Pregnant women who experience preterm labour rush to public hospitals closest to the informal settlement in which they reside. Preterm infants are discharged when they reach a certain weight. Mothers take their preterm infants to their homes inside the informal settlements. Yet, preterm infants have special needs and require specific management. Research confirmed that nurses working in community clinics near informal settlements are unaware of the challenges faced by such mothers. Community nurses are at the heart of nursing, they work closest to the community and have a distinct opportunity to provide contextual, community-based care and support to these mothers, to promote good health and prevent diseases.
This article aims to enhance community nurses’ insight about the mothers’ experiences in caring for their preterm infants post-hospitalisation.
The study was conducted in an informal settlement in Midvaal, Gauteng.
A qualitative, exploratory, descriptive and contextual research design was used. In-depth, phenomenological interviews were conducted with 10 purposefully sampled mothers to explore their experiences in caring for their preterm infants in an informal settlement. Data were analysed using Giorgi’s coding method. Ethical approval was received from the University of Johannesburg. Measures were applied to ensure trustworthiness.
Three themes emerged: mothers experienced intrapersonal responses, interpersonal responses and numerous physical challenges in taking care of their preterm infants.
Study findings revealed that mothers experienced several responses in caring for their preterm infants. Sharing their experiences can enhance community clinic nurses’ insight to provide contextual health education.
Infants born prematurely in various public hospitals were discharged when they reached a certain weight and demonstrated stable clinical vital data, regardless of their gestational age (Ramdin et al.
However, inadequate literature was available from Pub Med, Embase, CINAHL, UJoogle and Google Scholar databases about mothers’ experiences in having to care for their preterm infants whilst living in an informal settlement. The purpose of this study was therefore to develop an understanding of the mothers’ lived experiences in caring for their preterm infants in an informal settlement by exploring and describing their lived experiences of the phenomena.
A qualitative, exploratory, descriptive phenomenological and contextual design was employed. The key concern for the researcher to use the qualitative research design was that the qualitative approach is related to the naturalistic inquiry (Lincoln & Guba
The study was conducted in an informal settlement located in the Southern region of Gauteng province (Midvaal Local Municipality
This research focussed on the mothers’ lived experiences in caring for their preterm infants whilst living in an informal settlement. The researcher selected participants through a purposive sampling method by ensuring that they experienced the phenomenon in question (Denscombe
Ten adult mothers who lived in the informal settlement participated in the research. All the mothers gave birth to preterm infants, ranging from 30 to 36 weeks’ gestation. The preterm infants were admitted in various public hospitals’ neonatal wards or neonatal intensive care units for a minimum of 6 hours. The premature infants were discharged home, into the care of their mothers who lived in an informal settlement at the time of discharge.
During data collection, the participants’ children’s chronological ages varied between 8 weeks and 5 years old. Dains, Baumann and Scheibel (
The gatekeeper, a female resident of the informal settlement, occupied the role as the chief community worker. Community members voted her into that leadership position long before this research commenced. She was undoubtedly respected as a leader, a confidant and at times a midwife. She knew the residents’ homes and circumstances and was able to identify mothers with preterm infants and informed them about the research without the researcher being present. This allowed the prospective participants to freely decide if they wanted to take part in the study. Only on confirmation of participating in the research did the gatekeeper accompany the researcher to meet the participants. The researcher’s first visit to the participants involved the gatekeeper who introduced the researcher to the mothers. Thereafter, the researcher proceeded to casually converse with the potential participants in the presence of the gatekeeper. Once the participant verbally confirmed willingness to participate in the study to the researcher, did the researcher arrange a follow-up date and time for the interview. Informed written consent for participation, audio-recording of interviews and taking of photographs of the environment was obtained during the subsequent meeting prior to the commencement of the interview. The gatekeeper remained present during some of the interviews when the participants indicated that they wanted her to be at hand for reassurance or possible interpretation. If the gatekeeper established the participant’s ease with the researcher, she would leave the interview so to continue with her own work in the community and allow participant privacy.
Data were collected by the first author from December 2016 to July 2017 until data saturation occurred. Phenomenological interviews occurred in English, inside the mothers’ homes, during the daytime, on a date and time that suited the participants best. The researcher initiated the interview with one central research question: ‘
Data were analysed using Giorgi’s phenomenological descriptive data analysis method (Giorgi
The researcher made the abstract data meaningful by describing the themes using examples of the mothers’ lived experiences, as guided by Giorgi (
Principles of trustworthiness according to Lincoln and Guba (
Transferability was reached through purposive sampling of participants. Dependability was achieved by the code–recode method of analysis, where data were coded over an extended period of time to ensure consistency of the coding strategy. Personal notes and field notes were kept by the researcher. Confirmability was enriched by a dense description of results with direct quotations from participants as well as a confirmability audit, where the study supervisors audited the research project.
Informed written consent was obtained from each mother before every interview commenced. With the mothers’ permission, each interview was audio-recorded. Mothers were informed that they could freely withdraw from the research at any time without consequences. The researcher numbered each interview transcript to ensure anonymity and confidentiality. Research data and the master list of the mothers’ names and matching numbers were kept in a locked cupboard, as well as a password encrypted electronic file that could only be accessed by the researcher and the study supervisors. Information gathered about the mothers was kept in a manner that did not link them to the specific information. The principle of justice concerning fair treatment and the right to privacy and anonymity in maintaining the researcher–participant relationship was observed. Ethical approval to conduct the study was obtained before the study commenced from the University of Johannesburg’s Faculty of Health Sciences Research Ethics Committee (reference number REC-01-152-2016).
The 10 participants in this study were mothers ranging between 21 and 35 years old. All of them gave birth to preterm infants between 30 and 36 weeks’ gestation. At the time of the research, the mothers’ children were aged 8 weeks to 5 years old. Two mothers were employed full-time, one being a community worker and the other one a factory worker. Three mothers were employed part-time, working as domestic workers. One mother was self-employed, managing her own shop selling vegetables to the local community. Four mothers were unemployed. Three mothers attended school until the secondary school level. Seven mothers attended school only up to the primary school level. Nine mothers lived in
Three themes emerged from the data, which were identified as the mothers experiencing intrapersonal responses, interpersonal responses, combined with facing multiple physical challenges in their poor living environment. The researchers provide quotations of the mothers as example of all participants’ experiences.
Summary of themes demonstrating the mothers caring for their preterm infants in an informal settlement.
Theme 1 | The mothers experienced intrapersonal responses whilst taking care of their preterm infants in an informal settlement |
Theme 2 | The mothers experienced interpersonal responses whilst taking care of their preterm infants in an informal settlement |
Theme 3 | The mothers experienced a multitude of physical challenges in poor living conditions whilst taking care of their preterm infants in an informal settlement |
The first theme identified by the researchers was the mothers’ experiences demonstrated as intrapersonal responses in taking care of their preterm infants at home in an informal settlement. The conversations between the researcher and mothers emphasised their lived experiences in caring for their preterm infants whilst living in an informal settlement. In sharing their stories, the researcher developed an understanding of the mothers’ deeper feelings towards their preterm infants and the way they had to care for them. The mothers’ inner conflicts were identified in their expressions of distress at having to take care of an infant, particularly one born prematurely, being very small and fragile.
Some mothers experienced negative feelings in caring for a preterm infant:
‘I was angry because sometimes I think it’s going to fall, yes, yoh [
Some mothers’ stories demonstrated that they were scared of the preterm infants and they did not know how to deal with them:
‘Okay, she says she was very heartbroken. Because she think the baby will die. He was too small.’ (Interpreter for Participant 7, 21 years, lives in a
‘I don’t understand the premature babies.’ (Participant 1, 26 years, lives in a
Some mothers experienced negative encounters in caring for their preterm infants (Moghaddam Tabrizi et al.
The subsequent theme was the mothers’ interpersonal experiences in taking care of their preterm infants at home in an informal settlement.
The stories shared with the researcher demonstrated interpersonal responses from their life partners, their family members and close friends, as well as their neighbours. Sharing their interpersonal responses helped the researcher to understand the mothers’ experiences whilst taking care of their preterm infants.
Life partners supported the mothers by paying bills, buying food or seeing to the items which the infants needed, specific to preterm infants. In the following quotation, the participant referred to her partner being able to support her when he received an income. Her partner had a part-time employment and she perceived his occasional financial support as honourable support, positively influencing their relationship.
‘But my boyfriend, he did help. Sometimes he does help me. He does help me. Took him, take him and do kangaroo.’ (Participant 1, 26 years, lives in a
These findings were echoed in the study of Lydon et al. (
‘She said you don’t have food in your house, you think: Sometimes one week, no food. Your boyfriend he go to tavern. He shout. You fight. Every day. Every day your husband, if he has have money, he goes to the tavern.’ (Interpreter for Participant 10, 28 years, lives in a
Adama, Sundin and Bayes (
The researcher discovered a multitude of facts about the physical living conditions and the lived experiences of mothers caring for their preterm infants in an informal settlement. First, the mothers experienced frustration and despair having to deal with their physical environment. They suffered anxiety about their financial circumstances, causing some to start working very soon after birth and having to find someone willing to look after their preterm infant. As part of their poor living conditions, the mothers experienced extreme challenges in practising good hygiene, to the extent that they sometimes blatantly gave up trying to maintain good hygienic practices.
The participant shared how important the use of the primus stove was to provide in her baby’s nutritional needs:
‘“
‘I don’t like the
However, it is clear that some participants lived in such hopelessness that they did not even realise their preterm infants’ special needs. They experienced a comprehensive feeling of distraught because of the lack of finances and having to survive:
‘It’s not easy … Because if I was working it was better. Sometimes we sleep without eating.’ (Participant 3, 23 years, lives in a
Some mothers made an effort to implement hand hygiene before and after touching their preterm infants, before cooking and after toilet use. But participants surrendered to the effort because it was hard work to collect water, store and separate the water, and still practice hand hygiene:
‘Where do you wash your hands [
James (
Findings in the mentioned literature, compared with the findings of the study undertaken in the informal settlement regarding financial constraints, confirmed additional financial expenses in caring for a preterm infant, and the urgency to find a job to meet the financial responsibilities.
Oldewage-Theron and Slabbert (
This study materialised within the paradigm of postmodern social constructivism utilising a theory-generating, qualitative, exploratory, descriptive and contextual research design. Mothers taking care of their preterm infants in an informal settlement became overwhelmed with the responsibility of caring for their preterm infants under trying circumstances. They became despondent in making an effort to care for their preterm infant in an optimal manner. They were overwhelmed with negative responses like concern, stress and fear related to their preterm infants. Others were concerned about their loved ones being drawn into the care of the preterm infant and the added responsibilities they carried to continue with the normal daily living challenges and considering the special efforts to be made in caring for the preterm infant in the informal settlement. Some mothers had little or no support from their life partners, family or friends in caring for their preterm infants. They had to carry the brunt of the responsibilities in taking care of their preterm infants. All the mothers experienced multiple physical challenges in taking care of their preterm infants in circumstances completely unconducive for the health of preterm infants.
Being unable to change the social and physical circumstances inside the informal settlement, all the above-mentioned experiences left the mothers worn-out and disempowered whilst caring for their preterm infants, living in the informal settlement.
Research findings were verified and substantiated with literature in order to place the identified concepts in relation to the research results within this context. No literature was found confirming mothers’ experiences in caring for their preterm infants in an informal settlement after discharge from hospital. Literature which detailed mothers’ experiences in caring for their preterm infants during hospitalisation and after discharge in non-defined community contexts, were used to identify and support central concepts from the results. Literature control provided re-contextualisation of findings and resulted in current, existing nursing and other related theoretical literature.
The researcher believes that the condition of the mothers’ living circumstances would not improve in the informal settlement. It is expected that there will always be infants who are born prematurely. A multitude of literature based on research exists about mothers’ experiences in giving birth to preterm infants, caring for them in neonatal intensive care units (NICUs) and taking them home. Literature also exists about the circumstances inside informal settlements. However, to date, no research has explored the mothers’ lived experiences in having to care for a preterm infant in an informal settlement in Gauteng. Therefore, the purpose of this article is to demonstrate the experiences of mothers caring for their preterm infants in an informal settlement, in order for nurses working in the community clinics to provide contextual and individualised health education.
This study delivered an original contribution to the body of knowledge with respect to nursing in South Africa, especially towards mother and child health and specifically on preterm infants in the community. Being knowledgeable about the mothers’ experiences in caring for their preterm infants in an informal settlement, is significant as it contributes to the field of nursing research and nursing practice into the aspects of community health science, combined with aspects of midwifery nursing science and neonatal nursing science. Community health science combined with neonatal nursing science has not been addressed in South Africa and is therefore very relevant for the nursing practice.
Nurses working in community clinics serving an informal settlement need to comprehend what transpires when mothers attempt to integrate into the community with their preterm infant after discharge from hospital, as reiterated in the findings of the research by Gullino et al. (
Community health care is central to uplifting and supporting the South African health system (Rispel
Programmes are in place for the control of HIV and/or AIDS, the management of non-communicable diseases and communicable diseases, maternal health programmes focusing on antenatal care, postnatal care, and caring for the full-term infant (Machingaidze et al.
This study identified that the mothers experienced various responses in caring for their preterm infants in the informal settlement. The Department of Health (
The authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this research article.
A.S.d.P-F. initiated the research and was responsible for the data collection, data analysis and writing the manuscript as part of her PhD study. M.P., C.P.H.M. and W.O.J. assisted in the conceptualisation of the study design, preparation of the manuscript, data analysis and critical revision of the article.
University of Johannesburg’s Accelerated Academic Mentorship Programme (AAMP) provided funding for this research in the form of conference attendance, conference presentation and language editing of the dissertation.
Data sharing is not applicable to this article as no new data were created or analysed in this study.
The views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors.