Lived Experiences Of Pregnancy Among Women With Sickle Cell Disease Receiving Care At Mulago Hospital: A Qualitative Study

Background Women with sickle cell disease in Mulago National Referral Hospital face challenges when they become pregnant and they receive the same care as all other high risk pregnant women who come to the hospital. This study explored the lived experiences of pregnancy among women with sickle cell disease receiving care at Mulago National Referral Hospital. Methods This was a qualitative phenomenological study conducted on 15 participants who were women with sickle cell disease with the experience of pregnancy. In-depth audio recorded interviews were conducted to collect data from women who were pregnant at time of study or had ever been pregnant aged 16 to 38 years of age with sickle cell disease. Recorded data was transcribed and analyzed using content thematic approach. Results This study revealed that pregnant women with sickle cell disease faced both negative and positive health care experiences and individual lived experiences of pregnancy. The few positive individual lived experiences were joy of motherhood and giving birth to child free of sickle cell disease whereas the negative individual lived experiences reported were recurrent painful crises, pregnancy loss, premature delivery, stigma and discouragement, relationship discord and desertion by spouse. There were few positive healthcare experiences reported in this study which included: dedicated care and support from health workers, referral to specialist services, support from their male partners and the negative healthcare experiences reported were delay to get medical assistance, informal hospital charges, unsatisfactory care, and advocacy for caesarian section Vs normal delivery. Conclusion Pregnant women with sickle cell disease lived with great expectation and in fear of being further weakened by the disease. Their experiences were in general negative at both individual, social and health system levels.


Background
Sickle cell disease (SCD) is defined as an autosomal recessive hemoglobinopathy that includes SCD (HbSS) and various compound heterozygous genotypes (e.g. sickle cell carrier (HbSC) or sickle cell b-thalassemia disease (HbSb-thal) characterized by chronic hemolytic anemia and vaso-occlusive complications [1]. Sickle cell disease is the commonest hereditary disorder and affects 30 million people worldwide [2] and about 80% of SCD cases are believed to be in Sub-sahara Africa [3] with 300,000 children born with the condition each year [4] and in Uganda alone 20,000 babies per year are born with SCD [5]. Therefore, it's against this background that we explored the lived experiences of pregnancy among patients with SCD in MNRH.
Pregnancy is a potentially serious condition among women living with SCD and can leave them even more fragile and insecure [6]. The fear of death and the death of their child is justified by the history of women who experience these complications. The women become aware of this fear from the reports of other women affected by the disease or from those who have had similar experiences in the family [7,8].
Health care services and health care professionals are poorly prepared to care for these women, especially during pregnancy, which can contribute to increase the insecurity and fear they experience in this life stage. Access to quality prenatal care is often hampered for women suffering from SCD, either by physical and economic limitations to access services, or by the discrimination suffered because of their race, gender and low social class, in which these women find themselves. The difficulty of access to hospitals is one of the main factors responsible for maternal deaths [6].
However, while many previous studies have explored how SCD affects pregnancy outcomes [9], few studies have explored what women with SCD go through during pregnancy. This presents a missed opportunity for understanding the experiences that these women go through during pregnancy and impedes our ability to assist them to enjoy the same health care services that other women without SCD enjoy. With this study we bridged this gap by exploring the lived experiences of pregnancy among women with SCD receiving care from MNRH.

Study design
This was a qualitative phenomenological study that explored the lived experiences of pregnant women with SCD receiving care in MNRH in Kampala, Uganda. Data collection took place between October to December 2018. The choice of the qualitative approach was based on the fact that this approach provides the opportunity to document lived experiences of pregnancy among women with sickle cell disease through more in-depth and detailed narratives.

Study setting
The study was conducted in MNRH in Kampala, Uganda's Capital City. The selection of the study site was based on the fact that this is the national referral hospital for the country and handles all the high risk pregnant mothers and therefore would be able to get a big number of women with sickle cell disease that were pregnant at the time of study or had ever been pregnant. At the time of study, MNRH was under restructuring and the department of obstetrics and gynecology was in Kawempe Hospital and hematology clinic was in Kiruddu Hospital.

RECRUITMENT OF PARTICIPANTS
Mulago National Referral Hospital records offices were searched to get patient files from out-patients unit, ward records books and antenatal books so as to identify women with SCD managed before and those who were receiving care from the hospital at that time.
From the findings a total of 113 women with SCD in the reproductive age had received care from both Kawempe and Kiruddu Hospitals. 113 phone contacts were extracted from the hospital records and phone calls made to the participants inviting them to the clinics.
From Kawempe Hospital, department of Obstetrics and gynecology 46 possible participants' phone numbers were extracted. On first analysis 11 phone numbers had errors like missing figures and therefore these were eliminated. The PI (PI) started making phone calls for the remaining 35 phone numbers and phone calls were made at least three times at different times of the day if the number was not available the first time. The PI determined that 8 phone numbers were not available and 10 phone numbers belong to relatives who were no longer staying with the woman with SCD and so these were also excluded. Thus the PI remained with 17 phone numbers of the women with SCD that were available, when the number went through, the PI would introduce himself, thank the woman for taking the call, request if they were able to talk to him and if they agreed the PI would tell them his intention of calling. Then inquire if they had been pregnant before or were currently pregnant at that time. Out of 17 women with SCD 7 of them had not been pregnant and had received care for general gynecological complications from MNRH whereas 10 of the women had received care for obstetrical or pregnancy related complications.
Only 7 of these women with history of pregnancy accepted to be part of the study while 3 of them declined to participate in the study. Four women had interviews in the hospital and 3 at home. Antenatal and postnatal women with SCD admitted on the ward or attending antenatal care during the period of the study were recruited after they had stabilized or given appointments to return after discharge.
From Kiruddu Hospital, the hematology clinic record files were searched to look for women with SCD who were in the reproductive age and a total of 67 phone contacts of women with SCD were extracted and initial analysis by the PI revealed that 16 of the phone contacts had an errors like incomplete figures and 51 phone contacts were complete to the standard numbers and phone calls were made by the PI to book for appointments if the number went through. If the phone number wasn't available the first time, it was tried at least three times at different times of the day and 20 phone numbers were off and 12 were for relatives who reported that they were no longer staying with the woman with SCD, or the patient had passed on. Of the 19 women with SCD traced from Kiruddu hospital, 8 women consented to participate and so appointments were fixed by the PI with options of interviews done from hospital (5women), home (1 woman) or at their place of work (2women), 10 women with SCD had not been pregnant before, 1 woman with SCD had been pregnant before but declined to participate. However the phone numbers that were off were tried on again after two weeks to see if the participant's phone was now available.
For interviews that were conducted in the hospital setting, we secured a consultation room in both Kawempe and Kiruddu Hospitals and requested the in-charges to give us the room for the interview without any other activity going on in that room. We always put a notice on the door and locked the doors to avoid interference from outside.
For interviews conducted at home, we agreed with the mothers to fix a date when she had enough help at home from someone who take away the baby for a few minutes and we sat in the house to avoid interference. For interviews at work place we scheduled interviews at hours that were not busy, one was a hotel manager while the second participant had a boutique shop in town and both recommended interviews are done early morning hours.

DATA COLLECTION
A qualitative approach of semi-structured in-depth interviews was used to explore the lived experiences of pregnancy among women with SCD. The interview guide was in English and translated to Luganda to make it easy for participants to understand. Thus an appropriate language was used for each participant. Eight participants were called and accepted to come to the hospital and we requested those who couldn't come to the clinic to give us appointments and four participants preferred interviews done at their homes, two participants gave us appointments at their work places while only one participant was admitted in the hospital after delivery and she was interviewed on the day of discharge.
This approach emphasis was to focus on capturing the participants' perspective, enlisting the participant as the expert knower, describing the participant's lived experience from their own perspective and searching for the meanings individuals give to their particular lived experiences. The responses of each participant were audio recorded using a recorder so that no information was lost.

DATA ANALYSIS
This study used a descriptive phenomenology approach which favors thick description and close analysis of the lived experiences to understand how meaning is created through embodied perception[10]. Data analysis followed the six steps of data analysis advanced by Colaizzi[11].
Each interview was transcribed verbatim by a research assistant with experience in qualitative research to maintain contextual information. The individual identifiers were masked and transcripts were coded as P1-P15 to maintain anonymity. Each transcript was reviewed by the principal investigator alongside the audio-file for accuracy. The principal investigator then read through each transcript in order to become familiar with the collected data.
A code book was generated to give description of codes, significant and research relevant phrases were extracted from the transcripts by coding. This involved generating an initial list of concepts and themes by reading the data and creating as many relevant codes as possible and grouping the data accordingly.
The codes/ themes were sorted according to each participant using a coding framework and matrix to explore whether they have an indication of similar or disparate experiences.
Each of the above steps was repeated for each transcript and organized to illustrate an aggregated meaning. The main themes that emerged from the above steps of analysis of the interviews were described and used to give an exhaustive description of the investigated phenomenon to understand the lived experience of women with SCD regarding pregnancy.

Permission to do the research was sought from School of Medicine Research Ethics
Committee (SOMREC), Uganda National Council for Science and Technology, Department of

Obstetrics and Gynecology and Hematology department of Mulago National Referral
Hospital.
The study was individually explained to each participant and they were also encouraged to ask questions and seek clarification on anything related to the study. Informed consent was obtained from all study participants. Each study participant gave an informed consent and this obtained from the study participants before data was collection. Study participants under 18years were considered as emancipated minors gave their own consent for participation in the study.
Confidentiality was maintained for all participants by ensuring that all the members of the research team understood what confidentiality meant and ensured that all the participants' information was only accessed by the study staff and the consent forms and transcripts were kept under lock and key. To further maintain confidentiality, the study participants' names were not used but rather study numbers were assigned to keep their identity anonymous.

PARTICIPANT CHARACTERISTICS
A total of 15 women with sickle cell disease participated in the study, of whom 12 had a history of pregnancy and 3 were pregnant at the time of the study. Seven of the study participants were from Kawempe hospital and 8 were from Kiruddu hospital. The age range of participants was 16-38, most of the women with sickle cell disease in this study were single and majority had attained secondary education. Majority of the participants had prior pregnancy experience and only a few were currently pregnant at the time of the study (see table 1).

FROM MNRH
The study explored lived experiences of pregnancy among women with SCD receiving care from MNRH and the findings are summarized under two major themes 1) Individual lived experiences and 2) health care service experiences as shown in table 2.

INDIVIDUAL LIVED EXPERIENCES
Women with SCD in this study expressed both positive and negative individual lived experiences of pregnancy. A few of the study participants had positive lived experiences like Joy of motherhood and giving birth to a baby without sickle cell disease like the mother. Most of the women had negative lived experiences such as recurrent painful crises, pregnancy loss, premature delivery, stigma and discouragement, relationship discord and desertion by spouse.

Joy of motherhood
Only a few of the participants reported great desire to have a baby regardless of the advice to abort and were willing to risk their lives to become a mother as this would make them happy as in the excerpt below; Giving birth to a baby without sickle cell disease like the mother One Mother who had given birth to a child without sickle cell disease expressed happiness knowing that her child will not be affected by SCD as narrated below; "I remember I received like 3 units of blood, yeah but the good chance I got was the baby was not affected with the sickness." (pg 2 line 38-41) P6 Most of the mothers in our study narrated the dark side of their individual experiences of pregnancy as described in the following subsections.

Recurrent painful crises
Most of the mothers narrated how they had experienced painful crises during the pregnancy, having severe body pains and struggling with their health status often resulting into frequent hospitalization and blood transfusions conditions uncommon to their non-sickle cell disease counterparts as the mothers explained; "I went through a lot painful experiences; I could be feeling dizzy, joint pains…I even got an attack and could get severe headaches every now and then. It is during this time that I went to hospital and was admitted." (Page 1 Line 12-14) P10 For most mothers keeping a stable health status was an uphill task, especially the mother who had been pregnant more than once noted that the complications in SCD such as pain, fever, blood transfusions increased during pregnancy as explained below by one of them.

Pregnancy loss
Three of the participants had experienced a miscarriage or intrauterine fetal death a process they described as difficult and painful as one was quoted in the excerpt below; "Okay my condition was not good so they gave me some injections and suddenly they told me that my baby had died in the stomach and yet it was okay from before because I went for scanning on Monday then again on Friday. They told me to go back again for scanning.
Then when I went there, they told me that the baby died and yet the baby had been okay.

Premature delivery
One of the mothers narrated that carrying the child to full term was a challenge as she ended up having to give birth earlier than expected and caesarian delivery was done to save the baby as well as her life and the fear of death was evident for mothers in the study. A few of the mothers noted that they had experienced desertion even from family members who at such times would have been a great source of support especially for those who had been abandoned by their partners as one of them is quoted below;

Referral to specialist services
Most of the mothers acknowledged that they were a special population from other women and required special care and attention. Thus attending a health facility where they were considered priority, having personnel offering a service and doing everything in their power to see that the mother is well created a favorable experience. However few of the mothers reported that they got linkage to specialist care which they received at MNRH as seen in the narratives below; "So when I went to the hospital, there is also our clinic, a sickle cell clinic.

Support from their male partners
The other important positive health care experience that was revealed was having a supportive partner. This was important because the male partners would provide care and love which is key in the wellbeing of the pregnant mother in the hospital as one mothers narrated in the excerpt below; "They tell us that we can't but me I have seen that if you have a good support, and when you are getting support, you are cared for, then you can carry the pregnancy up to term, that one, it is only care and love. When I was weak, he was there for me." (pg 3 line 63-

Delay to get medical assistance
Most mothers had great delays in receiving medical assistance when they arrived at the health facility however these delays weren't unique for the mothers with SCD. For some delays in care resulted in worsening of the pain crises as expressed in the excerpts below "In the morning, the doctor told me we have to have an operation and get the baby out.

Informal hospital charges
Some of the delays in receiving health care related to inability to pay informal charges.
One mother also noted that they were discriminated against on the basis of inability to pay the informal charges as she narrates below; They didn't treat me well, even worse than the last time. We gave them the money. The one you give the money does not work at night. There was a lot of money spent. We had to plead with them. Then when you give him 10,000shs and the other person has given him 20,000shs so the one who gave him 10,000shs is left and he goes with the one that gave him a lot more.

Unsatisfactory care
Despite waiting for long to see a health worker and being faithful to return to the clinic on their scheduled hospital visit days, the mothers relented that some of their visits were less informative and were not handled well by the health workers as most of the mothers narrated below; at the end of the day did not value their coming to the health facility or seeking medical assistance.
"But for the pregnancy, I used to come here, on the day they have told you come back.
You come, they check on you, but I don't know whether they used to estimate. They used to test the pressure, and they are telling me it is normal, it is normal but you are not well, till when I saw that it is too much and I said that let me go and try out at sickle cell clinic.

Maybe I will get help." (pg 7 line 203-207) P2
Two of the mothers narrated that many times during their hospital visits, they were attended to by a doctor who did not know much about SCD or did not know how to handle a pregnant woman with SCD. The mothers expressed the concern of limited knowledge by the healthcare workers more so handling pregnancy situations among women with SCD as reported in excerpt below; The few positive experiences that came out strongly were the joy of motherhood and giving birth to baby free from sickle cell disease. At health system level, some women had been attended to by dedicated health care workers; some were referred to specialist services and others cherished the support from their male partners. These made their experience of pregnancy enjoyable despite the challenges of their condition.
The dominance of the negative experiences among pregnant women with SCD in this study can be explained by inadequate support at family, community and health system levels.
The negative experiences were worsened by the wide spread belief that women with sickle cell disease shouldn't become pregnant because of the feared maternal and fetal complications. As a result women in this study lived in constant fear and had moments of depression. Our findings are similar to those of a study done in Brazil where pregnant women with SCD thus experienced sadness, depression and think of interrupting the pregnancy [6].
The few women who described positive experiences drew on joy of motherhood, giving birth to baby free of sickle cell disease and special treatments they occasionally received from some health workers. Many of the women with SCD report a desire to realize the dream of their companions -paternity but also the desire for children so as to constitute a biological family, which emphasizes the strength of the marriage bond and gender

Consent to participate
The study was individually explained to each participant and they were also encouraged to ask questions and seek clarification on anything related to the study. Informed consent was obtained from all study participants. It was emphasized to the participants that participation and withdrawal from the study was voluntary. Each study participant gave an informed consent and this obtained from the study participants before data was collection. Study participants under 18years were considered as emancipated minors gave their own consent for participation in the study.

Consent for publication
Not applicable because no images, videos or audio voices included.

Availability of data and materials
The data sets used for this study are available from the corresponding author upon a justified request.

Competing interests
The authors declare that they have no competing interests.

Funding
Self sponsored