The initial and the growing recognition in the family that a child has a disability or is different has the potential to create challenges such as stress, denial, depression and conflict among others (Panitch, 2008, Blum, 2007, Read, 2000). To a larger extent, these emotions are reflective of the social attitudes and historical realities of wider society (Kingston, 2007, Ferguson, 2002). Close contact with healthcare providers are important in helping parents become aware of the condition of their child. One example of this, is the use of essential services such as maternal care and the use of antenatal care clinics (Ensor et al., 2013, Kyei et al., 2012).
My study findings revealed that eighteen (thirteen from Lusaka and five from Kaoma) out of the thirty mothers reported attending antenatal care services at their local health centres during the pregnancy of their child with disabilities. Participating mothers provided varied accounts of their attitudes
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towards attending antenatal clinics prior to having their child. For example, Bo ma Kanyanga remarked:
Bo ma Kanyanga [K]: when the people from the health centre came to the village for an outreach programme. They told me to be going for antenatal. So, I went whenever I had time.
Similarly, Bo ma Angela [K] explained that the distance to the health facility and the time it took to be attended made it difficult for her to regularly attend. Another mother stated:
Bo ma Kasweka [K]: ahhh…the health centre is very far. It’s quite difficult to get there unless you start off very early in the morning before it gets hot but again we live very close to the game park so there is a risk of meeting dangerous animals that stray from the game park.
Bo ma Chikombe [K] travelled for about 4 hours to get to the nearest antenatal care services. However, when the pregnancy was in the third trimester, she stopped going there.
These comments especially voiced by mothers from Kaoma, suggested that there were many factors that impended the participants’ ability to access antenatal care services regularly. Most rural mothers lived far away from facilities providing antenatal service. Much as the value of these services was appreciated, the practicality of getting there was overwhelming. My findings on distance to a health facility expand on previous studies, in particular with the findings in Zambia by Kyei et al. (2012) and Phiri et al. (2016) which reveals that distance to health facilities in rural Zambia affects the utilisation of services such as maternal and child health care. Kyei et al. (2012) argue that 9 percent of rural women have access to antenatal care services with an optimum level of provision within the distance of 15Km radius. More recent research by Phiri et al. (2016) revealed that few mothers in rural areas access maternal-child health (MCH) facilities. They stated that 73 percent of the women have unmet needs for their antenatal and postnatal
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services in rural areas. These findings indicate that few rural mothers have geographical access to such services.
While Kyei and colleagues (2012) used the 2005 Zambia National Health Facility Census data to arrive at their findings, and Phiri and colleagues (2016) conducted focus group discussions with attendees at a health facility, my study expanded to a different area by obtaining the perspectives of mothers of children with disabilities in both urban and rural settings through biographical interviews, and demonstrated the challenges participating mothers experienced in accessing antenatal care services. My findings, further, demonstrated that mothers had other responsibilities that were equally important. Furthermore, as the pregnancy advanced, it became more difficult for mothers to attend antenatal care clinics especially in the rural Kaoma where distance to the facilities was a challenge.
Despite expressions like the ones described by mothers of Kaoma, most of the mothers in Lusaka did access antenatal services:
Tandiwe [L] I used to go to the health centre every month for screening.
Another mother remarked:
Violet [L] I used to regularly attend antenatal screening at Ng’ombe health centre.
It was evident that a significant number (thirteen) out of fifteen mothers from Lusaka attended antenatal clinic regularly. This adds to the Zambia Demographic Health Survey report (CSO, 2010) that states that the proportion of women in urban areas who attend antenatal services stands impressively high at 94 percent.
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Although some (thirteen) mothers, especially those in Lusaka, accessed antenatal facilities; none of them reported that the child’s condition was detected before the infant was born:
Sophia [L]:they told me that the baby in my womb was okay. Gertrude [L]: they couldn’t detect any condition in the baby
during ante natal care.
While most developed countries such as the United Kingdom and Ireland are able to identify certain conditions in the foetus, for the mothers participating in my study, it appeared that healthcare facilities had no capacity to detect abnormal conditions. For example, studies by Budd et al. (2015) and Smith et al.’s (2011) in the United Kingdom indicate that the National Health Services carries out routine screening of pregnant mothers for conditions such as Down’s syndrome, lethal skeletal dysplasia and spinal bifida amongst others.
Twenty-six (thirteen from each site) out of the thirty participants in both research sites reported that their babies were delivered in the health facility for example:
Faggy [L] I used to go to Kanyama health centre for antenatal and that is where I delivered from.
Similar cases were reported by Zion [L] a mother of a child with cerebral palsy and Fortunate [L] a mother of child with autism. Most of the mothers in Kaoma also said that they delivered from the hospital. Bo ma Kasweka [K] whose child had cerebral palsy said that she delivered from the local health centre. Similarly, Shenda [K] a mother of a child with Down’s syndrome delivered at a local health centre.
In contrast, four (two from each site) out of thirty participants delivered at home. One mother explained:
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Dorcas [L]: I delivered in the night at home alone and I was preparing to go to the hospital […] in the morning I bathed and went to Kanyama health centre with the baby.
On the other hand, Bo ma Mwila [K] delivered at home but was assisted by a traditional birth attendant who lived in the same village. When asked why she did not go to the health facility, she said she preferred the traditional birth attendant because this was someone she knew very well, someone who was respectful, friendly and readily available. Kruske and Barclay (2004) cite the World Health Organisation in their definition of traditional birth attendants:
…a person who assists the mother during childbirth and who initially acquired skills by delivering babies herself through apprenticeship to other traditional birth attendants […] a member of the community, chosen by that community to assist women in childbirth (Kruske and Barclay, 2004:306).
The narrative of Bo ma Mwila [L] adds to the findings of Sialubanje et al.’s (2015) study that focused on identifying factors contributing to low utilisation of maternal healthcare in Kalomo, Zambia. They argued that ‘socio-cultural
norms regarding childbirth, negative attitude towards the quality of services provided at the clinic, made most women deliver at home’ (Sialubanje et al. 2015:1). On the other hand, my findings indicated that the majority of participants both in rural and urban sites, delivered at a health facility despite some of them not regularly attending antenatal care clinics.
Sixteen (eight from each research site) out of the thirty mothers said that they did not realise early enough that their child had a disabling condition. Nineteen out of the thirty women reported that they had difficulties, either during pregnancy or when delivering, which they subsequently related to their child’s developmental difficulties when they recognised them. Two (one from each research site) of the mothers reported that they were in labour for over 10 hours:
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Susan [L]: I had prolonged labour of over 10 hours then it was forced labour. I think that might have had an impact on my daughter.
Bo ma Kaimbu [K]: I will just say the time I was pregnant; my pregnancy went up to 11 months, 2 weeks.
In both research sites, findings demonstrated that mothers aged 30 years and below at the time of the interview, reflected similar challenges in terms of noticing developmental delays. Most of this group of mothers were first- time mothers. Esther [L], aged 29 years-old and Bo ma Kasweka [K], aged 28 years-old both of whom had children with cerebral palsy, did not become aware that their child was not developing normally until their relatives noticed:
Esther [L]:my sister was the one who came and told me that at this age, the child should be crawling. So, this child has a problem and needs to be examined.
Bo ma Kasweka [L]: my auntie came to visit and she noticed that there was something wrong with the baby.
The above accounts from participating mothers reflected attempts to make sense of what was happening to their children and their growing awareness over time with the intervention of relatives. This situation was marked for first-time mothers, who were seemingly unaware of the developmental stages that a child would go through. However, the situation was different in both research sites for the mothers who already had a child, prior to having a child with disabilities. Eleven (seven in Lusaka and four in Kaoma) out of nineteen of these women reported that they were able to notice developmental delays in their children at an early stage. These more experienced mothers realised that their child was different very quickly. For example, Bo ma Anne [K], a mother of six children reported noticing that her daughter was paralysed in the early days after the child’s birth. The situation was similar for Hilda [L], a mother of nine, who recounted:
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Hilda [L]: I knew he must have had some form of disability when he did not cry when he was born. My other children were born without any complications.
In keeping with the findings of the assertions from other scholars (Maskey et al., 2013), these contrasting accounts from the mothers in my study suggested that experience of parenting was key in identifying conditions in their children. My findings revealed that the ability to respond to the needs of the child also varied according to the educational levels of the participants. All the seven mothers from Lusaka who had a secondary school education and above and had other children were able to read more about what was expected of a child at every stage of their life. This was not the case with mothers who were not educated to the level of high school. Two of the participants both of whom had professional jobs and were from Lusaka, reported that they had undertaken research when they suspected that their child had a condition. Chilinda [L] reported researching on her own to find out what was wrong with her daughter. Another mother commented:
Tandiwe [L]: there was a complication at birth, he didn’t cry. When I left the hospital, I went on the Internet, and read and researched about the causes and consequences of a child not crying at birth and I discovered that there was brain damage because of a lack of oxygen to the brain.
It was evident from their accounts that the mothers’ education had a positive impact on their knowledge of the child’s condition. Depending on their level of understanding the child’s condition, mothers reacted differently to the developmental delay of their child. This aspect is explored in greater detail in the next theme.