Study design

We conducted a qualitative study from June 2019 to February 2020 using focus group discussions (FGDs) and in-depth interviews (IDIs) with caregivers of preterm infants to explore their experiences, expectations, challenges and available support systems for transitioning from hospital to home care. While FGDs captured shared experiences, the IDIs elicited lived experiences of the caregivers who did not want to participate in a group discussion.

Study setting

The study was conducted in Busoga region, in eastern Uganda, in the districts of Iganga and Jinja. Busoga is one of the poorest regions with some of the poorest health indicators in Uganda. The region’s post-discharge death rate among preterm infants ranges from 11.3% to 28% [16], compared with the national estimate of 14% [1]. Iganga district has a population of about 500,000, 95% of whom live in rural areas with poor access to healthcare. In contrast, Jinja district is an industrial city with nearly two-thirds (63.3%) of its 501,300 population living in urban areas. In Iganga, comprehensive preterm care, which includes all essential newborn care as well as advice to mothers at discharge for caring for the preterm baby at home, is provided at Iganga general hospital while in Jinja this care is provided at the regional referral hospital, which caters to the population of Jinja city and 11 districts in the South-Eastern region of Uganda.

Study population

Our study population included caregivers of preterm infants defined as parents (mothers and fathers), or other relatives or carers. We included caregivers with a preterm infant born within 1–12 months prior to data collection. We did not include caregivers whose infants were critically ill, i.e. infants who had life-threatening complications, during the study period and those who did not provide informed consent.

Sample size and sampling method

We conducted seven FGDs (each with 6–8 participants) and five IDIs among a purposively selected sample of caregivers of preterm infants. The final sample size was informed by thematic saturation. Our sampling strategy was informed by maximum variation, which entailed selection of participants with a range of household demographics including rural-urban residence and marital status; preterm status (extreme preterm to near full term); and considering both gender and age range of the participants. Although our approach was maximum variation, we did not aim to recruit equal numbers of mothers, fathers, relatives or participants from different demographic and socioeconomic status, which would make the study extensive and not practically feasible. Participant recruitment was guided by the staff in charge of the neonatal care units at the study hospitals who also trained the study staff on how to approach caregivers of preterm infants. The hospital staff provided a list of eligible participants with contact details and were not directly involved in the recruitment of the participants to avoid selection bias. The study team selected and approached the participants from the list using purposive sampling to attain maximum variation, as described above.

Data collection

Prior to data collection, we pretested a focus-group discussion guide among caregivers with preterm infants from different localities within Iganga district, who were selected from the hospital discharge records. The pre-tests were conducted in a manner that replicated the anticipated flow of data collection sessions, including administration of consent forms, demographic questionnaire, and discussion guide. We then revised the study materials to ensure that questions were clear, appropriate, and aligned with the overarching research question. The pre-tested guides included the key topics to explore caregivers’ experiences before, during and after childbirth. It included questions on experiences while in the hospital after birth, during discharge and when back at home with the preterm infant, information and support received at the facility and in the community. Probes were included to explore social and economic challenges associated with home care of preterm infants, ability and challenges of caregivers to understand and follow the recommended care, barriers and facilitators to seeking appropriate healthcare, and community and cultural attitudes towards preterm infants. We also included a specific question to explore caregivers’ views on ‘peer-support’. The guides were translated to “Lusoga”, the language most commonly spoken in the Busoga region, and back-translated to English. The focus-group guide was also used for conducting in-depth interviews with caregivers who were not comfortable in participating in group discussions.

Three (one male and two female) trained qualitative researchers conducted the FGDs and interviewed caregivers using the discussion guide. The discussions and interviews were conducted in person in the local language, Lusoga. On an average, the FGDs and IDIs lasted for about 45 minutes to an hour. All discussions and interviews were audio recorded and later transcribed verbatim in Lusoga and translated to English. During coding and analysis, we discussed issues of meaning related to translation. Field notes and observations were taken by a support researcher (note-taker) during the group discussions. All transcripts were proofread against original recordings to check for translation accuracy and cross-checked with field notes.

Data analysis

We used a thematic content and framework analysis approach to allow new insights and inductive categories to emerge directly from the qualitative data [17]. Content analysis interprets meanings from the text (data), a concept known as the natural paradigm. With this approach, codes are derived directly from text data. We modified this approach, including some codes informed by the research questions and discussion guides, which were grounded in the literature review [18]. An iterative team coding approach was used to check interpretations and improve validity, including discussion of cross-cultural concepts and meaning [19]. A team of five researchers (with two researchers external to the data), each read through two transcripts and conducted an initial coding of the 12 transcripts. The team then discussed coded scripts, making revisions once agreed. A codebook was developed and further refined following a second round of each researcher coding two transcripts. Through consensus, the codebook was revised and a primary code list applied to all transcripts using ATALAS.TI.9, while allowing for new codes. A secondary coder checked and made revisions, noting any disagreement. The full team conducted a tertiary review of the coded transcripts and then compared and discussed the findings to generate cross-cutting themes across the transition process from preparation in the health facility to caring for the infant at home.

Ethical approval

The study was approved by the Oxford Tropical Research Ethics Committee (OxTREC Ref 27–19), University of Oxford, the Institutional Review Board at Makerere University and the Uganda National Council for Science and Technology (Ref SS 5024). Administrative clearance was also obtained from each district health office and also from each health facility in Iganga and Jinja districts. Written informed consent was obtained from all participants.

Caregivers’ experiences through the transition process

Caregivers experienced fear, worry and confusion whilst in the health facility and while caring for the infant at home after discharge. Although they largely felt supported by healthcare workers while in the hospital, there were questions about appropriate communication. There was, however, a lack of adequate support for caregivers to care for the baby at home after being discharged from the health facility and they received mixed, and sometimes inaccurate, information from different sources.

Preparation in the health facility

Caring for a preterm infant after birth was a new and challenging experience for caregivers, which in many instances, was described as confusing. Some parents stated that they feared their newly born preterm baby because they looked “small” and fragile. This could be related to the lack of preparedness from the start of pregnancy due to a lack of information about how to care for a preterm infant. In addition, some mothers did not know that they were having a preterm birth due to incorrect diagnosis and others could not accept or “believe” that they were going to give birth before term even when they were told.

“I didn’t know I was going to give birth before time. They [healthcare providers] did not tell me until the last minute. Even at the time of delivery, they were seeing one baby. Yes, I used to go for antenatal [care] and I went four times. Even the doctor here used to check me and he only told me that I have one baby and it is very small. … but I gave birth to twins at seven months” (P5, Mother, FGD).

“It is doctor. … who monitored my pregnancy … he told me your uterus is weak, it will not be able to carry the baby up to nine months, you will not push but they will operate you at eight months and a half, but I couldn’t believe it.” (P8, Mother, FGD).

While some feared touching their babies, others recognised this as a new challenge and accepted the need to learn how to care for their baby from the healthcare providers. A mother narrated the challenges in providing Kangaroo Mother Care (KMC), which is skin-to-skin contact to keep the infant warm. She was worried about harming or dropping the ‘small’ baby while carrying him around.

“Kangaroo was difficult because the baby was small so it gave me a bit of hard time doing it … our babies were very tiny and they even scare us who produced them to the extent that we even don’t want to carry them” (P3, Mother, FGD).

Mothers frequently reported getting support from healthcare providers, mainly hands-on training on KMC, breastmilk expression and feeding. However, in some instances, they felt intimidated and at times overwhelmed by the instructions given by the healthcare workers. This is discussed further under the ‘appropriate communication’ theme.

Care at home after being discharged from the health facility

Once parents left the hospital, there was no clear path for continued support at home offered by the healthcare providers. Caregivers shared that one scheduled visit to the hospital was too little and not soon enough as the caregivers experienced more challenges in caring for the preterm infants in the first few weeks after discharge. At home, caregivers were not always aware of the baby’s needs, danger signs and where to seek help and treatment when the need arose. Due to their inability to notice danger signs in the baby, caregivers sometimes did not respond by seeking timely advice and care.

“I would fear because when you are here in the hospital you know the health worker is near, just in case the child gets a problem the health worker will help you but at home you are alone and it took me a long time to get comfortable… In the first weeks I wished I remained in the hospital where there are health workers” (P1, Mother, IDI).

Mothers expressed the need for continued care and support from healthcare workers or ‘counsellors’ who could visit caregivers at regular intervals after discharge from the hospital to assess hygiene and the overall care environment for the infant at home. This would have encouraged and reassured them and also improve their confidence in caregiving.

Caregivers raised worries about the extra costs of care while in hospital and in transitioning to home after discharge. They found it difficult and costly to purchase medicines, by which the caregivers meant essential micronutrient supplements and prophylaxis for anaemia in preterm infants such as multivitamin syrup and haematinics, and worried that this would compromise the health of the baby.

“Buying medicine was very expensive for us. The medicines only last two weeks and another type lasts only one week and they get finished. So, it was a bit expensive.… We try to save some money for the medicines” (P1, Mother, IDI).

Appropriate communication

While in the health facility, staff communication with mothers was important and had a strong influence on their preparedness. Although most mothers felt supported by healthcare providers, some experienced improper communication and lack of empathy from the healthcare providers. For example, some felt that healthcare providers were impatient or rude while giving instructions, which discouraged new mothers of preterm infants who needed more time and support to learn to provide KMC and express breastmilk or breastfeed. One mother expressed her disappointment with healthcare workers when her infant was in a neonatal intensive care unit (NICU):

“When my baby was in an incubator the healthcare workers provided a lot of care … but they were rude. As you know the way they speak, but I will not say they did not give us care. They cared for us but that rudeness. Some of us we have high blood pressure. They could buck [shout] at you and even the pressure rises…” (P2, Mothers, FGD).

Mothers did not feel entirely trusted by healthcare providers to care for the baby after leaving the hospital. Healthcare providers made the mothers practice KMC under strict supervision in the hospital by instigating fear about the need to re-hospitalise the infant after discharge due to their perceived lack of competence.

When they were discharging me,…, they [healthcare providers] told us that you are going but we know you are ending back here [if you don’t put] those infants on the chests. They told us to rehearse everything. We [mothers] could go to the health worker with our baby and they demonstrated very well how to wrap the baby in the chest (P3, Mother, FGD).

Fathers, on the other hand, felt left-out from the start as there was very little communication with them and were provided limited or no information. They felt less supported and less informed by healthcare providers about continuity of care of the baby at home after discharge. Consequently, this affected their involvement in caring as they felt less informed and empowered.

“… the reason why they [male partners/husbands] do not do it [provide care to the preterm baby], is that when they [health workers] are discharging the woman from the health facility you will not be there so you will not know the instructions they have given her. The health worker may not take the responsibility to tell you when you are going back. So usually when they are discharging, always the man will be busy, you will be arranging transport to take these people home and you will not know what the health worker will instruct you to do.” (P3, Father, FGD)

Lack of communication with fathers also meant that the burden of care was on the mother. It was suggested by one father that both men and women should be sensitised about preterm birth in the community and given adequate information to enable them to prepare and cope in case they have a preterm infant.

“So if they bring such sensitizations in the community and sensitize all people including men. Men are then told how to treat their wives when pregnant, the responsibility of men and the responsibilities for women when they have preterm babies. But with us here, when the sensitization sessions come in the community, we leave them for women.” (P4, Father, IDI)

Unmet information needs

Healthcare workers were a trusted source of information for care of preterm infants while in the hospital after birth. They were also expected to prepare mothers to withstand the challenges that they could face in caring for the infant at home after being discharged from the hospital.

“They [healthcare workers] should encourage these mothers because in the communities where we live people have negative attitudes towards having premature infants so they should put more efforts to encourage them [mothers] that even premature infants are human beings. When mothers produce premature infants, they get disgusted and they hate themselves and even when they look at the baby they wish if the baby died. They see it as something unusual so they [healthcare workers] should put more effort to encourage mothers …… that the baby will grow like any other child” (P4, Mother, FGD).

While at the facility, the type of information caregivers received from healthcare providers were mainly related to KMC, breastfeeding, hygiene, protecting the infant from infection, regularly giving vitamins and supplements. However, information varied in terms of frequency of KMC and breastfeeding. In addition, some caregivers ignored the information, falling back on practices that were more familiar in the home or community.

“… the doctor told me not to touch the baby when I have smeared Vaseline. He told me to forget about Vaseline. I took time without using Vaseline and the child had no problem. But, at one point I thought what happens when you smear Vaseline? So, I smeared Vaseline and I tied the baby in the chest and the baby sneezed and sneezed and sneezed, it had difficulty in breathing and started producing foam through the nose, the baby started convulsing and I was alarmed, …I called the healthcare worker.” (P6, Mother, FGD).

After discharge from the hospital, navigating through healthcare facilities was confusing as caregivers were allowed only a single visit back to the hospital for advice and support and thereafter were referred to other facilities. Consequently, due to a lack of proper information, they described moving across many facilities to get treatment for any perceived danger sign. In some cases, caregivers did not receive the kind of care and welcome at these health facilities compared to the hospital where they gave birth, which negatively affected care seeking.

“When I called the health worker, they told me that those are now old infants take them to …[another facility]. When I reached … [the other facility], there were almost no health workers to help me. After pleading, the baby was treated, but very late, at 10pm. Got treatment only after quarreling with the health workers and I wanted to just escape from there and go to a private facility.” (P2, Father, FGD).

Managing community expectations and perceptions

Many caregivers were distraught by the negative perceptions of members of their community who raised doubts about the development and survival of the infant. They felt that no one at home or in the community understood that although preterm infants needed more care, they could develop and grow normally.

“My neighbour told me that children who are born premature are always dull in class because their brains are not mature enough, that they do very badly in class, and she said you wait and see those ones, the period which the baby would have started to crawl they will just start sitting, the time when they will have started standing it is when they will start crawling” (P4, Mother, FGD).

Caregivers shared that community members’ attitudes about preterm infants affected their experiences in caring for their babies. Most community and family members expect to see and hold the baby shortly after birth, but when caregivers refused to ‘show’ their child/children to protect the infant/s from infection as advised by the healthcare providers, they were deemed as being arrogant. One mother had to close her business for two weeks because the customers wanted to see and hold the twins, and when she refused, they were unhappy. There was agreement among the participants that people (neighbours, friends and extended family) often instigate fear and stigma around preterm infants.

“I gave birth at seven months but the baby was very tiny and people said that is a rat, you just go and throw it away, but I told them that this is a baby, but they told me you go and throw that baby in a dust bin, but I told them that I cannot throw my baby in dust bin.” (P9, Mother, FGD)

“They say in our clan we don’t produce such babies. So when they tell you in their clan they don’t produce those so it is you in your clan which produces, it is a bit challenging.” (P5 and P8, Mothers, FGD)

Caregivers also received incorrect advice and pressure from community members. They confused the caregivers by giving advice that conflicted with what they were taught in the hospital.

“Those health workers deceived them. Such babies are kept near hot Jerrycans, and they are put near charcoal stove, so that the baby can grow well. But for you, you brag that they kept the babies in the incubator! But I refused to do what they [community members] were telling me to do. …, I became firm. I could lock my babies inside the house and I could not show them my babies. They only saw them when they have grown up.” (P7, Mother, FGD)

Peer-support

Peer-support was related to each of the above four themes as it was considered to have the potential to address caregivers’ information needs, bridge the communication gap between healthcare providers and caregivers (mothers and fathers) during the process of discharge, improve caregivers’ confidence in providing care at home, improve their ability to access appropriate health care, provide reassurance to them and deal with the negative attitudes and perceptions of the community.

Mothers reported being encouraged by their peer-preterm caregivers (other mothers who gave birth to a preterm infant) while in the health facility. In some cases, peer-preterm caregivers helped the mothers to provide KMC and to express breast milk.

“What gave me courage was putting us in one place all of us with preterm babies. … We used to support each other during kangaroo [KMC].” (P1, Mother, IDI)

“…… whenever you could look at your colleague [other mothers of preterm babies] you could gain courage.” (P5; Mothers, FGD)

Acknowledging the difficulty in receiving continued care from healthcare providers after discharge from the hospital, several mothers volunteered to share the knowledge and experience that they gained through trial and error to help others who have a preterm birth so that they do not go through the same challenges.

“..so those people [from the community] are supposed to support us but they instead discourage us. So I want to encourage my fellow mothers that these premature babies grow but those people out there they discourage us that the baby doesn’t grow, that a premature baby must die, but these babies survive and they should see our babies as an example that these babies survive and they grow.” (P6, Mother, FGD)

While the fathers felt ‘left-out’ due to lack of adequate communication and information from healthcare providers, they felt supported by other fathers who had a preterm child in the hospital, especially through information sharing.

“… even myself when I got a premature [baby] I got very worried because I had never seen them, but the problem is that most of us it gets us unaware and we don’t know anything about premature babies and other people think that premature babies don’t survive, because a few of them survive. Because me when I was in Kibuli we were very many people with premature babies, and we shared phone contacts.” (P2, Father, FGD)

Examples were shared about HIV programmes in which peer-support enabled HIV positive people to share their fears and worries, and to obtain information from others who had the infection and were undergoing treatment.

“We [men] can get involved [in care] if we are informed, because if someone gets such a baby it is easy to tell that person there is even this person who has experienced that, they can call that person who can tell you this and this and this and this, the way you see people with HIV, they can call someone who testifies that I also have it [HIV infection] but I am on medication and you can also take medicine to improve your life” (P4, Father, FGD)

Although there was a general consensus that support from other parents (both mothers and fathers) who had experience of caring for a preterm infant would increase caregivers’ confidence and ability to provide care, it was felt that getting such support might be difficult due to the stigma associated with preterm birth.

“It [peer-support] is a good idea only if people are willing to open up because it is not many people who will come out and disclose and tell you that I produced a premature baby. Some of us have stigma, we fear to be talked about that this one produced a premature because some people turn it into a song, but it [peer-support] is not a bad idea.” (P2, Mother, FGD)

A summary of the themes and sub-themes with key points are presented in Table 2.

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Table 2. Summary of the themes, sub-themes and key points from the qualitative research.

https://doi.org/10.1371/journal.pgph.0000528.t002

Strengths and limitations

This is the first study that we know of which explored the experiences of caregivers of preterm infants related to the transition process from hospital to home in Uganda. It includes information shared by 56 participants through FGDs and IDIs and highlights the experiences of both mothers and fathers from a range of socio-demographic backgrounds. However, a limitation of the study is that lived experiences of parents whose infants died were not included. We could not interview caregivers of preterm infants who died at home after discharge from the hospital due to cultural sensitivities. It is likely that their experiences and perceptions could be different from parents whose infants were alive at the time of interview. We were also unable to recruit caregivers with very young infants, aged 1–2 months, who were unable to spare time for participating in the study. Another limitation was that we did not capture the perspectives of healthcare providers about the preparation in the hospital and the discharge process, and continued care provision and support at home.