FOLLOW UP STUDY OF PREVENTION OF MOTHER TO CHILD TRANSMISSION OF HIV CLIENTS AT BUSHENYI MEDICAL CENTER BY ANKUNDA IRENE DOREEN B.SWASA (Hons) MUK 2004/HD14/0556U A DISSERTATION SUBMITTED AS PARTIAL FULFILMENT OF THE AWARD OF THE DEGREE OF MASTER OF ARTS IN SOCIAL SECTOR PLANNING AND MANAGEMENT OF MAKERERE UNIVERSITY OCTOBER 2011 DECLARATION I, Ankunda Irene Doreen, declare that this is my original work and it has not been published or submitted to any other institution of learning or University for the award of any degree. Signed……………………………………………. ANKUNDA IRENE DOREEN Date ……………………………………………... This dissertation has been submitted for examination with the consent of the academic supervisor. Signed……………………………………………. DR. SSAMULA MATHIAS Date………………………………………………. i DEDICATION I dedicate this work to my mother, Mrs. Ruth Sande, a great inspiration to me in life. To my husband Solomon Festus Walube. ii ACKNOWLEDGEMENTS Special thanks go to my academic supervisor Dr. Ssamula Mathias for the guidance, advice, help, and patience he rendered to me during all stages in the preparation of this work. I also acknowledge with thanks the contributions of Mr. Samuel Mugarura, Dr. Mnason Tweheyo and Dr. Asiimwe Stephen, who advised me at all stages of the study. I also thank my research assistants, Albert Mucunguzi and Naome Bazinzi for their commitment. Special thanks go to my classmates, Katabyama Alfred, Mugabi Edith and Muhimbise Onesmus for the encouragement they gave me in the course of my work. I am indebted to my mother for financing my education to the end; to my husband Solomon, for encouraging me to finish despite the shortcomings in resources we were experiencing. To my sister and brothers, I say you set the best examples I could ever have and thank you for this. Last but not least I would also like to thank the staff of Bushenyi Medical Center, mothers, and their spouses who gave their contributions in the form of responses and cooperation. iii TABLE OF CONTENTS DECLARATION ................................................................................................................. i DEDICATION .................................................................................................................... ii ACKNOWLEDGEMENTS ............................................................................................... iii TABLE OF CONTENTS ................................................................................................... iv LIST OF TABLES ............................................................................................................ vii ACRONYMS ................................................................................................................... viii ABSTRACT ........................................................................................................................ 1 CHAPTER ONE ............................................................................................................... 3 1.0 BACKGROUND TO THE STUDY ............................................................................. 3 1.2 Problem Statement ........................................................................................................ 5 1.3 Objectives of the study.................................................................................................. 6 1.3.1 Main Objective........................................................................................................... 6 1.3.2 Specific Objectives. ................................................................................................... 6 1.4 Scope of the study. ........................................................................................................ 6 1.5 Significance of the study............................................................................................... 7 1.6 Conceptual Frame work ................................................................................................ 8 CHAPTER TWO ............................................................................................................ 11 2.0 LITERATURE REVIEW ........................................................................................... 11 2.1 Awareness of HIV among mothers ............................................................................. 11 2.2 Support from medical staff ......................................................................................... 13 2.3 Extent to which PMTCT services are utilized. ........................................................... 15 2.4. Cultural beliefs as an influencing factor for PMTCT. ............................................... 16 2.5 Cost of PMTCT services ............................................................................................. 16 iv 2.6. Fear of conflict ........................................................................................................... 17 2.7. Emerging issues from the reviewed literature ........................................................... 18 CHAPTER THREE ........................................................................................................ 19 3.0 METHODOLOGY ..................................................................................................... 19 3.1 Introduction ................................................................................................................ 19 3.2 Research Design......................................................................................................... 19 3.3 Area of study ............................................................................................................... 19 3.4 Study population ......................................................................................................... 20 3.5 Sample Size................................................................................................................. 20 3.6 Sampling procedure .................................................................................................... 21 3.7 Data Collection ........................................................................................................... 22 3.8 Data analysis ............................................................................................................... 22 3.9 Study procedure .......................................................................................................... 23 3.10 Ethical considerations ............................................................................................... 24 3.11 Limitations to the study ............................................................................................ 24 CHAPTER FOUR ........................................................................................................... 25 4.0 PRESENTATION OF RESEARCH FINDINGS ...................................................... 25 4.1 Introduction ................................................................................................................. 25 4.2 Social demographic characteristics of respondents. ................................................... 25 4.3 What mothers do for a living ..................................................................................... 27 4.4 Awareness of PMTCT services among mothers ......................................................... 29 4.5 Factors that influence mothers’ utilization of PMTCT services. ................................ 32 4.6 Support from medical personnel. ................................................................................ 33 v CHAPTER FIVE ............................................................................................................ 34 INTERPRETATION AND DISCUSSION OF THE STUDY FINDINGS ..................... 34 5.0 Introduction ................................................................................................................. 34 5.1 Issues of women awareness about the availability of PMCT services ....................... 34 5.2 Access and utilisation of PMTCT services in Bushenyi Medical center .................... 35 5.2.1 Necessity of participating in the PMTCT ................................................................ 35 5.2.2 Factors affecting access ........................................................................................... 35 5.2.3 Utilisation of PMTCT .............................................................................................. 36 5.3 Assistance given to mothers from the Health Personnel ............................................ 37 5.4 Expectations of Mothers from BMC staff and management ...................................... 38 CHAPTER SIX ............................................................................................................... 40 6.0 COCLUSIONS AND RECOMMENDATIONS ........................................................ 40 6.1 Introduction ................................................................................................................. 40 6.2 Conclusions ................................................................................................................. 40 6.3 Recommendations. ...................................................................................................... 41 6.3.1 To Community members ......................................................................................... 42 6.3.2 To Government ........................................................................................................ 42 6.3.3 To Bushenyi Medical Centre ................................................................................... 43 6.3.4 To Future researchers on PMTCT services ............................................................. 43 REFERENCES ................................................................................................................. 44 Appendix 1: Semi-structured questionnaire for main respodents ..................................... 48 Appendix II: Interview guide for medical personnel ........................................................ 53 Appendix III: FGD guide ................................................................................................. 55 vi LIST OF TABLES Figure 1: Distribution of respondents by age………………………………………26 Figure 2: Distribution of respondents according to marital status…………………26 Figure3: Education background of respondents…………………………………..27 Figure 4: Mothers distance from BMC…………………………………………….29 Figure 5: Time respondents go to BMC for PMTCT for different services…….....31 Figure 6: Charges on PMTCT……………………………………………………...32 vii ACRONYMS AIDS - Acquired Immune Deficiency Syndrome ANC - Antenatal Care/Clinic ARV - Antiretroviral Drugs AZT - Zidovudine BMC - Bushenyi Medical Center CRHCS - Commonwealth Regional Health Community Secretariat DFID - Department for International Development HIV - Human Immune Virus IBFAN - International Baby Food Action Network MOH - Ministry of Health MTC - Mother to Child MTCT - Mother to Child Transmission of HIV/AIDS. NYCS - National Youth Council Secretariat PMTCT - Prevention of Mother to Child Transmission of HIV/AIDS. SPSS - Statistical Package for Social Sciences UNAIDS - The Joint United Nations Programme on HIV/AIDS UNFPA - United Nations Population Fund UNICEF - United Nations Children’s Fund VCT - Voluntary Counseling Testing viii ABSTRACT This research study was about the utilization by mothers of services for the Prevention of Mother to Child Transmission (PMTCT) of HIV services by mothers from Bushenyi Medical Centre. A number of respondents characteristics were considered during this study and included, age, marital status, number of children per mother, level of education, source of income, earnings per month and distance from BMC. Age of the respondents ranged from 15-50 years. The study involved 47 mothers, 47 spouses and 6 medical personnel (as the key informants). All mothers interviewed were aware of the existence of PMTCT services at BMC which they got to know from various sources. They knew that the services were free and available after testing and knowing their sero status. Mothers admitted that services of ARV use, sensitization, infant feeding, family Planning and VCT were mostly informative. They were interested in knowing their status. They rated the quality of various services under PMTCT as good. The reason given for such ratings was that services are free, available and helpful. They mentioned sensitization about MTCT, infant feeding, and family planning as very important as compared to VCT and use of ARV’s. Mothers preferred visiting BMC in the morning hours in order to hurry back home to attend to their children and other chores. There were no charges on PMTCT services at BMC apart from other costs like transport costs incurred by the mothers on their way to BMC. Mothers reported that they went to BMC for PMTCT services as well as to government and private hospitals for the same services. The reasons given were that BMC was nearer and convenient while other places provided a variety of services in addition to those at PMTCT. The support they got from medical personnel included encouragement to return, medication, hospitality, attention, as well as time. There were a few reasons they gave for which could prevent them to use PMTCT services for example sickness, queues at the 1 health centre, transport costs, and refusal of spouses to give permission to mothers to go to BMC for PMTCT services. Mothers had expectations from medical personnel who administered PMTCT services. The majority said that medical personnel should be available and give services promptly and that they should continue the good work and hospitality, among others. Spouses to the mothers too knew about PMTCT and admitted to supporting their wives by escorting them to BMC. Many complained of poverty as a challenge. Few had tested for HIV/AIDS and were afraid to reveal their results to their spouses. 2 CHAPTER ONE 1.0 Background to the study Prevention of mother to Child HIV transmission (PMTCT) is still the most effective intervention in combating new HIV infections. Mother to child transmission of HIV (MTCT) is the predominant manner in which children under the age of 5 years acquire HIV in Uganda. It is also known as vertical transmission. It is estimated that 18,000 HIV infected infants continue to be born every day in the developing world, (UNAIDS, 2000). The risk of vertical transmission from an infected mother to her new born baby ranges from 21-43% in developing countries depending on the breast-feeding patterns. The virus may be transmitted during pregnancy (in utero), child birth (inter-partum) or through breast feeding (post partum). According to the National Youth Council Secretariat (NYCS, 2005) Prevention of Mother to Child Transmission of HIV (PMTCT) is an intervention for providing antiretroviral drugs (ARVS) for HIV positive mothers and their babies to prevent HIV from passing on from a mother to the infant. In Uganda vertical transmission is the primary way through which HIV is transmitted to children. Without preventive treatment, over 40% of children born to HIV positive mothers get infected. Of those infected through MTCT, about 66% get infected during pregnancy and deliveries while 33% get infected through breast-feeding. Accordingly, MTCT is the second major mode of spread of the virus in Uganda and the main route by which children get infected (MOH Uganda, 2001). The relatively high prevalence rate of HIV among women of reproductive age in Uganda coupled with the high fertility rate of 7 children for every child bearing woman, implies that without an intervention the number of children likely to be infected with HIV would be very high. This has drawn concern from both government and non-governmental organisations to establish whether mothers are utilizing PMTCT services established and made available at peripheral health centers countrywide and therefore that is the premise of this study. 3 It is estimated that by 2012 AIDS will have increased mortality of children under the age of 5 years to more than 100% in regions most affected by the virus in the country. In addition, a large epidemiological study at Mulago hospital conducted from 1991-95, which considered consequences of HIV in pregnant mothers, showed that the vertical transmission rate is about 27.5% without any intervention (MOH, 2001). This means that approximately 20,000 of the 67,000 babies born to HIV infected mothers were being infected. The majority of these children usually die within two years, making prevention of vertical transmission of HIV extremely important as the main strategy for prevention of HIV infection in children. The PMTCT program involves provision of a comprehensive package of care including administration of anti retroviral drugs to pregnant mothers during pregnancy, labour and immediate postpartum period. Some of the reasons women gave for not using PMTCT services included self suspicion of HIV positive status, lack of interest and poor support from medical personnel (Mc Loy David, Besser Mitch,Visser Renel and Doherly, 2002). Some studies have examined whether such interventions of PMTCT programs can benefit the communities for example the need to involve husbands to support their wives in the use of PMTCT which has contributed to the failure of some women to access PMTCT services ( Rutemberg N, Field M L, Nguer and Nyablade Laura, 2000). Social support from peers of HIV pregnant women makes them feel empowered. The issue of community involvement as an initiative to prevent MTCT of HIV has both positive and negative implications on the mothers seeking the service. Interventions addressing MTCT of HIV include administration of anti retroviral drugs during pregnancy, labour and postpartum period which is related to a reduction of MTCT of HIV by up to 50% in Uganda. Taking a single dose of anti retroviral treatment reduces infection through the placenta to the unborn baby. Health education of pregnant mothers is the other way of increasing awareness and PMTCT of HIV/AIDS. Yet some mothers still decline to access such PMTCT services. Provision of antiretroviral drugs of HIV to 4 infected pregnant mothers can reduce the risk of MTCT by up to half. It is against the above background that the study sought to assess the utilization of PMTCT services by women of childbearing age at Bushenyi Medical Center (BMC). 1.2 Problem Statement Of the 30 million adults’ worldwide living with HIV, 14 million are women; 90% of whom are in the developing world. The situation is worse in Sub-Saharan Africa where 1.4 million infants are born every year. Pregnancy rate is as high as 40% and more than 2 million pregnancies occur in HIV positive women (IBFAN and CRHCS, 1999). In Uganda 2009, prevalence of HIV was estimated at 6.5% of women receiving ANC 2 times as many young men. In 2006 - 94% of women utilised ANC services at least once during pregnancy. In addition 53% HIV positive pregnant women received ARV’s for PMTCT in 2009 as compared to 28% of HIV exposed infants ( UNICEF,2009) In response to the above situation a number of strategies and interventions have been initiated and implemented in many Sub Saharan African countries to help in the reduction of the above stated phenomenon. One of those interventions is the Prevention of Mother to Child Transmission of HIV program which is being implemented in Uganda in all government health institutions and some private institutions since the year 2000. Rates of HIV infection among pregnant women tested at antenatal centers in Uganda yet can be as high as 20-30% while some mothers decline to altogether use PMTCT services (MOH, 2003). The relatively high prevalence of HIV among women of reproductive age in Uganda, coupled with a high fertility rate of 7 children per every child bearing woman according to 2002 census results implies that without an intervention the number of children likely to be infected with HIV is very high. PMTCT interventions are provided for free and are health facility based. Despite the availability of free services in Bushenyi district; the prevalence continues to increase resulting in increased HIV infections and suffering of innocent children. In the Face of this the level of mother’s utilisation of PMTCT program, PMTCT preferred services, and the support from Medical Personnel particularly in Bushenyi District is not known. 5 Therefore, this study seeks to examine PMTCT service utilization among mothers of childbearing age seeking care at a private health facility. 1.3 Objectives of the study. 1.3.1 Main Objective. To examine the utilization of Prevention of Mother to Child Transmission of HIV services among mothers of child bearing age in Bushenyi District. 1.3.2 Specific Objectives. 1. To examine the level of awareness about PMTCT services among mothers of child bearing age at BMC. 2. To establish the extent to which PMTCT services are used. 3. To analyse the extent to which mothers are supported by medical staff at Bushenyi Medical Center (BMC). 1.4 Scope of the study. The study was conducted in Bushenyi district, particularly in villages surrounding BMC where mothers had access to PMTCT services. This enabled the study to focus on households which are within the catchment area of BMC that is Bushenyi Town council, kakanju, rukararwe, bumbaire and kyeizooba. The study focused on the level of awareness of mother’s about PMTCT services, the preferred PMTCT services amongst HIV positive pregnant women seeking maternal health services and the extent to which mothers were supported by medical staff at BMC. It also considered the time since PMTCT services were introduced at BMC, that is, from 2001 to the present. Mothers of child bearing age were targeted because they are the ones who get pregnant and breastfeed their children and are also in the age category most affected by HIV. 6 1.5 Significance of the study It is apparent that the high prevalence of HIV among women of reproductive age is still a major challenge, which is compounded by the high fertility rate in Uganda of 7 children per child bearing woman. This places children born to such mothers at risk of HIV infection. This study should contribute to a better understanding of the reasons why mothers use or do not use the PMTCT services made available to them in order to improve service provision. The study has hopefully also generated additional information beside the existing literature on PMTCT service utilization by mothers and should help to fill existing gaps in previous studies. For policy makers it has generated information that should hopefully expound on the factors hindering PMTCT service delivery to this target group and help toward the formulation of better and more effective policies that can enhance the utilization of PMTCT services. 7 1.6 Conceptual Frame work Study theme: Determinants of women’s utilization of PMTCT services Intervening Variables - Independent variables - Education - Religion - Marital status - Occupation - - Level of awareness Facts about PMTCT Program awareness Ignorance of PMTCT services Denial of infection Community attitudes Fear of the pandemic Support from medical staff Quality of service No adequate training and knowledge Level of responsibility Discrimination and stigma by staff Main outcome Utilization of PMTCT services Preferred services of PMTCT Attitude towards service Availability of other services Lack of clear understanding Other influencing factors - Fear of conflict - Distance to health unit→ - Stigma from community. - Cost of service The above were considered to be the salient determinants of mothers’ utilization of PMTCT services. Those with direct arrows directly affect utilization of the service; while 8 double arrows indicate indirectly related factors, which also have an indirect relationship to the utilization of PMTCT services. First and foremost for the mothers to use the available PMTCT services they need to be made aware of their existence. The mothers need to know what PMTCT is; where it can be got; its effects on their lives as mother, among other things. This is very crucial, since it has also to do with the attitudes the community attaches to the service for both men and women. The men, too, need to be made aware that PMTCT is good and beneficial to their wives, or else they will stop them from using such a service. Several things need to be clarified as ordinary people fear the consequences of such new interventions in their respective communities. In order to raise the level of awareness about PMTCT in Bushenyi district, a number of methods are used such as radio programs, community meetings, music dance and drama, all of which supplement each other hence having a bigger percentage of the community members to know what the intervention is all about. However, while passing on this information, the disseminators need to be cautious of the target respondents as different people may understand things at different levels. For instance, the message for the expecting mothers should not be the same message for the young girls in school, for religious sects and for all educational levels, among others. From the supply side, the medical staff needs to be of high quality with adequate training and up to date knowledge in the field of MTCT. The staff need to be well motivated and highly responsible because mothers need to be educated on an on-going basis so as to be enabled to access and benefit from the service BMC is offering. The mothers also need to be counseled and allowed to make their own decisions preferably after consulting from husbands. This in a way will enhance sustainability of usage for the PMTCT services. Attention also need to be put on other factors that could prohibit the mothers from accessing and using PMTCT services, such as the distances involved from the community to the centre where the services are rendered from, transport costs, the stigma, 9 and relevance which people attach to the role of breastfeeding in child growth and development. After putting all the above into consideration, it is hoped that there will be increased utilisation of the PMTCT services by the mothers. 10 CHAPTER TWO 2.0 Literature review The literature reviewed presents the existing information on the topic. It is presented under sub topics like awareness of PMTCT among mothers, utilization, and the available support from the Medical workers, issues of preferences, factors influencing the utilisation and acceptance of PMTCT services as well as the emerging issues. 2.1 Awareness of HIV among mothers The HIV virus can be transmitted from the mothers’ bloodstream to other body fluids, including breast milk which pose a risk to breast fed babies (Jackson et al, 2002). In this particular study, it was noted that many mothers surveyed were not aware of this fact. The level of community knowledge about HIV influences the context in which women make decisions about PMTCT of HIV. Pregnant women trying to decide whether or not to be tested for HIV are influenced by negative community attitudes and stigma toward individuals suspected of having AIDS. In a community, which tends to blame women for the spread of HIV, women will be even more reluctant to take the test (Leonard et al, 2001). Although the community maybe a determining factor, there are many others which may hinder mothers to test; for example, their acceptability and willingness. Acceptability of HIV testing by pregnant women is the ‘passport’ or entry point for all HIV prevention interventions including PMTCT. This study notes that mothers still are unaware of this due to hindering factors such as isolation from family members in case they take the test and communities. Uganda has been implementing PMTCT since 2000. Currently there are 71 sites in 35 to 56 districts (UNICEF, 2003). Although the burden is completely laid on mothers w ho may not be aware of the existence of such a service at both public and some private health units, like BMC for example. Yet they have to deal with the implications of HIV infection of unborn children, which is so unfair considering their ignorance of the service. 11 Despite the available information about HIV/AIDS, people are gripped by fear and ignorance of the pandemic (Anderson R Jean, 2001). Although this study did not specifically indicate that mothers in this case were the culprits. This does not give the study a clear understanding whether the available information on HIV/AIDS and specifically PMTCT is accessible to mothers. Considering the extent of the HIV pandemic in Uganda, there is hardly any family in the country that has not been affected by HIV, which is very high even in rural areas (UNICEF, 2003). However, it is surprising that a large number of pregnant women believe they do not have the infection therefore may not be aware of such programs as PMTCT or have any knowledge about the service. Although the study of HIV prevalence is largely conducted among pregnant women, this is done anonymously and therefore the women remain ignorant of their status (MOH Uganda, 2003). There is another assumption that women attending antenatal clinic (ANC) services and women in communities have fairly good knowledge about PMTCT of HIV; the same study stresses some of the reasons why ANC attendance is low which may on the other hand imply that they may not have adequate knowledge about PMTCT services (UNICEF, 2003). This is an obvious contradiction as observed by the study. It is a challenge that not all pregnant women attend ANC (MOH Uganda, 2001). This may not have anything to do with mothers’ knowledge about PMTCT let alone the fact that they may not know their status even though they attend ANC. There has been a generalization that mothers who attend ANC seek PMTCT services, which may not be the case. Therefore it has been recommended that there is need to continue education campaigns, levels of awareness have not yet hit the 100% mark especially with more people getting into the child bearing age bracket (Sematimba and Subika, 2004). 12 2.2 Support from medical staff Emphasis is placed on the fact that unless prevention programs become much more effective every child born today in heavily infected countries stands a 50% chance of getting HIV and dying of AIDS (Hunter S. Susan, 2004). There are a limited number of risk reduction strategies to prevent sexual transmission for those who want to get pregnant. These are good antenatal, childbirth and post partum care, which benefit all women and babies including those with HIV/AIDS ( Berer Marge and Ray Sunanda, 1993). Here the study sees medical staff responsibility as to offer mentioned services but no specific support; for example, a more ‘personal approach’ to mothers seeking PMTCT services like counseling. In addition, the kind of “support” mentioned here is that women with HIV fear discrimination by health care providers. This is not support of any form. The study continues to state that such mothers are coerced to have an abortion or be sterilized because of their positive status. This causes fears in such mothers, giving them a poor attitude to medical staff and to all PMTCT programs. The study however is not sure whether such is happening in Uganda where abortion is illegal. This may happen in another form like discrimination and stigma. For women known to be HIV positive, education and counseling about pregnancy and HIV should be done early in the course of HIV care, not delayed until a woman is pregnant so that decisions about contraception and if pregnant can be most informed and carefully considered (Anderson R Jean , 2001). Medical personnel may be ready to do the above; but pregnant women may not come to the medical center, thus rendering medical staff powerless. Although that may be the case, it is unfortunate however that pregnancy and child birth are the only events that bring women into sustained contact with the health care system in any developing country (Population Council Inc, 2002). This is not the case, because women contact the health care system with other ailments such as malaria or sexually transmitted diseases. Health workers handling pregnant women and even counselors are still largely ignorant of the issues of PMTCT of HIV (MOH, 2001). Therefore they may not be of much help 13 to the mothers. If health workers are ignorant of issues of PMTCT of HIV, mothers seeking PMTCT services are at risk. This is a general statement because not all health workers are ignorant about PMTCT or HIV. Many questions about prevention of HIV in pregnant women and newborns remain unanswered. For example, what chance of HIV infection does the unborn baby stand? In addition they must be aware of the many contextual factors including those related to gender that influence the success of interventions designed to prevent HIV transmission from mother to child and to ensure the highest quality care available for the continued health of mothers and their newborn children. In relation to the above, it is stated that the duty of health workers involved in HIV prevention programs must be to empower women; and’ if possible to improve their status in society through advocacy designed to protect and promote their rights especially reproductive and sexual health rights of all women (WHO, 1999). It is evident that medical staff need a lot of training and sensitization also about PMTCT services for them to be effective and of great use to their clients, because lack and absence of continuous training makes them like other traditional health practitioners yet they offer a specialized service to the expectant mothers. It still appears according to the existing literature that health workers handling pregnant women and even counselors may be largely ignorant of the issues of HIV MTCT. Therefore it is recommended that an update and retraining of health workers and counselors is carried out (MOH, 2003). In this training components such as how to handle a pregnant woman, counseling at both the pre-testing and post- testing stages, issues of acceptance, and objective mentality in regards to stigma, all need to be included in the training component and done on a regular basis so that the health workers are well equipped to deliver the service. 14 2.3 Extent to which PMTCT services are utilized. Maternal and child health programs, that is antenatal, delivery, and postpartum are made available and provide a unique opportunity to reach women at risk and vulnerable to HIV infection with critical information, technologies and services (Population Council Inc and UNFPA, 2002). Maternal and child health services can provide pregnant women and new mothers with vital information about HIV/AIDS and its transmission, HIV testing and counseling, and referrals to other services for women regardless of their sero status. Although the above services are available, it does not mean that they are preferred or are in incorporated in the PMTCT services offered. Voluntary counseling and testing in antenatal clinics is particularly important for pregnant women because a diagnosis of HIV infection is the only way to ensure access to the growing number of interventions designed to prevent the transmission of the virus to their newly born children including access to drug therapies such as Zidovudine (AZT) and Neverapine (WHO, 1999). Although voluntary counseling and testing is important, pregnant women may not see it that way yet this service may provide opportunities for reaching their husbands as well and encourage them to practice safer sex to promote HIV prevention through the use of condoms and limiting the number of sexual partners. Apart from other factors, women participate in PMTCT services depending on the quality of counseling, information and health education. Therefore preference of other services would depend on their quality thus the determining factor. Some of the women may not seek such services, therefore; while others may because they may have no option. In conclusion therefore, there is need for all prospective mothers and young girls who are going to become mothers in the future to be given all the relevant information that relate to the benefits of using the PMTCT services as well as other health related information 15 for them to make informed decisions. This will greatly influence the community attitude towards the use of the PMTCT services. 2.4. Cultural beliefs as an influencing factor for PMTCT. These constitute some of the more important factors influencing the acceptance and utilization of PMTCT services. It was discovered that in populations where breast feeding is the norm it may account for 1/3 of all transmissions (UNAIDS, 1997). In a later study, breast feeding doubles transmission of HIV. Culturally after delivery a mother is expected to breastfeed immediately. Failure to do so, in-laws may pressurize her and she may fear to reveal her status (UNAIDS, 2000). Probably this is the reason why PMTCT services are not utilized. This is because these women may breast feed for longer than required that is 3 months exclusively even when HIV positive. But if their status is hidden and they continue breastfeeding beyond that period the child stands a higher risk of infection. Without the required knowledge, like the fact that exclusively breastfed infants are more likely to become infected than non breastfed infants, these mothers are bound to infect their infants. Therefore the issue of culture on breastfeeding could be a serious factor hindering the use of PMTCT services, because the service is associated with HIV positive status. 2.5 Cost of PMTCT services The cost of PMTCT services is yet another inhibitive factor for the use of PMTCT services. Access to PMTCT of HIV services is determined by the health system making relevant services available in a way that is convenient and affordable to those who need them. In private health facilities, like Bushenyi Medical Center, there may be other costs inclusive in the package that may make the service in-accessible to women. However, other factors play a major role for example willingness of women to come forward to use the available services, then the challenge of taking the HIV test could also hinder them. 16 In addition to breast milk, substitutes were considered. HIV infected mothers were advised to use infant formula (WHO, 1994). In Uganda such Infant formula feeds cost currently between 15,000 to 20,000 Uganda shillings, not small amounts by any means. Besides women need to be able to read and understand mixing instructions and also to have easy access to clean water, as well as energy to cook or prepare it. This becomes quite a challenge because women in rural settings have low incomes to afford such and many are illiterate. Some products like breast milk substitutes may have a high re-sale value. If provided free of charge to mothers with HIV, some may be tempted to accept it with a view of selling some or all of it to raise money needed to meet other needs (Department For International Development, 2001). Therefore the high cost of other products might intimidate them, though one may not rule out the fact that even though given free, mothers may not come for them a possibility which pauses many questions to the study. In addition a high proportion of mothers who accepted free infant formula at the time of delivery did not return to collect further supplies thus failure to achieve replacement feeding. Therefore, the effectiveness and accessibility to PMTCT services largely depend to a large extent on the costs involved. Since the costs of the medicines like Zidovudine (AZT) and Neverapine, are high on the market, the government should come in to subsidize it so that it can be afforded by the intended mothers. Where it is possible the drugs and infant formula feeds be given for free, just like it is done for the ARVs so that they can play a complementary role in the fight of HIV/AIDS spread and treatment. 2.6. Fear of conflict The majority of partners might be supportive if they learn that women have HIV during a pregnancy, although many do not tell their partners of their HIV infection. This is done in fear of divorce, physical harm, and public scorn (Berer Marge and Ray Sunanda, 1993). Such scenarios would make such women questionable if they used PMTCT services. It may increase feelings of conflict, it is thus no wonder many women prefer not to know their HIV status during or after pregnancy. The feelings of conflict may become 17 too great to resolve or cope with all at once. This places women in a dilemma, more so mothers with babies. 2.7. Emerging issues from the reviewed literature It emerged out that the available literature does not cover all the aspects of PMTCT, because it focuses on pregnant women who are HIV positive rather than all females in the child bearing age, it was difficult to establish the level of awareness about the availability of the PMTCT services; and where knowledge was sufficient, it was mostly in trading centres while people deep in the rural villages seemed to be lacking that vital information. Additionally there is lack of clarity and duplication of the PMTCT services, as there are many providers including BMC and other government aided health centres. Challenges of costs and transport were a serious limitation towards the effective use and benefiting from the PMTCT services. A big percentage of the population over 60% still had negative attitudes towards the services. This was partly attributed to the absence of continuous training for both the men and the women. All these bottlenecks or problems had serious implications on the usage of PMTCT services in Bushenyi district as the study discovered. 18 CHAPTER THREE METHODOLOGY 3.1 Introduction This chapter presents the research design, area and population of study, sample size and sampling procedure, data collection and data analysis, study procedure, ethical considerations and limitations of the study. 3.2 Research Design This was a descriptive and cross-sectional study. It focused on a particular health center and was descriptive so as to give a clear picture of the use of PMTCT services at BMC by mothers. It enabled the study to establish the reasons why mothers utilize or do not utilize the services, and who in particular utilize them at that moment in time. It also enabled the study describe the various elements to understand better the level of awareness of the PMTCT program among mothers, preferred PMTCT services, and the extent to which mothers are supported by medical staff. The study used both qualitative as well as quantitative methods to collect data. In depth information from key informants was also obtained. Quantitative data, like demographics and numbers of pregnant women utilizing the service during the study duration were accessed and assessed. 3.3 Area of study Bushenyi Medical Center is a private medical facility with its main facility located in Kabwohe, Bushenyi district, western Uganda. Bushenyi district 34 health facilities, some of which are government owned and others are not. Bushenyi has a total population of 241,500 people of whom 70% are in a walking distance of 5km of a health facility as recommended by Ministry of Health to the health unit according to the projections of 2002 census. HIV/AIDS services are offered in 15 health facilities. There are 92 primary schools and 79 are government aided, 13 are privately owned. There are also 9 government aided secondary schools, 10 privately owned secondary 19 schools, 2 government owned tertiary institutions and 1 privately owned. Bushenyi is mostly an agricultural district, thanks to the heavy rains and fertile soils with which it is blessed. This area was purposely chosen because of the high population density of 282 people per square kilometer and other factors such as poverty which encourages HIV/AIDS resulting from of HIV related behaviors amongst parents and in particular mothers. 3.4 Study population The study population was composed of women of child bearing age (18-45), their husbands, and the Medical personnel, making in all a population of approximately 10,000 people (enrolled to access BMC services). This included mothers who were pregnant, those who were breastfeeding, HIV positive pregnant mothers and HIV positive breastfeeding mothers. These mothers were the target group for this study. But their husbands were as also included in the study, because they were deemed to be having relevant information about their partners with regard to the seeking and appreciation of PMTCT services. 3.5 Sample Size The sample size was determined as follows; n = Z2 Pq/d2 where N > 10,000 n = 1.962 x 0.75 x 0.25/0.52 = 0.72/0.25 = 2.88 x 100 = 288 n n being the sample size d is degree of accuracy 0.05 p is population being affected 0.75 q is population not affected 0.25 z is 1.96 standard normal deviation 20 The study opted to use a sample of 100 respondents instead of 288, due to time and financial constraints. 3.6 Sampling procedure Random sampling was employed to select the Mothers. For the mothers, the principal investigator approached the person in charge at BMC and requested for the list of mothers registered for PMTCT. Each mother was identified by their hospital number, and assigned study numbers. These numbers were then entered and used in a computer to generate random numbers for selection. Forty seven mothers were selected. Purposive sampling was used to select the spouses, for every selected mother the study considered the spouse. This covered only 41 spouses, the other 6 were purposively chosen from BMC client registry for PMTCT clients making a total of 47. The respondents selected using this procedure provided the researcher with quantitative data. Therefore with the help of the above method women who were not clients of BMC were not included in the sample. As for the husband, only those whose women were enrolled with BMC had the chance to be selected. However, this did not mean that every selected woman her husband was also included but rather only those men whose wives were enrolled with BMC had a chance to participate in this study. For qualitative data, convenience / purposive sampling was used to get medical personnel. This enabled the researcher to focus on respondents who the information, required especially that which could not easily be obtained through quantitative method. With this method, emphasis was put on the Medical personnel in charge at BMC who were later asked to identify the others who work under the PMTCT services and in total six respondents were interviewed. 21 3.7 Data Collection Structured interviews were used on mothers; this was done with the help of an interview schedule or questionnaire for mothers. It collected data on demographics as well as structured data on utilization of PMTCT services. Questions were asked exactly the same way for each respondent in order to be consistent and increase the validity of the responses received. For the spouses of the mothers focus group discussion was held with the help of a Focus Group Discussion guide. This enabled free flow of unlimited responses from the spouses on the use of PMTCT services by their wives. Key Informant interviews were used with the medical personnel with the help of an interview guide. This had questions which provided the researcher with a deeper insight in the implementation of the PMTCT program. The respondents (Medical personnel) from BMC were believed to be knowledgeable in that area because they were the ones involved in its implementation and delivery to the mothers. The data collected from this category of respondents was qualitative in nature and the questions were adjusted where there was need in order to get all that was available about the topic of discussion. This approach gave the researcher a chance to also study the non-verbal communication from the respondents, since the interviews were very engaging and in a free environment. 3.8 Data analysis Thematic analysis was used to analyse qualitative data by developing themes from objectives and literature reviewed. These included support from medical staff, the level of awareness and preferred PMTCT services. Sub themes were established for example under the level of awareness, service accessibility and attitude towards the service. By categorizing data under the various themes, the study hoped to establish relationships between themes and categories developed. It made it easy to compare and contrast issues and highlight the key issues by use of quotations. Since analysis was an ongoing process the data were edited during data collection by checking for errors, consistency and then categorizing them by coding as described 22 above. Responses which were qualitative from questionnaires were categorized under established themes. During data collection other new and pertinent categories were established. At the end of data collection all data was coded and edited to be analysed by the computer by entering the codes. Charts and tables were developed and data was interpreted and conclusions made into a written report. Quantitative data from structured questions for example from closed ended questions which were already pre coded, was summarized and entered directly in the computer. The Characteristics of the study population were summarized and proportions of women utilizing particular services tabulated. Editing was done to ensure completeness and clarification of distorted data. This was done with the help of a computer-program SPSS. Other variables which were used in the quantitative analysis of the collected data were; age, educational level, marital status, occupation as well as distance from the health facility. 3.9 Study procedure The study commenced when the department of Social Work and Social Administration (MUK) gave a letter of introduction which was presented at BMC. From there, permission was granted to access patient information. For the various villages, the leadership of BMC and local Council chairmen was requested to provide another letter of introduction to the study participants to avoid uneasiness and misunderstandings with the intended respondents. The researcher traced homes of mothers by asking those who knew them. Introductions were then be made after greetings. The researcher introduced the purpose of the study and assured the mothers about confidentiality of the information by not using names. When they consented, the researcher proceeded to ask them questions which were brief and clarified where they did not understand. Concerning spouses, the above procedure was followed for those who consented and stayed with their wives. For medical staff the study approached the medical personnel In-charge and explained the purpose of the study. Thereafter, the other medical staff were notified by the In- charge, 23 and the researcher interviewed each given the time that they were available in a place of their preference. 3.10 Ethical considerations The study acquired consent of each respondent before any information was collected. The study assured the respondents that no names would be attached to responses for confidentiality and that the information was to be used strictly for academic purposes. Data presentation was made with no references to names of respondents. 3.11 Limitations to the study The study experienced some challenges with BMC staff in accessing their records due to the sensitivity around HIV/AIDS and fear of stigma, making it a rather a sensitive study. The researcher presented a letter from Makerere University to BMC staff which created understanding. In addition, consent of each respondent was asked and obtained to ease the process. 24 CHAPTER FOUR 4.0 PRESENTATION OF RESEARCH FINDINGS 4.1 Introduction This chapter presents findings based on the specific objectives of the study. The presentation employs a narrative technique and description of statistics, quotations, frequency and tables. The study sought among other things to understand the utilisation of PMTCT services by mothers in BMC. It also sought to examine the level of awareness PMTCT among mothers of child bearing age. Thirdly, it sought to gauge the extent to which mothers are supported by medical staff at BMC. All these tasks were duely executed with significant findings. The study also established the preferred PMTCT services amongst the HIV positive pregnant women seeking maternal health services. 4.2 Social demographic characteristics of respondents. The variables explored in relation to the background of respondents explored included age, marital status, number of children, level of education, way of livelihood, earnings, and distance from the health facility. 25 Figure 1: Below shows the distribution of respondents by age From the chart, the number of mothers between the ages of 21 to 35 constituted 77%. This was followed by 17% of those respondents who were between the ages of 15-20 while the smallest group of ages 36 to 50 was made up of only 6%. This meant that the study covered all the women of child bearing age of between 15-50 years. Figure 2: Distribution of respondents according to marital status 26 It was observed that 87.2% of the mothers were married while 4.5% were single and four mothers had been in a marriage relationship but separated from their spouses. This variable enabled the study to indicate the number of mothers and their situation socially. Most of the mothers who participated in this study had 1-2 children making 76% of the respondents while a smaller number were those who had above five children who only comprised of 6.4%. There is a tendency to think that the literate ones who use the services of PMTCT, since they presumably hold a higher level of knowledge. This study therefore, considered the level of education as shown in figure 3. Figure 3: Education background of respondents Regarding education, most of the mothers had some form of education, possibly due to the encouragement of girl child education. Also, this part of the district has a number of schools which are accessible. 4.3 What mothers do for a living The Majority of the women who participated in this study were engaged in bee- keeping, and piggery projects as sources of their income. This was followed by shop keeping, 27 Subsistence farming was surprisingly an activity least practiced by the respondents. Additionally, other women were engaged in saloon business. Since all respondents had some activity to do from which they could generate some income, this meant that much as poverty is there, such women were able to afford transport to and from BMC. This was also made possible by the support they used to get from their husbands as it was put by one of the respondents: “… when I do not have the transport money, I tell my husband that I need to go to the clinic and if he has the money then he gives me because he is aware of what am going to do”. And from an FGD for men this opinion was expressed by one husband: “We may not have much but we give them transport money when we have some, we try to share because we are also concerned as husbands” 28 Figure 4: Mothers distance of mothers from home to BMC. It can be stated that a majority of the women walked three kilometers to access PMTCT services that is 42%. The findings clearly indicate that most mothers require a mode of transport to get to BMC since 3 kilometers is a long distance, although many confessed to walking the distance due to lack of funds. A small number of mothers, that is 10.6%, stated that they walked to BMC because they did not have access to any other means of transport. However some men reported being carrying their wives on bicycles to BMC as shown by this statement from the men’s FGD “When it is not possible to get money for transport which is mostly motorcycles we take them on our bicycles and even wait for them because we have to travel back with them’’. 4.4 Awareness of PMTCT services among mothers It was found out that all mothers interviewed (100%) had heard about PMTCT. The majority or 55.3% did so from the radio, while a small number 4.3% did so from community meetings. Other sources where PMTCT information was obtained by the 29 respondents were friends, and the BMC, especially when they had gone for other illnesses to take care of their relatives who were sick. Respondents stated that the much they had heard about PMTCT from the radio, was through the staff at BMC who used to have radio programs educating the communities about their relevance, and how it could be done without causing harm to the mother. Most of the community members got to know about it from listening to the radio. Such programs were aired on radio at a time when most men were expected to be home and this gave them an opportunity also to get to hear about PMTCT services. Although the majority of mothers that is 53.3% were found to be aware of the existence of PMTCT services, what remains in question is whether the knowledge they have is adequate. Their spouses, too, said they knew about PMTCT, as is revealed by the quotation below from the FGD. “The health people usually come to our villages and local towns to tell us bout these things, they call them outreaches which occur once in a while. Even at times when we go for ANC with our wives we hear about PMTCT services’’. The respondents were aware of a number of services under PMTCT which included: the need to test and know one’s status, PMTCT availability and the fact that they are for free, accessible, and, lastly, that it is desirable to test when you are pregnant. Concerning VCT, 44.7% of the mothers took an HIV test for the sake of knowing their status. Although 36.2% were aware that the service was available and free, others assumed that it is costly and did not bother to go and test. On the other hand, there were very few men who had tested for HIV/AIDS with their wives, because, as stated from the FGDs, they feared to be told the results when they are together with their spouses. A 40year old man stated that; “It is better we test separately after all they are the ones who get pregnant not us”! 30 This indicates that the mothers get little or no support during pregnancy from their spouses, especially when the men are working far away from their homes. In regards to PMTCT services preferred by mothers the study established that most of the services offered under PMTCT were mostly informative to the mothers that is 55.3% for use of ARV’s, 78.7% for the service of sensitization, 38.3% for infant feeding, 76.6% for family planning services and lastly 63.8% for VCT services. It should be remembered that the services that fall under the PMTCT are basically five and they include; use of ARVs, sensitization about MTCT, infant feeding, Family planning and finally VCT. The above make the package of PMTCT. The respondents’ knowledge about PMTCT were measured through asking them questions about PMTCT. In this way, questions like when you first heard about PMTCT, who told you, what it is and how one can get access to such services, revealed whether a respondent had sufficient knowledge or no knowledge at all about PMTCT and or ARVs. Figure 5: Time respondents go to BMC for PMTCT for different services. From the above table, it can rightly be stated that most mothers visit the Medical Centre during the morning hours rather than in afternoon or evening hours. This is so because of 31 the distances involved, and the big numbers of clients who are to be served. In order to avoid spending a lot of time at the centre they prefer coming quite early, so that they can go back home and do other tasks. Figure 6: Charges on PMTCT services When respondents were asked whether they pay for the PMTCT services they got from BMC, they replied differently with a bigger percentage of 94% saying the services were for free while a minority 6% stated that they had paid for those services. This minority said that they paid for the services, these costs are of transport and time they spend at the centre to money, hence saying that the services were not free of charge. Additionally, some women expected to get such services from home so the fact that they had to come for them at the centre confirms that they are not for free. See chart below. 4.5 Factors that influence mothers’ utilization of PMTCT services. In regards to where mothers access PMTCT services, those who sought PMTCT services from BMC were 64%, compared to those who got the same services from other private and government hospitals and clinics who comprised only 32% with the remaining 4% getting such services from both BMC and others. There are various reasons why respondents preferred BMC as compared to other places. Among them were the following; 32 1. BMC PMTCT services are offered for free to all mothers, something which gives them the enticement to take advantage of the services in a manner they would not if the services were to be bought. 2. The drugs are always there unlike in some of the government hospitals where you can go and find there are no drugs or the services you are looking for. 3. The centre was nearer to them and convenient for them to easily access. 4. The staff of BMC is hospitable and respectable. 4.6 Support from medical personnel. The medical personnel of BMC offered a range of support to their clients which included; Encouraging mothers to keep coming, administering medication, being hospitable and giving attention and time to the mothers whenever they had an issue they wanted clarified by the medical personnel. In addition to the above, medical workers listed a number of ways how PMTCT services are utilized at the medical center Mothers attend ANC. They endeavor to deliver from BMC. They take HIV tests of children at 18 months They come for ARV’s. There were special rooms as well, for voluntary counseling and testing but especially for privacy purposes which put the mother’s at ease. A special team which comprised of a Doctor, midwife, counselors and a lab technician were ready to attend to those requesting for PMTCT services They mentioned that the commonly preferred services were VCT and family planning which they accessed as they came for ANC. In addition they had a weekly programme which they had to visit communities doing out reaches whose package included PMTCT services. For more support to the mothers the medical personnel insisted on husbands coming with their wives for antenatal check ups and most important of all VCT. 33 CHAPTER FIVE INTERPRETATION AND DISCUSSION OF THE STUDY FINDINGS 5.0 Introduction The chapter presents an interpretation and discussion of the study findings. The interpretations and discussions are arranged in themes for easy follow up and how the issues were being raised and presented in the chapter above. 5.1 Issues of women awareness about the availability of PMCT services It clearly came out that most women from surrounding villages at BMC got to hear about the availability of PMTCT services from radio announcements and health workers who used to walk around the community sensitizing them about the need to take advantage of PMTCT services available in the district if they wanted to produce normal and healthy children. The health workers used to move around the community, to hold village meetings where they encouraged both men and women to participate so as to educate them on the various merits that accrue from the HIV positive mothers gain from accessing PMTCT services. This discovery is not as it was stated in the literature that since the implementation of PMTCT in Uganda that is 2000, mothers may not be aware of the existence of PMTCT services Radio programs and announcements were supplemented by mothers sharing with each other what they had heard about PMTCT. This was commonly done among friends, neighbours and relatives who had got the information first and had to share it with the rest of their friends in a bid to help them deliver and raise healthy children free from HIV/AIDS infection. The health workers using this method and supplementing it with the radio programs and adverts all aimed at changing people’s attitude since changing an attitude is a gradual 34 process. This is well shown over the years as many mothers continue coming seeking for the PMTCT services compared to when the program had just started. 5.2 Access and utilisation of PMTCT services in Bushenyi Medical center 5.2.1 Necessity of participating in the PMTCT The real necessity for mothers who are HIV/AIDS positive to participate in PMTCT is that they produce HIV negative children, and are helped with infant feeding which helps them not to breastfeed, since it is through breastfeeding a child may catch the virus. Mothers are given the best care during their delivery process; and, above all, are sensitized on how to go about the whole issue of producing and nurturing healthy babies even when they are HIV positive. Although these mothers were got from the register of PMTCT from PMTCT, some mothers admitted to using other services from elsewhere other than BMC and PMTCT services in particular In the long run, the above scenario leads to reduced infant mortality rate which is still a very big problem in most developing countries, Uganda inclusive. 5.2.2 Factors affecting access The fact that PMTCT services are for free and clients are not asked for money to benefit from them is an important factor in accessing these services. This is evidenced by the big percentage of 94% of the mothers who said that there were no charges for all the PMTCT services. This also corresponded precisely with what the Medical Personnel working at BMC, namely, that their services were indeed free. Although BMC is a private health facility it was confirmed that it offers these services free of charge to encourage mothers to use them. The 6% of the respondents who stated that they had paid for the same services associated costs like those on transport to the services provided. The major cost of infant formula of 15,000 to 20,000/= as stated (WHO,1994) is not the issue here but 35 other costs. The men admitted that services were free but transport costs were a challenge, since they stayed at quite a distance from BMC. One was quoted saying; “We would rather attend nearby clinics which do not have PMTCT services and go to BMC once in a while” This therefore means that much as the services are offered for free at BMC for all the mothers, some mothers stayed home after the initial visit. The distance that a mother walks from her home to BMC affects her greatly in relation to the issue of accessibility as almost majority came from a distance was estimated to be three kilometers and above. Other issues such as the privacy of the clients were also very pertinent in as far as one’s continuity in using the PMTCT services provided at BMC was concerned. On the whole, the issue of stigma is still very high among the rural and less educated people; and so when they get to know that you are benefiting from the PMTCT program they can easily spread the news in the entire village. However, the health staff at BMC has done all it can to keep the privacy of all its clients and that is one of the reasons as to why many mothers have developed trust and thus continue accessing the services the centre offers. 5.2.3 Utilisation of PMTCT Most women have been sensitized on the need to take advantage of the free services so that they can plan well for their families. That is why an effort was made to include the husbands as well because mothers alone do not plan for the family but together with their husbands. As encouraged by medical personnel. Reduction in the level stigma through sensitizations about PMTCT increased access and utilisation of PMTCT services at Bushenyi Medical Center. This is so because at first many people feared testing and knowing their HIV status. This consequently affected the 36 number of people who turned up for ARVs and led to increased number of mother accessing PMTCT services The need for having healthy babies forced mothers to go and seek for information. Many of the mothers had seen how the children of those who were using infant feeding were healthy and nice looking, and thus, started also seeking for the same services. Since all PMTCT services are interrelated, seeking one leads to another. Thus after accessing one of the services, and one may be told of the others and about how complementary they are. However, there are also factors which hinder the mothers from using or accessing PMTCT services in the area that is served by BMC. These factors include; sickness among the mothers, long queues at the centre which discourage some mothers especially those who are weak, transport costs involved especially for those who have to use Motor Bikes, while some husbands, simply refuse for their wives to go and attend or get access to PMTCT services. Then there are those who are not HIV positive. These cannot benefit from those services especially the infant feeding, however much they may need it. 5.3 Assistance given to mothers from the Health Personnel The interviews with the medical personnel showed that they were always ready and willing to offer assistance to the mothers. These kinds of assistance ranged from giving advice/ counseling, educating as well as mobilizing them to come for meetings and other group or organizational activities organized for the participation of the communities where such mothers came from. The community members, both husbands and mothers also appreciated the service which was being rendered to them by the health personnel at BMC. Many agreed that the staff at BMC is not cruel to them and treats them with respect, as compared to other places where the same services are sought from in the district. This was also found through literature review where by it was clearly stated that the hospital staff were expected at all times to treat clients with respect and confidentiality. 37 It should be noted that since the health staff at BMC offered to involve men in their sensitization programs, this was a great assistance and relief to the mothers as the husbands became part and parcel of the whole PMTCT program. Prior to their involvement, many men used not to allow their women to participate in such programs saying they were wasting their valuable time which could instead be used to do more productive things at home. This lack of moral and psychological support at the start affected women so much that others would be punished or stopped altogether from going to the centre to access PMTCT services. Due to the fact that many mothers have joined or got support from the health workers at BMC, many more others have been attracted to come and test for their HIV status. This has been very crucial, as it has made many more people aware of their status and, hence to plan accordingly for their families. The fact that PMTCT package includes infant feeding, has in a very big way reduced infant mortality rates which used to be a very big problem facing the communities now being served by the centre. 5.4 Expectations of Mothers from BMC staff and management Despite the many ways through which the communities have benefited from the services of BMC, the respondents had some more expectations from the service provider so that they can be fully enabled as community members to benefit from the offered services. Those expectations included the following as listed in one of the focus group discussions with women:- a. More medical care and support b. Specific times and dates for sensitization. c. Availability and administration of services promptly all always d. Continuing with the good work and hospitality being given now. e. Increase in the number of medical personnel. f. Provision of transport, contacts, and mosquito nets. g. Encouragement of service users to keep coming regularly. 38 In like manner, the medical personnel too gave their view some mother’s expectations from them, especially in areas and confirmed that their future planning will try to address the following areas; a) Continuous counseling for all the clients who turn up to the centre. b) HIV/AIDS and STI screening so as treat most of the STIs in the communities. c) Delivery of HIV free babies and good health for mothers through the improvement of VCT and ARVs program. d) Enrollment of many health workers, so that the patients can spend less time at the centre than they are doing presently. e) Promotion of family planning. f) Support for optimal infant feeding 39 CHAPTER SIX COCLUSIONS AND RECOMMENDATIONS 6.1 Introduction The study aimed at investigating utilization of PMTCT services by mothers in BMC. This chapter presents the conclusions and recommendations of the study. 6.2 Conclusions All mothers who participated in this study were aware of the existence of PMTCT services provided by BMC. This probably shows that there is no information gap between BMC and its target clients. However, it should also be related to the way how the respondents were selected because the names of participants were selected from the register of the mothers who were beneficiaries to the PMTCT program offered by BMC. On average mothers used the PMTCT services especially those who had got the information about the availability of the services. Those who were near the centre were more responsive compared to those who were living far away from the centre. Those who were living far away from the centre had several limitations including having insufficient information on the availability of the services, the perceived benefits, cultural attitudes, and transport challenges from their homes to the centre. Poor spouse support to mothers was established during the research, most men admitted not wanting to go for couple counseling or an HIV test with their spouses putting them at risk of infection. The expectant mothers and the children had no powers over husbands in as far as influencing their choices was concerned. Support from medical personnel in charge of PMTCT services was established. They encouraged mothers to return for the services and were always ready to serve them. All mothers interviewed had expectations of them which were met making it comfortable to use PMTCT services in confidence. 40 Cultural beliefs about breast feeding were not a hindrance at all to the use of PMTCT services due to sensitization about HIV/AIDS ant the need to prevent child infection with HIV/ AIDS. Government supplies are limited and cannot cater for all the breastfeeding mothers. However, majority of the mothers could not afford the alternative feeds because they were expensive and not readily available in the district and had to be brought from Kampala. The Medical personnel encouraged mothers to use alternative substitutes which they could afford instead of not using them completely. Of the PMTCT services provided, sensitization about MTCT of HIV/AIDS was most preferred together with family planning because they are most used. VCT was not popular since it involved testing for HIV/AIDS with a partner which the male spouses did not want eventually leaving the mother to take the test alone. Infant feeding services and ARV’s were used but not as much. The most used services were credited to the fact that they get a lot of information to keep healthy and the fact that they get to know their serostatus fast. PMTCT services were all free, encouraging mothers to access and use them for their benefit. Clients are attended to on a daily basis with no particular schedule. The quality of PMTCT services was rated good and very good particularly due to well trained service providers who were good, and also the fact that services are free of charge apart from the transport costs. 6.3 Recommendations. A number of recommendations have been made for the various stakeholders involved in the practice of PMTCT in Bushenyi district. 41 6.3. 1 To Community members There is need to organise all the women of child bearing age so that they can know about the availability of the PMTCT services. This will help in enabling all the women in the community to take advantage of such services. This should be done by women group leaders and other leaders in the community especially the LCI committee members, religious leaders, and opinion leaders. Mass sensitisation strategies need to be improvised so as to increase on the levels of awareness of the availability and relevance of the PMTCT. To achieve this, there is need to use radios, community sensitisation meetings, involving religious leaders as well as the men. The providers need to educate the men so that they can allow and facilitate their wives to benefit from the services. 6.3.2 To Government Government and Ministry of Health should recruit more counselors for health centers and also train medical personnel about the new developments in PMTCT services for effective service provision. Government and the ministry of Health should ensure regular supply of medical utilities and drugs for HIV positive mothers in particular. They should create awareness amongst spouses of expectant mothers. This will enable full support to mothers in the use of PMTCT services and also attract new clients. There is also need to motivate mothers to utilize PMTCT services at health centers by continued sensitization and motivation by giving them mama kits (Small package with maternity utilities), mosquito nets, and baby feeding tools. Bushenyi district should build more health facilities especially in sub counties since most are currently concentrated in the town centres making it difficult t for people to access 42 and utilize services especially PMTCT services due to long distances to existing facilities. The Ministry of health and Medical personnel should continue to emphasize and encourage hospital deliveries of babies in order to reduce on HIV infection and deaths of both mother and child. The government should subsidize the prices of infant feeds so as to enable the poor mothers in the villages to afford them. As of now, the prices are high standing between shillings 15,000/= to 20,000/= which cannot be afforded by most households in the rural setting who earns less than a dollar a day. 6.3.3 To Bushenyi Medical Centre Health centers should encourage couple counseling since it is crucial to involve spouse support. Spouses of mothers should be encouraged to offer more support to them. This is because the study revealed that mothers go to BMC alone and sometimes fail to get permission of husbands to use PMTCT services. They should be sensitized about the need for their support in contributing to safe and healthy children. Since motherhood begins as early as 15 years (child bearing age) there is need for continuous sensitization about PMTCT services by health centers and concerned organizations due to the risk of HIV infection of children which is on the increase. In addition, there is also need for community mobilization and sensitization of the same. 6.3.4 To Future researchers on PMTCT services There is need to develop interventions in the provision of PMTCT services to avoid duplication of services and wastage of resources. This can be achieved through coordination amongst health service providers involved in provision of PMTCT in order to develop more effective intervention strategies to meet mother’s needs in a cost effective way. 43 REFERENCES Anderson R. 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IBFAN and CRHCS (1999) Protection of breastfeeding and young child feeding in HIV/AIDS. A report of proceedings of the IBFAN Africa Regional workshop to develop policy guidelines for infant feeding in HIV. Protea capital Hotel, Pretoria South Africa 23-27 August 1999. Jackson Helen (2002), Aids Africa: Continent in crisis. Published by SAF AIDS P.O. Box A 509, Arondale, Harare, Zimbabwe. 44 Joinet A Bernard and Mugolola Theodore (1994), The challenge of Aids in Africa . Part 2. Prevention and survivors. Printed by AMREF Tanzania. Jonathan Mann, Tarantola J.M Daiel, and Netyteer W.Thomas (1992) Aids in the world, Harvard University Press . Leonard Ann, Purnima Mane and Noami Rutenberg (2001) Community involvement initiatives to prevent MTCT of HIV. Evidence for the importance community involvement. Implications for Initiatives to Pprevent MTCT of HIV. Magogo Gavino (2001) AIDS/Health and development. Makerere University (May 2001) Guidelines for research proposal, Thesis/Dissertation writing and examination Makerere University Faculty of social sciences(January, 2005). Guidelines for writing a research proposal for a masters of arts in the faculty of social science. Mc Loy David, Besser Mitch, Visser Renel and Doherly Tanya (2002) Interim findings on the National pilot sites lessons and recommendations. Ministry of Health (2001). Policy for reduction of MTC HIV transmission in Uganda. The republic of Uganda. MOH Uganda (2003) Policy for Reduction of the Mother to Child HIV transmission in Uganda. National youth council secretariat (2005) Young people and HIV/AIDS Nkhwalume Maule (M. Phil 2003), Prevention of mother to child transmission of HIV in N Eastern Botswana : clients and health workers perspective. 45 Rutemberg Noame , Field-Nguer Mary Lyn and Nyablade Laura (2000) Community involvement initiatives to prevent MTCT of HIV. Community involvement in the prevention of MTCT of HIV. Insights and recommendations. Sematimba Peter and Subika Silvamu (2004), Final Report on PMTC program on Super FM 88.5 The joint United Nations Programme on HIV/AIDS (1998) New initiative to reduce HIV transmission from other to child in low income countries. The population council Inc and UNFPA (2002) HIV/AIDS: Prevention guidance for reproductive health professionals in developing country settings. UNAIDS (1997) Mother to child transmission of HIV/AIDS a technical update. UNAIDS (2000) Costing guidelines for HIV prevention strategies 20 avenue Appiu – 1211 Geneva 27-Switzerland UNAIDS (2000) Preventing Mother To Child HIV Transmission: Technical experts recommend use of anti retroviral regiments beyond pilot projects, joint UNAIDs/WHO. Press release Geneva: UNAIDS UNAIDS (2002) Handbook for legislators on HIV/AIDS, law and human rights: action to combat HIV/AIDS in view of its devastating human economic and social impact. UNICEF (2009) Infant and Young Child Feeding programme Review: Case study Uganda WHO (1999) HIV in pregnancy. A review Geneva, WHO. 46 World Health Organization (1990) Guidelines for counseling about HIV infection and disease WHO AIDS Series 8 Geneva Switzerland. World Health Organization Geneva (1994) Aids: Image of the epidemic 47 APPENDIX 1 SEMISTRUCTURED QUESTIONNAIRE FOR MAIN RESPONDENTS: MOTHERS Prevention of mother to child transmission of HIV/AIDS is an intervention for providing antiretroviral drugs (ARV’s) for HIV positive mothers and their babies to prevent HIV from passing on from a mother to an infant. It also includes voluntary counseling and testing, use of ARV’s sensitization on infant feeding and family planning. A. Social demographic data 1. How old are you? a) 15 – 20 b) 21 – 35 c) 36 – 50 d) 50- and above 2. What is your marital status? a) Married b) Single c) Divorced d) Separated e) Other 3. How many children do you have? ____________________________________ 1) First pregnancy 2) Second pregnancy 4. What is your level of formal education? a) Primary b) Secondary c) Tertiary d) University e) None f) Others 48 5. What do you do for a living? a) Subsistence farming b) Shop keeping c) Others (bee keeping and piggery) 6. Approximately how much do you earn a month? a) 5000-below b) 10,000 – 40,000 c) 50,000 – 100,000 d) 200,000 – above 7. How far are you from BMC? iS) 1/2km ii) 1km iii) 2km iv) 3km and above B. Awareness of PMTCT services amongst mothers. 8. (a) Have you ever heard about PMTCT Yes No (b) If yes, from where did you get to know about PMTCT services? a) Radio b) Community meetings c) Friends d) Hospital / BMC 9. Who told you about PMTCT services?………………………………………… 10. What kind of information have you been told about PMTCT services? a) VCT______________________________________________________ b) Use of ARV’s______________________________________________ c) Sensitization about MTCT_____________________________________ d) Infant feeding_______________________________________________ e) Family planning_____________________________________________ 49 11. Of what use are these services to you? Service Information Therapeutic Preventive Child Other. nutrition a Use of ARV’s b Sensitization about MTCT c Infant feeding d Family planning e VCT 12.(a) How would you rate the quality of PMTCT services at BMC? Services Poor Fair Good Very good a) VCT b) Use of ARV’s c) Sensitization about MTCT d) Infant feeding e) Family planning 12. (b) Give reason for your ratings i) VCT___________________________________________________ ii) ARV’s_________________________________________________ iii) Sensitization____________________________________________ iv) Infant feeding____________________________________________ 50 v) C. Family planning__________________________________________ Preferred PMTCT services 13(a) Rank the services in order of importance to you. Slightly important Very important Not important important VCT Use of ARV’s Sensitization about MTCT Infant feeding Family planning b) Give reason for your ranking VCT____________________________________________________________ Use of ARV’s____________________________________________________ Sensitization about MTCT__________________________________________ Infant feeding_____________________________________________________ Family planning___________________________________________________ 14. When do you go to BMC for specifically PMTCT services? Morning Afternoon VCT Use of ARV’s Sensitization about MTCT Infant feeding Family planning. 15(a) Do they charge on any of the PMTCT services? Yes No 51 Evening Night D. Factors that influence mothers’ utilization of PMTCT services. 16(a) Which services do you access at BMC? ____________________________________________________________ ____________________________________________________________ ____________________________________________________________ (b) DO you go to BMC or other places for these services? i)__________________________________________________________ ii) Give reason for your answers. ____________________________________________________________ ____________________________________________________________ 17(a) In what ways do medical personnel support you? Yes A Give encouragement to return B Administer medication C They are hospitable D Give them attention and time E Other No 18. What other factors present you from using PMTCT services? ……………………………………………………………………………………… ……………………………………………………………………… 19. What are your expectations of medical personnel who administer PMTCT services? ……………………………………………………………………………………… ……………………………………………………………… 52 APPENDIX II INTERVIEW GUIDE FOR MEDICAL PERSONNEL 1. Sex Male Female 2. What is your profession? a. Doctor b. Nurse assistant c. Counselor d. Clinical officer e. Other 3. When were PMTCT services introduced here at BMC? ……………………………………………………………………………………… ……………………………………………………………………………………… 4. Which PMTCT service do you deliver? VCT Use of ARV’s Sensitize about MTCT Infant feeding Family planning 5. How many clients do you attend to? a) Weekly ………… b) Daily ………….. c) Monthly ………….. d) Annually…………... 6. How is the service you deliver being utilized by mothers? ……………………………………………………………………………………… ……………………………………………………………………………………… 53 7. Which PMTCT services are offered here at BMC? ……………………………………………………………………………………… ……………………………………………………………………………………… ……………………………………………………………………………………… 8. What is their schedule of delivery? ……………………………………………………………………………………… ……………………………………………………………………………………… …………………………………………………………………………………….. 9. How can provision of PMTC services be improved? ……………………………………………………………………………………… ……………………………………………………………………………………… ……………………………………………………………………………………… b) What do patients expect when they come to BMC for PMTCT services? 54 APPENDIX III FGD GUIDE 1. Whether they know about PMTCT services at BMC. 2. Do they support their wives in use of the service? 3. Have they tested for HIV/AIDS with their spouses? 4. Is it costly for them in terms of distance and use? 5. If they see its importance in fighting for child survival 6. Other challenges other than MTCT which may hinder them to support their wives in use of the service. 7. Are they willing to be involved in PMTCT service utilization through wife support? 8. Does PMTCT mean anything to you? 9. Their belief in modern medication. 55