Study design

An in-depth discussion and interview were carried out on purposively selected participants. The study was conducted by using an exploratory phenomenological study design, which emphasis and focused on understanding and realizing the participant’s response word/s, phrases, ideas/concepts, beliefs and perceptions on CMs. A textual analysis method and interpretation were done after developing coded transcripts, themes and categories to explore the participant’s perceived knowledge and beliefs on CMs.

Study sites

The study was conducted at Felege-Hiwot hospital, University of Gondar teaching hospital, Desse Hospital and Debark hospital. All of the hospitals are comprehensive specialized hospitals, except Debark hospital, which is a general hospital. All the hospitals provide a large number of various inpatient and outpatient services including delivery. The hospitals provide services by using its diagnosing devices, for example x-ray, CT scan, ultrasound and Magnetic Resonance Imaging. However, Debark hospital has ultrasound and x-ray devices only. Medical examination in the hospitals is carried out by radiologists, pediatricians, senior and other experienced medical doctors.

All of the hospitals are located in the Amhara regional state, Ethiopia. The region is subdivided into 12 administrative zones and three administrative cities. Besides, the region has 183 districts. In the region, there are 81 hospitals (5 comprehensive specialized, 3 general, 73 primary), 858 health centers and 3,560 health posts [16].

With an estimated total population of 20,399,004 (50.1% male, 49.9% female) [17], the Amhara National Regional State is the second largest region in Ethiopia. The capital city of the region is Bahir Dar, which is located in Northwest Ethiopia and 565 kilometers away from Addis Ababa, the capital city of Ethiopia. The Amhara region is the source of Lake Tana and Abay (Blue Nile) river. In the region, there are world heritage sites and tourist attraction places, such as Semien Mountains (including Ras Dejen Mountain), Lalibela and Fasil’s Palace (Fasil Ghebi). The majority of the people live in rural areas and the minority in large and small towns [17]. Most of the Amhara people are Christians with a good number of Muslims. Again, most of the rural inhabitants of the people are agriculturalist. Furthermore, nearly 61.8% of females and 76.8% of males were engaged in agricultural activities in 2016 [18]. The level of literacy rate for women and men were 44.9% and 65.7%, respectively [18]. Besides, 86.2% of females and 84.3% of males had no health insurance. As far as the wealth quintiles, 16.4%, 21.0%, 22.7%, 22.9%, and 17.0% of the people were lowest, second, middle, four and highest, respectively [18]. The total fertility rate was 3.7% in 2016 [18]. According to Central Statistics Agency of Ethiopia [18], 32.4% of mothers had no ANC follow up. However, about 67.1% of mothers received ANC from a skilled health care provider [18]. Astonishingly, home and health facility delivery rate were 71.1% and 27.1%, respectively [18]. Similarly, 4.4% of mothers weren’t assisted by any birth attendants during delivery, whereas 27.7% of mothers were assisted during delivery by skilled health care provider/birth attendant [18]. The total percentage of children whose births registered in 2016 by the health facilities were 1.3% [18].

Study participants

The participants were parents/caretakers who were attending to their children under medical treatment and care at the study hospitals. Participants were purposively selected from four hospitals in the Amhara regional state, Ethiopia. Three-fourths of the participants were women aged 17–60 years, and one-fourth were adult men aged 24–65 years. In addition, three-fourths of the participants had children with CMs and one-fourth had no such children. The focus group discussion participants were government employees, private/self-employees, house wives, farmers, and un-employed people. The in-depth interviews also included two government employees, two house wives, two farmers, one self-employed, and one jobless participant.

Selection of study hospitals

A total of four public hospitals were purposively selected and included in the study. The selected hospitals were Felege-Hiwot hospital, University of Gondar teaching hospital, Desse Hospital and Debark hospital. All the hospitals are tertiary leveled hospitals, except Debark hospital, which is a general hospital. The hospitals were selected on the basis of case load (CMs). All of the hospitals had various specialized units or departments, which provide medical services to adults, neonates and children. All the hospitals provide inpatient and outpatient services to patients (adult and children), pregnant mothers (antenatal care followers, including delivery care services) and family planning clients. In the study hospitals there are Obstetricians/Gynecologists, Pediatricians, Internists, Surgeons, Nurses, Midwives and other health professionals and para medical workers who are working permanently.

Recruitment of participants

The study included forty participants who had children with and without CMs. A purposive sampling strategy was used to recruit participants from four public hospitals in the Amhara regional state, Ethiopia. The participants were approached in the children’s outpatient clinics, neonate units and pediatric wards. The purpose of the study was explained in detail to children’s parents and then invited to participate in the study. Then, volunteer participants were selected, and involved in the study. The selection of the participants was by considering the ability of participants to explain and provide substantive information or feelings about CMs. In addition, participants who agreed to participate and signed written informed consent were included in the study. All the participants were Amhara in ethnicity and fluently speak and listen Amharic language. In contrast, parents who weren’t voluntary and refused to sign written consent excluded in the study. Before the discussion began four focus groups and in-depth interviewees (8 individuals) were formed. Each focus group consisted of eight persons. The focus groups were formed based on the similarity of their background.

Data collection method

The data collection procedure was in-depth semi-structured focus group discussions and interviews. The data was collected at public hospitals, while parents/caretakers were attending to their children’s medical care and treatment. Rooms were arranged at the hospitals by permission of hospital managers/directors to maintain privacy. Participants were identified and invited to participate in the study before FGDs and IDIs were carried out. The aim of the study was explained. After they agreed and gave written consents to participate, appointments were arranged. The FGDs and IDIs were conducted by using semi-structured topics (guiding) questions. The FGDs and IDIs began by asking participants some rapport creating questions. Once the study participants created a good rapport then the data collectors began to ask questions about the meaning or how they understood the expression CMs or birth defects, the causes, as well as perceived knowledge, lived experience and beliefs on the problem. Additional data were collected on the effects of substance abuse or behavioral factors, exposure to radiation, chemical substances, fertilizers, pesticides, heredity, folic acid, multivitamins, malnutrition/deficiency of micronutrients, and infections/diseases on embryos and fetuses. Data were also collected on sins/supernatural perceptions. The guiding topics prepared in English were translated to Amharic. The average time taken for IDIs were two hour and similarly the average time taken for FGDs were three and half hours. The FGDs were chaired by trained public health officers, assistant professors, midwives and nurses, and the face-to-face IDIs were conducted by the principal investigator. The FGDs and IDIs which were carried out until level of saturations were reached, which means no more ideas and concepts were added and taken in the form of written notes (by nurses and midwives) and audio recorded as participants talked about the points of discussion. The FGDs and IDIs were conducted from June-July, 2015.

To maintain the reliability and validity of the data collection, volunteer participants were selected by using a guideline, which help to decide the appropriate/suitable participants for this study. In addition, semi structured guiding questions were prepared. The topic of discussion was explained to participants to create a comfortable environment and enrich the data collection. The data were collected until it reaches saturation point. During the discussion the participants were treated with respect and assured by the investigator and facilitator of the discussions. Again, the participants were allowed and encouraged to explain their ideas, feelings/beliefs, perceptions and thoughts freely. Likewise, enough time was given for the interviews and focus group discussions. Besides, adequate sample size was determined for the interviews and focus group discussions. The texts were sorted, organized, coded and categorized to understand the information/meaning of the texts talked about or said by the participants. The texts were read more than two times to know the meaning/information of the texts. Then the principal investigator looked at the data again to understand what was said in the texts. Moreover, the transcripts were scrutinized to determine the refined themes and categories. An in-depth analysis and interpretation were carried out to describe the findings. Hence, the findings of this study are credible, conformable and can be generalized.

Data management and analysis

The analysis was carried out after FGDs and IDIs were completed. The primary investigator developed a transcript based on the recorded audio and verbatim that captured all information obtained from participants. In the first place, the transcript was read repeatedly to understand the participant’s words, ideas, and concepts which were sorted and coded again according to the types of response. Deductive thematic framework analysis was used to analyze participant responses. Audio recorded information were transcribed verbatim. Then notes were prepared to combine pieces of similar words, ideas, and concepts together in order to make themes or categories. The themes that emerged from participants’ response on perceived knowledge, beliefs, lived experience and risk factors of CMs were recognized and organized into categories. The emergent themes and categories were identified by reading the transcripts many times and then coded. The coded transcripts were carefully scrutinized and refined at the time of analysis. The analysis was done by the primary investigator. Explanations and write ups were done on the refined transcripts.

Ethical approval

Ethical clearance was obtained from the Institutional Review Board of Amhara regional Health Bureau Ethics Review Committee. Support letters were written to zonal health departments and study hospitals by health bureau. The purpose of the study was explained, and ethical clearance and support letters were shown to the participants. The study was carried out after permissions were obtained from hospital managers/medical directors, and written consents were obtained from the participants. Data collected from the participants were kept in safe and locked cabinets to maintain confidentiality.

Perceived knowledge on CMs

Both the FGDs and IDIs members had different understandings, ideas, and concepts on CMs and their causes. When the participants were asked about the expression “congenital malformations” or what they meant by them, the response (in FGDs) of a 46 years man (government employed), a 24 years man (Jobless), a 56 years man (farmer), a 40 years woman (self-employed) and in the IDIs a 33 years woman (house wife) were “A child born without a leg(s) or hand or arm”, whereas two men (44 and 51 years, both government employed) explained it as “Any visible abnormality on any body part/s, like spina bifida, cleft lip and palate, absence of phalanges or leg/arm”. On the contrary, 24 of the 40 participants (11 children’s parents had children with CMs and 6 children’s parents who had children without CMs) from each FGDs and 7 (5 women who had children with CMs and 2 men who had children without CMs) from the IDIs said, “I have no information on CMs…I don’t know the meaning of CMs”. However, eight participants who had children without CMs said, “To be honest, I have no idea…, but I guess it is a problem on body part/s….”

Participants’ beliefs, lived experiences, and perceived knowledge on children with CM, which are likely to influence parents’ emotions at their child care duties are stated below:

A 38year old woman who had a child with spina bifida with hydrocephaly and bilateral clubfoot explained, “I was very frightened,…I was shocked, I thought I did something wrong, and my heart broke down when I saw my child…Then, I cried for several days…I was always confronting challenges in my life…and still I am in grief and thinking about the fate of my child”.

The response of another 33year old woman whose child had cleft lip and palate was, “I was sad and disappointed for many days…I didn’t know what to do…and I was hiding my child from people…but after I heard that the defect could be repaired by doctors, I hoped that my child could be treated and live as any normal child”.

A 40year old man who had a child with bladder exstrophy, cleft lip and palate said, “I was very sorry…stressful…I felt unfortunate, and hopeless…I kept thinking that my child couldn’t live, I did not expect that could happened to my child…” and he stopped talking. Again, another 35year old woman who delivered a child with frontal encephalocele at home, narrated, “I was worried…I was asking myself what it was and took my child to a nearby health center…Then the health professionals referred it to a nearby hospital, and they referred it to Zewditu Hospital, Addis Ababa. At that time, I felt that my child had no hope and couldn’t be helped”.

Many parents whose children had CM explained that the effects of their children’s problems put them in horrible and challenging condition in the following ways.

A 34year old woman whose child had gastroschisis said, “I was always thinking that my child was going to die…my thoughts were about my child dying…and I was desperate…I was in shock…I have had no hope since then…”. Similarly, another 55 year old man whose child had cleft lip and palate went on: “I was afraid…I didn’t think my child was going to live, I was traumatized, but now I hope my child’s problem can be repaired by health care providers; hence, my child will survive and grow, because I was considering that the child would die due to feeding problems… and that it would be isolated when it grows up due to discrimination”.

A 27year old woman who had a child with open spinal bifida stated, “I felt anxiety, panic, and cried…I was always sad and felt that my child had no hope and would die”, and asked, “Why doesn’t the government find a solution for such kinds of congenital malformations?”.

Most parents (mothers and fathers) of children with CMs said, “The problem is very distressing, causing grief, shame…We felt as if we were cursed and apathetic”. In addition, parents stated: “We not only suffer from psychological conditions but also face economic crises…We spent a lot on care and treatment of the child…We leave home and worry about the other children we leave at home”.

Beliefs on causes of congenital anomalies

With regard to the causes of CMs, participants’ general beliefs were varied. When all of the participants were asked what the causes of CMs were, eighteen (16 women who had children with CMs and 2 men who had children with CM) of the participants said, “I have no knowledge of the causes of CMs …, I don’t know exactly the causes of CMs”, while twenty (17 women who had children with CMs and 3 men (two men had children with CMs and one man who had a child without CM)) out of all FGDs and IDIs believed that sins/spiritual consequences, use of contraceptive pills and/or un-prescribed drugs, and eating fertilized crops caused CMs. Only two individuals (a 33years old who had child with CM and 45year old woman who had child with CM believed and related the causes of CMs to heredity and behavioral factors, such as alcohol consumption and smoking cigarettes.

Further discussion points/questions were raised to assess participants’ beliefs and knowledge on the causes of CMs. The majority (34/40) of the participants (twenty-two women who had children with CMs in the FGDs and IDIs and all men who had children with and without CMs in the FGDs and IDIs) explained, “Alcohol drinking during the first three months of pregnancy would not have any effect on the embryo/fetus”, while two women (a house wife and a farmer) who had children with CMs said, “I don’t know the consequences of alcohol”, and six participants (three government employees men and two self-employees men, and one 32 year old government woman) who had children with and without CMs stated, “Alcohol consumption would cause addiction, liver disease, and mental retardation”. In addition, twelve women (11 had children with CMs and one child without CM) and eight men (6 had children with CM and 2 children without CM) said, “I knew that abusing alcohol by women and men led to addiction and liver disease but I didn’t hear from health professionals and the government about the effects of alcohol on unborn babies, as a result I did not consider alcohol drinking during pregnancy had consequences on embryos and fetuses”. On the other hand, a 55year old man who had a child without CM in the IDIs said, “CM could occur when a drunken and intoxicated husband shouted at his pregnant wife making her extremely worried”. This participant also believed and said, “Sunlight deficiency could cause congenital malformation”. Another 35 years old man who had a child with CM in the FGDs explained, “If a pregnant woman doesn’t make antenatal care visits, is not vaccinated for poliomyelitis, tetanus, and measles her baby would be born with CM”. Very few (a 34 year old man who had child without CM and a 31 year old woman who had child with CM) participants said, “If a pregnant woman desired to eat or drink something particular but failed to get what she wanted, the baby would be born with a CM”.

More than half (29 of the 40 women and men, who had children with and without CMs) of the participants pointed out, “Evil spirits or ghosts or fear that anguish a pregnant woman would lead her to having a baby with a CM”. Moreover, few (4 women who had children with CMs and one man aged 60 years who had no child with CM and another aged 30 years who had a child with CM) participants said, “Babies with CMs might be born to persons who committed crimes, and did not respect religious codes”.

A 40 year old man who had child with CM thought, “Use of un-prescribed drugs could result in deafness, blindness, and inactiveness”, whereas seven men (4 had children with CMs and 3 had children without CMs) and six women who had children with CMs stated, “Un-prescribed drug use by pregnant women could cause miscarriage as well as mental retardation and disorder/CM in babies”. In contrast, some participants (farmers, house wives, jobless and self-employee) who had children with CMs said, “I didn’t know …., didn’t hear about specific effects of drug use during pregnancy on embryos/unborn babies”. On the other hand, twenty-four participants (sixteen women and eight men who had children with and without CMs) among all FGDs and IDIs said, “Drugs poorly handled were being sold without prescriptions by every drug vender/store;…this, people were using drugs unnecessarily, and that could affect the health of people, especially pregnant women and their unborn babies. Therefore, concerned principal authorities must control drug venders and stores which sell drugs without prescription/s”.

Seventeen participants (3 government employees, 2 self-employees, 4 house wives, 5 farmers, and 3 jobless) who had children with CMs explained, “Cigarette smoking would lead to lung disease in babies after birth”. However, more than half (21 women who had children with CMs and 2 men (one had child with CM and the other had child without CM)) of the participants said, “I had no information…I didn’t know the effects of cigarette smoking on the embryo/fetus”. In addition, this participants by occupation were 7 farmers, 6 house wives, 5 jobless, 3 self-employees, 2 government employees.

Fourteen participants (ten women who had children with CMs and four men (3 had children with CMs and one had child without CM) in each occupation groups believed and said, “Radiation, chemicals, and pesticide exposures would harm the fetus, resulting in unhealthy babies”, whereas six participants who had children with CMs stated, “I didn’t know their effects on embryos/unborn babies”. In contrast, half (20/40) of the participants with and without CMs (both women and men) in all FGDs and two (one woman aged 60 years who had no child with CM and one man aged 65 years who had child with CM) in IDIs explained, “Radiation is good during pregnancy and has no effect on the embryo and fetus, rather it helps to identify the disease of the mother and the situation of the fetus in the womb; it won’t affect the fetus”.

Each of a few (4/40) participants who had children with CMs (27 years (female), 34 years (male), and 45 years old (female) in FGDs and one woman (46 years) who had child with CM in the IDIs) said, “I have no information/knowledge…so I don’t know the specific effects of nutrition/micronutrient deficiency/folic acid/iron folate deficiency on the embryo, whereas the majority (30/40) of the participants who had children with CMs reported, “It would have a direct effect on the health of the baby and the mother, except that the baby would be thin and underweight”, while few (two women participants, that is one house wife and one farmer who had children with CMs) stated, “Mothers would be thin and die due to starvation”. However, two women (government employees and who had no children with CMs) participants pointed out, “If a pregnant woman doesn’t take folic acid/iron folate CM might occur to her unborn baby”. On the contrary, the majority (in each occupation) of the participants didn’t consider folic acid/micronutrient deficiency or malnutrition as causes of CMs.

Diseases/infections, especially sexually transmitted diseases, like syphilis, and vaccine preventable diseases, such as tetanus, and measles were cited as the causes of CMs by two participants (two women government workers, whose age were 27 and 45 years). However, three (a house wife and two farmer who had children with and without CMs) participants (one woman aged 28 years and one man aged 42 and a 60 years male (who had no children with CMs)) said, “Diseases/infections would not cause CMs”.