Family perceptions of prematurity, neurodevelopment, and early intervention: a qualitative study

Abstract

Introduction

Given that family involvement is essential for both short- and long-term care of premature infants, it is critical to understand the family's perceptions on prematurity, neurodevelopment, and the need for early intervention.

Objective

To explore family perceptions on prematurity, neurodevelopment, and early intervention.

Methodology

This exploratory, descriptive, and qualitative study involved two focus groups and ten semi-structured interviews with family members of premature infants across three neonatal care settings: the Neonatal Intensive Care Unit (NICU), Kangaroo Care Unit, and Follow-up Clinic. The guiding script contained five questions aimed at understanding family perceptions of prematurity and their care for neurodevelopment, ranging from the support resources available during hospitalization to family involvement in intervention programs. Bardin's Content Analysis was employed for data inference and interpretation.

Results

A limited understanding of prematurity was identified among family members, along with their participation in neurodevelopmental care, highlighting the significance of their role in intervention programs. Families reported feelings of insecurity, particularly in the NICU, indicating a reliance on the care provided by the professional team. The Kangaroo Care Unit proved to be ineffective in fostering family autonomy in post-discharge care, as comments from families in outpatient follow-up suggested a lack of understanding regarding the need for continued care for the development of premature infants.

Conclusion

The NICU environment appears to hinder parental engagement, leaving parents feeling insecure. The Kangaroo Care Unit was not fully effective in transitioning families to the home environment. Parents in outpatient follow-up exhibited limited understanding of prematurity-related issues.

Introduction

The birth of a child is the most expected moment of pregnancy, generating great expectations for parents and family members. However, when faced with premature birth, this moment often brings anguish and stress to the family [1]. Prematurity is projected to increase until 2035 [2] and is strongly associated with neurodevelopmental issues [3]. Compared to full-term infants, preterm infants (PTI) exhibit poorer neurodevelopment outcomes [4], including motor difficulties [5, 6], adaptive challenges [7], cognitive delays [8], and language impairments [9]. Consequently, early intervention is crucial to take advantage of the neurological development window in the early stages of life [4, 10].

In addition to developmental outcomes, neonatal intensive care unit (NICU) hospitalization—often required for preterm births—exposes the infant to a stressful environment and separates them from their family. The need for intensive care and the use of assistive resources often limits parental interaction for an indefinite period [11, 12]. Faced with the contrast between the expectation of having a healthy child and the reality of intensive treatment, feelings such as fear, anguish, and distress become prevalent among family members, particularly mothers. These emotions can hinder the formation of a parent–child bond, thereby impacting parental empowerment and the ability to provide necessary care [13, 15].

However, studies show that once parents overcome the initial shock and become involved in the care and development of their PTI, they experience lower levels of stress and anxiety, stronger interaction, and increased confidence in continuing care after hospital discharge [14]. Similarly, PTI, whose parents participated in their care experienced short-term benefits such as earlier discharge, stronger parent–child bonding, longer episodes of deep sleep, improved pain relief, reduced agitation, and decreased use of analgesics [16, 17]In the long term, positive impacts on physical, behavioral, and neurological development were observed, including cognitive improvements [16, 17].

Given that family involvement is essential for both short- and long-term care of these infants, it is critical to understand the family's perceptions on prematurity, neurodevelopment, and the need for early intervention. Therefore, this study aimed to explore the perceptions of family members of premature infants regarding prematurity, neurodevelopment, and the need for early intervention, from hospitalization to post-discharge outpatient follow-up.

Methods

This exploratory, descriptive, and qualitative study utilized focus groups and semi-structured interviews [18] to gather data and identify family perceptions on prematurity, neurodevelopment, and early intervention. A guiding script was developed, specific for this study, with five broad questions to capture the family’s perceptions on prematurity and the necessary care, from available support resources to family involvement in short- and long-term neurodevelopment (Table 1 and Supplementary material). Following the Manual of Excellence for Focus Group Research [19], the guiding script was designed to delve into the topic, with each focus group consisting of seven participants from each care unit: four invited family members of PTI, one main researcher, and two observing researcher [20].

Table 1.

Guiding script for focus groups and interviews

Who is the premature infant?

Purpose: To gather information on the understanding of prematurity

What is the Neonatal Intensive Care Unit like?

Purpose: To gather information on the perception of the physical environment (structure, resources, appearance) and subjective aspects (emotions involved)

When you look at the care your baby receives today, what do you see?

Purpose: To gather information on the understanding of neonatal care

How do you care for your baby?

Purpose: To gather information on family involvement in the care and development of the baby

Is the care your baby receives today sufficient for what you believe is necessary for their development?

Purpose: To gather information on the need for developmental care of the premature infant

Study site (Care units)

The focus groups and interviews were conducted in three neonatal care units of a high-risk maternity hospital that follows the Kangaroo Method: NICU, Kangaroo Care Unit, and Follow-up Clinic. A focus group and two interviews were planned for each neonatal care unit.

Kangaroo Method is a Brazilian National Public Policy. This method extends beyond skin-to-skin contact to represent a comprehensive shift in neonatal care practices, focusing on humanized, family-centered support. In addition to clinical benefits, the method aims to empower women, foster emotional bonding, and promote equitable, respectful care practices. It is structured in three stages:

• First Stage: It starts in high-risk prenatal care, and after birth, the infant remains in the Neonatal Intensive Care Unit (NICU), while the mother is encouraged to take an active role in the care process.

• Second Stage: The infant is transferred to the “Kangaroo Unit,” where all families participate in Kangaroo Mother Care. This stage promotes continuous skin-to-skin contact, primarily with the mother, in a setting that allows joint hospitalization.

• Third Stage: After hospital discharge, the infant receives outpatient follow-up care, emphasizing strengthening emotional bonds and healthy development.

Participants and study sample

The study included 18 family members of PTI, aged 18 years or older, six in each neonatal care unit. The primary caregivers of PTI receiving care at the maternity hospital were selected by convenience and included after they agreed to participate in the study. We planned to exclude family members of PTI who did not understand the invitation to participate in the study. However, all those invited understood and agreed to participate. To ensure a broad view of prematurity, no distinction was made between the participating caregivers’ levels of prematurity and neonatal clinical conditions.

Data collection procedures

Meetings took place in the three neonatal care units. The narratives generated in the focus groups and interviews were recorded for transcription and later analysis.

The main researcher conducted the focus groups, facilitating interaction with participants, while the observing researchers took free-form narrative notes of subjective phenomena observed during the group sessions.

Data analysis

The data were prepared by fully transcribing the recorded narratives, with participant names and identifying characteristics concealed. The method used for content analysis was Bardin’s Thematic Content Analysis [21], which was conducted in three stages: (1) pre-analysis or material organization, (2) coding or material exploration, and (3) result processing through inference and interpretation.

Data coding was performed using the transcribed narratives to capture the essence of the linguistic data identified in the focus groups and interviews. The first coding phase was conducted through Hypothesis Coding, based on the five questions from the guiding script as context units, with citations from the responses used as registration units. The second coding phase followed standard Thematic Coding to develop explanatory categories and make inferences based on the first-phase coding [22]. After coding, the data were tabulated and processed for inference and interpretation. The analytical notes produced by the observing researchers helped support the data interpretation process.

Results

Two focus groups were conducted (NICU and Kangaroo Unit) and 10 interviews (NICU = 2, Kangaroo Unit = 2, Follow-up Clinic = 6). A focus group was not conducted in the follow-up clinic due to the refusal of the family to participate. The invited families only agreed to participate in the interviews. Using Hypothesis Coding based on the five questions from the guiding script, the registration units were organized into two categories: emotional expression and thematic understanding. Tables 2 and 3 present the participants' narrative quotes categorized into emotional expression and thematic understanding for each of the five questions from the guiding script. The inferences and interpretations are detailed below.

Table 2.

Participants' narrative quotes: thematic understanding

Who is a premature baby?
NICU	"fragile baby" "delicate""really needs a lot of care""born before the right time"
Kangaroo Unit	"the little baby who doesn't even open his eyes, but it's totally different" "the little baby who needs a lot of care, a lot of attention" "the little baby who wasn't ready yet, so to speak, and came early" "he didn't develop what he was supposed to in the womb, so he'll have to develop outside" "we realize he needs a lot of attention" "they are very fragile" "he is very tiny" "there are many details too, you know, like with the little lungs and everything, the development too" "we spent a lot of time in the hospital for him to develop what he didn’t in the womb" "he's not breathing well" "his lungs aren't 100%" "he’ll need help to breathe" "the child is very sensitive" "this sensitivity issue regarding bacteria" "all of a sudden, she came out, wasn't fully formed, didn’t know all the movements properly" "came before the time" "will still develop a lot outside the womb, outside our uterus" "wasn’t ready for birth yet" "they are very soft" "she's sensitive" "they are very small" "born before right time" "won’t have many visitors"
Follow up	"very tiny" "afraid she won’t be born healthy, won’t be born well" "he's a normal baby" "he’s not different from others" "the care is different" "tiny" "was going to be born with respiratory failure" "born small" "needs to go to the ICU" "innocent" "defenseless" "he didn’t have enough time to get stronger and develop better" "incomplete in many ways" "more care" "you have to be very careful" "born early"
What is the Neonatal Intensive Care Unit like?
NICU	"I saw him intubated there" "that intubation, and with that little feeding tube, all full of pricks" "so many machines on those little ones" "she was going to stay on the tube" "I never imagined myself inside an ICU" "the space is very, very nice" "the team too, the equipment, right? very advanced to provide care" "you immediately think of something bad" "it reminds you of the care needed" "it's a calm environment" "with excellent professionals" "I found it normal" "the last resource" "very different from what I was told"
Kangaroo Unit	"there he was being very well taken care of, very well taken care of" "I didn’t like going in there" "you see a lot inside the ICU" "he had full assistance all the time, the nurses are always there watching him" "when you go in and see the condition of other babies, you think –oh, my baby isn’t as bad as the others–" "some are intubated" "there you see the reality and intensity of prematurity" "it's very hard to even touch their little hands" "I wasn’t in shock" "at no point did I feel desperate" "very complex" "anything can happen at any moment" "it's a challenging place" "a relief, but at the same time fear and anxiety" "a place where it's very easy to get an infection" "I thought I would never go through that"
Follow up	"I thought he was in really bad shape" "the tube" "little chance of surviving" "little hope for life" "he wouldn’t have a chance to survive" "such a huge fight" "babies who are really in bad condition" "fear of leaving there without my child" "we can’t touch him" "we see him in that little box there [about the incubator]" "then they ask us to change his diaper, to have that experience" "I had only seen that on TV" "it was all, all new" "the ICU already gives you a scare" "you witness deaths" "it was a very difficult moment in my life" "it was very hard" "I had never seen that before"
When you look at the care your baby is receiving today, what do you see?
NICU	"They take very good care, I have nothing to complain about" "it's different from my own care" "when they talk to him, it's like I’m the one talking, you know?" "I think it's so beautiful when I come in and see them talking to him" "the way they care for him is just that special way" "they know exactly what to do" "I really have nothing to complain about" "they talk to me properly" "they explain things" "I have no complaints" "it’s been great" "they're taking good care of him" "really, really good" "it’s such dedicated care" "she's being very well taken care of" "excellent professionals" "very important for her development" "really good, he’s being well cared for by everyone"
Kangaroo Unit	"here, on time, the staff comes to give the medication" "sometimes we're sleeping, and they wake us up to give the feed" "the biggest challenge will be when we're home" "they provide full assistance" "if something goes wrong, if there's a problem, everyone rushes over and takes good care of him" "for any little thing, we go and ask the nurses for help" "every day, she’s being helped by someone" "someone comes and helps her start moving her head, listening, calling her, helping her grasp things" "it’s the kind of care as if they were caring for their own child" "the care here is excellent" "it’s a conversation, a connection, there’s that feeling" "they help a lot" "whenever we have a question, they answer it" "I see good things, improvements" "I feel confident"
Follow up	"they give him all the love in the world" every bit of care" "the patience they had" "always with hygiene, always wearing gloves" "to avoid the risk of catching any bacteria from outside" "they took really good care of him" "he was always very well taken care of there" "they care very well" "the greatest care, the greatest love" "all the care and dedication to give them life again" "love, gratitude" "he’s getting follow-ups with the pediatrician [...] with the physical therapist too" "I felt the attention there was lacking""that extra attention for them just wasn’t there" "very good""they were very precise" "they guided us well" "they also keep us very attentive, very alert" "I liked it here a lot" "I just loved the care" "I’m very grateful"
How do you take care of your baby?
NICU	"I go see him there every day." "I can’t watch them do everything to her." "I’m feeding him." "I’m learning." "we’re going there." "talking to them." "holding his little hand." "it's like a fear." "I’ll carry this fear for the rest of my life." "he’ll need double the care." "we have to protect them more." "seeing that they are safer." "I haven’t been able to hold him yet." "I do everything for her." "I’m always stroking her." "doing kangaroo care." "as much time as I can be here with her." "helping the professionals too." "it's still not enough." "I wish I could spend more time with him, but I can’t right now." "I’m taking good care of him." "with love and care."
Kangaroo Unit	"it was very hard for me to hold her." "after you’re there, caring, showing affection, always by their side." "insecurity is always part of the beginning." "you start learning." "you start feeling the courage to care for and be with him all the time." "I’m really struggling with fear." "regarding feeding, regarding the feeding tube [about feeling fear]." "this part of feeding has been very complicated." "it’s really hard." "I’m scared all the time." "you start getting used to it, you start enjoying taking care of him." "you become more careful. every day, you’re more careful." "you start paying attention to his signs." "I already know how to calm him down." "now I feel more secure." "I love breastfeeding him." "we keep learning." "I’m already feeling confident." "I was afraid to hold him before coming here." "I just don’t trust myself to give him a bath." "I had never fed him like I’m doing this week." "I’ll only bathe and diaper change him at home when we’re settled." "you learn more every day." "it’s a lot of care." "it’s huge care, and every day we keep learning more." "we never stop seeking to understand and learn about it." "it’s a huge responsibility." "I was scared to touch her, afraid I might break her." "I was afraid to put my finger on her and hurt her." "I give my all." "we’re all doing everything they’re teaching us." "everyone here is following what they teach." "we’re just trying to level up." "my care is so intense that I’ll only allow visits at home after a year." "I’m really afraid of having visitors at home because, you know, everything brings bacteria." "the care we have here, we’ll have to keep it up outside." "we have to be just as careful." "I said I only want visitors at home after a year." "you feel anxious and scared." "I’ve never handled a baby before, let alone a premature one." "I’m trying to do my best." "asking all my questions [with the team]." "trying to be very attentive to her development." "they give me tips and advice, and I follow them." "kangaroo care." "no visitors at home."
Follow up	"that fear, that agony" "I keep looking to see if he's really breathing" "the care is doubled" "all the time, no sleep" "I do everything I can for my son" "so he doesn’t suffer" "my fear is big""you have to be so careful" "careful about infections and things like that" "I was so scared to hold him, to change [clothes/diaper]him" "I spent most of my time there" "at home, I have to do physiotherapy with him" "I took care of him normally, like I would with any baby..." "I would hold him in the ICU every day" "I did kangaroo care" "with a lot of fear" "afraid of squeezing too hard" "afraid of holding him too loosely and dropping him" "giving him a bath" "changing his diaper" "feeding him" "it’s a fear that you’re afraid it won’t work out" "I was afraid of doing it" "I didn’t have much confidence" "I was hesitant to do it" "I did everything with a lot of care and attention" "I couldn’t hold him much" "I wasn’t too scared to take care of him" "I took care of him properly" "doing kangaroo care, they say it helps with weight gain, for him to feel us" "I didn’t really know how to take care of him, honestly, I was alone" "I had to learn there" "I didn’t even know how to change a diaper" "I had to learn" "I did kangaroo care" "I bathed him" "I changed [about clothes/diaper] him"
Is the care he receives today sufficient for what you believe is needed for his development?
NICU	"as soon as he leaves here [...] he’ll need a bit more care." "mine will be monitored here." "I'm hoping mine won't, just so it only needs home care." "I think so. I think we can do a lot more." "by being very careful." "yes, absolutely, very important." "I believe so." "we need to be more careful."
Kangaroo Unit	"the more we receive, the more we know how to apply care and focus on development, it's really good." "but for the rest of their life, if we follow the rules properly here, I believe it will be." "for me, I think so." "I think so too, because they are very careful." "I don't think so, because what we're doing now is just for the stage they're at now; in the future, it will be something different." "what's enough is for now, for this current stage." "later, it will be other things, new things." "they’ll start to change and learn new things." "they will develop and strengthen for the next stages." "I believe it’s been essential." "I think it's been good, because I’m already seeing her progress."
Follow up	"I believe so." "they know how to take care of him—maybe even better than I do, I think." "no, the care might need to improve a bit more over time." "everything has a beginning and an end." "it’s not like this forever." "he’s developing more because of the work I'm doing at home." "honestly, I can't really say [...] I believe he will develop mentally and physically." "yes, I’m taking good care of him, lots of care." "I believe he’s doing well." "she needed and still needs development support, like physical therapy." "her doctor still tells us to do kangaroo care with him at home. He’s still on medication." "yes, we’re handling all the care." "yes, physical therapy, pediatrician, and also the neurologist."

Table 3.

Participants' narrative quotes: emotional expression

Who is a premature baby?
NICU	All the participants cried in response to this question.
Kangaroo Unit	"prematurity, the shock that brings that fear.
Follow up	"the fear was great."
What is the Neonatal Intensive Care Unit like?
NICU	"I panicked." "I was scared." "I felt sad." "It was hard." "It was somewhat difficult." "I found it difficult."
Kangaroo Unit	"so much fear." "it was horrible." "it was really hard to see your baby there knowing he could be with you." "I was very afraid." "I cried a lot." "I was worried about him staying with me." "the woman would go in there crying and crying." "anyone would have a broken heart in there." "it breaks your heart to see other little babies, to see mothers suffering." "it’s really bad." "it’s frightening." "the feeling is very sad." "it’s really bad and it’s scary." "oh, it’s very bad." "you feel lost there. you have to be strong." "I was calm." "I felt anxious." "I was very afraid." "I felt anxious." "fear."
Follow up	"I went into shock." "fear and insecurity." "it was terrifying." "extraordinary." "there was crying every day, desperate."
When you look at the care your baby is receiving today, what do you see?
NICU	**
Kangaroo Unit	"the biggest fear is when he leaves here [about discharge]."
Follow up	**
How do you take care of your baby?
NICU	**
Kangaroo Unit	"but it’s a very good feeling." "it was a very good feeling." "it's really amazing." "it's very good." "I am very afraid." "sometimes I feel anxious, stressed, nervous." "oh, it's really good. I love it, I love it so much."
Follow up	**
Is the care he receives today sufficient for what you believe is needed for his development?
NICU	**
Kangaroo Unit	**
Follow up	**
** = have no emotional expressions

Who is the PTI?

Prematurity emerged as a sensitive topic for all participating family members, especially for those whose children were in intensive care, as evidenced by the emotions expressed (Table 3). It was observed that their understanding of prematurity grows as they progress through the neonatal units. However, their understanding is mainly limited to the baby's appearance and the care provided by the healthcare team. Regarding development, family members’ knowledge is mostly restricted to respiratory vulnerability. It is noteworthy that outpatient caregivers displayed a dichotomous perception of prematurity, with some narratives describing the baby as "a normal baby" while others stated, "he's not different from the others."

What is the NICU like?

The intensive care environment is perceived as frightening and challenging, evoking feelings of sadness and fear in all family members (Table 3). The NICU is commonly understood as a "last resort" hospital environment, a concept reinforced by the PTI's appearance and the various life-support procedures and equipment inherent to this type of care. While some family members recognize the NICU as a specialized care environment with competent professionals to look after their children, others find it difficult to stay or remain in the environment, and consequently, with their children.

When you look at the care your baby receives today, what do you see?

All family members expressed appreciation for the care provided by the professional team, regardless of the neonatal care unit in which they were located. However, families in the Kangaroo Unit felt vulnerable as hospital discharge approached, seeing their children's care as dependent on the assistance of the professional team. For instance, they mentioned: "the biggest challenge will be when we're at home," "there's full assistance," "if something happens, everyone rushes to help and take good care," "for anything, we just go and ask the team for advice."

How do you care for your baby?

Family involvement in caring for the baby was observed across all three care units. However, each unit presented its particularities. Families in the NICU were divided between those who participated in care tasks that were permissible given the infant's clinical condition—such as simply being present—and those who felt insecure about participating in any form of care. While family members enjoyed participating in their children's care routines in the Kangaroo Unit, they also felt insecure without the professional team's presence. Although insecurity persisted, families demonstrated that they did what was within their knowledge after discharge. It is worth noting that only one participant mentioned a specific developmental care task: "My care at home is doing physical therapy with him."

Is the care your baby receives today sufficient for what you believe is necessary for their development?

Family members had differing views on long-term care, regardless of the neonatal unit their child was in. A progression of parental autonomy was observed, with the Kangaroo Unit being the central unit for learning the necessary care for their children. Families believed that the training provided there was sufficient if properly learned. However, it is important to note that the concept of ongoing neurodevelopment and the need for support was not completely understood by family members, particularly those whose children were in the follow-up clinic. Some of these families believe the hospital discharge means the end of care as expressed in the saying "Everything has a beginning and an end.", "It’s not like this forever.", "Honestly, I can't really say […] I believe he will develop mentally and physically.", "I believe he’s doing well.". They also believe love and affection are enough: "he’s developing more because of the work I'm doing at home.", "Yes, I’m taking good care of him, lots of care.", "Yes, we’re handling all the care."

Discussion

To the best of the authors' knowledge, this is the first Brazilian study to investigate the perceptions of PTI's family members regarding prematurity and developmental issues. It covers the family's involvement in developmental care from neonatal hospitalization until after discharge. This study suggests a progression in family autonomy in care participation and a reduction in emotional vulnerability related to prematurity based on the caregivers' statements in the different care units (from high to low complexity). Despite their growing ability to care for their baby, these parents remained unaware of the neurodevelopmental risks and the need for post-discharge follow-up. The results revealed a lack of understanding among parents about neurodevelopment and the need for continued care and follow-up post-hospitalization. These findings agree with the study by Lyne et al. [23], in which the authors explored the perceptions and experiences of caregivers of PTI during the first week after hospital discharge. While caregivers were performing the necessary neonatal care, the data showed that they experienced insecurity, dependence on the healthcare team, fear, and a lack of support at home.

As also reported by Silva et al. [24], NICU admission caused feelings of fear, anguish, sadness, and insecurity in mothers. This may be linked to a lack of understanding about the NICU environment, leading families to associate the infant's recovery with the setting and the technological apparatus involved in their care. The NICU environment seems to hinder the development of the parental role, as the care of the newborn is effectively outsourced to the healthcare team [25]. Therefore, providing parents with autonomy in caring for their newborns in this environment, as a way to foster support and reduce their distress through effective and coordinated strategies, should always be a goal for the healthcare team. Additionally, the separation process between the mother-infant dyad disrupts the formation of the maternal bond, resulting in mixed emotions of joy for the child's survival and distress and sadness due to the separation inherent to intensive care [26].

Corroborating the findings of this study, Gusmão et al. [27] highlight the emergence of ambivalent feelings and emotions among mothers during the NICU hospitalization period. Despite feelings of fear, apprehension, anguish, anxiety, and loss, emotions of joy and happiness also arise—especially regarding the birth and life of their child or when receiving news of the baby’s improvement, which creates expectations for discharge. For example:

“It’s a relief, but at the same time, a fear, an anxiety” (Table 2),

“I see good things, improvements” (Table 2),

“I feel confident” (Table 2).

However, even though emotional vulnerability decreases as the neonate transitions to lower-complexity care units, the understanding of the PTI's developmental care needs does not progress. This suggests that the clinical improvement of the neonate tends to minimize the perceived need for continued care, particularly regarding neurodevelopment. These types of care are crucial, as the stimuli provided daily significantly impact the child's development, with the home environment being a potential enhancer of this progress [28]. Additionally, families tend to limit their understanding of prematurity to the fragility and immaturity of the respiratory system, for example:

“The lungs didn’t develop” (Table 2),

“Help with breathing” (Table 2).

They also showed greater concern for this system when asked about long-term care. This limited understanding may be linked to their experiences in the NICU. Lyne et al. [23] found that caregivers of PTI reported having varying levels of understanding about their baby’s care needs. However, when asked about specific aspects of care, they expressed the need for further instruction, especially regarding home care after discharge. These findings suggest a gap between the understanding parents acquire and the information provided by the healthcare team.

Additionally, the emotional expressions and thematic understanding of prematurity by the families of those admitted to the NICU suggest that this topic was either not addressed during the gestational period or not effectively covered to prepare the family emotionally and psychologically for the possibility of premature birth during the first stage. This occurs even though the maternity hospital in question is a reference for high-risk pregnancies and adopts the Kangaroo Method for neonatal care, which is a biopsychosocial approach that begins during the monitoring of high-risk pregnancies [29]. This issue may be linked to the difficulty of implementing the Kangaroo Method in healthcare services.

According to Luz et al. [30] and Santana et al. [31], the main challenges in implementing the method are the resistance from the healthcare team due to a lack of knowledge on the subject and insecurity in applying the method. This makes the professionals uncomfortable with changing their practice, opting instead to remain in their "comfort zone." Moreover, environmental factors also impose barriers to the effective implementation of the method, such as inadequate physical infrastructure and a lack of necessary human and material resources.

Within the Kangaroo Method structure, the mother remains with her child continuously in the Kangaroo Unit. To promote the confidence in the parents and ensure greater maternal autonomy and independence in caregiving, the healthcare team should guide and assist the mother in tasks such as breastfeeding, hygiene (bathing, diaper changes), and positioning (either kangaroo position or crib). The team should also encourage the father or another support figure to participate in these activities, assess and support the mother's needs, and provide educational activities, respecting the mother's availability. A multidisciplinary team might also be available to offer continuous support to the parents and routine care for the newborns [32]. In this regard, the Kangaroo Unit plays a central role in empowering families to understand the complex health condition of the PTI. However, based on the findings of this study, its effectiveness in helping parents understand the long-term care needs of the PTI was limited. Families in outpatient follow-up showed a dichotomous understanding of the care required for the development of PTI and, at times, of prematurity itself.

It is important to note that the maternity hospital in the study is located in a low- to middle-income region, where education levels are generally low, and 67% of the population enrolled in public institutions are at the elementary school level [33]. This factor may contribute to the limited understanding of the topic. Low maternal education has been consistently associated with adverse developmental outcomes in PTI. This reality corroborates with studies demonstrating that infants born to mothers with low educational levels are at greater risk for cognitive impairment, cerebral palsy, behavioral abnormalities, and an increased need for therapeutic interventions [34–36].

This study is innovative in considering the perceptions of the families of PTI when discussing their involvement in neurodevelopmental care. While the literature highlights the necessity of family participation in early intervention to promote the development of PTI [37, 38], there are no studies investigating the family’s perceptions—particularly those of the primary caregivers—regarding prematurity, the neurodevelopment of PTI, and the need for intervention after hospital discharge. Additionally, this study has significant implications for clinical practice.

First, it underscores the need for psychosocial and emotional support for families, especially during the early stages following a premature birth. Second, it demonstrates that health education for families must go together with professional specialization and humanization across all neonatal units, emphasizing educating families about the risk of neurodevelopmental disorders and encouraging their participation. Third, institutions that implement the Kangaroo Method should enhance their assistance during the first stage of care, focusing on high-risk pregnant women and NICU stays, to strengthen understanding of prematurity. The Kangaroo Unit should be positioned as a key resource for promoting family autonomy and empowerment as they transition from hospital to home and outpatient care, including neurodevelopmental-related care.

This study also presents some limitations. A focus group was not conducted in the follow-up clinic due to the refusal of families to participate, the invited families only agreed to participate in the interviews. Which meant that the methodological design of focus groups and interviews in all three care units was not fully implemented. As family members in the outpatient setting displayed a dichotomous understanding of neurodevelopmental care after hospital discharge, this may have influenced their decision not to participate in the focus group, whose guiding theme was prematurity. The study was conducted in a low- to middle-income region, with a predominantly elementary education level, which may be a specific characteristic of this study. Therefore, caution should be exercised when generalizing the results to populations with different characteristics. We didn't explore data about families' stressor factors as those related to breastfeeding, length of stay, and neonate clinical conditions. Considering that parental stress can influence the understanding and emotions of families, this fact is also a limitation of our study.

Future studies could explore this topic through a qualitative study focused on healthcare professionals, investigating their perceptions of prematurity, neurodevelopment, and early intervention in neonatal care units, to identify potential discrepancies between the knowledge conveyed by the clinical team and that retained by the families of preterm infants. Subsequently, a prospective study could evaluate a multi-component intervention to enhance parents’ understanding of ongoing developmental care for preterm and high-risk term infants during the transition from the neonatal unit to home. Additionally, studies could investigate the impact of health education on prematurity for high-risk pregnant women, focusing on psycho-emotional characteristics and their involvement in the care of PTI. Family empowerment interventions and hospital-to-home transition programs may contribute to greater family involvement in the neurodevelopmental care of PTI in both the short and long term. Furthermore, although it is recommended that focus groups be conducted with a small number of participants, the data may not fully reflect the experience of families in the three units. To ensure that the data can be generalized, we recommend that future studies conduct more groups to reach saturation of the topic through the participation of family members cared for in each unit.

Conclusion

Family members’ perceptions of the care provided highlighted their fears, beliefs, learning experiences, and bonding with the newborn. Based on these perceptions, the NICU environment seems to hinder parental engagement, making it difficult for families to care for their newborns and contributing to feelings of insecurity. The Kangaroo Unit did not prove to be entirely effective in preparing families for the necessary care during the transition to the home environment, particularly regarding the need for neurodevelopmental care after hospital discharge. This issue was evident in the outpatient setting, where family members demonstrated a lack of awareness about the need for ongoing developmental follow-up for their children. Therefore, it is clear that parents have a limited understanding of the need for ongoing developmental care related to prematurity.

Abbreviations

PTI

Preterm infants

NICU

Neonatal intensive care unit

Authors’ contributions

NFS designed the study, led the focus groups and interviews, coded the data, and wrote the manuscript. FSSJ participated in the observation of focus groups and interviews, transcribed the narratives, organized the coding process, and contributed to the manuscript writing. BOS participated in the observation of the focus groups and interviews, transcribed the narratives, and organized the data coding. RCS was responsible for data analysis through inferences and interpretation. HLOL was responsible for data analysis through inferences and interpretation. CDLA oversaw the overall coordination of the research, reviewed the study design, and revised the manuscript. SAP oversaw the overall coordination of the research, reviewed the study design, and revised the manuscript. All researchers approved the final version of the manuscript.

Funding

This study was supported by the Coordination of Superior Level Staff Improvement, (CAPES) Grant/Award Number: Code 001 and National Council for Scientific and Technological Development (CNPq - Brazil), Grant Number: 441583/2023-7].

Data availability

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

This study was conducted in compliance with the principles of the Helsinki Declaration, and was approved by the Federal University of Rio Grande do Norte Ethics and Research Committee (No. 5.631.550). All participants signed the Free and Informed Consent Form, based on Resolution No. 466 of December 12, 2012, of the National Health Council.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.