING PRACTICES To prevent mothers from mix feeding their babies . Interactions with mothers have brought out the fact that while some of the care givers stressed on the ‘exclusive breast feeding theme’ others not only stressed on ‘exclusive replacement feeding’ but gave mothers the replacement feeding packs. The end result could have been confusion for the mothers who may have then chosen mixed feeding.

• Gender sensitization is necessary to impact on positive feeding practices

• The chart depicts a marginal number of girls {30%} are likely to receive replacement feeding compared to boys {25.7%} . Am equal number of boys and girls {14 each} were fed mixed feeding. A small sample of girls {4.8% and boys {11.4%} were exclusively breast fed for the first six months.

• The findings imply more scope for nutrition education on exclusive breast feeding using WHO’S latest protocols and national guidelines. There was no significant difference of the choice of replacement and mixed feeding practices based on sex of the child. However, boys were more likely to be exclusively breast fed than girls.

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Limitations of the Study:

The data collected has potential for more analysis to garner significant findings related to stigma and HIV as well as malnutrition and feeding practices. The study was limited to those mothers attending services provided at the drop in centres, and HIV care and support designated centres in Karnataka.

Recommendations for further study

The present data collected from 105 mothers include the focus group discussions undertaken with 7 institutional counselor/care giver population. Further analysis on linking the findings from respondent analysis can be undertaken.

Scale up of the study in other areas would garner concrete evidence for policy development incorporating feeding practices for promoting children’s health and survival.

Relationship between:

• Micronutrient intake and feeding practices, and its relation to malnutrition can be further studied.

• The capacities of institutional care givers vis a vis feeding practices education and malnutrition , the relationship and content of counseling mother receives and her actual feeding practice adopted can further be studied too.

• There is an urgent need to study the communication techniques that will work to ensure that mixed feeding does not happen.

Conclusion

Studying enablers and barriers to mothers choosing and practicing exclusive breast feeding, exclusive replacement feeding and mixed feeding, confirms certain assumptions made. However the study covering a large sample from across the state, sheds a glimpse of the importance for incorporating the facilitation of safe feeding practices for the health of already compromised children exposed, infected or affected by HIV. Hard evidence now exists for the urgent need for all mothers living with HIV infection to have universal access and support for HIV care, ART adherence, positive prevention and positive living to counter the back tracking of the present PPTCT programs outcomes.

INSA India places on records its acknowledgement of the each mother and the children that participated in the study who spent their valuable time sharing their life experiences, even though the research captured just the essence of the feeding practices they reported. Their sharing form the crux of GIPA for formulating and re-structuring the programs promoting infant and child feeding practices of children exposed, affected and infected with HIV.

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Further References used

1. Dharmarak Pratin, Flanagan Donna and Dunbar Mary. Staying healthy: for mothers living with HIV. Self series: Book Four, Cambodia program funded by USAID and Family Health International.

2. Rieff, David "India's Malnutrition Dilemma". (2009-10-11). Source: New York Times Magazine. http://www.nytimes.com/2009/10/11/magazine/11FOB-Rieff-t.html. Retrieved on 02.13.2009.

3. Caitlin McQuilling. India: Progress Report for Malnutrition Initiative: August 31st, 2010 September 15, 2010 by The Real Medicine Foundation {2005}

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Annexure-1

CONCEPT NOTE APPROVED BY ETHICAL CLEARANCE BOARD

A Study on the Feeding practices of children under three years exposed; Infected and affected to HIV

Introduction

The overwhelming source of HIV infection in young children is mother-to-child transmission. The virus may be transmitted during pregnancy, labour and delivery, or by breastfeeding (UNAIDS, 2000). In 2005, the National AIDS Control Organization has dramatically increased access to antiretroviral therapy for children, and several thousands of children have been successfully initiated on specific anti-HIV therapy. However, background co-morbidities compound the problem in affected populations in India. Two such major co-morbidities include anaemia and poor nutrition, whose detrimental effects are magnified in the context of HIV infection39. More than half of all child deaths are associated with, which weakens the body's resistance to illness. Poor diet, frequent illness, and inadequate or inattentive care of young children can lead to malnutrition. HIV/AIDS and malnutrition are interrelated. Research suggests that malnutrition increases the risk of progression of HIV infection, and it may also increase the risk of HIV transmission from mother to baby. In turn, HIV infection makes malnutrition worse through its attacks on the immune system and its impact on nutrient intake, absorption and the body's use of food. Malnutrition associated with HIV infection has serious and direct implications for the quality of life of people with HIV/AIDS. In addition opportunistic infections may develop at different stages in childhood with visible manifestations such as growth retardation . Many of these infections in turn can lead to malabsorbtion and malnutrition. Several studies have been conducted in relation to Paediatric HIV, malnutrition and opportunistic infections. However many of these are clinical in nature, focus on statistics and do not include data of a qualitative nature that can be used to develop guidelines and manuals to train laypersons and NGO staff on the impact of malnutrition in children exposed to HIV

The International Services Association is committed to the vision of ‘A Just Society living with Health and Development’. As a trainer organization, INSA-India offers training opportunities for all levels of staff working in registered organizations addressing community health and development issues to reach the Millennium Development Goals. INSA-India is one of the lead organizations in pioneering work for HIV and AIDS prevention, care and support programs that include HIV mainstreaming, and children at risk, and gender, sexuality and rights programs in India.

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As a result of INSA-India’s training and unique individual follow-up services at the site of the participants, successful health and development programs which are culturally appropriate and cost effective have been established in remote and rural as well as urban areas of India, Nepal and Bangladesh. Objective of the Study To understand the feeding practices of children under three exposed to HIV in particular the study seeks to

• Describe feeding practices of under three exposed, infected and affected by HIV

• Determine the prevalence of malnutrition among exposed, infected and affected children

• Understand the processes of exclusive breast feeding; mixed feeding and exclusive replacement feeding for exposed children

• Understand enablers and barriers to the above feeding options.

• To identify, disseminate and pilot cost effective sustainable strategies based on

findings.

Methodology

A sample size of 75 Mothers Living with HIV having children {after they knew their HIV status} in the age group below three will be considered. In-depth interviews using a standardized interview schedule and focus group discussions with institutional care givers on feeding practices will be used as methodology. The sample of women will selected from various CCC, PPTCTs and ART Centres both private and Govt., Freedom Foundation, Asha Kirana, Positive networks and their Drop In Centres, Indira Gandhi Institute of Child Health, Milana, Arunodhya on second Saturday, Swati Mahila Sangha and St. John’s Academy of Health Sciences hospital in Bangalore. Written consent form assuring anonymity of responses and identity to be provided to all respondents and families in the regional language too.

Plan for Analysis Selective sampling techniques are used to identify mothers who have children below the age of three after knowing that they [mothers} are living with HIV infection. Information collected through semi structured interview schedules will be collated and analyzed both quantitatively and qualitatively as per the objectives of the study.

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A specific framework based on the interview schedule will be developed using MS Excel programme. All data will be entered into the framework to facilitate easy analysis of information provided by respondents. Data entry will be the joint responsibility of the external consultant and INSA staff and will be passed through the Research Advisory Committee before adoption. At the end of analyzing data from the first ten respondents and generating a report, an analysis of emerging data will highlight the gaps in the interview schedule or methods for data entry. With adaptations made based on these findings, the interview schedules will be administered to the remaining 65 mothers. Based on recorded anonymous data, cross linkages between specific parameters (for example, influencers of feeding practices – family, medical staff etc. and health status of children) mentioned in interview schedule will be analyzed using percentages and statistical inferences in order to work out possible interventions. Both quantitative and qualitative determinants will be highlighted and arrived analyses using percentages, chi square and values of significance will be depicted in tables and graphs. Case studies of specific respondents will also be documented to highlight variation in feeding practices and resultant outcome in health status of child. The analysis will culminate in a detailed research report that presents findings of the study. Time Frame

All data will be collected and collated by end of February, 2010 and Analysis and report will be completed by end of March 2010.

Scope and limitation Scope of the study

1. The study is not clinical based but studies the relevant social drivers of malnutrition from the perspectives of mothers.

2. Study focuses only on feeding practices of the exposed, infected and affected children under three years of age as expressed by their mothers

3. Mothers involved in the study will be identified from those contacted through institutions and networks in Bangalore.

Limitations

1. The study is conducted in Bangalore in selected centres 2. The samples are mothers who are accessing care from service delivery centres 3. It is not an in-depth analysis of feeding practices. However, the study can be

used for further research or program development and can be replicated in other cities and rural areas

4. The study does not reflect the performance and quality of the services provided by any organization involved in the study.

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Research Team The research will be conducted by the external consultant, Mrs. Priya Anand with support from the INSA team. The external consultant will be responsible for preparation of the concept note, questionnaires, data collection (in conjunction with INSA staff), analysis and report writing. Rev Selina Devahi, Program officer INSA India will coordinate the research work. Over all guidance will be provided by a Research Advisory Committee consisting of Ms Lakshmi from KNP+ deputed by the KNP+ President Ms. Saroja Puthran, Dr Troy Cunningham from Engender Health, Dr Chandrasekhar Gowda from Swasti, Mr. Saud Akhtar from SAN-SIP and INSA team. Dissemination The report and subsequent guidelines and manual will used as a tool for developing programmes that partner with mothers living with HIV infection to address malnutrition among children at programmatic levels, and will be published and disseminated both online and in print to various organizations and the government working on HIV issues through INSA Resource Centre for building advocacy and scaling up pilot interventions. Partnership with RAC and organizations participating in the Study will be invited to develop onward plans incorporating the findings and learnings from the study

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Annexure-2

QUESTIONNAIRE FOR FOCUS GROUP DISCUSSIONS

Study on Feeding Practices of Children under 3 years of age exposed, infected and affected by HIV

Name of interviewer: Date: Place: Code #:

Name of the Person in charge of the data collection site with designation and contact details Instructions: This FGD tool focuses on counselors’ feedback to 4 Sections.

Section 1: General Information

Section 2: Child Based information on feeding practices

Section 3: General Information on Nutrition

Section 4 Feeding Practices

It is to be administered to counselors and other staff in facilities where mothers living

with HIV infection with children under the age of three, access care. Please ensure that

the purpose of the study and utilisation of information provided is shared with

respondent/s prior to participation in the study, their consent is confirmed and consent

form is understood and signed before the FGD begins. Only staff of INSA India along

with Ms. Priya Anand and those who have gone through the initial preparatory

workshop are eligible to collect data for this study. The FGD schedule is to be

administered in a local language (Kannada, Hindi, Tamil, Telugu or in a language the

respondent is comfortable with). The name of the respondent/s is optional and need

not be included, instead an FGD no will be assigned to responses of a particular

respondent. Please note – Response to all questions are open ended. If respondent/s is

unable to respond, use a prompt based on choices given below each question. All data

collected and the identity of the participants of the study and their children is kept

confidential. This is a subject of shared confidentiality therefore kindly maintain utmost

caution in sharing data. This FGD tool has 15 pages.

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SECTION 1: General Information {ensure that concept note is explained and consent form is signed before beginning}

1.1. Name of group/counsellors(optional):

1.2 Rate which according to you is the HIV related service to assist /guide mothers

for better nutrition of their children aged 0 to 3 years?

Sl. No

HIV related service Good {Name the person who should give this service}

Okay Poor Remarks

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1.3Access to Basic HIV Services

Where do you think mothers of children below 3 years go when they have problems related to HIV infection?

Give reasons Are these services available in any place you know of?

What are the reasons for them not accessing it from there, if at all?

1.4 According to you does illness of family members affect feeding practices of children below 3 years of age?

Name the family member who when ill negatively affects children’s feeding practices the most

Remarks

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Section II: Feeding Practices of Children under three Section two is specific to what the focus group‘s perceptions and opinions are about mothers and their feeding practices of exposed infected and affected children below three years of age

Advice given about feeding practices

2.1. a. Do you give any advice on feeding practices of children* below 3 years of age?

Yes No

2.1.b. if no why-------------------------------------------------------------------------------------------------

2.1. c. If yes, please state

Age of the child*

Who did you give advice to generally

When approximately

{while pregnant/after}

What advice given

Did you think the person implement/adopt the advice given

remarks

Advice given for child* below 6 months of age

Advice given for child* between 7months to 3 years

* exposed infected and affected children below three years of age

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2.2 Feeding practices: breast feeding- exclusive/ mixed and replacement feeding

2.2. a. Did you think mothers breast feed their children?

Yes No

2.2. b. What does breastfeeding mean to you?

Exclusive Mixed (probe on whether water was given in between breast feeds. If yes, tick mark here)

2.2. c. If exclusively breastfeeding why do mothers generally choose it as an option?

2.2. d. Who else encourages mothers to continue to exclusively breast feed-

_____________________________________________________________________

{Mother, health care worker, anganwadi worker etc

Inadequate information on the pros and cons of exclusive breastfeeding, Advice of …………..doctor/ PPTCT staff Fear of disclosure of status to family/ community Inadequate funds to purchase formula/ bottle feed and other supplements Non-availability of formula/ bottle feed Non-availability of time in preparing formula/ bottle feed Dependent on advice provided by family/ neighbours Other (specify)

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2.2. e. Name [according to you] the three strongest support that mothers need to continue exclusive breastfeeding

Sl.

No Support Person {who?} Remarks

2.2. f. Name [according to you] the three strongest obstacles that mothers face to

continue exclusive breastfeeding

S No Obstacles Person {who?} Remarks

2.2.g. If a mother feeds her child exclusively on breast milk, [according to your

experience] how do they follow exclusive breast feed? Exclusive

breast feeding options used

Till what age Remarks

Breastfeed the child

Express milk and then feed the child using a cup/ bottle etc

Use a wet nurse

Other (Specify)

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2.3 Replacement feeding.

2.3 a. Why do you think mothers choose replacement feeding as an option?

2.3 b. What [according to you] are the benefits that mothers think of for replacement feeding?

2.3 c. What [according to you] are the disadvantages that mothers think of for replacement feeding?

2.3 d. Name the strongest support that mothers get to continue exclusive replacement feeding?

Sl.

No Support Person {who?} Remarks

2.3 e. Name the three strongest obstacles that mothers face for replacement feeding S

No Obstacles Person {who?} Remarks

Advice of doctor/ PPTCT staff Fear of MCT of HIV through breast

feeding Self stigma Network education Other (specify)

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2.4 Mixed feeding 2.4. a. Why do you think mothers choose mixed feeding as an option? 2.4.b What according to you are the benefits that mothers think of for mixed feeding? 2.4.c .What according to you are the disadvantages that mothers think of for mixed feeding?

2.4. d. Name the strongest support that mothers get to continue exclusive mixed feeding?

Sl.

No Support Person {who?} Remarks

2.4 e. Name the three strongest obstacles mothers face for mixed feeding

S

No Obstacles Person {who?} Remarks

Advice of doctor/ PPTCT staff Fear of MCT of HIV through breast feeding Self stigma Network education Other (specify)

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2.5. Weaning Process

2.5.a. When do mothers generally begin foods other than breast milk for their babies?

2.5.b. How old was the child then. {Give age in months or years}

2.5.c. Did mothers also breast feed the child during that time? YES/NO

2.5. c. i) If yes, any reasons you have come across?-------------------------------------------------

---------------------------------------------------------------------------------------------------------------------

---------------------------------------------------------------------------------------------------------------------

---------------------------------------------------------------------------------------------------------------------

---------------------------------------------------------------------------------------------------------------------

2.5. c. ii) If NO any reasons you have heard from mothers?

________________________________________________________________________

________________________________________________________________________

________________________________________________________________________

________________________________________________________________________

________________________________________________________________________

________________________________________________________________________

2.5 d. When do mothers generally stop breastfeeding completely? {Give age of the

children}----------------------------------------------------------------------------------------------------

----------------------------------------------------------------------------------------------------------------

--------------------------------------------------------------------------------------------------------------

----------------------------------------------------------------------------------------------------------------

----------------------------------------------------------------------------------------------------------------

----------------------------------------------------------------------------------------------------------------

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SECTION 3

GENERAL INFORMATION ON NUTRITION

3. Malnutrition and HIV

3.1. Are you aware of the term malnutrition? What do you mean by

that___________________________________________________________________

______________________________________________________________________

______________________________________________________________________

3.2 Do you think the children you see are well nourished/. Okay/ malnourished generally? Write here _____________________________________________________________________ 3.3 What are the nutrition food make children below three years of age healthy?

______________________________________________________________________

______________________________________________________________________

______________________________________________________________________

3.4. Do you believe that there is a link between HIV and malnutrition?

Yes No Not sure Don’t know

3.4 a. Please provide reasons for any of the above given responses

_______________________________________________________________

_______________________________________________________________

_______________________________________________________________

_______________________________________________________________

_______________________________________________________________

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3.4 b. If there is a link between malnutrition and HIV, how can this be addressed? ________________________________________________________________________

________________________________________________________________________

________________________________________________________________________

________________________________________________________________________

_____________________________________________________________________

3.5 Some basic information on nutrition for children below 3 years of age

SINo Question True False 1. Breast milk given to a child exclusively for six months helps

prevent common diarrheas coughs and colds

2. Boil root vegetables {like potato} in their skins

3. Eating green leafy vegetables help increases body’s resistance to infections

4. Using minimal water and vinegar in cooking in advisable

5. It is good to boil eggs in cold water

6. Vegetables and fruits are to be washed thoroughly after cutting them

7. Boiling spoons or bottles is necessary when feeding the child cow’s milk or formula milk

8. Mixing cereals and pulses {Eg: rice and dhal} together in a meal is better than giving them at different times

9. Covering cooked food prevents contamination

10. It is good to wash rice in large amount of water

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SECTION 4

Counsellors skills on feeding practices

4.1 What training was you underwent/given for the nutrition advice you give mothers. Name the training/ Duration and by whom

4.2 Was that enough for you to counsel mothers on feeding practices? Yes/No/Partly Give reasons

4.3 What opportunities do you have for integrating counseling on feeding practices? Describe

4.4 How often is counseling on feeding practices done for a mother? /care giver?

4.5 Is each of these events of feeding practices counseling recorded? If so, describe?

4.6 What challenges do you have for counseling mothers on feeding practices

4.7 Who do you think is best to counsel mothers on feeding practices for it to be effective?

4.8 What more information is needed to help you with counseling on feeding practices?

4.9 What follow up support do you need for effectively counseling on feeding practices?

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4.10 Any other remarks related to feeding practices that will help us with addressing malnutrition of children exposed, infected and affected by HIV

Group details form S.No Name {optional} Age Sex Signature of consent

form explained and attached herewith

SIGN OF INTERVIEWER

DATE

PLACE

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Annexures-3

Sl. No.

Name Date Place Interviewer

1. 2. 3.

Munilakshmi Kokila Nagaveni

2nd Feb

KNP+ Bangalore

Agatha &

Selina Reena &

Shantha

4.

Kasturi

5th March

Chennai Accessing Care from ASHA

foundation, Bangalore

Shantha

5.

Anitha

5th March

Jeevan Asha Network

Reena and

Shantha

6.

Yashoda

11th March

Milana Bangalore

Shantha

7. 8.

Vimala Jatti Amala

12th March

Accept

Reena

Shantha 9. 10. 11.

Lalitha Leela Saroja

17th

March

Deepa Jyothi Network Udupi

Shantha

12. 13. 14. 15.

Geetha Akshatha Naseema Takamma

15th March 17th March

Hongirana Network Mangalore

Shantha

16. 17. 18. 19. 20. 21. 22. 23. 24.

Ranjana Kasturi Malagri Shanthawwa Neela Basvaraj Sanvakka Sevantha Pawer Shobha Basavaraj Fareen Yellavva

22nd March

Jeevanmukthi Network Hubli

Reena &

Shantha

25. 26. 27. 28. 29. 30. 31. 32. 33. 34. 35.

Mahadevi Shanthavva Pooja Mallava Lakshmi. S Mahadevi Ratna Saidava Sathyavari Jayashree Basavva

25th

March

Jeevanjyothi Network Mudhol

Reena &

Shantha

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70

36. 37. 38. 39. 40. 41. 42. 43. 44. 45. 46. 47. 48. 49. 50. 51.

Shantha A Kamate Manjula Sangeetha Rama Mahantesh Veena Prakash` Renuka Lakshmi maruthi Sangeetha Basav Madevi Lakshmi Lakshmi naik Nirmala Rajashree Mahadevi Dindappa Ganguthai Vaishali Shashikala

26th

March

Spandana Network Belgaum

Reena &

Shantha

52. 53. 54. 55. 56. 57. 58. 59. 60.

Sangamma Anasuya Mahananda Jyothi Savithri Pujari Sumithra Kavitha Arathi Parvathi

24th

March

Sankalpa Network Bijapur

Reena and Shantha

61. Shanthi 27th March Indira Gandhi Institute of Child Health, Bangalore

Selina

62. Noor Jahan 20th March IGICH Bangalore Shantha 63. 64. 65. 66. 67. 68. 69. 70. 71.

Ms. Jaya Ms. Meenakshi Ms. B V Manju Ms. Kamala Bai Ms. Punitha Ms. Manjula Ms. Roopa Ms. Ratnamma Ms. Veena

28th April

IGICH

Selina, Reena & Shantha

72. 73. 74. 75. 76. 77.

Sudha B V Sangeetha Devi Nandini N Mala Mumtaz Nandini Srinivas

25th May

Freedom Foundation

Bangalore

Selina and

Shantha

78. 79. 80. 81. 82. 83 84. 85. 86. 87. 88.

Nagarathna Devamma Indra Saraswathi Rathnamma Manjula Kanthamma Saritha (Age 21) Saritha (age 22) Lakshmi Prema

9th September

2010

Jeevan Asha Network Kolar

Agatha Charlet Selina

Shantha

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71

89. 90. 91. 92. 93. 94. 95. 96. 97. 98. 99. 100. 101. 102. 103. 104. 105.

Kalavathy Geetha Sumithra Paravathamma Vimala Nirmala Lakshmi (Age 20} Radha Nethrawathi Shobha Fareeda Banu Sharada Jayanthi. K Radha(26) Shobhana Shobhana Ashwathamma

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72

Annexures-4

GRAPHIC REPRESENTATION OF MALNUTRITION STATUS OF GIRLS EXPOSED, INFECTED AND AFFECTED BY HIV UNDER 3 YEARS OF AGE

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73

Annexures-4

GRAPHIC REPRESENTATION OF MALNUTRITION STATUS OF BOYS EXPOSED, INFECTED AND AFFECTED BY HIV UNDER 3 YEARS OF AGE

2010 The Mother and Child Health and Education Trust