Vaccine safety perceptions among parents in developing countries and influence of adverse events following immunization (AEFI) on their decisions to vaccinate children
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Over the last five years, Uganda has implemented a highly successful Expanded Immunization Programme (EPI). Currently, immunization coverage is estimated at 71 percent for all antigens from a low of 37 percent in 2000/01. This has resulted in the drastic drop in the incidence and prevalence of immunizable diseases. In order to consolidate the gains made and further increase coverage of immunization, Uganda has set ambitious targets to increase the proportion of fully immunized children from 71 percent to 80 percent by 2010. A multi-pronged approach has been adopted to increase access and utilisation of immunisation services, with a main focus on increasing access to services through static and outreach sites, ensuring constant vaccine availability and efficacy, strengthening surveillance systems to monitor trends in immunizable diseases as well as intensive community mobilization. In addition mass immunisation campaigns have been introduced to supplement traditional routine services. Efforts are also underway to integrate immunisation into the routine primary health care services. However, sustaining the high levels of full immunization remains a challenge. Over the last twenty years, trends in immunisation coverage have been uneven, and outbreaks of hitherto controlled immunisable diseases are common. For instance, a fresh measles outbreak has been reported in seven districts of Kampala, Nakasongola, Kayunga, Mityana, Mpigi, Wakiso and Luweero in the first quarter of 2006. In addition, drop out rates on some antigens; particularly BCG and Pentavalent remain significantly high. The erratic performance of the national immunization programme is attributed to a number of issues including poor community mobilization, limited vaccine management skills at district and lower levels, nonpayment of allowances to vaccinators, poor communication skills of service providers and lack of a strong law in support of immunization. On the other hand, knowledge of immunization among many parents/caretakers remains low and misconceptions about the efficacy and safety of vaccines are prevalent. For parents/caretakers who immunize their children, side effects and AEFI are known to cause anxiety and are recognized to be significant barriers to any successful immunization programme. Therefore, as Uganda moves to consolidate its expanded immunisation program, it is vital to establish parents/caretakersâ perceptions about vaccine safety, side effects and AEFI and how they influence parents/caretakersâ decisions to vaccinate children. This study was launched in this context and seeks to assess parents/caretakers perceptions and concerns about immunization, vaccine safety and AEFI; the prevalence of these concerns and their influence on parents/caretakers decision to vaccinate children. The study is planned to be undertaken in three phases, namely: Formative Phase; Screening Survey; and Follow-up Survey. This report presents findings from the Formative Phase of the study. This phase of the study which was undertaken in two districts of Kampala and Mbarara had the following specific objectives: to determine parents/caretakersâ knowledge and attitudes towards immunizations (both routine and mass immunization activities), immunization safety and AEFI; identify community concerns/fears about childhood immunizations and vaccine safety; identify community sources of information on immunization, vaccine safety and AEFI; obtain the understanding of knowledge, perceptions, and experience of health workers about vaccine safety and AEFI; obtain information about the type of reports of AEFI observed and acted upon by health workers; obtain suggestions as to what would allay parents/caretakersâ concerns about vaccine safety and AEFI; and to generate valuable data to inform the Follow-up Survey. This Stage of the study entailed conducting Focus Group Discussions with parents/caretakers of children 0-5 years selected using a three-stage cluster sampling. This was done by first, randomly selecting one sub-county to represent the entire district. In each sub-county, two parishes were then randomly selected, from which two villages were also randomly selected. Using an Eligibility Screening Tool, the first twelve parents/caretakers in each selected villages with primary responsibilities over the care and health decision-making regarding children aged 5 years or younger and whose answer to the screening question, â How concerned are you about the safety of childhood vaccines?â was either, â very concernedâ or â somewhat concernedâ were selected as FGD participants. The parents/caretakers who had concerns but were not willing to take part in the study, those enrolled as health workers or who have their immediate household member employed in the health care field were excluded. In-Depth Interviews were also conducted with national policy makers, technocrats, district health officials, health care providers directly involved in delivery of childhood immunization services as well as community leaders. To complement and triangulate findings from FGDs and In-depth interviews, a review of relevant documents was carried out. This entailed a review of policy and programme documents on immunization mainly obtained from Ministry of Health, UNICEF, WHO and the Internet. Uganda has an elaborate immunization policy (in draft form) with complementary operational guidelines and standards to support service providers. This is reinforced by high level political will as demonstrated by the personal involvement of the President as well as district and local leaders in EPI revitalization campaigns. In addition, implementation procedures as well as key staff at all levels are in place to oversee the cold chain system and immunization service delivery. Routine, mass and home to home immunization arrangements have been employed as key strategies to increase access to immunization services for eligible children. Child days are also often used as avenues for accessing immunisation services to children. To bolster community mobilisation Parish Mobilisers have been trained and together with local leaders, they have had significant impact on raising awareness and improving immunization service seeking behaviour at community level. They also serve as indigenous sources of immunisation information to the communities. A review of the trends in immunisation services over the last three years showed an upward trend in usage across all the antigens. The exception has been the drop out rates on BCG and Pentavalent vaccines which remain high and a challenge to the immunization programme. The key factors that contribute to failure to attain required immunization targets were reported to include: inadequate community mobilization; concerns, misconceptions and rumours about immunization and vaccine safety; and inadequate resources both human and financial. In addition, operational constraints (such as transport, manpower shortages and erratic power supply) continue to encumber the immunization programme especially at district and sub-district levels. Parents/caretakers knowledge of the benefits of immunization was high especially with regard to vaccines raising body immunity against immunizable diseases. However, a few misconceptions and gaps on the benefits were noted such as an immunized child does not fall sick frequently and does not suffer from stunted growth. There appeared to be sufficient knowledge among caretakers regarding the identification and management of the side effects but not AEFI. However, there was apparent lack of accurate knowledge on the immunizable diseases, the respective vaccines and recommended doses among the parents/caretakers. The discussion on immunizable diseases and their schedules revealed no significant difference in knowledge between urban and rural or between male and female parents/caretakers. The fact that more than one disease can be immunised using one vaccine and that more than one vaccine can be given at a time seems to add to caretakersâ confusion regarding what vaccines are administered at any one time and the number of times a child has to be immunized for a given disease which leads to drop-outs. Furthermore, the distinction of AEFI from side effects was not clear unless an AEFI threatens life. Consequently, there was use of common approaches to managing both with slight variation between urban and rural areas. Parents/caretakers rarely reported AEFI to immunization centres as expected. Moreover, immunization centres also handle reported AEFI cases as other ordinary illnesses and simply refer them to the outpatient department (OPD). They donâ t even report such cases to the DDHS as expected. In Uganda, routine and mass immunizations are the two arrangements most commonly used by caretakers to immunize their children. However, majority of caretakers use and prefer routine chiefly because they are suspicious of the aims and objectives of mass immunizations. Parents/caretakers perceive vaccines used during mass immunization not to be safe either because they are expired or are deliberately contaminated with harmful agents intended to harm their children. Radio, interpersonal communication through parish mobilisers, health workers and local leaders are the main channels through which communities access information on immunization. In general, information provided to parents/caretakers is primarily about encouraging them to take their children for immunization; assuring them of vaccine safety; age limit of immunizable children; planned mass immunization activities; immunization schedules for particular vaccines; the benefits of immunization; and the expected side effects. However, the role of this information was perceived by most parents/caretakers as mainly on raising awareness about imminent child immunization activities in their area and encouraging parents to complete immunisation doses. Most parents/caretakers felt that the information has little impact on their decisions to participate in immunization services indicating a gap in effective community mobilization for immunization. A host of concerns/fears on immunisation and vaccine safety was reported by parents/caretakers. These relate mainly to administration of immunisation services and the potency and safety of all or some of the vaccines. Most of the parents/caretakers vaccine safety concerns gravitated around the incident of the 1990s where children were reported to have died or developed physical disabilities after mass immunization. Many parents/caretakers also question the rationale and safety of immunising children numerous times without due consideration of previous vaccinations received. This was reported to be usually done during mass immunisation, where no clear explanations are given regarding the safety and benefits of this approach. The rather coercive approaches used to mobilise parents/caretakers for mass immunization further heighten their suspicions especially when compared to the routine immunisation arrangement which is voluntary. The recent rampant power shortages in the country have also raised more concerns among caretakers on vaccine storage and safety. This is primarily because parents/caretakers are unaware of other backup measures in place to ensure that the vaccines remain potent and safe all the time. The high turnover of vaccinatorsâ , inadequate resources and transport for vaccines constrain timely service delivery at the expense of the consumer. The high staff turn over due to poor pay was recognised by policy makers as a daunting challenge to the consolidation and sustainability of the immunisation programme. A number of challenges abound throughout the â distribution chainâ of the vaccines throughout the country as well as the immunisation service delivery at facility level. While adequate vaccine supplies were reportedly procured on time, the distribution within the country was not as efficient due to old vehicles that transport the vaccines and other supplies to districts. At the district level, the transport problem is more acute with some districts, such as Kampala, lacking specific vehicles for immunisation services. In such situations, district cold chain assistants have no choice but to rely on transport facilities of other departments in order to carry out their field activities of monitoring; providing technical support; and delivering vaccines and other supplies to the numerous immunisation centres scattered all over the districts. In other districts, its lack of fuel, vehicle frequent breakdowns or lack of driverâ s allowances that constrain timely delivery of services. Consequently, it is not uncommon for some immunisation centres to experience shortages of vaccines and other supplies. The ineffective communication between parents/caretakers and health workers especially with regard to vaccines their children will receive, their value, and the associated side effects and concerns seem to account for much of the misconceptions held by parents/caretakers on immunization and vaccine safety. The sustainability of continuous community sensitization and mobilization amidst scarcity of funds is another challenge facing immunisation programs. The parish mobilizers who are supposed to play a major role in community mobilization are poorly motivated. Some are merely volunteers who are not facilitated in any way limiting their effectiveness. On the part of parents/caretakers, ignorance, cultural and religious beliefs were reported by health workers as major causes of parents/caretakersâ concerns with implications on immunisation uptake of mass immunisation and completion of immunisation doses through routine arrangements. Despite the high levels of community knowledge on benefits of immunisation of children, the apparent lack of accurate knowledge on the immunizable diseases, the respective vaccines and recommended doses continue to have a significant impact on parents/caretakersâ practices regarding childhood immunisation, especially the completion of recommended doses. The immunisation card needs to be redesigned in a such a way that even people who are illiterate can interprete the basic messages it carries. Furthermore, health providers need to spare time to explain to caretakers about the vaccines given, expected side effects and their management, and vaccine doses due. The inability to distinguish AEFI from side effects remains partly responsible for the community negative perceptions associated with immunisation and vaccine safety. Specific and targeted interventions on identification, reporting, and management of side effects are needed to deal with misconceptions. The parents/caretakers misconceptions on the one hand indicate that they are still bound by their cultural, social and religious beliefs. On the other hand, they point to the absence of communication skills among the health providers to effectively deliver the information required to adequately educate the community on immunisation services. Improvement of uptake of immunisation in the communities will require strategies and skills that will minimise the held misconceptions on immunisation and vaccine safety. There is therefore need to make available more resources, both human and financial, to adequately mobilise the community, train health workers and equip health units towards sustained and improved immunisation programs. Available empirical evidence shows that parents/caretakers have as a community or as individuals experienced some AEFI. The commonly referred to incident of the 1990s where some children are reported to have died or developed physical disabilities remain fresh on their minds. Others are the side effects that daunt both the children and caretakers sometimes developing into AEFI. Government needs to recognise the incident of the 1990s and provide a clear explanation to the public as to what happened. Government needs to reassure the public that such an incident will never happen again by explaining the measures that have been put in place to ensure maximum vaccine safety. Otherwise, dismissing the incident as a mere rumour or misconception will not make it go a way.