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).
Table 1 characteristic of women with sickle cell disease
Categories
|
Number
|
Percentage (%)
|
Age
|
|
|
15-25
|
4
|
26.6%
|
26-35
|
7
|
46.6%
|
36-45
|
4
|
26.6%
|
Marital status
|
|
|
Single
|
8
|
53.3%
|
Married
|
7
|
46.6%
|
Education
|
|
|
Primary
|
1
|
6.6%
|
Secondary
|
12
|
80.0%
|
Tertiary
|
2
|
13.3%
|
Pregnancy status
|
|
|
Prior pregnancy
|
12
|
80.0%
|
Currently pregnant
|
3
|
20.0%
|
Place of interview
|
|
|
Hospital
|
9
|
60.0%
|
Home
|
4
|
26.6%
|
Work place
|
2
|
13.3%
|
LIVED EXPERIENCES OF PREGNANCY AMONG WOMEN WITH SCD RECEIVING CARE 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.
Table 2 LIVED EXPERIENCES OF PREGNANCY AMONG WOMEN WITH SCD RECEIVING CARE FROM MNRH
sub themes
|
Theme
|
Phenomenon
|
POSITIVE EXPERIENCE
· Joy of motherhood
· Giving birth to a baby without SCD
|
Individual lived experiences
|
Lived experiences of pregnancy among women with SCD
|
NEGATIVE EXPERIENCES
· Recurrent painful crises
· Pregnancy loss
· Premature delivery
· Stigma and discouragement
· Relationship discord and desertion by spouse
|
POSITIVE EXPERIENCES
· Dedicated care and support from health workers
· Referral to specialist services
· Support from their male partners
|
Health care service experiences
|
NEGATIVE EXPERIENCES
· Delay to get medical assistance
· Informal hospital charges
· Unsatisfactory care
· Advocacy for caesarian section Vs normal delivery
|
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;
“Okay there is a certain doctor who told me that the sickler’s should not get pregnant because if you get pregnant, you can easily lose your life or the baby will die. So it is best we remove the baby now. Then I just told the doctor, ahh it’s just a gift from God. So, if it goes well that’s what God wants but if I die, that’s what God wants but for me, I will have my baby.” (pg 2 line 51-58) P1
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.
“Again while pregnant I got a fever, and when I went to the clinic the doctor reported that I was anemic. I was transfused with 5 bottles of blood and 4 of drip water. I had fear for my life because I had heard from people that blood from [mentions name of hospital] is infected; with this wrong information I ended up running out of hospital.” (Pg1 Line 11-14) P8
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. It was painful” (pg 1 line 12-18) P1
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.
“They said this child is about to get delivered before it’s mature but another doctor said let us first give her this medicine in the meantime so that the lungs can grow. So they injected me with medicine. That medicine was very painful but I didn’t care about its pain. I just prayed to God for one thing that he may deliver me and my child. And I stayed in Mulago for a week because she was a premature.” pg 2 line 50-53) P3
Stigma and discouragement
A part from the community beliefs and expectation that women with SCD can hardly conceive and bare children, pregnant mothers also shared experiences of being stigmatized; receiving discouraging and negative comments from those around them. This created feelings of being alone and not cared for as one woman mention;
“In most cases, the medical people blame you. You a sickler, why did you go for it? You knew, you think you can carry this pregnancy. You can’t. You knew you were a sickler, why did you engage in sex to get pregnant?” (pg 9 line 285-287) P4
Another woman carrying her first pregnancy narrated how she was being criticized and discouraged by health workers for being pregnant as sickler, she reported as quoted below;
“When I went to the hospital for the first time, the doctor that attended to me told me not to get pregnant again and she went on to tell me I shouldn’t have gotten pregnant because sicklers don’t give birth and die at the time of delivery.” (Page 4 Line 75-77) P12
The stigma, discouragement and criticism received by pregnant mothers often led to anxiety and depression as one of the mothers carrying her second pregnancy expressed in the excerpt below;
“When my first born was 4yrs I conceived again because I could get different advice from different people not to at least stop at one child; while pregnant with this child, I became ill because I was depressed… There reached a time when I could be depressed that I will not make it. And on one occasion while I was pregnant I remember I lost my conscious and on gaining it after 3days I realized they had operated me and removed the baby after getting an attack that almost took my life.” (Pg 1 Line 9-10) P8
Relationship discord and desertion by spouses
Most mothers with SCD were single mothers as they reported being disserted by their male partners. It’s should be noted that a positive relationship between pregnant women and their partners is vital as being deserted by their partners put a strain on their well being as one of the participants explained;
“Now me, the one who said he would take responsibility when he knew that I was pregnant, he took off. So when he took off, family members were suggesting that I imprison him. But I refused. The man ran away completely….. When I tried to contact the family, for them they were saying ah ah we can’t manage you. So I was left like that. So I carried the pregnancy up to, it was like even up to term.” (pg 2 line 18-35) P4
Some male partners after realizing the health condition of their partners fail to take their roles as fathers and this resulted in separation as one of the mothers narrated;
“The biggest problem is with men, after impregnating you they deny you knowing you are a sickler… There is a friend of mine previously who consulted him [participant’s partner]asking why he left and he was telling him that I am sick of HIV because of the sickle cell crises I was getting so throughout the pregnancy, the 9 months, he refused to give care. He was just quarrelling so I decided to give up with him because even the baby had died.” (pg 2 line 40-42) P9
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;
“For even my family members disappeared. The bad thing is my mother and dad; they died a long time ago and my sisters also gave up on me… ” (pg 2 line 43-46) P4
Abandonment left these women lonely and without anyone to care for hem especially where admission was involved as one of the women explained;
“I was very okay. But this one came due to stress. So I was admitted. I was there alone. I was left alone…. After he left I felt lonely and all alone. It was not a nice experience. That is the first thing I told you. I had no one to take care of me.” (pg 4 line 151-154) P4
HEALTH CARE EXPERIENCES
While participants recognized the importance of access to health care, there were several concerns that related to their experience with the facilities and the healthcare providers. A few were positive experiences divided into subthemes which included: dedicated care and support from health workers, referral to specialist services and support from their male partners while the majority had negative experiences with the health care they received summarized into sub- themes including: delay to get medical assistance, unsatisfactory care and inappropriate health care systems
POSITIVE EXPERIENCES
Dedicated care and support from health workers
Empathy, humanity, understanding and respect were qualities of health care providers, including doctors and nurses that a few of the mothers appreciated and credited as in the narrative below;
“Those people, they always attended to us in time. The results would come back on time, the feedback on how to solve the proble. They made sure that the baby inside is very fine, it was their routine to do that whenever we visited. And at least, they would look out for us.” (pg 5-6 line 163-165) P7
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. There is a doctor. He connected me to a specialist that I went to see. When I went, he told me some things and I did them”…. (pg 3 line 78-81) P2
“And the doctor told me you should go to Mulago and get this person but I didn’t know that [mentions specialist’s name] was there and I received specialized care. So, it was just God. It was just God.” (pg 7 line 209-211) P2
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 63-71) P4
NEGATIVE EXPERIENCES
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. There was a doctor who came to check on me and told the nurse, take this one to the theatre so she can be operated upon at 2pm.So I was there, waiting, knowing that at 2pm, I am going to theatre but I spent two solid days and was not taken yet the doctor had even already signed the forms. Until at night, I got an attack. I am pregnant; I started getting pain in the stomach. Remember, the time had elapsed I was in so much pain….” (pg 2 line 56-70)
Delayed medical assistance was not only for in-patient mothers but similar experiences were witnessed by out-patient mothers who often became exhausted and frustrated as one participant expressed below.
“You spend a long time waiting at the hospital... You come and sit for long, waiting. Sometimes you even go back without seeing someone…Sometimes you find the doctors tired. You find someone and he’s not in the moods, he’s not in the moods at all. And he is like ‘’Ah you people, we are tired. Come back next time.”(pg 7 line 214-225) P2
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.
The notion ‘No money, No care’ seemed to resonate with some of the mothers who could not afford to offer some money and ‘oil the health worker’s hands ’ [bribe] to the health worker in order to receive care and or receive care urgently even in circumstances of life and death.
“There was a friend who was also brought. She has SCD and had twins. As for her, she got pressure and even her children died but they didn’t care. She was a poor woman…. the doctors would bypass her just like that until the girl got pressure. But if they had rushed her, they [the twins] would not have died. That is when I started getting worried. The things we go through are terrible. If you don’t have money, you cannot give birth.”(pg 3 line 84-89) P13
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;
“It is just that when I get an attack; the problem is the other people don’t really know much about SCD worse still when you are pregnant because I have been in so many health facilities, I have similar experience. You can reach the facility and you are the one to give them details that, ‘when am like this, they do this and that and treat me in this way’ laughs.” (Pg 3 Line 78-78) P13
As a result of being less experienced in handling SCD patients, most mothers shared that many health care workers gave less care and attention to them despite their vulnerability. The mothers narrated that in some cases, the health workers were afraid or scared to handle/ care for a mother with such condition.
“…even recently, they took me when I was heavy and in crisis, but reaching the emergency section at [mentions name of regional referral hospital], the nurses and doctors were just looking at me. No one even came near my bed.
Of course, the medical people we meet many times they don’t understand sickle cell and yet they are the medical people who should know the condition but they don’t understand.” (pg 7 line 239-240) P4
Certainly, as a result of receiving sub-optimal care and attention, seeking antenatal care and support became unpopular to most mothers who never perceived the need for ANC if they had no complications.
“People don’t seem to care when you go. In the early months I had no complications whatsoever. My very first antenatal visit was at 7months. I was forced to go because I felt heaviness and I had started feeling unwell. If it wasn’t for the pain, I would not have gone.” (Page 1 Line 10-11) P10
Advocacy for caesarian section Vs normal delivery
To some mothers, the feeling that the health workers were less experienced to handle mothers with SCD is the reason they exhibited less care and attention. They believed that the health workers wanted to simplify their lives when handling pregnant women with SCD in labor by resorting/ advocating for C-section against normal delivery.
“I went back for admission. My doctor promised me to take me for caesarean section with no explanation. So I was on the ward and I told the doctor that now it is full term and I have not heard any movement. But I had moved up to term so I could push.” (pg 2 line 35-37) P4