Qualitative phenomenological pilot study based on the thematic analysis of a focus group with an intentional sample of parents trained in the KMC method who had refused hospital discharge of their babies as proposed by the medical team.

We start from the reflection that the aspects that influence parents’ refusal to discharge their babies from the hospital are mainly anxiety, conflictive relationships with the health care team, problems in accessing information on their children’s health status, lack of family help at home and financial issues to attend subsequent outpatient follow-up visits in the ambulatory KMC program.

This study was conducted with parents who attended at the Hospital Universitario San Ignacio (HUSI), a third-level institution in Bogota, Colombia, that has 30 NCU beds.

The HUSI NCU started the KMC method in 2001 and, since 2006, has 24/7 parental access. Currently, this NCU is considered a center of excellence in the KMC method (15). Between October and November 2015, an intentional sample of four mothers who rejected the hospital discharge of their babies was contacted. All of them accepted to be part of the focus group. In addition, one of the mothers’ husbands was accepted for recruitment, resulting in a total of five participants.

Three researchers conducted the focus group, and one of them was in charge of the logistical aspects. The interview questions were formulated on the basis of the authors' self-reflection on possible aspects that could explain parents' refusal of their children's hospital discharge. The focus group was held on the same day that parents attended a follow-up visit at the KMC ambulatory program for their convenience. Meetings were audio recorded and transcribed verbatim. Transcripts were analyzed along with audio recording to ensure accuracy.

The analysis comprised two cycles. During the first cycle, transcripts were coded individually by each of the authors using Atlas.ti version 7. After two consecutive meetings, a fused coding system was developed by consensus, which included 64 codes grouped into 16-word families.

Through the second cycle, transcribed data was reviewed to extract topics that best established common reasons among parents for refusing discharge. This was accomplished by comparing the content of coding families across participants. When conflicting perceptions were detected, individual participant characteristics or the content of other coding families were used to explain differences. During this process, associations between the topics were established in order to explain aspects influencing parental refusal of hospital discharge.

This study was conducted in accordance with national and international standards for research in human beings (16) and with the canons of Good Clinical Practice in Colombia, Resolution 8430 of 1993 (17). Parents were advised about study objectives and were asked to participate by signing an informed consent form. The ethics and research committee of Pontificia Universidad Javeriana and the HUSI approved the protocol and the informed consent (Act 2014/137).

Reasons for rejecting hospital discharge were grouped in the following 5 themes: low self-efficacy, family support, health care team perceived as the only one trained for care, observation-based learning, and hands-on experience and empowerment. Table 2 presents the configuration and sample citations of the themes that appeared from the analysis.

Table 2 Table 2 Theme structure and sample quotes

Continuación Tabla 2

Continuación Tabla 2

Four out of the five parents stated feeling incompetent to care for their children when physicians were deciding hospital discharge. Two out of the four mothers and the father expressed their fear of making an error and seriously injuring their children.

All parents stated that they experienced strong feelings associated with having a newborn that is seen as different. This perception seemed to be related with feelings of guilt and shame.

In contrast with the authors’ reflexivity, two of the four mothers reported receiving strong support from their families at home. In the case of one of the mothers, the family’s recommendations contradicted those given by the health care team. Two of the four mothers indicated that they tried to remain isolated to prevent their children from becoming infected. In turn, one of the participants stated that social interaction with other family members made her feel judged, which could be related to the decision to isolate herself.

Three of the four mothers stated having received solid assistance from health staff at the NCU and felt thankful for the aid and guidance received. Moreover, one of the four mothers reported that support from health staff gave her a sense of safety and calmness. In addition, in the transcription, parents repeatedly commented that they felt very limited in caring for their babies compared to the care provided by nurses.

Regarding the adaptation phase in the NCU, according to the KMC method protocol (18), parents commented that the training they received consisted mostly in observation of the handling and care of their children by the nurses and educational talks. In their opinion, this strategy is not enough to prepare them for home care. To the question “how do you think this training process could be improved?”, participants replied that it could be improved by having a greater hands-on experience. In other words, they would have preferred to take care of their child during the adaptation phase while receiving feedback from the health care team.

Our results showed that participants who had been at home the longest since hospital discharge, at the time of the focus group (mothers 2 and 4; 28 and 22 days, respectively), recognized time and daily practice as contributors to improving their perception of empowerment. As days passed, participants said that they felt increasingly autonomous in caring for their children. On the other hand, parents who had been at home for less time since discharge at the time of the focus group (mothers 1 and 3; 5 and 7 days, respectively), indicated they felt insufficiently prepared to handle their children.

Based on our observations, we propose the following process leading to rejection of hospital discharge and subsequent gain in confidence, as stated in Figure 1.

Figure 1 Figure 1 The rejection process and subsequent gain in confidence Own elaboration.

According to our findings, parents of premature or LBW babies have low autonomy in the in-hospital care of their newborn(s). The instructions they get, based on observation, fail to empower them in the care of their babies and makes them think that only the medical team is able to do so and, therefore, that it is better for their babies to remain hospitalized. This concept persists despite the medical team telling parents that their baby is fit for discharge and warning them about the risks of prolonged hospitalization and the benefits of continuing the KMC method at home. We believe that these reasons and emotional stress may explain the parents’ refusal to be discharged.

In spite of refusing to leave the hospital, the baby is finally discharged, and parents must take over the care of their child at home. Direct contact with their son and day-to-day experience of caring for the baby at home gradually empower them and generate self-confidence.

Our data suggest that there were no problems for the study participants with family support at home. Three of the four mothers had a stable partner who was supportive, and the single mother reported that she had sufficient help from her sister. Analysis of the data showed that refusal to be discharged from hospital is related to other factors. However, to test this hypothesis, expectations concerning family or network support before discharge would need to be explored, and our study only collected information after discharge.

Regarding social interactions, our results indicated that parents participating in the study had a tendency towards isolation sourcing from two main origins: (a) Fear that their children would be exposed to harmful infectious agents, and (b) feel exposed to the opinion from others, probably because of the perception that their babies are not normal. Sankey and Brennan analyzed the topic of the premature baby seen as "different" by their parents, and showed how this concept supports the belief that, given their fragility, these babies can only be well cared by the medical team (29). The aforementioned aspects may possibly be a barrier that prevents parents from accepting emotional support and achieving the skills to adapt to the KMC method.

Direct and continuous exposure to infant care over time is a key determinant of empowerment. In the focus group, mothers who had spent more than three weeks with the baby at home after hospital discharge, claimed to be more secure and confident in caring for their newborn(s) and associated this confidence with daily exposure to the routines necessary to adopt KP, feeding, diapering, and bathing the baby. Previous studies by Sankey and Brennan (29), de Souza et al. (30), Oswalt et al. (31), and Peyrovi et al. (32) indicate how becoming accustomed to having a premature infant, as well as the acquisition of the ability to care for the infant, progress gradually.

In addition to promoting physical and emotional closeness, another objective of the KMC method is to prepare parents to be able to care for their children at home by themselves (33). The results of our study suggest that autonomy could be achieved more easily by changing the pedagogical strategy; the participants of this focus group pointed out that training received in the NCU, based on observations of care provided by the health care team, was not sufficient. With this type of strategy, the healthcare team is seen more as a provider of knowledge than a facilitator of care. When participants were asked what could be improved in the in-hospital adaptation phase to the KMC method, three of the four mothers proposed changing the teaching method to allow for more practice-based learning, e.g., being allowed to care for their babies themselves while monitored by nurses. There is evidence from Latin American studies highlighting the importance of parental support for infant care during hospitalization in the NCU. In a study involving 24 kangaroo mothers from Brazil, de Souza et al. (30) noted that the inclusion of the family in the NICU care of the infant was essential for adequate post-discharge adjustment. Similar results are found in the study by Granero-Molina et al. (34). These authors conclude that mothers of extremely preterm infants gain greater confidence in their abilities and are better prepared to bring their infant home when they receive information, supervision, and are allowed to participate in the care of their infant in the NICU.

In a review by Bowles et al. (35), again, it is emphasized that early awareness of parents in their role as primary care providers for their babies is required; this is achieved by receiving comprehensive training by the health team and with strategies such as having family rooms in the NCU, allowing active communication with the medical staff even during daily rounds, and, finally, achieving coordination with an outpatient support network.

The thematic analysis obtained through this pilot focus group and the evidence found highlight the importance of using more practical pedagogical approaches to achieve adaptation to the KMC method. Parents should be allowed to care for their babies from the first days of hospitalization in the NCU with the supervision of health staff. This strategy reduces their stress, facilitates bonding, encourages autonomy, and better prepares them to discharge.

The most recognized KMC protocol in Colombia, developed by the Kangaroo Foundation, has a checklist in which parents must be trained in various skills, such as the breastfeeding technique, KP, and oxygen management, if required (33). However, this protocol is not clear about the pedagogical strategy that the health team should use. There is great variability in the way nurses and doctors teach parents; some tend to be more practical and others do not, so it is necessary to include specific recommendations on training that allows parents to quickly acquire skills. These strategies could help empower parents develop individualized discharge plans that acknowledge and address the concerns of the mother, education of the health staff, specially nurses, on how to adopt their role as facilitators rather than performing the care by themselves, and teaching practical methods that increase parents’ empowerment and understanding of their babies’ needs (36–39).

Although this pilot study was conducted seven years ago, the emotional and training problems faced by parents of hospitalized preterm infants are still the same. This is the experience lived in a NCU that has been a pioneer in KMC and, today, is a model in the in-hospital KMC method in Colombia. There are no similar studies in our country that explore the phenomenon of preterm parents’ refusal to be discharged from the hospital. We wish to emphasize the importance of parents’ training in babies’ care from the NCU, a situation that is achieved with a newborn unit open to parents 24/7 and a hands-on teaching from nurses and doctors; these strategies allow parents to be the primary providers of their children’s care for an early and effective hospital discharge.

Limitations of this study include the small number of participants, and the fact that it is a pilot study, which needs verification with other focus groups. Consequently, the results and assumptions should be interpreted with caution. As stated before, future studies should include a control group to allow comparisons between parents who reject and those who accept hospital discharge.