Abstract
Background
The family-centred care (FCC) is a model that emphasises the active participation of family members in patient care decisions, fostering collaboration and recognising families as vital partners in the healthcare journey, with evidence linking it to improved neonatal outcomes and parental satisfaction. In Nigeria, where neonatal mortality remains among the highest globally, evidence on FCC integration, particularly from the perspectives of both parents and health workers, is scarce.
Objective
To explore the enablers and challenges of FCC for preterm newborns in a tertiary neonatal unit in Northern Nigeria, drawing on the lived experiences of parents and nurses.
Methods
We conducted a qualitative study in the neonatal intensive care unit of Federal Teaching Hospital Gombe, Nigeria, between April 2023 and April 2024. Purposive sampling recruited parents of preterm infants who had been discharged and neonatal nurses. Three focus group discussions (FGDs) with 20 parents and one FGD with 14 nurses were held. Sessions were conducted in English and Hausa, transcribed, translated where necessary and analysed thematically using Braun and Clarke’s framework with NVivo V.10 software.
Results
Parents identified enablers such as the intrinsic value they derived, supportive structure and confidence/readiness to care for the baby. Challenges included the burden and stress associated with FCC, culture and attitude as well as role negotiation within the unit. Nurses highlighted enablers including job satisfaction and reduced workload, but expressed concerns over parental interference and resistance to change. The findings underscore the dynamic interplay of facility, staff and family factors in shaping FCC implementation.
Conclusion
FCC is acceptable and valued by parents in our neonatal setting, with important implications for neonatal policy and service delivery. Implementation of FCC is strongly influenced by the interaction of individual, institutional and community-level factors that shape parental engagement and experience.
Keywords: Health services research, Low and Middle Income Countries, Mothers, Neonatology, Qualitative research
WHAT IS ALREADY KNOWN ON THIS TOPIC.
WHAT THIS STUDY ADDS
Individual, system, cultural and work-related barriers affect its implementation in our setting.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE AND POLICY
FCC is acceptable and valued in our setting. However, inquiry into its enablers and challenges is necessary to optimise satisfaction and uptake.
Introduction
Involvement of families and caregivers in the health and care process of newborns has been shown to improve outcomes, yet the practical integration of family-centred care (FCC) remains a complex challenge in resource constrained settings. The FCC is a model that emphasises the active participation of family members in patient care decisions, fostering collaboration and recognising families as vital partners in the healthcare journey.1 As healthcare systems continue to evolve towards more patient-centred models, FCC is increasingly seen as essential for improving both patient satisfaction and outcomes.2 The implementation of FCC in maternal and newborn care is, however, often hindered by contextual challenges within the health system, such as physical constraints, institutional resistance, resource limitations and diverse family needs and attitudes.3–5 Effective communication, organisational commitment and leadership can facilitate the FCC model’s success. Factors related to the health facility, health workers, parents and patient interact in complex and dynamic ways to impact the implementation of FCC.6 7
Since the adoption and implementation of FCC for preterm newborns in our 35-bedded neonatal intensive care unit in Northern Nigeria in 2022 as part of a quality improvement initiative, we set out to formally explore and document the primary challenges and enablers of FCC in our setting, examining how these factors shape its application and offering recommendations for overcoming barriers to enhance its widespread use. Furthermore, there are limited studies conducted in resource-constrained settings on the implementation of FCC8 and less so for articles that combine the experiences of both parents and health workers as it relates to FCC for preterm newborns in sub-Saharan Africa. We present the enablers and challenges of FCC experienced by the major parties that interact in the neonatal unit during the hospitalisation of preterm infants in the context of Northern Nigeria.
Methods
Ethics statement
The study was conducted between 1 April 2023 and 1 April 2024 in Federal Teaching Hospital Gombe (FTHG) in line with the standards and principles set by the Declaration of Helsinki. Prior to commencement of the study, ethics approval was obtained from the Research Ethics and Review Committee of the Federal Teaching Hospital Gombe with Ref. number NHREC/25/10/2013 (attached as Appendix) for a mixed methods study. This is part of the qualitative arm of a larger study in which the quantitative data is a 2-year longitudinal data on the outcomes in the preterm newborns. To maintain anonymity of participants, no identifying information was used. Participants were informed about the nature of the study and they were told they could opt out at any stage without any differential treatment. Subsequently, informed written consent was obtained from all individuals who agreed to participate in the study. One parent declined due to time constraint and had other commitments at the time of data collection.
Site
This study was conducted at the FTHG—a 500-bed capacity tertiary health facility that serves as a referral centre for neonatal care from across Gombe state, Northeast Nigeria.9 The hospital serves a population of over 4 million and was selected because it is the only hospital that offers tertiary care for premature babies in the state. The newborn unit of the facility is part of the Department of Paediatrics and admits about 800 babies annually, a third of which are preterm. During admission of the newborns, mothers stay in the mothers’ room or obstetrical ward which is located approximately 50 metres from the newborn unit from where they frequent the unit as the need arises. There is no provision for accommodation for fathers. The mothers may receive visitors at any time of the day.
Babies admitted into the newborn unit are separated based on the place of delivery into ‘inborn’ (delivered within the facility) and ‘outborn’ (delivered at home or in other health facilities) sections to reduce the risk of cross-infection. The different sections have dedicated nursing and support staff who rotate between them every 6 months. The mothers, however, share the same accommodation.
Family-centred care intervention
The components of our intervention were based on elements of FCC described by Trivette et al.10 We offered continuous information sharing, emotional and financial support for parents, collaboration, respect, cultural sensitivity and integration of parents into daily care based on their capacities and competencies. Family was defined as father and mother or when any is unavailable, to their culturally appropriate representative such as a sibling or grandparent until they are available. The fathers were culturally saddled with taking major decisions during hospitalisation such as admission, discharge and consent for transfusion while the mothers stayed in the hospital throughout admission to provide breast milk, skin-to-skin care and call the fathers on phone when needed. Therefore, fathers were present on the day of admission, discharge and during the evenings after work to receive updates about the child. Parents had unrestricted access to newborns at any time of the day unless baby was undergoing specialised procedures such as central line insertions. They were given information and updates daily during the ward rounds and as often as the need arose by having discussions between the parents and doctors in the neonatal unit. They were told about the nature of the illness, the progress, need for change in treatment or investigations or interventions. They were also taught how to perform simple tasks such as changing of diapers, feeding with expressed breast milk and administration of oral medication, for example, multivitamins. They also practised intermittent skin to skin kangaroo mother care (KMC) because the mothers do not sleep in the neonatal unit. Mothers were provided emotional support by healthcare staff, family members, peers and veteran mothers (those who had prior preterm babies and have been discharged). Following discharge, they were offered support via a WhatsApp group for parents of preterms and direct phone calls to the neonatologist which parents used. Parents with financial difficulty were assisted through the Social Welfare Department of the hospital through a fee waiver for the bed fee and laboratory investigations within 24 hours of the physician making an application as well as cash donations from philanthropists. Emotional support was provided by the health workers in the neonatal unit as well as veteran mothers who volunteer to engage in peer-to-peer support as the need arises.
Study design
We conducted a qualitative study involving neonatal unit nursing staff and parents of the babies in our unit to understand their lived experiences of providing FCC. Our study was situated in a constructivist paradigm to ensure we focused on understanding and interpreting the lived experiences of those providing FCC through their own voices.
Participants recruitment and data collection
Sampling and recruitment
We purposively sampled and recruited parents/carers of babies who were managed in our unit and had been discharged. We set out to include both fathers and mothers but we were only able to get one father. The participants were recruited during follow-up clinic visits between 1 April 2023 to 1 April 2024. We included parents who had multiple births and lost a child during admission but had a child on follow-up to capture their views. We deliberately did not include those who lost a preterm and were not nursing a child during the time of this study as we were concerned about their psychological/emotional safety especially when they see their contemporaries holding their thriving preterm babies. Their experiences are slated for another study as we consider them a special group whose experience/insight we would love to explore. We approached them for informed verbal and written consent to participate in a focus group discussion (FGD) with other caregivers. The FGD for parents was conducted in both English and the Hausa language (which is the most widely spoken language in Northern Nigeria). The research team were fluent in both languages and therefore translation and switching between languages was seamless. Parents were also comfortable with the option of using their preferred language to express themselves. Data collection continued until we achieved data saturation and no new themes emerged from the focus groups, and the information collected had covered all the research questions (data sufficiency).
We also purposively sampled nurses working in the unit and obtained written informed consent for them to participate in the FGD. One FGD was conducted with 14 nurses (70% of the nursing staff) working in the newborn unit. The remaining 30% were either on duty or on leave at the time of the FGD. Having a single group for the nurses was the most feasible option in view of their schedule, number and willingness to participate especially that there was no funding to cover transport costs and rescheduling of smaller groups. The facilitation of the FGD was such that all participants were encouraged to air their views and those that were relatively quiet were deliberately engaged. It was conducted in English language because the nurses were a homogenous group who were able to express themselves confidently using the English language.
We did not include doctors on the unit in the study population because only four were permanently stationed in the unit as consultant neonatologists and were the researchers/authors of this work, and to avoid introduction of bias to findings.
We developed two focus groups/interview discussion guides (one for parents and the other for nurses), designed specifically for this study to capture the scope of the research questions following a review of the literature and observations in the newborn unit. The guides were used to stimulate discussions, and further prompts and clarifications were sought depending on the responses of participants.
Conduct of focus group discussions
We conducted the FGDs in the clinic area of FTHG, in a room large enough to contain the participants and the researchers, for the convenience of our participants. The parents who came for follow-up were told about the research and asked if they were willing to participate. Written informed consent was obtained for all participants. Those who consented to participate in an FGD were given further information about the research and were oriented about the FGD. The room had privacy and the parents were encouraged to discuss freely. The discussion guide was refined after the first FGD and results from analysis of the first group were fed into the next discussion. The questions were read in English and then translated to Hausa. About 80% of the discussions were in Hausa language due to the preference of the participants.
FGDs were facilitated by YRA, who had established rapport with the parents prior to the FGDs. This was to enhance the comfort of participants and leverage the relationship between the service provider and the users. This also enhanced the probes during the discussion because the first author had sufficient understanding of the context to understand the nuances of the conversation. To minimise hesitation in expressing negative experiences and challenges due to the power dynamics between health workers and parents of newborns, the participants were recruited after their babies were discharged from the hospital, so that participants would not feel vulnerable and apprehensive regarding their subsequent care. Challenges and enablers were therefore discussed in retrospect. The facilitator for the FGDs was conscious of her positionality and therefore only used open-ended questions and probes while allowing participants to express themselves freely.
Positionality and reflexivity of the researchers
The first, fourth and fifth authors are healthcare providers working within the neonatal unit and have built long-standing relationships with parents of preterm infants during the hospitalisation and subsequently during the follow-up clinic visits which made parents more relaxed and willing to talk. The ability of the researchers to communicate in Hausa, the predominant local language, together with a strong understanding of the surrounding sociocultural context, supported meaningful engagement with participants and a more accurate interpretation of parents’ experiences. Their commitment to improving the quality of care in the newborn unit, particularly in relation to parental experience, may have shaped both the development of the research questions and the way participants responded during discussions. This perspective also enabled a deeper appreciation of the realities faced by families within the unit. The researchers remained conscious of how their clinical experiences, expectations and commitment to improving care could influence data collection and interpretation. Reflexivity was maintained throughout the analytic process through regular team discussions, where interpretations were critically examined.
Recognising the inherent power dynamics between healthcare workers and parents, as well as the possibility of socially desirable responses, focus group discussions were conducted after discharge, when parents were better positioned to share both positive and critical feedback. This openness was reflected in the transcripts. Participants were encouraged to speak candidly, with the understanding that their input would inform quality improvement efforts, which also fostered a sense of ownership and contribution to the functioning of the unit. The second and third authors are health systems researchers who brought an external perspective that helped minimise bias and strengthen the overall rigour and credibility of the study.
Data management
The FGDs were recorded with a Sony digital sound recorder and transcribed verbatim, and translated from Hausa language to English for some transcript segments. Translation was done by YRA with attention to preserving the meaning and context of participants’ responses rather than word-for-word equivalence. To ensure accuracy, transcripts were reviewed, and back translation was done by a second bilingual translator for a fee, after which discrepancies were discussed and resolved. Where necessary, culturally specific expressions were retained and interpreted to reflect their intended meaning. We conducted a thematic content analysis using an inductive approach following the six stages of thematic content analysis outlined by Braun and Clarke11 to generate codes and then themes as shown in figure 1. Data analysis commenced after the first FGD with iterations made. Data was managed using NVivo V.10. To enhance credibility, coding of transcripts was done independently by YRA and OU and the codes were compared, differences in the codes were resolved by discussions between the independent coders. The approach to coding was both deductive and inductive. Deductive coding was done to ensure that the research questions (enablers and barriers) were answered, while the inductive approach allowed flexibility and ensured that the emerging themes were grounded in the data itself. The second coder does not work in the newborn unit, does not know the parents and did not participate in the conduct of FGDs. He therefore provided the external eye into the analysis process to reduce bias and enhance credibility.
Figure 1. Enablers of family-centred care.
The FGDs were analysed after each session with emerging themes documented and guided the refinement of the process. Recruitment of participants was stopped when no new themes emerged (data saturation) and the collected data had answered the research questions (data sufficiency).
Results
A total of 20 parents were included in our study in three FGDs. There were six parents in the first group and seven in the second and third groups. Only one male was present and was placed in the same group with his wife.
Sociodemographic characteristics of parents
The ages of the parents ranged from 19 to 39 with mean (SD) of 30.9 (6.1) years. Three mothers delivered twins but had only one surviving child during follow-up.
The mean (SD) gestational age at delivery was 30 (1.4) weeks
All parents had at least a secondary education, with one in two (55%) having a tertiary level of education.
Of the nurses recruited, there were 13 (92.6%) females and 1 male nurse across various cadres. The years of practice in the newborn unit ranged from 1 to 20 years.
The results of the thematic analysis are summarised in figures 1 and 2
Figure 2. Challenges of family-centred care.
Intrinsic value
Parents’ accounts suggest that participation in care was not only valued for its practical benefits but also actively constructed as a source of emotional reassurance, inclusion and an emerging identity as caregivers. Involvement in activities such as feeding provided mothers with access to both their infants and information, which they interpreted as being ‘carried along’ and recognised as part of the care team rather than passive observers within the unit. This shift reflects how participation functioned as a marker of belonging within a space where parents might otherwise feel peripheral.
This sense of inclusion also extended beyond individual experience and took on a relational dimension among mothers. Those who had initiated feeding became informal sources of information and reassurance for others who had not yet accessed the unit. As one mother described,
When I started coming to feed, other mothers that were yet to start were anxious and would ask me questions when I get back like “Did you see my child, is he alive? I will say yes I did, your baby is fine and she will be happy”.
highlighting how participation conferred a form of social authority and positioned mothers as intermediaries within peer networks.
Commencement of feeding was highlighted as the most memorable day of joy for all the participants and served as a significant milestone for them as parents. This was followed by the day of discharge for most parents, especially fathers, due to concerns about the hospital fees and frequent commuting to the hospitals.
Early physical contact further reinforced this evolving connection, with mothers interpreting proximity to their infants as the beginning of bonding and caregiving. However, access to these experiences was not uniform. Mothers who delivered via caesarean section described delayed entry into the neonatal space, suggesting that institutional and clinical processes shape the timing and nature of participation. Early contact appeared to facilitate familiarity with the environment and confidence in handling the infant, with simple tasks such as diaper changing functioning as entry points into more complex caregiving roles. Together, these findings illustrate how FCC is experienced not merely as a set of practices, but as a process through which parents gradually negotiate belonging, competence and connection within the structured environment of the neonatal unit.
Mothers who had contact with the babies within the first 24 hours of life got used to the routines faster, and by the time they were to start KMC, they were very familiar with the unit and had adjusted to the small size of their babies.
we prefer it to be done early, it is something we are eager to do
The intrinsic value associated with FCC was also echoed by the nurses in two domains. First they experienced job satisfaction and fulfilment while putting the mothers through their expected roles. The process of teaching the mothers made them feel empowered and useful. They also got happy by seeing how happy the mothers were on touching, feeding and caring for their babies. Involving the parents in the care process mostly resulted in better cooperation from the parents and improved relationship between the nurses and the parents, which in turn made the nurses fulfilled.
you know, when we teach them how to take care of these preterm and we see them doing it. We feel happy because learning has taken place. So, we are happy that we are able to pass the information we know to them and we gain their cooperation
At the same time, nurses interpreted FCC through the lens of workload and resource constraints. In the context of staff shortages, early involvement of parents was seen as enabling task-sharing, particularly for non-technical activities such as diaper changing, feeding and administration of routine oral medications. This redistribution of responsibilities provided a sense of relief and allowed nurses to focus on more specialised clinical tasks. As one participant noted,
when parents get involved, I think we feel happy because …. we can see the excitement on their faces, and we feel relieved too because we are relieved of some of the work that we do
illustrating how parental participation was also constructed as a practical response to systemic limitations. This dual framing of FCC as both professionally fulfilling and operationally necessary highlights how its implementation is shaped by the intersection of relational, institutional and resource driven factors within the neonatal unit.
Supportive structures
Parents’ experiences of FCC were shaped by a range of supportive structures that extended beyond individual interactions to include institutional, relational and spiritual resources. Within the neonatal unit, support from health workers, particularly nurses, was interpreted as central to parents’ ability to participate meaningfully in care. This support was not only technical but also relational, with communication style and emotional responsiveness influencing how parents experienced their roles. Parents described feeling encouraged and guided when health workers took time to explain care processes and engage them directly, often recalling these interactions as emotionally significant even months after discharge. As one mother reflected,
that nurse… she called all the mothers and gave a health talk. I was so happy because she did her job as a nurse,
suggesting that supportive communication was understood as an expression of professional commitment and care. Practical demonstrations of caregiving tasks further reinforced parents’ confidence and facilitated their transition into active roles. Being shown how to perform activities such as feeding and then being invited to replicate them under supervision was interpreted as both instructional and affirming, enabling mothers to gradually build competence. As one participant noted,
She said madam come and see how to feed your baby… then asked if I had seen how she did it,
illustrating how learning was embedded within interaction. Beyond the clinical space, family members and peers also played a critical role in shaping parents’ engagement. Support from relatives enabled mothers to take on new responsibilities, while peer interactions created informal networks of learning and reassurance. Mothers often observed and learnt from others in similar situations, with shared experiences such as gestational age or mode of conception fostering connection and mutual support. In this way, participation in care was not an isolated process but one that was socially constructed through collective experience.
Spiritual and religious practices emerged as an additional layer through which parents made sense of and coped with their experiences. Prayer and faith were described as sources of strength that enabled parents to endure the uncertainties of neonatal care and remain engaged in caregiving. For some, understanding the medical condition of their infants was important not only for clinical awareness but also for framing their spiritual responses. As one parent expressed,
I did not cry, rather I was praying,
highlighting how faith functioned as an emotional anchor. These findings suggest that supportive structures in FCC are multidimensional, encompassing not only health system inputs but also social relationships and belief systems, all of which interact to shape how parents interpret, navigate, and sustain their involvement in the care of their newborns
Confidence and readiness
Prior birth experience/multiparity was found to be an enabler of FCC in that mothers who had prior deliveries found it easier to adjust to their expected roles of caring for the newborn and participating fully. For example, they knew how to change diapers and cope with excess breast milk production.
because I have delivered before, it was easier to change diapers and cope.
The fact that they have cared for a newborn before gave them some degree of confidence in caregiving.
Burden/stress
Parents’ accounts suggest that involvement in FCC was often accompanied by emotional and physical strain, which they interpreted as both a necessary responsibility and a significant burden. Fear emerged as a central factor shaping how parents engaged with their preterm infants, particularly in the early stages of hospitalisation. Many described encountering a level of fragility they had never previously experienced, with the small size of the baby and the presence of medical equipment contributing to uncertainty and hesitation. As one mother recounted,
I saw my baby on the fourth day and when I did, I saw so many things that were put on her. The eyes were covered, her nose was covered too because she was on oxygen, you would think she will not make it but because it was meant to be, she did. This is something you have never seen before, there is a drip, something in the mouth, another in the nose, with light(phototherapy) on the baby
illustrating how unfamiliar clinical environments and technologies were interpreted as signals of severity and potential loss. In this context, fear functioned not only as an emotional response but also as a barrier to physical interaction, limiting parents’ confidence in touching or handling their babies.
This uncertainty extended beyond the hospital setting, with some parents expressing anxiety about discharge despite clinical improvement of the infant. The transition home was not always experienced as relief but rather as a shift in responsibility for which parents felt unprepared. As one mother explained
I was scared to start cup and spoon feeding at 9 days because it meant we were closer to discharge and I didn’t want to go home as I did not believe I could handle such a child at home. The baby was so tiny
highlighting how participation in care did not always translate into confidence. These accounts reflect how FCC is negotiated within a continuum of dependence and responsibility, where increasing involvement may simultaneously empower and overwhelm parents. The anticipation of managing care independently, particularly in resource-constrained settings, intensified feelings of vulnerability and self-doubt.
In addition to emotional strain, parents described significant physical and social demands associated with participation. Frequent visits to the neonatal unit, night-time feeding and sleep disruption contributed to exhaustion, while exposure to adverse events such as the death of other infants heightened emotional distress. Expressions of crying or suppressed grief reflected the cumulative burden of uncertainty and loss within the unit. At the same time, competing responsibilities such as recovery from caesarean section, childcare for other children and household duties further constrained parents’ ability to engage consistently in care. As one mother noted,
even when you lay down, you struggle to fall asleep. You hardly have enough peace of mind to sleep because you are thinking of waking up soon again.
A lot of the mothers reported crying during the hospitalisation of their babies due to the emotional stress and the uncertainties of having a critically ill newborn. Experiencing the death of other babies in the unit was another source of emotional distress for mothers.
other babies died in the SCBU, that was why I was crying
Another mother said
I didn’t cry but the tears were hanging, my eyes were red
The fact the parents had competing responsibilities added to the stress and it interfered with FCC. For example, during the ward rounds, the fathers were typically absent, some mothers were still recovering from Caesarean sections while others had small children at home to cater for, making them indisposed.
I have 3 other children. I have to wake up by 4 am, cook, prepare my children for school, I hardly get enough sleep because the baby is used to feeding every 2 hours. Once it is time, even if I am sleeping, the baby will wake me up with her cry. Honestly, it is a big challenge for me
illustrating how participation in FCC is shaped by broader social roles and obligations. Together, these findings highlight that parental involvement is not simply limited by individual willingness, but is deeply influenced by intersecting emotional, physical and structural pressures that shape how care is experienced and enacted.
Culture and attitude
Several parents decried the poor attitude of staff during hospitalisation which ranged from rude communication, withholding of information and wrongly assuming that the mothers should know what to do even without being taught. Activities that appeared simple to the health workers were new/strange to some of the mothers often leaving them confused on how to carry out instructions. For example, at the commencement of feeding when a mother was asked to express breast milk, the health workers assumed that it was a straightforward instruction, while first-time mothers may not have sufficient breastfeeding knowledge to be able to carry it out independently. As exemplified in the quote by this mother
My worry was when they asked me to extract breast milk, I had never done it, I didn’t know how to extract breast milk. I have never given birth to a preterm baby before. I told the nurses I cannot do it. How can I do it when I don’t know how to do it?
The nurses on the other hand struggled with mothers who were resistant to change their previous perceptions about child care. For example, mothers who had previously raised children felt they knew what to do with a newborn regardless of the advice of the health team and frequently missed feeding times and schedules by comparing the preterm with other babies delivered at term.
They are used to the other ways that they breastfeed their babies, so when you try to correct them, they feel that it is not the right way
Parents’ accounts highlight how participation in FCC was shaped not only by clinical guidance but also by deeply embedded cultural expectations surrounding childbirth and family roles. In this context, caring for a newborn is understood as a collective social experience, where extended family and community members expect access to see and hold the baby. However, for parents of very preterm infants, these expectations came into tension with medical advice to limit handling due to the risk of infection and injury. Mothers therefore found themselves navigating competing systems of meaning, where adherence to clinical recommendations could be interpreted within their social networks as exclusion or rejection.
This tension was particularly pronounced in interactions with in-laws and extended family members, where refusal to allow physical contact with the baby was sometimes perceived as ‘hoarding’ or a disruption of accepted family norms. As one mother explained,
the challenge we had with those who came to see the baby, whenever we say to them the doctor said the child should be handled minimally, we only expose the child a bit for them to see and they didn’t like that. They felt bad when they were not allowed to handle the very small baby but we insisted and told them there was no other way around it.
illustrating how clinical restrictions were not always understood within the same framework as health workers intended. In this way, mothers’ efforts to comply with medical guidance required them to justify and defend their actions within social spaces that may not recognise or prioritise biomedical reasoning. Participation in FCC thus extended beyond the hospital into the negotiation of social relationships and expectations at home and within the community.
These experiences reveal how cultural norms and social obligations can complicate the implementation of FCC, placing mothers in positions where they must balance competing demands while managing potential social consequences such as gossip or exclusion. Adhering to recommended care practices was therefore not simply a matter of knowledge or willingness, but involved navigating relational pressures and maintaining social harmony. This highlights that parental participation is shaped not only by individual or institutional factors, but also by broader cultural contexts that influence how care practices are interpreted, accepted, or resisted.
Role negotiation
In the implementation of FCC, the parents as well as the nurses had challenges with role negotiation in that the parents perceived an unfair task shifting while the nurses felt the parents were interfering with their roles and professional identity. Initial perceptions of FCC as an added burden suggest that parents interpreted their involvement as a shift in responsibility rather than shared care, highlighting ongoing negotiation of roles within the unit. Some mothers got upset when they were called to participate in the care of their babies. They had the opinion that the child is under the custody of the health workers and they are paying for such services. Therefore, they see no reason why they should be called on to participate in any task or role.
first they called me to come and express breastmilk, then they asked me to be changing diapers, Ah! I said is it my job? Is it not their job? Why would they ask me to change the diapers?. With time I realized it is my job because it is my baby. The work there is tedious so they cannot do everything at the same time for all the babies but if the mother is there, she can assist in one way or the other, but at first I felt bad seriously
Involving the parents during FCC meant the parents had access to a lot of medical information, which may or may not be interpreted appropriately. This sometimes led to conflict and altercations in the newborn unit because prior to the introduction of FCC in the unit, only the health workers had access to medical information and most times did not have to explain much to the parents. Empowered parents changed the power dynamics in the neonatal unit such that some health workers viewed the parents as arrogant and disrespectful. Although most times the interference was justified, participants felt the ego of the health workers was bruised and some resorted to limiting the interference through hoarding of information.
Sometimes antibiotics would be stopped during ward rounds, the nurse on afternoon shift will not be aware and will attempt to serve it. I will be the one to tell her that it has been stopped.
Following such events, another mother added that
At some point the nurses started sending me out during their handover and serving medications because they felt I knew too much and was trying to teach them their job.
Discussion
Our findings demonstrate how FCC is experienced and negotiated by parents and healthcare providers within a resource-constrained neonatal setting. Guided by a constructivist paradigm, we illustrate how participants interpret and assign meaning to their experiences of FCC, recognising that these meanings are shaped by social interactions, institutional structures and cultural context. Rather than functioning as a purely clinical model, FCC emerged as a socially constructed process through which parents gradually develop a sense of belonging, competence and identity as caregivers. At the same time, its implementation is shaped by a complex interplay of factors operating across multiple levels. At the individual level, parents’ engagement was influenced by prior experience, emotional readiness and evolving confidence in caring for fragile preterm infants. These findings however, may be skewed by the preponderance of mothers in this study as only one father participated hence subthemes like parity and emotional readiness featured prominently. These are domains associated with females/mothers who perform the primary caregiving role in our setting. At the institutional level, communication practices, staff attitudes and underlying tensions around professional roles shaped how FCC was enacted and received. At the broader sociocultural level, religious beliefs, family expectations and community norms influenced how parents interpreted and navigated their involvement in care.
Overall, parents in this study welcomed the opportunity to participate actively in the care of their hospitalised newborns, with engagement further strengthened by encouragement from healthcare providers, spouses and extended family members. This is consistent with evidence from both high-income (UK) and middle-income (South Africa) settings,12–14 reinforcing the view that structured parental support should be a core component of neonatal care.8 Beyond these interpersonal influences, our findings underscore the critical role of macrolevel sociocultural factors in shaping how FCC is understood and practised within the neonatal unit. In particular, spirituality and religion emerged as salient enablers of parental engagement. Although not routinely integrated into FCC models, parents frequently drew on faith-based practices as a means of coping with the uncertainty and emotional burden of caring for a preterm infant. This is consistent with Brelsford et al’s systematic review, which highlights the role of psychospiritual interventions in reducing parental distress.15 In our predominantly religious context, reliance on faith was not incidental but central to how parents interpreted and navigated their experiences. Similar patterns have been reported among African American parents of critically ill infants,16 suggesting that spiritual resources represent an under-recognised yet potentially powerful dimension of FCC across diverse settings. Integrating these sociocultural realities into FCC design may therefore enhance its acceptability, relevance and effectiveness.
Parents also described feelings of helplessness, fear of infant loss and sensory overload within the neonatal unit, such emotions have been previously documented in other studies.13 17 These experiences highlight how engagement in FCC is not only shaped by opportunity, but also by how parents emotionally interpret the neonatal environment. In parallel, cultural expectations surrounding childbirth and the puerperium, particularly the influential role of extended family and in-laws, further shaped how FCC was enacted. As observed in studies from China and Ghana,17 18 these social norms can either support or complicate parental participation, a pattern similarly reflected in our findings.
At the institutional level, power hierarchies within neonatal units play a critical role in shaping interactions between the parents and service providers. Healthcare professionals are often positioned as custodians of specialised knowledge, with authority to assess and supervise parental competence.13 19 In some settings, increased parental involvement has been associated with perceived threats to professional identity and role boundaries.20 In contrast, nurses in our study, working within the constraints of limited staffing, largely welcomed parental participation, often framing it as both supportive and necessary for managing workload. However, this dynamic was not without tension. Instances where parents became more informed or assertive occasionally led to discomfort among staff, reflecting underlying challenges in negotiating authority, control and shared responsibility within FCC.21 Importantly, when parents adhered to guidance and engaged constructively in care, nurses reported greater professional satisfaction and a stronger sense of impact, suggesting that collaborative alignment enhances both relational and professional outcomes. Conversely, gaps in communication, particularly around tasks such as expressing breast milk, were associated with parental frustration, underscoring the central role of clear, supportive information exchange in facilitating effective participation18
Altogether, these findings underscore the need for holistic FCC models that extend beyond clinical task-sharing to addressing emotional support, sociocultural context and institutional dynamics, including staff workload and role clarity. This model provided an opportunity for collaborative partnership as well as reduced workload within the neonatal unit as the activities did not only include task sharing but also emotional and financial support for parents. They were also carried along that they felt empowered to take decisions and raise concerns. In resource limited settings where the health system is fragile, such collaborative models could serve as accelerators for improved communication with parents/caregivers, better service delivery, confidence in the health system and task sharing with the ultimate goal of improving the quality of care.
While our study demonstrates that FCC, as recommended in WHO standards for the care of small and sick newborns,22 is acceptable within resource constrained settings, its success depends on how well it is adapted to local realities. Tailoring FCC to align with sociocultural norms, while simultaneously addressing power relations and communication practices within neonatal units, will be critical to optimising outcomes for both families and healthcare providers.
Strengths and limitations of the study
This study captured the perspective of both caregivers and health workers simultaneously making it easier to imagine the dynamics of interaction between both parties in the newborn unit. It also captured both the positive factors that enabled and the negative factors that served as barriers simultaneously. This adds to the limited literature on FCC for preterm newborns in Nigeria. This study had several limitations. The perspective of doctors and other staff within the neonatal unit including cleaning staff and porters were not captured in this study due to the few numbers and their involvement as the investigators in this study. Similarly, fathers were not well represented in the study population due to their unavailability for recruitment and therefore the views captured are largely those of the mother as traditionally the fathers are occupied with activities such as sourcing for funds and caring for the other children while the mothers come to the hospital for follow-up. These are all stakeholders in the newborn unit and play critical roles in the planning and implementation of FCC. Additionally, the enablers and challenges were discussed after discharge from the unit and parents may not recollect some details, leading to possible omissions/recall bias. Also, the exclusion of parents with previous neonatal losses from the study.
Implications for policy and future research
Our findings have important implications for policy and practice. Effective implementation of FCC requires deliberate attention to the emotional, relational and contextual factors that shape how care is experienced and enacted. Parental fear and uncertainty, particularly in handling fragile preterm infants, emerged as a key barrier and should be pragmatically addressed through early, structured orientation programmes. A model of progressive involvement, moving from observation to guided participation and ultimately independent caregiving, can strengthen parental confidence while reducing anxiety.
Importantly, what is often perceived as parental resistance reflects the intersection of prior caregiving experience, cultural beliefs and entrenched expectations of hospital roles, rather than simple non-compliance. Addressing this requires consistent, respectful and dialogic communication that acknowledges existing knowledge while clearly explaining the rationale for modified care practices. Embedding shared decision-making and fostering open communication are pivotal to aligning expectations and building trust between parents and healthcare providers. Given the central role of faith in shaping coping and meaning, FCC models in similar settings should incorporate practical spiritual sensitivity as part of holistic care. This may include enabling prayer within care environments, facilitating access to faith leaders and equipping healthcare providers to engage respectfully with parents’ spiritual expressions without compromising health needs of other newborns in the neonatal unit. Recognising these dimensions supports the broader meaning-making processes through which parents sustain engagement in care. Finally, the framing and operationalisation of FCC within health systems is critical. To avoid perceptions of task-shifting, FCC must be explicitly positioned as a collaborative partnership rather than a transfer of workload. This requires clear role delineation, reassurance that clinical responsibility remains with trained professionals and communication that emphasises shared goals for infant survival and well-being. At the system level, adequate staffing, training in family-centred communication and supportive supervision are essential to ensure that FCC strengthens care quality rather than compensates for resource constraints.
Conclusion
The findings demonstrate that FCC is acceptable and valued by parents in our neonatal setting, with important implications for neonatal policy and service delivery. Implementation of FCC is strongly influenced by interacting individual, institutional and community-level factors that shape parental engagement and experience. Strengthening communication practices, clarifying caregiver roles and addressing sociocultural barriers should therefore be prioritised within neonatal health policies and routine facility-based care. Integrating these components into health system strengthening efforts has the potential to improve parent-provider collaboration, enhance the quality of neonatal care and support better outcomes for preterm newborns in low-resource settings.
Footnotes
Funding: The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Data availability free text: Available upon reasonable request.
Patient consent for publication: Not applicable.
Ethics approval: This study involves human participants and was approved by the Research Ethics and Review Committee of the Federal Teaching Hospital Gombe with Ref. number NHREC/25/10/2013. Participants gave informed consent to participate in the study before taking part.
Provenance and peer review: Not commissioned; externally peer reviewed.
Patient and public involvement: Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.
Data availability statement
Data are available upon reasonable request.
References
- 1.Roué J-M, Kuhn P, Lopez Maestro M, et al. Eight principles for patient-centred and family-centred care for newborns in the neonatal intensive care unit. Arch Dis Child Fetal Neonatal Ed . 2017;102:F364–8. doi: 10.1136/archdischild-2016-312180. [DOI] [PubMed] [Google Scholar]
- 2.Yu X, Zhang J. Family‐centred care for hospitalized preterm infants: A systematic review and meta‐analysis. Int J Nurs Pract. 2019;25 doi: 10.1111/ijn.12705. [DOI] [PubMed] [Google Scholar]
- 3.Oluoch D, Hinton L, English M, et al. Mothers’ involvement in providing care for their hospitalised sick newborns in Kenya: a focused ethnographic account. BMC Pregnancy Childbirth. 2023;23:389. doi: 10.1186/s12884-023-05686-3. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4.Afulani PA, Ogolla BA, Oboke EN, et al. Understanding disparities in person-centred maternity care: the potential role of provider implicit and explicit bias. Health Policy Plan. 2021;36:298–311. doi: 10.1093/heapol/czaa190. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 5.Bellizzi S, Panu Napodano CM, Murgia P. Family-centered care for newborns: a global perspective and review. J Trop Pediatr. 2024;70:39142805. doi: 10.1093/tropej/fmae026. [DOI] [PubMed] [Google Scholar]
- 6.McCarthy E, Guerin S. Family‐centred care in early intervention: A systematic review of the processes and outcomes of family‐centred care and impacting factors. Child . 2022;48:1–32. doi: 10.1111/cch.12901. [DOI] [PubMed] [Google Scholar]
- 7.Lloyd B, Elkins M, Innes L. Barriers and enablers of patient and family centred care in an Australian acute care hospital: Perspectives of health managers. Patient Exp J. 2018;5:55–64. doi: 10.35680/2372-0247.1270. [DOI] [Google Scholar]
- 8.Adella J, Maraschin FG, Nagraj S. The global scope and components of family-centred care for preterm infants: An umbrella review. PLOS Glob Public Health . 2025;5:e0004900. doi: 10.1371/journal.pgph.0004900. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9.FTHGOMBE Just another WordPress site. 2025. https://fthgombe.gov.ng/ Available.
- 10.Trivette CM, Dunst CJ, Allen S, et al. Family-centeredness of the Children’s Health Care journal. Child Health Care . 1993;22:241–56. doi: 10.1207/s15326888chc2204_1. [DOI] [PubMed] [Google Scholar]
- 11.Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77–101. doi: 10.1191/1478088706qp063oa. [DOI] [Google Scholar]
- 12.Bramwell R, Weindling M, FVWR Research Team Families’ views on ward rounds in neonatal units. Arch Dis Child Fetal Neonatal Ed. 2005;90:F429–31. doi: 10.1136/adc.2004.061168. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13.Gavey J. Parental perceptions of neonatal care. J Neonatal Nurs. 2007;13:199–206. doi: 10.1016/j.jnn.2007.06.001. [DOI] [Google Scholar]
- 14.Horwood C, Haskins L, Luthuli S, et al. Communication between mothers and health workers is important for quality of newborn care: a qualitative study in neonatal units in district hospitals in South Africa. BMC Pediatr . 2019;19 doi: 10.1186/s12887-019-1874-z. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 15.Brelsford GM, Doheny KK, Stoner J. A Systematic Review of Psycho-Spiritual Interventions in the NICU. Adv Neonatal Care. 2024;24:141–50. doi: 10.1097/ANC.0000000000001160. [DOI] [PubMed] [Google Scholar]
- 16.Wilson SM, Miles MS. Spirituality in African-American mothers coping with a seriously ill infant. J Soc Pediatr Nurs. 2001;6:116–22. doi: 10.1111/j.1744-6155.2001.tb00133.x. [DOI] [PubMed] [Google Scholar]
- 17.Yue J, Liu J, Williams S, et al. Barriers and facilitators of kangaroo mother care adoption in five Chinese hospitals: a qualitative study. BMC Public Health. 2020;20:1234. doi: 10.1186/s12889-020-09337-6. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 18.Abukari AS, Schmollgruber S. Perceived barriers of family-centred care in neonatal intensive care units: A qualitative study. Nurs Crit Care. 2024;29:905–15. doi: 10.1111/nicc.13031. [DOI] [PubMed] [Google Scholar]
- 19.Sousa FCP, Montenegro LC, Goveia VR, et al. Family participation in patient safety in neonatal units from the nursing perspective. Texto e Contexto Enfermagem. 2017;26 doi: 10.1590/0104-07072017001180016. [DOI] [Google Scholar]
- 20.Follett TL. Nurses’ perceptions of practicing family-centred care in the Neonatal Intensive Care Unit. Library and Archives Canada = Bibliothèque et Archives Canada. 2007 [Google Scholar]
- 21.Heermann J, Wilson M. Nurses’ Experiences Working with Families in an NICU During Implementation of Family-Focused Developmental Care. Neonatal Netw. 2000;19:23–9. doi: 10.1891/0730-0832.19.4.23. [DOI] [PubMed] [Google Scholar]
- 22.World Health Organization . World Health Organization; 2020. Standards for improving the quality of care for small and sick newborns in health facilities.https://iris.who.int/handle/10665/334126 Available. [Google Scholar]


