STRATEGIES FOR PROMOTING FAMILY-CENTERED CARE IN NEONATAL INTENSIVE CARE UNITSABSTRACT
Objective: to identify strategies for promoting family-centered care in neonatal intensive care units.
Method: An integrative review conducted in November 2022 across four databases, including primary studies in Portuguese, Spanish, or English, on strategies implemented in neonatal units for promoting family-centered care, totaling 63 publications.
Results: the identified strategies include educational support, parental involvement in care and decision-making, information sharing, private/family rooms, parent-to-parent support, logistical support, skin-to-skin contact, psychosocial support, unrestricted parental access, visits, and music therapy.
Conclusion: these strategies may enable the implementation of family-centered care in Brazilian neonatal intensive care units. Further studies are suggested to evaluate the implementation and impact of these strategies in clinical practice.
DESCRIPTORS:
Family; Neonatal intensive care units; Nursing; Children's health; Nursing care
RESUMO
Objetivo: identificar estratégias para promoção do cuidado centrado na família em unidade de terapia intensiva neonatal.
Método: revisão integrativa desenvolvida em novembro de 2022 em quatro bases de dados, incluindo estudos primários, nos idiomas português, espanhol ou inglês, acerca de estratégias implementadas em unidades neonatais para promoção do cuidado centrado na família, totalizando 63 publicações.
Resultados: foram identificadas as estratégias: suporte educacional, participação dos pais nos cuidados e nas tomadas de decisão, compartilhamento de informações, quartos privativos/familiares, apoio pais para pais, suporte logístico, contato pele a pele, suporte psicossocial, acesso ilimitado dos pais, visitas e musicoterapia.
Conclusão: essas estratégias podem possibilitar a implementação do cuidado centrado na família em unidades de terapia intensiva neonatais brasileiras. Sugere-se a realização de estudos a fim de avaliar a implementação e o impacto destas na prática clínica.
DESCRITORES:
Família; Unidades de terapia intensiva neonatal; Enfermagem; Saúde da criança; Cuidados de enfermagem
RESUMEN
Objetivo: identificar estrategias para promover la atención centrada en la familia en una unidad de cuidados intensivos neonatales.
Método: revisión integradora desarrollada en noviembre de 2022 en cuatro bases de datos, incluyendo estudios primarios, en portugués, español o inglés, sobre estrategias implementadas en unidades neonatales para promover los cuidados centrados en la familia, con un total de 63 publicaciones.
Resultados: se identificaron estrategias: apoyo educativo, participación de los padres en el cuidado y en la toma de decisiones, intercambio de información, salas privadas/familiares, apoyo de padres a padres, apoyo logístico, contacto piel a piel, apoyo psicosocial, acceso ilimitado de los padres. visitas y musicoterapia.
Conclusión: estas estrategias pueden posibilitar la implementación de cuidados centrados en la familia en las unidades de cuidados intensivos neonatales brasileñas. Se sugiere realizar estudios para evaluar su implementación e impacto en la práctica clínica.
DESCRIPTORES:
Família; Unidades de cuidados intensivos neonatales; Enfermería; Salud del niño; Cuidados de enfermería
INTRODUCTION
Historically, parental visits to pediatric units were restricted. In Brazil, only at the end of the 1970s was the presence of the family in the hospital permitted1. Subsequently, in 1990, with the enactment of the Child and Adolescent Statute (ECA), the continuous presence of a parent or guardian during child or adolescent hospitalization was regulated2.
In intensive care units, parental inclusion is even more recent. It is known that prematurity remains the main cause of hospitalization in Neonatal Intensive Care Units (NICU)3, and due to its high rates, many parents experience the hospitalization of a child in these units immediately after birth. Studies indicate that this experience is stressful for parents4-5.
There are many factors that can trigger stress in parents in the neonatal intensive care environment. However, the most stressful aspect is the alteration of the parental role, i.e., the role of father/mother6, which refers to the inability felt by not being able to assume their parental duties due to their child's hospitalization4.
To mitigate this impact, several strategies can be employed, among which Family-Centered Care (FCC) is mentioned. FCC emerged from the belief that the family influences and is influenced by its members, defined as an approach for planning, delivering, and evaluating healthcare, based on mutually beneficial partnerships between patients, families, and professionals7.
In neonatal care, according to FCC, nursing professionals must care for the newborn and also attend to the care needs of their family, considering it as inseparable from the newborn's life. It incorporates concepts such as unrestricted entry, respect, information, choice, flexible care, autonomy of those involved, collaboration, and support across different services8.
Thus, considering the importance of FCC for the family and newborn, it was questioned which strategies have been developed for promoting family-centered care in neonatal intensive care? The objective was to identify strategies for promoting family-centered care in neonatal intensive care units.
METHOD
This is an integrative literature review developed through six steps: a) formulation of the review question, b) sampling, c) data extraction, d) critical appraisal, e) interpretation of the results, and f) presentation of the review9. The review question was: what are the strategies for promoting family-centered care developed in neonatal intensive care units?
To establish the sampling, the inclusion criteria were: primary studies, in Portuguese, Spanish, or English, addressing strategies implemented to promote FCC in NICU. And the exclusion criteria: studies with interventions directed at promoting child development, professional training, and promotion of FCC during the Covid-19 pandemic and in palliative care. No temporal cut-off was pre-established.
For the selection of Medical Subject Headings (MeSH) and Health Sciences Descriptors (DECs), mapping of descriptors/keywords from articles about FCC in NICU and from words used in titles and abstracts indicating the theme was developed to enhance document retrieval in databases. The search strategy was composed using the DECs/words [family-centered care] AND [neonatal intensive care unit OR NICU], and MeSH/keywords [family-centered care OR family-centered care] AND [NICU OR neonatal intensive care OR neonatal ICU], with combinations adjusted for each database.
The search was conducted in November 2022 in the databases Latin American and Caribbean Health Sciences Literature (LILACS), Medical Literature Analysis and Retrieval System Online (MEDLINE), National Library of Medicine National Institutes of Health (PubMed), and Web of Science (WoS). The identification resulted in 731 productions. Results from the employed search strategy were imported to the reference manager EndNote Web. A folder was created with all identified articles, after which filtering for duplicate studies was conducted. Additionally, manual filtering was performed, as the reference manager did not recognize duplicates when the study entry was incomplete, i.e., without title, year, and first author.
The selection of studies was carried out by reading titles and abstracts, by two reviewers independently, with subsequent consensus meetings and disagreements sent to the third reviewer. Publications in which the inclusion criteria were not clearly articulated in the titles and abstracts were read in full. Subsequently, eligible studies were read in full, with 63 publications included in the analysis corpus. Figure 1 presents the flowchart of the process for identification, selection, eligibility, and inclusion of articles in the review adapted from the PRISMA flowchart:
Flowchart of the identification, selection, eligibility, and inclusion process in the integrative review. Brazil, 2022.
Data extraction from each included article was recorded using a tool designed for this study, including the following details: reference, year, study type, country of origin, participants, objective, strategy used for promoting FCC, and evidence level. The choice of methodological approach and research design was based on the descriptions provided by the authors of the studies. In cases where information was not described, concepts from nursing researchers on scientific methodology were adopted10. The method analysis supported the classification of the evidence level (EL) of the studies, following the Oxford Centre for Evidence-Based Medicine (2011), which proposes five hierarchical levels: level 1, systematic review of randomized clinical trials, randomized clinical trials with a narrow confidence interval or all or none case series; level 2, systematic review of cohort studies, individual cohort studies, low-quality randomized controlled trials, outcome research, or ecological studies; level 3, systematic review of case-control studies or individual case-control studies; level 4, case series or low-quality cohort and case-control studies; level 5, expert opinion. Studies classified as level 1 are considered the highest evidence11.
The analysis of the review results was performed descriptively. The citation norms of the Brazilian Association of Technical Standards (ABNT) were adhered to, referencing the authors and the Copyright Law (No. 9.160 of February 19, 1998).
RESULTS
The characteristics (year, country, objective, design, participants, and evidence level) of the studies included in the integrative review are presented in Chart 1.
Regarding the publication year of the analyzed studies, the temporal range established was from 2000 to 2022. The distribution included one from 2000, two from 2006 and 2007, one from 2008, 2010, 2011, two from 2012, three from 2013, one from 2014, five from 2015, four from 2016, 10 from 2017, eight from 2018, four from 2019, five from 2020, 10 from 2021, and three from 2022. It was identified that 19 of the publications originated from North America. However, the geographic distribution was varied, also including publications from Europe (17), Asia (16), South America (5), Oceania (5), and Africa (1), indicating global interest in the topic. It is noteworthy that only three studies were conducted in Brazil.
Regarding the study type, classified with evidence levels (EL) according to the Oxford Centre for Evidence-Based Medicine - Levels of Evidence (2011)11, 16 were randomized clinical trials (EL 1), 14 qualitative (EL 5), eight cohort type (EL 2), seven quantitative cross-sectional (EL 2), six quantitative (EL 5), five quasi-experimental (EL 2), four qualitative and quantitative (EL 5), and three pre- and post-intervention type (EL 2).
Concerning participants, mothers participated in 54 studies, fathers in 41, newborns in 23, healthcare professionals in 17, other family members in seven, and administrators and lecturers in one study each. It is notable that some studies included more than one type of participant.
The strategies for promoting FCC in NICU identified in the studies were: educational support (26)13,15-16,24,27-28,33,38-43,51,53,56-58,60,66-70,73-74, participation in care (18)17,27,32,35,39,42-43,50-51,53,56-58,67-70,74, information sharing (16)12,21,23,26,29,32,35,37,42-44,54-55,58,73-74, private/family room (12)17-20,22,34,36,49,55,59,62-63, parent-to-parent support (12)14,24,39,42,49,57-58,67,70,72-74, logistical support (11)19,31,34,43,49,55,57,59,66-67,73, skin-to-skin contact (9)30,45-47,54-55,64-65,71, psychosocial support (6)32,49,57,66-67,73, participation in decision-making (5)32,54,57,67,74, unlimited parental access (4)25,32,54,61, visits (3)32,52,69, and music therapy (1)48.
DISCUSSION
Educational support is a critical tool for empowering parents in the context of neonatal hospitalization. Family-based education helps parents see themselves as integral to their child's care and fosters the belief that both have a role to play in baby care75. Most of these actions are aimed at supporting performance in newborn care and participation in decision-making regarding the care provided, which promotes the development of parental autonomy76.
This support can be provided individually16,39,57,60,73 or in groups13,16,42,57,60,70,73, utilizing various resources such as flyers27, apps57,67,73, slides39, manuals39,42, CDs39, videos33,38,66,69, training, and supervised practice of newborn care58,68-69,74. The topics covered in the studies were diverse, including emotions related to the newborn's hospitalization in the NICU15,41, prematurity15, the NICU environment15,27,33,38-40,43,56,66,69, newborn13,15,27,38-41,53,56,70, newborn care15-16,27,38,43,51,53,60,66,69-70, preparation for hospital discharge13,16,28,60,66,69-70, post-discharge follow-up15, available social resources15, hospital expenses15, the father's role in supporting the mother and baby39, postpartum physical and emotional changes39, parenthood41, forms of family support41, interaction between parents, relatives, and NICU professionals13, and self-care16,60.
Participation is a key concept of Family-Centered Care (FCC), where patients and families are encouraged and supported to engage in care and decision-making at the level they choose7. Studies identified that parents participated in decision-making32,54,57,67,74 and in the care provided to the newborn17,27,32,35,39,42-43,50-51,53,56-58,67-70,74, such as bathing43,56, changing diapers43,56,68-69, feeding17,43,56,68-69, holding during painful procedures43, soothing56, holding56, kangaroo care56, dressing56, positioning the newborn56, singing, talking56, massaging68, and weight checking68.
However, some factors could enhance family participation in care and decision-making, such as interpersonal relationships with the team. In a study focusing on paternal involvement with premature infants in the NICU, interpersonal relationships with the healthcare team were identified as a significant influence on such involvement. Parents reported feeling inadequately skilled for providing care, often deferring to the more knowledgeable nursing staff to take over. Additionally, some parents expressed a fear of interfering with the team’s operations. This underscores the importance of health education and effective communication between the team and the family77.
Conversely, actions by the nursing team can lead to family disengagement due to the control imposed by the team, ranging from parental access to hospitalized children to determining when parents can start physical interaction and presence. Such control is commonly based on the newborn's risk indicators, clinical improvement, and weight gain, to allow or disallow touch and parental presence. Thus, it is crucial for the team to prioritize parental involvement in their child's care for clinical progression of the newborn, as well as to achieve benefits for the family unit. However, this involvement should be based on empowering the family and their rights as parents, i.e., they should have free access to their child and an equal relationship with the healthcare team, with the goals of cooperation and collaboration78.
Effective communication with families is another factor for promoting better family participation, as well as an important tool for building trust and bonding between the family and healthcare professionals79-80. When effective communication with the family is established, it enables them to actively participate in the care and decision-making process involving the clinical management of the newborn81-82. For this, healthcare professionals need to communicate and share complete and unbiased information with families in affirmative and useful ways, ensuring they always receive accurate, complete, and up-to-date information7.
In the studies, information sharing occurred when families participated in daily clinical rounds42-43,54-55,58,73-74, through daily health status updates of the child via videoconference29 or printed21 updates, interdisciplinary family conferences37, printed materials providing an estimated discharge date and needs of the babies according to the gestational age44 of newborns born before 29 weeks12, or through regular conversations between parents and nurses about the newborn's condition, parental concerns, and the nurse-parent relationship23,26.
Another aspect identified in the studies as a strategy that can promote FCC in NICUs is the provision of private/family rooms, where the mother/father or both can stay 24 hours a day with the newborn17-20,22,34,36,49,55,59,62-63. In Brazil, some NICUs have kangaroo units, which are environments with physical and material structures enabling the mother to stay 24 hours a day with the newborn to perform Kangaroo Mother Care83.
Another aspect of the Kangaroo Method, also mentioned in the studies, is skin-to-skin contact30,45-47,54-55,64-65, which could be performed whenever the parents wished and the newborn was stable. Skin-to-skin contact is defined as positioning the newborn, wearing only a diaper and a hat, on the bare chest of the parents in a vertical position for shorter or longer periods47.
Another tool increasingly used in studies to promote FCC is parent-to-parent support14,24,39,42,49,57-58,67,70,72-74, which involves encouraging and facilitating the meeting of parents experiencing similar situations. This promotes emotional support and connection among members, facilitating the expression and sharing of feelings, doubts, concerns, and also enabling the processing of lived experiences84. Parent-to-parent support can be provided in various ways, such as through parent or other family member groups14,24,39,49,70,72,74, which is the usual method, or through individual conversations14,42,57-58,67,73, or even via telephone calls14.
In terms of logistical support, parents were provided with parking passes31,57,67,73, had access to kitchens to prepare their meals19,34,43,59, or received all their meals49,55,66, and had access to a lounge with television and computers34, and laundry facilities19. These aspects facilitate the presence of parents in the NICU as well as the unit's openness to parents 24 hours a day25,32,54, the use of cameras that offer monitoring of the newborn, allowing parents to access them at any time61, and the entry of other family members32,52,69, who can provide support to the parents. In addition to family support, parents received support from a psychologist49,57,67,73 and a social worker, which provided financial support66 as well as comfort in situations of loss and grief32.
Music therapy was also a tool used in the NICU to provide relaxation for parents48. After participating in music therapy groups, parents reported improvements in anxiety and stress levels, as well as in mood, rest, and motivation. They also mentioned benefits such as being able to relax, distract themselves from their worries, and have time for themselves48.
The limitation of the study refers to the non-consultation of grey literature, such as theses and dissertations, which may have led to the exclusion of research results not published in the form of articles.
CONCLUSION
The strategies identified to promote FCC in NICUs were diverse, including educational support, parental involvement in care and decision-making, information sharing, private/family rooms, parent-to-parent support, logistical support, skin-to-skin contact, psychosocial support, unrestricted parental access, visits, and music therapy.
This review provides elements that can contribute to the implementation of FCC in NICUs in the Brazilian context, considering the gap identified regarding strategies implemented in Brazil and also points to possibilities for new research by investigating whether the identified strategies can be implemented in Brazilian NICUs and if they are effective. Further studies are suggested to evaluate the implementation and impact of these strategies in clinical practice.
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