The Contribution of Social Norms and Behavioural Practices towards Low Death Registration in 3 HDSS Sites of Uganda

doi:10.21203/rs.3.rs-1453815/v1

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Research Article

The Contribution of Social Norms and Behavioural Practices towards Low Death Registration in 3 HDSS Sites of Uganda

https://doi.org/10.21203/rs.3.rs-1453815/v1

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Background: Uganda has low levels of death registration, estimated at two per cent by the National Identification and Registration Authority (NIRA). There are 56 tribes and over 5 religious denominations with so many social norms and behavioural practices that could have contributed towards low death registration in Uganda. Previous studies on the factors affecting death registration have not assessed the contribution of social norms and behavioural practices towards low death registration in developing countries.

Methods: The current research has been conducted in 3 Health and Demographic Surveillance System (HDSS) sites of Uganda to fill this knowledge gap. The study adopted a qualitative approach by conducting 26 interviews, 6 focus group discussions, and a document review. The study targeted men, women, district local government leaders, hospital administrators, religious leaders, cultural leaders, village health teams, HDSS village scouts, and opinion leaders.

Results: There is very low death registration rates in the Iganga-Mayuge, Kyamulibwa, and Rakai HDSS sites and also expounded on how social norms and behavioural practices either hinder or discourage death registration initiatives by the government of Uganda. Some of these norms include informal will-making and inheritance sharing and taboos to announce the death of twins, infants, neonates, and even suicides. Religious institutions have their own set of rules, practices, and norms, which in most cases discourage death registration—for example, praying for the dead only when they or their relatives have been actively engaged in religious activities.

Conclusion: The study confirms that social norms and behavioural practices contribute to low death registration in the 3 HDSS sites of Uganda. The civil registration authorities in Uganda, therefore, need to recognize the heterogeneity of cultural norms, religious beliefs and practices around death and how these influence the propensity for different deaths to be registered.

inheritance

bride wealth

Covid-19

notification

and ritual

Every country requires critical population data to plan for its citizens. Mortality data is one of the most important population data that is generated by law through death registration. The Global Sustainable Development Goals (SDGs) proposes an indicator of 80% death registration among countries by 2030 [1]. The World Health Statistics 2021 show that only 62% of the global 55.4 million deaths are registered through the Civil Registration system annually. Among the world regions, only 10% of deaths in Africa have been registered which is extremely lower than the rest of the world regions (Europe-98%, America-91%, Western Pacific-82%, South East Asia-61, and Eastern Mediterranean-55%) [2].

The United Nations define death registration as the registration of every death event that occurs to all population groups in a country within a specified period [3]. The estimation of the death registration rate is calculated as a percentage of the expected number of deaths in a given year that are registered or captured by the civil registration system in the same year. However, there are other ways to estimate death registration completeness such as capture-recapture methods and indirect demographic methods known as death distribution methods [4].

Death registration is key in ensuring accurate monitoring and reporting of progress for countries to achieve the global sustainable development goals. For instance, Goal 3 of the SDGs focuses on providing healthy lives and promoting well-being for all ages. Target 3.6 aims to halve the number of global deaths and injuries from road traffic accidents by 2020 [5]. This enables countries, especially in sub-Saharan Africa, to achieve goal 3 of the SDGs by increasing death registration. In Uganda, there is no vital statistics data to monitor SDGs, and hence census and Demographic and Health Survey (DHS) are usually relied on for public health interventions and decision making [6,7]. However, census and DHS are usually conducted after 10 and 5 years respectively and hence may not accurately explain the actual population dynamics. An effective Civil Registration and Vital Statistics (CRVS) system with accurate vital statistics on death registration and cause of death is, therefore very paramount in meeting and monitoring the 2030 global SDGs.

In addition, death registration offers several benefits. For example, health workers and decision-makers use death registration information to understand and monitor the causes and levels of mortality in their communities [3]. The report helps evaluate the effectiveness and impact of health programming, including forecasting the burden of diseases. Death records serve numerous administrative purposes; primary among these is the updating of other administrative databases, such as national population registers, national identification databases, voters’ registers, taxation registers, and government service files [8]. In so doing, death records help to avoid identity fraud and ensure that services are correctly targeted. The rise in ghost voters and ghost employees is well evidenced in many countries today, contributing to civil strife and the loss of billions of government resources. These cases arise from the failure to purge records and documents of the dead from existing databases. Death records also play a critical role in guiding public safety and accident prevention [8].

Further, death registration is very important to the governments and the public in numerous ways; settlement of pension claims, insurance benefits, remarriage, resolution of criminal cases, calculation of death rates, and determination of the major causes of death prevailing in the population [8,9]. Death registration helps compile death data for planning, policy formulation, and programming in health, education, agriculture, water, sanitation, employment, and industrial production [9].

Several studies have been conducted in both developed and developing countries to ascertain the factors affecting death registration [9, 10, 11, 12]. Many of these studies have explored the contribution of poor laws, inadequate resources, and poor infrastructure, among others, on death registration. Unfortunately, limited research has been conducted to unpack the contribution of social norms and behavioural practices towards low death registration in developing countries, particularly Uganda. For example, a recent study in Uganda [10] over ten determinants of death registration: lack of political will, outdated legal frameworks, few registration centres, inadequate funding, uncoordinated registration systems, inadequate training among NIRA staff, lack of enforcement mechanisms, low technology use and poor attitude of registration officers among others. This study did not find out the extent to which social norms and behavioural practices has contributed to low death registration in Uganda.

Guided by the social norms theory [13] and the theory of planned behaviour [14], the current study will examine the contribution of social norms and behavioural practices towards low death registration in 3 HDSS sites of Uganda. Social norms refer to unwritten rules governing the behaviour of people living in the community [15]. The existence of social norms in a society motivates the actions of people and can even exert pressure on individuals to act in a particular way due to the positive or negative consequences accruing to the norms [13]. The social norms theory was key in examining the current social norms surrounding death registration in 3 HDSS sites of Uganda. The theory of planned behaviour explains the factors that motivate groups and individuals to conduct the death registration of their loved ones with the Civil registration authorities [14].

A study examining the impact of traditional and religious practices on the spread of the Ebola virus disease in West Africa revealed that conventional burial practices curtailed death registration [16]. Teams taking care of the bodies of the deceased in West Africa often conducted burials before informing the relatives of the deceased. Given the sacred obligations that are done to the deceased and the value placed on funeral traditions, this created suspicion and discontentment amongst the affected communities. To prevent their relatives from being cremated or buried without their consent, some community members did not register the deaths of their relatives to Civil Registration authorities and secretly continued with their traditional burial practices, which escalated the spread of Ebola Virus Disease [16].

A study in South Sudan showed that the dead are buried on family land as proof of land ownership and to keep a relationship with the soil [17]. The same situation applies to Uganda, where most of the land is under the customary land tenure system. With increasing land disputes in Uganda, individuals usually point to the grave as evidence to support their claims to customary land ownership in the absence of land titles, especially in rural areas. As a result, most community members prefer to bury their dead on land where they have land rights and a spiritual relationship with the soil [17]. Such social norms can discourage death registration because customary land ownership is being proven by pointing at the graves in the farmyard and not necessarily through the letters of administration that are processed after presenting a death certificate for the deceased.

Uganda has 56 tribes with so many social norms and behavioural practices that may have a far-reaching contribution to low death registration [18]. These cultural norms and behavioural practices have been practised as a rite of passage for generations. They are further promoted by cultural institutions and their leaders in different parts of the country following the restoration of cultural institutions in 1993 after their abolition in 1967. Article 246 of the 1995 Uganda’s constitution provides for the revitalisation, strengthening, and support of traditional cultural institutions [18]. To date, the Government recognises and supports cultural and religious institutions that continue to propagate social norms and behavioural practices amongst the community members thereby hindering or discouraging death registration.

Death Registration in Uganda

The National Identification and Registrations Authority (NIRA) is mandated under the Registration of Persons Act 2015 (ROPA 2015) to register all deaths in Uganda. NIRA estimates that about 370,000 deaths occur in Uganda annually with 61.6% and 38.4% of these deaths occurring in communities and health facilities respectively [19]. However, only about 2% of the annual deaths are registered in the Civil Registration and Vital Statistics System [20].

The ROPA 2015 states that registration of deaths is free and compulsory in fulfilment of Uganda’s constitution article 18, “the State shall register every birth, marriage, and death occurring within Uganda” [18]. A registration officer in a specific area is mandated to enter the death and details of the deceased once the notification has been made. Notification of death is done by the next of kin or other relatives of the deceased present at the time of death [21]. The notification must include the details surrounding the death. Notification should be done immediately or not later than three months from the date of death. Death outside the country should be notified to the nearest mission abroad and registration is done there.

The business process for death registration in Uganda begins with notification at the sub-county or a health facility for the community and institutional death. For death in the community, evidence of death is reported to the sub-county chief by an informer/next of kin in the form of a letter from the Local Council 1 and the National Identification card of the deceased. The informer completes Death Notification Form 12, and the information is entered into a manual death register placed at Sub-county by NIRA. A copy of the Death Notification Form 12 is then picked by the Assistant District Registration Officer (DRO) in weekly visits or when called and then entered into the Mobile Vital Records System (MVRS). It is then verified by the DRO and relayed to the National Identification Register based at NIRA Headquarters in Kampala. An informant is asked to pay UGX 5,000 for a death certificate. On presentation of payment receipt, the District Registration Officer prints under Civil Registration Information Management System (CRIMS) and issues a death certificate. When a death occurs at the health facility, the hospital administrator completes Death Notification Form 12. The information is entered into a manual death register placed at the health facility by NIRA. The Assistant DRO then picks a copy of the Death Notification Form 12 weekly visits or when called and then entered into the MVRS. It is then verified by the DRO and relayed to the National Identification Register based at NIRA Headquarters in Kampala. On payment of the death certificate fees of UGX 5,000, a death certificate is printed under CRIMS and issued by the DRO. The social norms and behavioural impediments to the current official procedures of death registration occur at the stage of death notification.

The Government of Uganda gazetted public, missionary, and industrial hospitals, 218 district health centre IVs, 1350 sub-counties, town councils, municipalities, and 5 divisions of Kampala city death notification areas [19]. In the year 2012, the Mobile Vital Records System (MVRS) was designed with support from UNICEF to enable timely submission of returns for birth and death registrations and create a database for real-time retrieval of information. The death notification module was activated in the MVRS in the first quarter of the year 2020, implying that most of the death notifications were done manually in the death registration registers [19]. The registration of vital events such as a death relies mainly on the Local Government (LG) structures and health facilities to decentralize its functions. The sub-county chiefs are mandated to register births and deaths [19]. NIRA report shows that death registration in Uganda is at 2% nationally, implying that it is low even in the HDSS sites where the current study was conducted [19].

The current study, therefore, examines the contribution of social norms and behavioural practices towards low death registration in the 3 HDSS sites of Uganda.

Study design and Area

The study adopted a cross-sectional survey design using a qualitative study approach. The study was conducted in 3 HDSS sites of Uganda; Iganga-Mayuge HDSS site in the Eastern region (Bulamagi sub-county & Nakigo sub-county), Kyamulibwa HDSS site (Kyamulibwa sub-county), and Rakai HDSS site (Kyotera sub-county & Kalisizo town council), both of which are found in Central region. These areas were chosen because the HDSS sites have monitored their populations for over ten years. This study area was also chosen because it represents two regions with strong cultural and religious institutions (Busoga kingdom, Buganda Kingdom, all headquarters of Islam, catholic and Anglican religion headquarters in Uganda). The 2014 Uganda National Population and Housing Census indicate that the Baganda in central Uganda and Basoga in Eastern Uganda are the biggest tribes in Uganda in the first (16.5%, 5,555,319) and third positions (8.8%, 2,960,890) respectively [6]. By Religious denomination, majority Ugandans are Catholics (40%, 13,407,764) followed by Anglican (32%, 10,941,268) and Muslim (14%, 4,663,204) respectively [6]. In addition, 33,805 Ugandans (0.2%) belonged to traditional religion while 78,254 Uganda (0.1%) had no religion [6].

The Iganga-Mayuge Health and Demographic Surveillance System (IMHDSS) site is a research platform established by Makerere University in 2004 in collaboration with Karolinska Institutet-Sweden and partnership with Iganga and Mayuge districts. Information on demographic events at individual and household level data on births, deaths, and migrations are monitored and routinely updated twice a year. The IMHDSS site operates in 65 villages and currently follows over 85,000 people from seven sub-counties in both districts. IMHDSS site covers 155 km² located about 120 kilometres east of Kampala- the Capital City of Uganda along the Uganda-Kenya highway.

Kyamulibwa HDSS site was established in 1989 to describe the dynamics of the HIV epidemic in Uganda and to study the determinants of HIV infection in a rural population. Kyamulibwa HDSS site has a population size of 22,000 people, and it is located in Kalungu district (formerly Masaka district), Central Region. The HDSS site is situated in the Kyamulibwa sub-county and covers six parishes (Bakijjulula, Busoga, Kabaale, Kigasa, Kitosi, and Kyamulibwa) and 55 villages.

Rakai HDSS site, established in 1988, is a collaboration between the Ministry of Health in Uganda, the Uganda Virus Research Institute, Makerere University, Columbia University, Johns Hopkins University, and Rakai District. The site situated in the central region covers 20 sub-counties, 90 parishes, and 706 villages with a population of 50,000 people.

Study Population and Sampling

The study population included; community members, health care workers, cultural leaders, local government leaders, and religious leaders. This population was considered because they were deemed knowledgeable about the contribution of social norms and behavioural practices towards low death registration in the 3 HDSS sites of Uganda.

Sampling and Data Collection methods

Purposive sampling was considered in the selection of the study respondents. The study employed Focus Group Discussions (FGDs), interviews, and document review as data collection methods. Six FGDs were conducted, with 3 of them held specifically for women. In each HDSS site, 2 FGDs (1 for males and 1 for females) with 10 participants were conducted, and they lasted between 1-2 hours.

On top of FGDs, key informant interviews were conducted. In the Iganga-Mayuge HDSS site, 8 interviews were conducted with; sub-county chief, Local Council 1 chairperson, youth chairperson, cultural leader, Islam religious leader, HDSS Village scout, older person, and Village health team member. In the Kyamulibwa HDSS site, 13 interviews were conducted with the assistant town clerk, sub-county chief, Imam, priest, Local Council one (LC1) chairperson, Community Development Officer, Village Health Teams (VHTs), cultural and opinion leaders. In the Rakai HDSS site, 5 interviews were conducted with the Senior town clerk, LC1 chairman, religious leader, Senior Hospital administrator, and a nurse.

Variables

The respondents were asked to mention the existing social norms and behavioural practices towards the dead in their communities. They were further asked to describe the events after a death has occurred in the community. They were also asked if they were aware of death registration by government authority and the requirements necessary to register a death in their community. The participants were asked whether they had ever reported death at their sub-county. Those who had never registered deaths at the sub-county were further asked the reasons for their decision. Those whose reasons for low death registration were related to cultural norms and religious practices were asked to elaborate. Lastly, the participants were asked if there were any ongoing initiatives to improve death registration in their communities.

Ethical Considerations

The study protocol and the tools were approved by Makerere University School of Public Health Internal Review Board (MUSPH IRB protocol number 831). Further research clearance was obtained from the Uganda National Council of Science and Technology (UNCST Licence registration number SS539ES). All methods were carried out in accordance with relevant guidelines and regulations of the Uganda National Council of Science and Technology. Informed consent was obtained from all the study participants.

Data analysis and reporting

During data collection, the participants' voices from focus group discussions and interviews were audio-recorded by the research assistants and later transcribed verbatim. The researcher read through all transcripts and identified themes and subthemes to guide the analysis. All the transcripts were then coded using the ATLAS.ti software. Coding was conducted using deductive and inductive coding approaches. This means that higher-order codes or themes were generated from the research questions while the sub-themes were derived from the responses from the study respondents and participants.

ATLAS.ti report was produced and utilised to show the findings from different respondents, the frequency of mention, and the respondents' location. Finally, all the analysed data was used to inform reporting and manuscript preparation.

Status of Death Registration in HDSS sites of Uganda

Interviews with Subcounty chiefs and town clerks show low death registration rates, below 1% from January to December 2020 in all the four sub-counties and one town council where the study was conducted. The causes of death are not reported. The findings from the qualitative study in all the 3 HDSS sites confirm a low prevalence of death registration as elaborated below:

“Death registration was prominent in the 1980s. By then, it was a must that people had to report to the sub-county chiefs. But people nowadays do not register deaths at the sub-county offices due to various reasons, including distance, cultural norms, money, and religion. In the past month, we have buried many people, but we have not registered any.

(KII, Kyamulibwa Sub-county, Kyamulibwa HDSS).

The few death registrations recorded at the sub-counties are usually done more than three months after a death. This translates into delayed and late registration according to the ROPA 2015. This is further elaborated by one of the key informants thus:

“When a person dies, people do not immediately come to register the death. They come three months later or many years later to register a death especially to process powers of administration for the estate of the deceased. The death registration process is initiated by the family members by asking for a death confirmation letter from the chairperson of the Village to be brought to the sub-county chief. I confirm that the only time people come for death registration is when they are going to the administrator general”.

(KII, Nakigo Sub-county, Iganga-Mayuge HDSS).

Social norms and their contribution towards low death registration

The elderly are buried after 3-4 days of death while the young people are buried after 1-2 days.

An older person is generally buried after 3-4 days of death as they await children, relatives, and community members to gather. On the other hand, the burial of young people usually takes place 1-2 days after death. Older persons usually have properties that are distributed amongst the children of the deceased. Hence, local leaders are typically notified about the deaths because they are usually involved in affirming the property distribution of the dead. Even when an elderly dies, all community members cannot engage in economic activities such as cultivation until burial but rather gather at the deceased home and mourn the dead.

The funeral for a child is usually completed on the same day of death while for adults, it takes some days after burial. This time is usually given to find out some underlying information. For example, the last funeral rite for men is done after 40 days of death to cater for children in the inheritance sharing from wives of the deceased who could have been pregnant at the time of death. Funerals for children have limited activities including informing local leaders. When the funeral is completed on the same day of death, the majority of the people including the family are then preoccupied with their day-to-day chores and activities thereby diminishing the chances of reporting such deaths to civil registration authorities. More people attend burials for the elderly and the family is more likely to register deaths for the elderly as compared to those of the young ones as elaborated thus:

“When an elderly man dies, we do not go to the garden that day but instead congregate with the family of the deceased, days before and after the burial to comfort them. Many people attend the burial, and they come from as far as the towns. However, for young people, children, and women, few people attend. No one can even think of registering such a death, yet old men can be registered”.

(Participant, FGD with men, Bulamagi Sub-county, Iganga-Mayuge HDSS).

Traditional will-making and heir installation after the death of a family head

Traditional will-making before the death of a family head and installation of the heir does not require the processing of letters of administration for the property of the deceased and this consequently discourages death registration. The fact that clan or community members believe in the will read and implemented during “Kwabya olumbe,” i.e., the last funeral rite does not motivate the family members to register the death to the civil registration authority. A death certificate, in this case, is not a requirement before the installation of the heir by the family members. Indeed, even the property sharing among the relatives is based on the uncertified will left by the deceased. The majority of respondents mentioned that the heir installed after this ritual was recognized by all family and community members. Therefore, death registration is not a requirement to give powers of administration on the estates of the deceased to the heir. This is elaborated below thus:

“When the head of a family who has been sick for some time dies, he leaves a will with someone who is not from his family. This ‘will’ is supposed to be read on the burial day or some days after, giving inheritance details of the deceased and mentioning the heir. The heir is allocated a piece of land and sometimes a stool as a symbol that he has taken over leadership from the deceased. This gives the heir recognition and authority over the property of the deceased. Therefore, there is no need to register the death of the deceased to obtain powers of administration for the property since everyone acknowledges the heir installed after this ritual locally known as okwabya olumbe.”.

(Participant, FGD with men, Kyotera Sub-county, Rakai HDSS).

It is taboo to announce the death of infants and neonates in the community

Cultural taboos hinder family members from death announcements for infants and neonates in the community. Hence, the civil registration authorities and the community members are never notified about these deaths. Infants are usually buried on the same day of death by family members only. Neonates are not announced that they have died. If it is a girl, they cover her in a banana plant known as “Nakitedde” and a boy is buried under sour banana plantain called “mbidde.” Findings from an opinion leader in the HDSS community revealed that people are not informed and only women who have stopped giving birth attend such burial for neonates. This is due to the fear of transmitting bad omen to young women of reproductive ages. This hinders such deaths from being registered with the Civil Registration Authorities thus:

“We do not make death announcements for a child or a baby that dies before reaching full term. This makes death registration unlikely for such a death. A few close family members will get to know because it is considered insignificant. Only older women who have stopped giving birth are allowed to attend the burial. Women who are still giving birth are not allowed to bury”.

(LC1 Chairperson, KII, Kyotera Sub-county, Rakai HDSS).

Bride price payment determines where a woman is buried

Payment of bride price influences death registration among the Baganda and the Basoga tribes in the study area. The in-laws would halt the burial of a married woman in the husband's home if the bride price to marry her was not paid initially. The husband's family is forced to pay the bride price before burial. Else, the body is taken and buried at the home of the woman’s parents. A social norm of burying a woman to her parent's house after the bride price payment default discourages death registration. This is because parents may not want to get bothered anymore thinking about the death of their daughter. They cannot notify civil registration authorities about the death of their daughter. This is clarified by one of the respondents who cited that married women whose bride price had not been paid by the time of death were buried at their parent's home, a practice that hindered death registration:

“If a married woman dies before bride price has been paid, she has to be buried at her parents’ home. This is a very painful and shameful experience for the parents of the deceased. Many parents become remorseful and choose not to engage in activities that remind them of the death of their daughter. They don’t want to think of their children as dead, which death registration confirms”.

(Participant, FGD with women, Kyotera sub-county, Rakai HDSS).

Twins do not die but jump to the disappearance

Deaths of twins have low chances of being registered by the civil registration authorities due to cultural norms regarding such deaths as mere “jumping” or “disappearance” of a twin in the study area. A significant number of respondents stated that people could not go to the sub-county offices to make death notifications because it was not culturally acceptable for them to say that a twin had died. The implication of such is that the death of a twin does not attract interest from parents to register it with the Civil Registration Authority because they do not want to associate with the word “death of a twin” to avoid consequent impact on the living co-twin. Given that twins share a lot in common, the word “death of a twin" could have been avoided so that the surviving twin is not scared that he or she will die. When twins die, tradition requires them to be buried at night and not passed through the doors of the house but rather a hole is dug where the bodies are passed before taking them to the burial grounds. Again, this level of concealment diminishes the chances of death registration for twins. This is elaborated in the key informant interview thus:

“In this community, people do not say that a twin has died; they call it ‘kubuuka,’ which means that a twin has jumped. When someone says that a twin has died, the other twin can also die since they were produced together. Some say that he has gone to collect firewood. There is no way people can go to the sub-county chief and notify him that a twin has died. It would be opposing what we believe in”.

(VHT, KII, Kyamulibwa Sub-county, Kyamulibwa HDSS).

Suicide deaths are buried in secrecy

Suicide deaths are viewed as a curse to a family and can spread for generations as per the culture of the Baganda and Basoga tribes. Hence, such deaths are seldom registered with the civil registration authorities. Based on their culture, the residents of Bulamagi Sub-county, Iganga-Mayuge HDSS site consider life precious and believe that a person who commits suicide brings a curse to the family and has to be punished in a manner that prevents others from doing the same. Consequently, no family member is willing to register a suicide death with the Civil Registration Authorities. These views were expressed by a cultural leader saying:

“Suicide is a terrible thing in our culture. This is because someone has brought a curse in the family that can spread to all family members for generations. The deceased's body is beaten, and the rope used for strangulation is cut so that the body falls in a hole dug directly below. It is buried in whatever position it falls in, even if it is crooked. People are not supposed to arrange it because that is what the deceased wanted for him or herself. People are not supposed to mourn for such a death. Few people attend burials of people who have committed suicide. Their family members attend because they have no choice. No one can register such a death”.

(Cultural Leader, KII, Bulamagi Sub-county, Iganga-Mayuge HDSS).

Religious practices and low death registration

Religious leaders’ refusal to lead funeral prayers undermines death registration

Some religious institutions and leaders refused to lead funeral prayers for the dead, contributing to low death registration in the communities. Community members that were not involved in church or mosque activities, including paying tithe, attending prayers, often failed to have religious leaders pray for them when they died or their close relatives. These findings suggest that death registration status should not be conferred on those who deviate from the model of personhood–in this case, as articulated by the Church. The study respondents seemed to suggest that the dead whose identity is seen as being between faiths ends up between worlds in the afterlife. This makes them unworthy of death registration with Civil Registration Authority. A key informant mentioned that when priests fail to conduct funeral prayers for people who do not follow the rules put in place by Catholic Church, it increases grief and psychological torture to the family to the extent of foregoing death registration with the Civil Registration Authorities thus:

“I should say we do not conduct mass for people who act contrary to our faith. For instance, couples who die before being officially married in the church as well as converts from Catholicism to other religions like Islam and born-agains. It increases grieving and is psychologically torturing for family members when mass is not conducted. They can forego death registration because they feel that the deceased has not been decently put to rest. People will think that the deceased's spirit is still roaming on the earth and fear to refer to them as dead”.

(Religious Leader, KII, Nakigo Sub-county, Iganga-Mayuge HDSS).

Mixed religions bring conflicts that hinder death registration

Mixed religions bring about conflicts that undermine death registration. This is a result of mixed religions among community members. Study findings show that there were circumstances in the Nakigo sub-county of Iganga district where parents refused to attend the burial of their children because they had defected from Islam. As a result, both families were unwilling to register the dead with the civil registration authority, as elaborated thus:

“Family members can refuse to attend the burial of their children because of religious conflicts. For instance, a girl might be a Muslim and later becomes a Christian. The parents can even refuse to attend her burial and cannot register her death if they are the next of kin. This is because they did not approve religious conversion”.

(Participant, Female FGD, Nakigo Sub-county, Iganga-Mayuge HDSS).

Traditionalists do not seek medical treatment in health facilities but rather from shrines and witch doctors.

The study found out that the traditional religions did not seek medical treatment in hospitals and therefore resorted to traditional medicine in shrines and from witch doctors. Besides, traditionalists regularly attribute the cause of death to sorcery which hinders death registration and the medical examination of the cause of death. Even if someone dies of a motor accident, they will attribute the death to sorcery or ghosts. This consequently hinders death registration with the Civil Registration Authorities which is associated with post-mortem that is usually done in health facilities to establish the cause of death before registering the death. In light of the above, the study findings noted that a substantial proportion of the population takes sick people to traditionalists who perform rituals and later send them back home. In case of death of the sick at home, fewer efforts are put in place to register the dead with the Civil Registration authorities as elaborated thus:

“In cases where people die from the hospital, the family knows the cause of death. Some people who are not taken to hospital are taken to shrines where traditionalists tell them the root cause of the problem, perform rituals and send them back home. When they die at home, the family members are aware of the cause of death based on what the traditionalists told them. So, they just go ahead to bury the deceased. However, this decreases deaths at the hospitals where causes of death can be investigated, and the hospital staff fills out death notification forms before the discharge of the deceased as part of the death registration process”.

(Assistant Town clerk, KII, Kyamulibwa Sub-county, Kyamulibwa HDSS).

The Catholic Church registration of the dead is mistaken for Civil Registration

The study noted that the Catholic churches were fond of registering the dead and maintaining a death register for their members in the areas of jurisdiction. Findings revealed that religious registration of the dead by the Catholic church was mistaken with the official death registration by Civil Registration Authorities. As a result, some community members had not registered their dead with Civil Registration authorities because the catholic church took records of their dead to pray for them and administrative purposes. These records are never relayed to the Government’s Civil Registration Authorities which is perhaps a missed opportunity in death registration initiatives for Uganda. The catholic church uses catechists who record particulars of the dead and then feed it into the death registration book for the church. This scenario is elaborated below:

“The catholic church has religious heads in every parish locally known as the ‘Eitwale’ who register the death of every catholic that regularly attends mass. They have forms that record the death details, including the cause of death. A person who registers the death of their family member with the Eitwale cannot register with the sub-county chief because it is like double registration and wastage of time”.

(FGD Participant for women, Bulamagi Sub-county, Iganga-Mayuge HDSS).

The study findings reveal low levels of death registrations in the Iganga-Mayuge, Kyamulibwa, and Rakai HDSS sites. It also shows that social norms hinder death registration initiatives by the government of Uganda. Some of these norms include informal will-making and inheritance sharing and taboos to announce the death of twins, infants, neonates, and even suicides. It was also found out that religious institutions have their own set of rules, practices, and norms that discourage death registration, for example, praying for the dead only when they have been actively engaged in religious activities, mixed religions breading conflicts as well as traditional believers seeking treatment from witchdoctors and not health care workers at the health facilities.

The study findings are consistent with a study in Nigeria in which low death registration was reported among new-borns in the south-south region of Nigeria [22]. The deceased's parents did not register new-born deaths because the babies had lived for only a short time. The deaths for the young are not registered with civil registration authorities by the relatives because it reminds them of the “deceased’s short unfulfilled life” [23]. In addition, superstitious beliefs among the Yoruba and Igbo in Southern Nigeria term some children as “Abiku or Ogbanje”. These children are said to belong to a group of spirits with an unfulfilled purpose on earth. When these children finally die, their communities are expected never to discuss or recognize that they died [23]. Given the kind of discrimination against the children termed as “Abiku” and “Ogbanje” by their communities and families, the chances of reporting their deaths to Civil Registration Authorities are usually slim.

Similar to the study findings, a study conducted in South Africa observed that 6% of all respondents to verbal autopsy interviews attributed death to witchcraft [24]. The death of women of reproductive age and children was linked to witchcraft. Even relatives of people who died without seeking hospital-based health care attributed witchcraft as the cause of death. Similarly, a study in Guinea Bissau noted low levels of death registration in the communities (2%) in which witchcraft was mentioned as a key determinant [11].

Similar to the study findings, a study in Egypt revealed that death registration was lower among women whose parents did not receive bride price than their counterparts with parents that received bride price [25]. This agrees with the current study findings in which failure to pay bride price by the bridegroom denied his family an opportunity to bury his wife. The bride groom’s family was discouraged in this respect to registering the death with the civil registration authority.

Although formal and legal wills are recognized in land rights and processing of land titles and therefore increasing the chances of death registration [26], the current study noted that cultural norms seem to recognize customary wills as adequate in handling inheritance and property rights. The recognition of customary wills in property rights as well as in installing the heir with full family headship rights poses a significant challenge to death registration. The fact that clan or community members believe in the will read and implemented during the last funeral rights “Kwabya olumbe” does not motivate the family members to register the death and obtain a death certificate since the customary will called “Ekilamo” is sufficient.

Although the findings place social norms and behavioural practices as contributing factors to low death registration, some studies suggest a contributory role of CRVS supply and demand-side challenges. On the supply side, death notification is currently done at sub-counties and health facilities which is costly in terms of time and funds to travel from a village to the sub-county headquarters since they are far apart by a big distance [19]. In Nigeria, the proximity to a civil registration office increased the likelihood of death registration by the next of kin [ 23]. The Registration of Person’s Act 2015 in Uganda is not fully enforced. For example, although death registration is compulsory, no effort to establish the status of registration by local authorities before burials take place in communities. Death registration is mostly paper-based and sometimes registration materials are not distributed to registration centres on time. In addition, the levying of fees on death notification forms by sub-county local governments and health facilities discourage death registration. Lastly, the COVID-19 pandemic travel restrictions and the total lockdown instituted by the president of Uganda between March 18^th to June 4^th 2021 could have limited death registration.

On the demand side, the National CRVS Strategy for Uganda 2020/21-2024/25 indicates inadequate awareness about death registration including benefits, processes and requirements [19]. Although death registration serves legal, administrative and statistical purposes [3], most community members are not aware or cannot easily identify with its existing incentives. For example, although death registration provides documentary evidence of identity for claiming benefits of the property, insurance and remarriage among others, a section of the public do not need death registration to inherit property. The majority of the dead are employed in informal businesses and subsistence agriculture where insurance packages are not available. In addition, polygamy is practised and recognized under customary marriage and hence cases of death registration of a spouse as an incentive for remarriage are minimal.

The previous studies were done in the HDSS sites of Uganda showcase mortality underreporting [27, 28]. For instance, the Iganga-Mayuge HDSS study revealed cases of mortality underreporting[28]. The study response rate over years was affected by vacant households (10.4%), demolished households (5.8%), changes in the status of residence (5.5%), absence from home (0.2%) as well as refusals of 0.04%. The underreporting of deaths is very prevalent in low-income countries especially Sub-Saharan Africa where about 1% of deaths are registered [23]. In addition to the above, Nahuche HDSS in Zamfara State of North-West Nigeria with similar settings as those of the 3 HDSS sites in Uganda where the study was conducted show high mortality underreporting especially among the 0-4 year age group [29]. This was due to cultural taboos in death reporting, especially among neonates and infants.

This paper aims at showing how social norms and behavioural practices contribute to low death registration in the Iganga-Mayuge, Kyamulibwa, and Rakai HDSS sites of Uganda. These social norms are observed in the community as part of the cultural heritage. However, following these norms hinders death registration initiatives. Some of these norms include customary will-making and inheritance sharing and taboos to announce the death of twins, infants, neonates, and even suicides. In addition, it can be concluded that many religious institutions have their own set of rules, practices, and norms that discourage death registration, for example, praying for the dead only when they have been actively engaged in religious activities. However, there is a possibility of potential variations in the perceptions or experiences of men and women around death registration within the study communities.

It can be concluded that social norms and behavioural practices play a significant contribution to the low death registration rates in the 3 HDSS sites of Uganda. The Ugandan civil registration authorities need to recognize the heterogeneity of cultural norms, religious beliefs and practices around death and how these influence the propensity for different deaths to be registered. This, therefore, implies that future civil registration strengthening efforts should confront the challenges raised by social norms or behavioural practices in Uganda and incorporate the cooperation of community, religious and cultural leaders with civil registration and health officials. For instance, the National Identification and Registration Authority (NIRA) should collaborate with the cultural and religious leaders to sensitize community members on the benefits of death registration and guide them on how it is undertaken to increase death registration. This sensitization can take place during cultural events, traditional and religious marriage ceremonies, among others. The study findings may however suffer from sample limitation of participants given that the 6 FGDs and 26 KIIs may not necessarily represent the views of all persons in Eastern and Central regions where the study was conducted. In addition, the governance structures that require the notifier of death to go to the sub-county and report a death, there is a possibility that some other factors such as transport costs could have contributed to low death registrations on top of the social norms and behavioural practices explained in this study. Nonetheless, the current study presents additional knowledge that can be expounded through future research on the contribution of social norms and behavioural practices on death registration in Uganda and possibly other developing countries.

COVID-19: Corona Virus Disease

CRIMS: Civil Registration Information Management System

CRVS: Civil Registration and Vital Statistics

DHS: Demographic and Health Survey

DRO: District Registration Officer

FGDs: Focus Group Discussions

HDSS: Health and Demographic Surveillance System

HIV: Human Immunodeficiency Virus

IDRC: International Development Research Centre

IMHDSS: Iganga-Mayuge Health and Demographic Surveillance System

IRB: Internal Review Board

IUSSP: International Union for the Scientific Study of Population

KII: Key Informant Interview

LC1: Local Council one

LG: Local Government

MUSPH: Makerere University School of Public Health

MVRS: Mobile Vital Records System

NIRA: National Identification and Registration Authority

ROPA: Registration of Persons Act

SDGs: Sustainable Development Goals

UNCST: Uganda National Council of Science and Technology

UNICEF: United Nations Children’s Fund

VHTs: Village Health Teams

Ethics approval and consent to participate

Consent for publication

Not applicable

Availability of data and materials

All data generated or analysed during this study are included in this published article.

Competing Interests

The author declares no competing interests.

Funding

This fellowship grant (Grant Number: 109002-001) was provided by the International Union for the Scientific Study of Population (IUSSP) with financial support from the Centre of Excellence for Civil Registration and Vital Statistics Systems housed at the International Development Research Centre (IDRC) in Ottawa, Canada. The Centre of Excellence is jointly funded by Global Affairs Canada and IDRC.

Authors contributions

GH conceived the study, designed the tools, analysed and wrote the manuscript. GH also read and approved the final manuscript.

Acknowledgements

I would like to thank the IUSSP Scientific Panel on Population Perspectives and Demographic Methods to Strengthen Civil Registration and Vital Statistics Systems for the constructive comments to the manuscript and during the IUSSP CRVS Fellows Online Meeting, April 24^th -26^th, 2020, and 23^rd October 2020. I also thank the IUSSP Secretariat for the research fellowship grant that has enabled me to undertake this study.

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No competing interests reported.

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The Contribution of Social Norms and Behavioural Practices towards Low Death Registration in 3 HDSS Sites of Uganda

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Abstract

Background

Death Registration in Uganda

Methods

Study design and Area

Study Population and Sampling

Sampling and Data Collection methods

Variables

Ethical Considerations

Data analysis and reporting

Results

Status of Death Registration in HDSS sites of Uganda

Social norms and their contribution towards low death registration

Religious practices and low death registration

Discussion

Conclusion

Abbreviations

Declarations

References

Additional Declarations

Status:

Version 1