https://orcid.org/0000-0001-9926-1486
Figures
Abstract
Introduction
Several global initiatives put parent involvement at the forefront of enabling children’s well-being and development and to promote quality of care for newborns and hospitalized young children aged 0–24 months. Scanty evidence on mistreatment such as delays or neglect and poor pain management among newborns exists, with even less exploring the experience of their parents and their hospitalized young children. To address this gap, authors reviewed research on experience of care for hospitalized young children and their parents, and potential interventions that may promote positive experience of care.
Methods
A scoping review of English language articles, guidelines, and reports that addressed the experiences of care for newborns and sick young children 0–24 months in health facilities was conducted. Multiple databases: PubMed, PROSPERO, COCHRANE Library and Google Scholar were included and yielded 7,784 articles. Documents published between 2009 and November 2020, in English and with evidence on interventions that addressed family involvement and partnership in care for their sick children were included.
Results
The scoping review includes 68 documents across 31 countries after exclusion. Mistreatment of newborns comprises physical abuse, verbal abuse, stigma and discrimination, failure to meet professional standards, poor rapport between providers and patients, poor legal accountability, and poor bereavement and posthumous care. No literature was identified describing mistreatment of hospitalized children aged 60 days– 24 months. Key drivers of mistreatment include under-resourced health systems and poor provider attitudes. Positive experience of care was reported in contexts of good parent-provider communication. Three possible interventions on positive experience of care for hospitalized young children (0–24 months) emerged: 1) nurturing care; 2) family centered care and 3) provider and parental engagement. Communication and counseling, effective provider-parental engagement, and supportive work environments were associated with reduced anxiety and stress for parents and hospitalized young children. Few interventions focused on addressing providers’ underlying attitudes and biases that influence provider behaviors, and how they affect engaging with parents.
Conclusion
Limited evidence on manifestations of mistreatment, lack of respectful care, drivers of poor experience and interventions that may mitigate poor experience of care for hospitalized young children 0–24 months especially in low resource settings exists. Design and testing appropriate models that enhance socio-behavioral dimensions of care experience and promote provider-family engagement in hospitals are required.
Citation: Ndwiga C, Warren CE, Okondo C, Abuya T, Sripad P (2022) Experience of care of hospitalized newborns and young children and their parents: A scoping review. PLoS ONE 17(8): e0272912. https://doi.org/10.1371/journal.pone.0272912
Editor: George Vousden, Public Library of Science, UNITED KINGDOM
Received: November 26, 2020; Accepted: July 28, 2022; Published: August 29, 2022
Copyright: © 2022 Ndwiga et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Data Availability: There is no data restriction for the this scooping review. We have uploaded the Pubmed search strategy 2019-2020 and Review Literature 2021 to show search strategy. We are happy to provide any other information that is required to support our review.
Funding: This study was funded by the generous support of the American people through the United States Agency for International Development (USAID) under Breakthrough RESEARCH (Cooperative Agreement no. AID-OAA-A-17-00018). The contents of this manuscript are the sole responsibility of the authors and do not necessarily reflect the views of USAID or the United States Government.
Competing interests: The authors have declared that no competing interests exist.
Abbreviations: ENAP, Every Newborn Action Plan; FCC, Family Centered Care; IMNCI, Integrated Management of Newborn and Child Initiative; LMICs, Low and Middle-Income Countries; MNH, Maternal and Newborn Health; NICU, Neonatal Intensive Care Unit; WHO, World Health Organization
Introduction
Every year, millions of children under 5 years of age die worldwide, mostly from preventable causes, including preterm birth, neonatal sepsis, birth asphyxia and defects, pneumonia, diarrhea, malaria, and nutrition-related conditions. The United Nations’ Sustainable Development Goals include targets the reduction of neonatal mortality to 12 deaths per 1,000 live births and under five mortality to 25 deaths per 1,000 live births by 2030 [1, 2]. Despite the substantial global progress in reducing child mortality over the past few decades, a child’s ability to survive and thrive remains an urgent concern. The Every Newborn Action Plan (ENAP) initiative aims to have: “a world in which there are no preventable deaths of newborns or stillbirths, where every pregnancy is wanted, every birth is celebrated, and women, babies and children survive, thrive and reach their full potential” [3–5]. ENAP identifies the role of parents, families, and communities to enable children’s well-being and development and promote quality care. It places parental and family involvement at the forefront of provision of care for newborns and young children and emphasizes the importance of engaging men as caregivers and decision-makers in maternal and newborn care-seeking behavior [3].
The quality of care for hospitalized newborns and young children is intrinsically linked to experience of care across the life-course continuum (starting from their mothers’ pregnancy through her childbirth experience and thereafter) and recognized in global frameworks that view quality as a combination of service delivery and experience of patient care [4–6]. Quality of newborn and pediatric care are further articulated by the World Health Organization (WHO)’s maternal and newborn health (MNH) care and pediatric quality of care frameworks and eight standards for quality of pediatric care as well as the standards for improving quality of care for small and sick newborns in health facilities [5, 7, 8]. These quality domains recognize children’s health as encompassing a range of distinct physical, psychosocial, developmental and communication needs [6]. Specifically, positive experience of care entails meaningful family participation in their children’s care, respect, protection and fulfillment of children’s rights and emotional and psychological support. While these eight domains offer quality aspirations in principle, there is less known about their realization in practice. Positive experience of care for sick children can reduce parental anxiety and improve communication between parents/caregivers and health professionals [9]. However, although a growing body of evidence around experience of care including mistreatment of women during childbirth exists [10–14], there has been less attention to understand the experience of parents of newborns and young children up to 24 months. There have been few concerted effort to identify or address manifestations of mistreatment of newborns and hospitalized young children [15]. Sacks found that mistreatment in newborns include failure to meet a professional standard of care, stigma and discrimination, and health system constraints, delays or neglect, non-consented, physical (poor pain management or rough handling and verbal abuse, lack of communication with parents’ lack of legal accountability (recognition for the newborn as a person) and bereavement care [15]. Similarly, there is little evidence on interventions that may mitigate poor experience of care and promote positive care experiences among newborns and young children. As a result, appropriate models that enhance the socio-behavioral dimensions of care experience and promote family-engagement are limited in low income settings [16].
To fill this gap, the authors conducted a scoping review to map the research on experience of care and related interventions for young children from birth to 24 months and their parents in hospitalized and outpatient settings. The focus was on manifestations of mistreatment and their drivers during care for young children up to 24 months, positive and negative experiences of care and, potential interventions that reduce mistreatment, promote provider communication and family engagement in their children’s care globally, including in low- and middle-income countries. Evidence from this scoping review alongside formative research in select hospitals in Kenya (not presented in this paper) will be used to identify a contextually relevant model to improve experience of care for parents and families seeking services for hospitalized newborns, infants and young children up to 24 months in a low-income setting. For the purpose of this paper, we use the term “young children” for those who are 0 to 24 months unless otherwise specified.
Methods
Scoping reviews map key concepts within a research area, the main sources and types of evidence available, and can be used for concurrent pragmatic aims, including summarizing and describing a particular concept (e.g. experience of care for young children and their parents or related-interventions), its characteristics, and identification of gaps and areas of future research and practice [17, 18]. Given our study is embedded in a broader implementation science approach to inform the development of a theory of change framework, we applied a scoping review as a methodological approach to help the authors map and synthesize relevant studies on experience of care and mistreatment for sick young children 0–24 months, interventions on family involvement in caring for sick children. This approach was conducive to eliciting thematic gaps and programmatic recommendations for subsequent studies and interventions to improve experience of care, reduce mistreatment and encourage family engagement and involvement care of young sick children.
Search strategy
Our search strategy drew on guidance from the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) [19]. Five reviewers identified the purpose and research question and established a common understanding of relevant terminology to use, identify the core concepts in experience of care and mistreatment, and interventions involving families and parents in the care of sick young children. Three reviewers applied an iterative approach, characteristic of scoping reviews, to select relevant published and grey literature, formal reports, WHO guidelines, standards, and clinical protocols that addressed the experiences of care for newborns and sick young children 0–24 months in health facilities. English language articles, guidelines, and reports were identified by searching multiple databases: PubMed, PROSPERO, COCHRANE Library and Google Scholar. Additional studies were identified through articles shared by experts in newborn and child health and based on reference lists within included articles and reports. All retrieved references were entered in Mendeley Reference Manager Software and duplicates removed. The search terms or key words used are presented in Fig 1 including how the Boolean principles “AND, OR” were applied during the search.
The search terms and their corresponding definitions are presented in S1 Table, some of the definitions were adopted from literature and the recently released report on “Nurturing Care for Small and Sick Newborns: Evidence Review and Country Case Studies” [20]. Documents were included if they were published between January 2009 and November 2020, published in English and included newborns, infants and young children up to 24 months as well as evidence on interventions that addressed integrated care, nurturing care, quality of care or family-centered care. Qualitative, quantitative, and mixed methods studies were included as well as narrative, literature, and systematic reviews. While literature was drawn globally, a focus was given to the sub-Saharan Africa region by including it in each of the search terms, only 13 out of 68 studies/documents were identified. Documents were excluded if they only provided evidence on children older than 24 months, not available in English, published before 2009 or were not relevant to experience of care.
Data extraction
Two reviewers (CN and CO) extracted data by reading the full text articles, guidelines and reports that met the eligibility criteria and retained through the iterative charting process. Reviewers extracted information, using Microsoft Excel, on each document’s publication-related data (authors, title, reference), geography and context, study and data type, manifestations and types of mistreatment and positive experiences of newborns and sick young children, of family centered care (FCC), quality of care, intervention elements—including partners and funders. They reviewed the relevance and type of evidence and summarized these broad emerging themes to map out areas for future programmatic research.
Results
General overview
The initial search in PubMed, PROSPERO, COCHRANE Library and Google Scholar yielded 7,784 results and after exclusions, 246 were retrieved as potentially eligible papers.
Fig 2 illustrates the search strategy.
After exclusions, 68 published papers, grey literature, guidelines and strategy documents aimed at defining normative practices among young children 0–24 months of age were included. The analysis synthesized findings from single- and multi-country studies conducted across 31 countries, including Global (n = 18); high income countries in Europe (n = 13), North America (n = 15) and Australia (n = 2); low- and middle-income countries (LMICs) in South America (n = 2); Asia (n = 6) and sub-Saharan Africa (n = 13). Many papers focused on newborns aged between 0–28 days including stillbirths, premature babies, and neonatal deaths (n = 42). The remaining literature centered on children 59 days and older (n = 26); of these, very few papers had evidence that was exclusive to young children up to 24 months old (n = 4). The remaining 19 (of the 26) addressed under five or pediatric care in older children but were retained as they met the other inclusion criteria and featured learnings on interventions around the 0-24-month age group.
The results from the scoping review are described under three main domains: 1) experience of care for hospitalized young children and their caregivers; 2) drivers of negative experience of care of hospitalized young children and their caregivers; and 3) interventions to promote positive experience of caregivers and their hospitalized young children. Where possible, each domain describes issues pertaining to hospitalized newborns and young infants (0–59 days) and infant/young child (60 days– 24 months) separately. We found 15 articles on experience of care (Table 1), 11 on drivers of poor experience of care (Table 2), and 32 on interventions that may reduce negative experiences of care (Table 3).
Experience of care for newborns and sick young children (0–24 months) and their caregivers
Negative experiences of care manifest in various forms and were described in eight studies (Table 1). Mistreatment of newborns is described by Sacks [15] who expands on a typology for mistreatment during labour and delivery outlined by Bohren et al [10]. The resulting mistreatment categories include: physical abuse; verbal abuse; stigma and discrimination; failure to meet professional standards; poor rapport between providers and patients; and health system conditions and constraints; legal accountability and poor bereavement and posthumous care [15]. We were unable to find any papers with a specific study purpose of describing mistreatment of young children (60 days– 24 months) who are hospitalized or receiving care at health facilities.
Negative provider attitudes manifest as unfriendly verbal expressions or lack of attendance to parents when they complain about care. This may lead to distrust in the health system and influence women’s future care-seeking decisions for future childbirth at facilities, postnatal care, and accessing essential child health services [21]. Health systems constraints such as limited space for mothers’ accommodation, noisy, brightly lit, and intimidating units or wards, without much privacy and strict visitation protocols result in long periods of separation between mothers and infants, which is shown to be common in the neonatal intensive care unit (NICU). This might be stressful and traumatic for the mother and newborn, as it hinders bonding and leads to long-term consequences for the mother-baby relationship and may also impede breastfeeding [22–24]. Other experiences described include unjustified lengthy admissions, over diagnosis of risk conditions (for example, predicting urinary tract infection in many infants while only a few actually have it), inappropriate use of drugs often with unnecessary intravenous or intramuscular treatments for both mothers and newborns in management of life-threatening complications, and disregard of women’s right to information, privacy or confidentiality [23].
Negative experiences also occur as a result of poor provider communication with parents on caring for their hospitalized young children (n = 9). Studies show that women, were often poorly informed about clinical practices and procedures, lack autonomy to make treatment choices for their newborns; in cases of small and sick newborns, this can lead to emotional crises including maternal post-traumatic stress, anxiety and depression [16, 23, 25–27]. Other studies show that limited communication between midwives and parents and families may be due to a provider’s heavy workload [28, 29]. One study suggests that parents who experienced a stillbirth felt ignored by providers’ and perceived providers’ inattentiveness as “normal but troubling” while providers describe this as a “coping strategy” to avoid difficult conversations with parents [30]. In another study, providers had difficulty integrating parents of babies with congenital anomalies in nursing care activities [31]. Elsewhere both provider and parents’ perspectives were identified. One study showed parents perceived providers as being rude or withholding information or not listening to mothers; non-consented care; speaking loudly about baby’s condition without consideration for privacy and confidentiality. On the other hand providers’ described mothers not following instructions (not washing hands prior to entering neonatal unit); giving incorrect or misleading information "lying about the condition" to have their baby discharged sooner [32].
Positive experiences of care, across (n = 12) studies, were reported where parents were able to express their opinions’ on care given to their newborns and when there was good communication between providers and parents [22, 26, 33, 34]. Positive interactions were evident when parents are taught basic nursing skills such as feeding, cleaning, clothing and monitoring their newborn,.[22, 27, 35]; and where care plans and clinical decisions (particularly low risk ones) are made jointly by parents and providers, and consider the context of the family and community [35]. Positive experience was also reported if parents were allowed to provide comfort to their newborn and assist with daily routine care in an encouraging and enabling environment [36, 37]. Processes that support mothers and fathers to learn how to care for their premature babies while still in hospital in readiness for caring for their babies at home was described as a positive experience of care. This helped parents overcome their fears and insecurities, strengthen mother-infant bonds, and made them feel empowered to participate actively, in the care of their babies and increased confidence of caregiving at discharge [32, 34]. Positive experiences of parents, including providers responding to their needs and rights, was also instrumental in improving a child’s ability to thrive. For hospitals with limited resources, having parents perform some tasks such as tube feeding helped to address staff shortages in nurseries, and functioned as a short-term economic savings to the facilities [22]. Positive experiences were also reported where parents with sick newborns in NICU were helped to meet their emotional support needs and information on care through parents support groups [38]. There were no specific studies examining experience of care among young children beyond 59 days.
Drivers of negative experience of care
Twelve studies describe the various factors influencing or “driving” negative experiences of care within health systems and among communities, and from individual providers.
Under-resourced health systems, and specifically at facility level, contribute to drivers of patient mistreatment. Often due to weak infrastructure and limited equipment, including lack of such basic elements such as running water, crowded units with limited bed capacity (where newborns are often sharing incubators or cots), noisiness, lack of privacy, lack of life saving commodities and facility policies, poor adherence to policies and guidelines and poorly trained staff are especially acute factors.
In a multi-country study, readiness for skin-to-skin implementation in newborn units was extremely rare [39], and failures in meeting standards of care and professional conduct, examples, patient neglect, poor staff accountability, non-consented care, and poor bereavement care all contribute to mistreatment of newborns [15, 30]. A study in Southwest Spain and another in United States, found that lack of continued care/support (mental, social) for grieving parents who had experienced a stillbirth or neonatal death led to feelings loneliness, and a lack of understanding and satisfaction with end-of-life care provided [40, 41]. While provider attitudes and norms appear to influence behaviors that can be described as mistreatment, or produce negative experiences for parents or young children, no studies focused on examining these factors. Poor experiences of patient care may also result from socio-cultural factors and community norms for the care of newborns and young children. In some LMICs, both provider and familial neglect of newborns and young infants at a facility may derive from societal non-recognition of newborns as full “human beings” [42] or prioritizing a mother’s needs over newborns and lack of access to health care [43]. Practices such as delayed initiation of breastfeeding due to perceived lack of milk, or because a baby “needs to sleep” after delivery, or does not show outward signs of hunger, are examples of socio-cultural factors [43–45]. A multi country review found that health workers who lack knowledge and training on the importance of early and timely breast expression do not support and educate the mother on it [20]. A study in Gujarat, India found that skin-to-skin care was not practiced in most cases regardless of place of delivery, and immediate breastfeeding was not practiced in almost 63 percent of all deliveries, because most mothers believed colostrum digestion is difficult for newborns, or because the infant is kept from the mother after birth [46]. Data from Ghana and Ethiopia show that cultural norms such as early bathing can be prevalent even in facilities [20]. Another study in Ethiopia reported practices of bathing the newborn during the first 24 hours of life (75%), application of butter and other substances to the cord (20%) and discarding colostrum milk (44.5%)—all three contrary to WHO recommendations [47].
Interventions to improve positive experience and emotional needs of parents with sick young children
This scoping review found 40 studies of interventions that may improve experiences of care, reduce mistreatment, or improve provider and parent communication and partnership whereby parents are central to caregiving. Of these, 14 were review articles, three were randomized control trials three pilot interventions, one was an implementation study, and two were evaluations.
In this review we refer to the WHO’s Nurturing Care Framework [6], as it provides global guidelines on important strategies for access, provision, and more explicitly, experience of care that place parents, providers, managers and policymakers as central to quality services.
The interventions discussed in this review are not mutually exclusive but focus on encouraging positive interactions between providers and parents. Some interventions emphasize the use, adaptation, or development of policy guidance, care protocols and job aids, parental or provider trainings, and use of technology to support an implementation. Nurturing care emerged as an approach that enhance physical, emotional and cognitive development. To effectively implement nurturing care three main interventions that can enhance nurturing care emerge from this review that may improve the experiences of care for newborns and young children: nurturing care, family-centered care, strategies to enhance parental/family engagement which all underscores provider communication and counseling skills.
a. Nurturing care approaches.
Three studies; all of which are global reviews and one WHO framework describe approaches to ensure nurturing care. Nurturing care is defined by Britto et al. as “a stable environment that is sensitive to children’s health and nutritional needs, with protection from threats, opportunities for early learning, and interactions that are responsive, emotionally supportive, and developmentally stimulating” [48]. Interventions encompassing nurturing care have been predominantly in high income countries, throughout the life continuum, starting in pregnancy with education and counseling, continuing through childbirth, the newborn period, infancy, and early childhood. Elements of a nurturing care approach might ensure, for example, skin-to-skin care for small and sick newborns, optimal nutrition (i.e. breastmilk feeding and exclusive breastfeeding, infant and young child feeding), and protection and promotion of sleep. Other elements of nurturing care include reducing stress and pain, supportive positioning, sensory environment, stimulation, and interaction.
In the long term, nurturing care promotes a child’s physical and cognitive development, reduces morbidities and mortalities, and prevents disability injuries and deaths [6, 16, 20, 48]. Nurturing care provides neuroprotection in NICU as well as enhances parental ability to read and understand the behavior of the immature infant, and to support the responsive parent and infant bond. Despite its small and sick newborn focus, nurturing care elements such as adequate rest, reduced sensitivity and motor activity (adequate play, quite/calm environment) are appropriate for older infants and young children who are unable to articulate their needs (up to 24 months of age).
This review shows that nurturing care during management of pre-term births and those born with complications is associated with outcomes such as early bonding, facilitated by skin-to-skin contact, and early initiation of breastfeeding, facilitated by a companion to support the new mother [6, 20]. Other benefits include reducing pain immediately after a procedure through touch or massage, non-nutritive sucking, and a calm environment, with reduced noise and light levels in the NICU are associated with reducing stress. Additionally, skin to skin contact 30 minutes before a painful procedure and sweet tasting solutions, swaddling/facilitated tucking, or a combination of facilitated tucking with nonnutritive sucking are effective in reducing immediate pain and distress in inpatient preterm newborns [20]. Nurturing care is also associated with improved infant medical outcomes, staff and family satisfaction, and decreased NICU lengths of stay and hospital costs [16]. Implementation of nurturing care may include establishing teams in newborn units, training through e-Learning, didactic education, interactive workshops, physician sessions, and in-unit consultation to all individuals who care for premature infants in a NICU [6, 16, 20]. Elements of nurturing care and protection can be combined with other existing child health interventions that offer parenting support and skills development [48].
b. Family centered care.
Family-centered care (FCC), described in 14 studies, places parents, families and caregivers at the center of newborn and young childcare. Family centered care is an approach to care delivery that promotes a mutually beneficial partnership among parents, families and healthcare providers to support health-care planning, delivery and evaluation. The principles of family-centered care include: dignity and respect; information sharing; participation; and collaboration [49]. This model resulted from increased recognition of the importance of meeting young children’s psycho-social and developmental needs, which include the influence of their families on their wellbeing [25]. FCC enhances nurturing care and is mainly described as working with parents of small and sick newborns, premature infants, and young children requiring long term hospitalization, or those with chronic illness, but is also applicable to older infants and young children.
FCC involves time-sensitive dual communication between parents and multi-disciplinary team members who coordinate care transition through emotional, educational, medical, and home visit support for families. FCC is also an approach that promotes mutual benefit among parents, their families and providers through dignity and respect; information sharing; participation; and collaboration [50]. Implementation of FCC requires some parental literacy, and willingness of parents and providers to work together and spend time in NICU or pediatric units. The model presumes providers are able to coach and educate families on specific tasks, including taking temperature, weighing, nasal gastric tube feeding, Kangaroo Mother Care (KMC), breastfeeding, hygiene, and interaction with their children including neurodevelopmental care, responsive care, among others [51].
FCC promotes a healing and nurturing environment that fosters care and protection for better linguistic, cognitive, motor, social, and emotional development, and improved psycho-social outcomes of young children under five years of age. FCC depends on providers’ knowledge and abilities to apply FCC core concepts during their interactions with parents. A randomised controlled trial evaluating FCC of sick newborns admitted in a NICU showed that babies of mothers or families trained and involved in FCC showed lower rates of nosocomial infections than a control group (not trained in FCC) though not significant [52]. FCC improved infant weight gain, decreased parent stress and anxiety, and increased high frequency exclusive breastfeeding upon discharge from a NICU [53].
Studies show that family members report satisfaction with their health care experiences involving FCC due to the transparency of care, allowing parents to be at the infant’s bedside [54], and providers demonstrating respect by listening to and honoring family perspectives and choices [20, 55]. FCC offers effective psycho-social support to parents of children in the NICU by identifying parents’ concerns and stressors for their infants’ care and developing individualized pre- and post-discharge plans [50]. FCC increases parental presence, improves physical and mental development growth, and prevents abuse and neglect of infants [56]. Implementing FCC necessitates training both for providers and parents [20, 48, 57], and often FCC interventions are focused on clinical aspects such as parents counseling on care and their participation in clinical rounds with less attention on provider introspection of their own attitudes or biases towards parents. An inter-professional approach to FCC was found to be useful in developing practical skills such as ways of working with and engaging families, increased reciprocity in therapeutic relationship, but it did not appear to change provider attitudes toward families [40].
c. Parental/family engagement.
Eight (n = 13) studies describe parental engagement as a promising strategy to enhance effective parent and provider communication for meaningful participation in their hospitalized child’s care. WHO’s Framework for Improving the Quality of Pediatric Care recommends effective provider and parent communication and meaningful parental participation [5]. Parent engagement refers to the presence and participation of a parent (maternal or paternal) during infant care such as in comforting their infants and performing some specific care aspects [58]. While family engagement also known as family integrated care (with trained parents as mentors to other parents and family members) is a set of activities that grounds childcare in a supportive relationships and environment at the facility and home [55]. Carman et al. describes a family engagement framework of three levels, namely direct care, organizational design and governance, and policy. Each level along the continuum of care mandates consultation, involvement, partnership, and sharing of leadership [59].
Models, which educate health providers on how to communicate and provide end-of-life care, are particularly beneficial in dealing with bereavement or events after the death of a child [6, 16, 55, 60]. Parent engagement models include unplanned and informal delegation of care to parents, as well as sufficient parental training and parents’ willingness to participate in the care of their sick children [61–63]. In very sick newborns and young children it helps support parents during a difficult period. In addition to empathetic care, providers or social-workers encouraged ritual and grieving processes such as sufficient time to ‘say good-bye’ to an infant, keeping a memento, or offering space for parental expression of and communication around grief in the hospital setting were found to be helpful [40, 41]. Studies on bereavement support suggest a need for providers to be flexible in their approach to meet parental variability and cultural nuances around losing a child.
Family and parental engagement has also been associated with greater acceptability of exclusive breastfeeding, immediate breastfeeding after birth, and skin-to-skin care and infant warmth. Parental engagement also enhances families’ involvement in decisions, when parents are well-informed of what is expected of them for the care of their children in newborn units [64]. The element of peer-to-peer support provides physical caregiver wellness such as sleeping and sitting spaces and a room for procedures co-led by parents [57, 65, 66].). Parental engagement in high-income settings has been facilitated through active use of visual tools and mapping activities during a young child’s hospital stay [36, 67]. Provider behaviour change and their mindset is critical in seeing parents as primary caregivers and influences how FCC is practiced [68] though adaptions to LMICs and more socio-cultural contexts is needed.
One challenge to parental engagement strategies is the power imbalances between parents, families and their clinicians, with providers’ values and preferences potentially hindering consideration of families in decisions during care [69]. A study in Kenya found that 8% of women reported being separated from their newborns at the facility after delivery, of whom 80% were separated for more than 10 minutes. Just under half (45%) felt separation was unnecessary while 60% reported consent was not obtained prior to procedures conducted on their newborn [70]. This limited parent engagement in breastfeeding and satisfaction [70] The values and attitudes of providers within parental engagement strategies are not sufficiently considered in the interventions described.
d. Provider communication and counselling.
Central to nurturing care, family centered care and family/ parental engagement as well as other child health interventions is the quality of provider communication and counselling. Several studies (n = 13) focused on strategies to improve communication between providers and parents. Effective communication between providers and parents is integral to improve health care, reduce medical errors, and better health care seeking. Parents play unique and integral roles in judging their child’s symptoms, and they need to be given information on care during their child’s hospital stay to ensure adequate care and follow up at home [6].
A global systematic review found that parental capacity, confidence, and communication with providers is key for joint decisions for pre-term and acutely ill infants as they transition within or between health care settings [71]. Few studies, that do so examine shared decision making in a pediatric care setting especially for newborns and acute situations, e.g., treatment decisions for high-risk newborns and end of life [72] and targeted parent education and involvement on infants pain management [73]. In Malawi, parents with inadequate and inconsistent information of when their newborns were on bubble continuous positive airway pressure (CPAP) devices were more anxious and fearful [74]. For older children, a study in Norway, found that joint decision-making increases parents’ sense of security and control of their child’s health care [75]. A study of engaging men during pregnancy, childbirth, and infancy found that enhanced communication increased couples’ joint decisions-making, leading to responsive care seeking behavior and home care practices [76]. A study in Kenya found that, parents informed early of their infant’s HIV diagnosis resulted in a feeling of less stigmatization from providers [77].
A pediatric unit study found that although a structured communication intervention for families and providers did not change, the overall rate of medical errors (per 1,000 patient days) such as administering penicillin to a patient with a known penicillin allergy, harmful errors (preventable adverse events) such as delay in treatment or skin breakdown from oxygen tubing decreased significantly, by 38 percent post-intervention [78]. A review found that psychological and psychosocial support can improve communication with parents. This includes peer-to-peer support between parents such as face-to-face meetings, phone, group, and online communication forums for distressed parents and training NICU providers on mental health [79].
A study in Brazil and a systematic review conducted in the United States found that involving parents during medical ward rounds, in discussions with clinicians about their sick children’s care, was instrumental in improving communication and understanding of information—and confidence in the medical team [35, 80]. Parents who reported better communication were more likely to return to the facility, while poor provider communication was associated with lower satisfaction of services received [81]. In an intervention where providers observed and provided feedback to parents, enhanced care practices of parents led to their young children’s survival, healthy growth, and physical, intellectual, language and emotional development [82].
Most interventions on communication counselling centered around information-sharing and provider development of parental capacities for specific skills through routine clinical counseling, observation and recommendations for care practices, and use of technology to promote follow up. A meta review observed that health workers should receive training in communication skills during their pre- and in-service health education. Implementation of most parent-targeted interventions emphasize regular interpersonal communication between parents and providers, with respect, confidentiality, comfort and support during care, engaging clients in care decisions, with continuity of care and audit and client response mechanisms [83].
A study in the Middle East on implementation of the Integrated Management of Newborn and Child Initiative (IMNCI) for children under five years of age found that, although clinician competency improved for assessing, classifying, and treating illnesses according to IMNCI guidelines, transferring complementary skills to parents required more attention [84]. Inadequate provider capacity could lead to inconsistent advice, misinformation, negative attitudes. This coupled with lack of time, and poor hospital policies may create barriers to successful implementation of the baby friendly breastfeeding initiative [24]. While training of providers is recognized as fundamental, few interventions emphasized provider attitudes and behavioral aspects that may affect their communication with parents.
Discussion
This scoping review describes literature on experience of care for sick young children (24 months of age and younger) and the experiences of their parents or caregivers, the factors driving negative experience of care, and interventions to improve these experiences and address the emotional needs of parents with sick young children. The 68 published and grey literature documents assessed from the last 10 years reveal that findings on mistreatment of young children, positive experiences, and interventions in a hospital setting emerged primarily from Asia, Europe, or North America, while most literature on the drivers of mistreatment is from sub-Saharan Africa. Overall, the literature on experiences of care is limited; there is little on mistreatment of newborns and young children (particularly infants and young children of ages 60 days to 24 months) and even less on how to mitigate mistreatment broadly. Interventions to improve the experience of care—nurturing care, FCC, parental engagement, and provider communication—are generally implemented in high income settings, with a paucity of evidence on how such models can be implemented in low income settings, with a focus on small and sick newborns and young children with chronic illnesses or conditions. Existing models do not sufficiently distinguish how provider norms and attitudes toward parents affect their interactions and behaviors.
Experience of care for sick young children
All children have a right to respectful and adequate health care that considers their behavioral and developmental needs, and is sensitive to the emotional and psychological needs of their caregivers [85–88]. Authors identified three sets of negative experiences: mistreatment of newborns; poor provider communication and its effect on parents and their children; and the negative effects of newborn and young child separation from their parents or families while in hospital. Most of these studies were in the United States and Europe.
Drivers of negative care experience of care
This scoping review shows that the drivers of negative experience of care are well documented, especially for newborns (n = 10), but little evidence exists for young children up to 24 months (n = 1). Factors driving inadequate provider care include inadequate knowledge, poor communication and interaction with parents, and poor personal and professional attitudes. Factors affecting care at facilities include high workloads with inadequate staffing, commodities, equipment, and general infrastructure. These factors are well described in high income countries, but there is little recorded evidence on negative experiences of care especially in sub-Saharan Africa [89–91].
Interventions to improve positive experience
This review reveals a wide range of interventions (n = 32) for improving quality of care, especially those involving families. These strategies are mainly articulated for small and sick newborns and premature infants including children with long term or chronic illnesses, with limited evidence on older children ages 60 days to 24 months.
This scoping review identified three inter-related frameworks that have been introduced in high income countries: 1) Family-Centered Care (FCC), 2) Family and Parent Engagement, and 3) Nurturing Care. The three frameworks put the child’s family at the center of childcare during hospitalization. Each emphasizes family education, coaching, and full partnership with health care providers for a child’s care, which is found to improve understanding and adherence to plan of care in addition to follow up care at home, resulting in better newborn and child health outcomes. Supporting parents psychosocially while at the hospital and continually once back in society–particularly in cases of perinatal loss remains an area for future adaptation and refinement. Good provider communication and counseling also enhance the experience of care with improved mutual understanding of care measures and enhanced respect among caregivers, families, and providers.
Factors that influence family engagement include beliefs about the family/of child’s role, health literacy and education, organizational culture, societal norms, policy, practice and regulation [59]. WHO standards for improving the quality of care for small and sick newborns in health facilities recommends adequate providers and capacity building of existing newborn management including nurturing care for sick newborn and their families through orientation programmes, continuing education, skills training, quality improvement initiatives and support to maintain and increase competence [92]. But there is minimal evidence on child health policies and protocols that guide implementation of these frameworks and interventions in resource-constrained settings. We also noted inadequate focus on provider norms, attitudes, and biases that may affect the quality of their communication and engagement with parents. Our results show that parental and provider knowledge, along with protocols and job aids and visual tools can positively or negatively influence the degree of willingness to engage in strategies for enhanced care for newborns and young children including for a critically ill infant.[36, 93–97].
Several studies show that a conducive policy environment, facility preparedness, and improved provider and parental knowledge play critical roles in successful implementation of health care interventions [93, 94, 96, 98]. One area of evidence that apparently mitigates poor experiences of care is the promotion of shared decisions by parents and providers in children’s care a key element of family centered care and parent engagement. While we did not include this in our search terms, a 2019 systematic review of “barriers to shared decision-making between parents and providers” identified that the type of decision, poor quality information, a caregiver’s emotional state, relative power relations, and inadequate time are key issues that need to be addressed [99].
Strengths and limitations
This scoping review adds to the existing body of evidence on experience of care and the factors that drive mistreatment of newborn and young children up to 24 months of age. It also describes promising intervention models to improve the experience of care and reduce mistreatment. The process of interpreting evidence from the interventions in this review was complicated since many studies did not consistently nor adequately measure outcomes. Although the authors conducted an extensive in-depth literature review, it is possible not all available literature was identified, as only those studies published in English and within the last 10 years were included. Moreover, similar to other scoping reviews and in line with the debate around quality assessment constraints, the study did not assess quality of evidence to the extent possible in a in a systematic review with tighter criteria and sufficient research in the topic area [18, 100]. Despite these limitations, including the expanding and varied definitions of the methodological approach, this scoping review suggests a range of models that could be adapted and integrated within programs and policies for improving hospital-based experiences of care for newborns and young children as well as their parents; and can be introduced and piloted in low income settings.
This scoping review will be used in two ways: 1) with formative research in select hospitals in Kenya for developing a contextually-relevant model to improve experience of care for parents and families seeking services for sick young children up to 24 months in a low income setting, and 2) to develop and test a provider behavior change approach to enhance provider and parent communication and engagement for the promotion of respectful, nurturing and health system responsive care to newborns, infants, and young children in a low resource setting.
Conclusion
Experience of care is an integral component of quality care for hospitalized newborns and young children up to 24 months of age. There is limited evidence on the implementation of models of care that sufficiently consider provider-centric norms and attitudes while involving parents and families in the care of hospitalized newborns and young children globally, and in sub-Saharan Africa. A focus on addressing norms and values of health providers that may drive poor quality of care is critical. Improving provider performance is crucial to accelerating progress in child survival—and to thrive—and meeting the sustainable development goal targets.
Supporting information
S1 File. Pubmed full electronic search strategy.
https://doi.org/10.1371/journal.pone.0272912.s002
(ZIP)
Acknowledgments
The authors would like to acknowledge Laura Reichenbach and Kamden Hoffmann, from Breakthrough Research Project; Sheila Macharia and Lilian Mutea, USAID, Kenya Mission and Pavani Ram, Leah Greenspan, Lily Kak and Troy Jacobs, USAID, Washington DC for providing comments on the draft manuscript.
References
- 1.
UNICEF, WHO, The World Bank Group, UN Population Division. Levels and Trends in Child Mortality: Report 2017. United Nations Inter-gr Child Mortal Estim. 2017.
- 2.
UN. Sustainable Development Goals. 2019. https://sustainabledevelopment.un.org/?menu=1300. Accessed 10 Apr 2019.
- 3.
WHO, UNICEF. Every Newborn: an action plan to end preventable deaths: Executive summary. Geneva World Heal Organ. 2014. http://www.everynewborn.org/Documents/Executive-summary_EN.pdf%0Awww.who.int/about/licensing/copyright_form/en/index.html.
- 4.
WHO, UNICEF. Reaching the Every Newborn National 2020 Milestones Country Progress, Plans and Moving Forward. 2017. http://apps.who.int/iris/bitstream/10665/255719/1/9789241512619-eng.pdf?ua=1.
- 5. World Health Organization. Standards for improving the quality of care for children and young adolescents in health facilities. 2018;:vi, 118 p.
- 6.
WHO/UNICEF/WB. Nurturing care for early childhood development: A framework for helping children survive and thrive to transform health and human potentia. 2018.
- 7. World Health Organization (WHO)/ UNICEF. Network For Improving Quality of Care for Maternal, Newborn and Child Health (vision). 2017; November 2010:14–6. http://www.qualityofcarenetwork.org/sites/default/files/brief 3 QoC vision_0.pdf.
- 8.
World Health Organization (WHO). Standards for improving the quality of care for small and sick newborns in health facilities. Geneva; 2020. https://www.who.int/publications/i/item/9789240010765.
- 9. Curtis K, Foster K, Mitchell R, Van C. Models of Care Delivery for Families of Critically Ill Children: An Integrative Review of International Literature. J Pediatr Nurs. 2016;31:330–41. pmid:26699441
- 10. Bohren MA, Vogel JP, Hunter EC, Lutsiv O, Makh SK, Souza JP, et al. The Mistreatment of Women during Childbirth in Health Facilities Globally: A Mixed-Methods Systematic Review. PLoS Med. 2015;12:1–32. pmid:26126110
- 11. Bowser D, Hill K. Exploring Evidence for Disrespect and Abuse in Facility-Based Childbirth. 2010.
- 12. Abuya T, Warren CE, Miller N, Njuki R, Ndwiga C, Maranga A, et al. Exploring the prevalence of disrespect and abuse during childbirth in Kenya. PLoS One. 2015;10:1–13. pmid:25884566
- 13. Warren CE, Njue R, Ndwiga C, Abuya T. Manifestations and drivers of mistreatment of women during childbirth in Kenya: Implications for measurement and developing interventions. BMC Pregnancy Childbirth. 2017;17:1–14.
- 14. Abuya T, Sripad P, Ritter J, Ndwiga C, Warren CE. Measuring mistreatment of women throughout the birthing process: implications for quality of care assessments. Reprod Health Matters. 2018;26:48–61. pmid:30212308
- 15. Sacks E. Defining disrespect and abuse of newborns: A review of the evidence and an expanded typology of respectful maternity care Prof. Suellen Miller. Reprod Health. 2017;14:1–8.
- 16. Altimier L, Phillips R. The Neonatal Integrative Developmental Care Model: Advanced Clinical Applications of the Seven Core Measures for Neuroprotective Family-centered Developmental Care. Newborn Infant Nurs Rev. 2016;16:230–44.
- 17. Arksey H, O’Malley L. Scoping studies: Towards a methodological framework. Int J Soc Res Methodol Theory Pract. 2005.
- 18. Munn Z, Peters MDJ, Stern C, Tufanaru C, McArthur A, Aromataris E. Systematic review or scoping review? Guidance for authors when choosing between a systematic or scoping review approach. BMC Med Res Methodol. 2018;18:1–7.
- 19. Tricco AC, Lillie E, Zarin W, O’Brien KK, Colquhoun H, Levac D, et al. PRISMA extension for scoping reviews (PRISMA-ScR): Checklist and explanation. Ann Intern Med. 2018;169:467–73. pmid:30178033
- 20. New K, Durairaj A, Robb-McCord J, Khadka N. Nurturing care for small and sick newborns: evidence review and country case studies. 2019; August.
- 21. Lungu EA, Biesma R, Chirwa M, Darker C. Healthcare seeking practices and barriers to accessing under-five child health services in urban slums in Malawi: A qualitative study. BMC Health Serv Res. 2016;16:1–11. pmid:27542836
- 22. Costello A. Quality, Equity and Dignity for Preterm Infants Through Family-centered Care. Indian Pediatr. 2017;54:451–2. pmid:28667713
- 23. Tamburlini G, Siupsinskas G, Bacci A. Quality of maternal and neonatal care in Albania, Turkmenistan and Kazakhstan: A systematic, standard-based, participatory assessment. PLoS One. 2011;6. pmid:22216110
- 24.
World Health Organization (WHO)/ UNICEF. Protecting, promoting and supporting breastfeeding: the Baby-friendly Hospital Initiative for small, sick and preterm newborns. Geneva; 2020. https://www.who.int/publications/i/item/9789240005648.
- 25. Forcada-Guex M, Borghini A, Pierrehumbert B, Ansermet F, Muller-Nix C. Prematurity, maternal posttraumatic stress and consequences on the mother-infant relationship. Early Hum Dev. 2011;87:21–6. pmid:20951514
- 26. Gangi S, Dente D, Bacchio E, Giampietro S, Terrin G, De Curtis M. Posttraumatic Stress Disorder in Parents of Premature Birth Neonates. Procedia—Soc Behav Sci. 2013;82:882–5.
- 27. Guimarães H, Guedes B, Almeida S. Parents in the Neonatal Intensive Care Unit of “Hospital de São João” (Porto, Portugal). J Pediatr Neonatal Individ Med. 2015;4:e040120.
- 28. Chan G, Bergelson I, Smith ER, Skotnes T, Wall S. Barriers and enablers of kangaroo mother care implementation from a health systems perspective: A systematic review. Health Policy Plan. 2017;32:1466–75. pmid:28973515
- 29. Psaila K, Kruske S, Fowler C, Homer C, Schmied V. Smoothing out the transition of care between maternity and child and family health services: Perspectives of child and family health nurses and midwives’. BMC Pregnancy Childbirth. 2014;14:1–13.
- 30. Ellis A, Chebsey C, Storey C, Bradley S, Jackson S, Flenady V, et al. Systematic review to understand and improve care after stillbirth: A review of parents’ and healthcare professionals’ experiences. BMC Pregnancy Childbirth. 2016;16:1–19. pmid:26810220
- 31. Guiller CA, Dupas G, Pettengill MAM. Suffering eases over time: the experience of families in the care of children with congenital anomalies. Rev Lat Am Enfermagem. 2009. pmid:19820856
- 32. Horwood C, Haskins L, Luthuli S, McKerrow N. 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;19:1–13.
- 33. Roland D, Snelson E. “So why didn’t you think this baby was ill?” Decision-making in acute paediatrics. Arch Dis Child Educ Pract Ed. 2019;104:43–8. pmid:29496733
- 34. Veronez M, Borghesan NAB, Corrêa DAM, Higarashi IH. Experience of mothers of premature babies from birth to discharge: notes of field journals. Rev Gauch Enferm. 2017;38:e60911.
- 35. Kuo DZ, Houtrow AJ, Arango P, Kuhlthau KA, Simmons JM, Neff JM. Family-centered care: Current applications and future directions in pediatric health care. Matern Child Health J. 2012;16:297–305. pmid:21318293
- 36. Klug J, Hall C, Delaplane EA, Meehan C, Negrin K, Mieczkowski D, et al. Promoting Parent Partnership in Developmentally Supportive Care for Infants in the Pediatric Cardiac Intensive Care Unit. Adv Neonatal Care. 2020;20:161–70. pmid:32224821
- 37. Brødsgaard A, Pedersen JT, Larsen P, Weis J. Parents’ and nurses’ experiences of partnership in neonatal intensive care units: A qualitative review and meta-synthesis. J Clin Nurs. 2019;28:3117–39. pmid:31112337
- 38. Kasat K, Stoffels G, Ellington M. Improving communication with parents: the Neonatal Intensive Care Unit Empathy Workshop. J Perinatol. 2020;40:1423–32. pmid:32712622
- 39. De Graft-Johnson J, Vesel L, Rosen HE, Rawlins B, Abwao S, Mazia G, et al. Cross-sectional observational assessment of quality of newborn care immediately after birth in health facilities across six sub-Saharan African countries. BMJ Open. 2017;7. pmid:28348194
- 40. Camacho Ávila M, Fernández Medina IM, Jiménez-López FR, Granero-Molina J, Hernández-Padilla JM, Hernández Sánchez E, et al. Parents’ Experiences about Support Following Stillbirth and Neonatal Death. Adv Neonatal Care. 2020;20:151–60. pmid:31917696
- 41. Baughcum AE, Fortney CA, Winning AM, Dunnells ZDO, Humphrey LM, Gerhardt CA. Healthcare Satisfaction and Unmet Needs among Bereaved Parents in the NICU. Adv Neonatal Care. 2020;20:118–26. pmid:31569093
- 42. Onarheim KH, Sisay MM, Gizaw M, Moland KM, Miljeteig I. What if the baby doesn’t survive? Health-care decision making for ill newborns in Ethiopia. Soc Sci Med. 2017;195 October:123–30. pmid:29175226
- 43. Bee M, Shiroor A, Hill Z. Neonatal care practices in sub-Saharan Africa: a systematic review of quantitative and qualitative data. J Health Popul Nutr. 2018;37:9. pmid:29661239
- 44. Bazzano AN, Kaji A, Felker-Kantor E, Bazzano LA, Potts KS. Qualitative studies of infant and young child feeding in lower-income countries: A systematic review and synthesis of dietary patterns. Nutrients. 2017;9. pmid:29057842
- 45. Kavle JA, Picolo M, Buccini G, Barros I, Dillaway CH, Pérez-Escamilla R. Strengthening counseling on barriers to exclusive breastfeeding through use of job AIDS in Nampula, Mozambique. 2019.
- 46. Shah BD, Dwivedi LK. Newborn care practices: A case study of tribal women, Gujarat. Health (Irvine Calif). 2013;05:29–40.
- 47. Callaghan-koru JA, Rawlins B, Callaghan-koru JA, Seifu A, Tholandi M, Graft-johnson J De, et al. Newborn care practices at home and in health facilities in 4 regions of Ethiopia Newborn care practices at home and in health facilities in 4 regions of Ethiopia. BMC Pediatr. 2013;13:1–12.
- 48. Britto PR, Lye SJ, Proulx K, Yousafzai AK, Matthews SG, Vaivada T, et al. Nurturing care: promoting early childhood development. Lancet. 2017;389:91–102. pmid:27717615
- 49.
CMNRP’s Family Advisory Commitee. Family-Centred Care (FCC): A Framework For Putting Childbearing Families First. 2015. http://www.cmnrp.ca/uploads/documents/FCC_framework_FINAL.pdf.
- 50. Purdy IB, Craig JW, Zeanah P. NICU discharge planning and beyond: Recommendations for parent psychosocial support. J Perinatol. 2015;35:S24–8. pmid:26597802
- 51. Westrup B. Family-centered developmentally supportive care. Neoreviews. 2014;15.
- 52. Verma A, Maria A, Pandey RM, Hans C, Verma A, Sherwani F. Family-centered care to complement care of sick newborns: A randomized controlled trial. Indian Pediatr. 2017;54:455–9. pmid:28667715
- 53. O’Brien K, Robson K, Bracht M, Cruz M, Lui K, Alvaro R, et al. Effectiveness of Family Integrated Care in neonatal intensive care units on infant and parent outcomes: a multicentre, multinational, cluster-randomised controlled trial. Lancet Child Adolesc Heal. 2018;2:245–54. pmid:30169298
- 54. Sarin E, Maria A. Acceptability of a family-centered newborn care model among providers and receivers of care in a Public Health Setting: a qualitative study from India. BMC Health Serv Res. 2019;19:184. pmid:30898170
- 55. Celenza JF, Zayack D, Buus-Frank ME, Horbar JD. Family Involvement in Quality Improvement: From Bedside Advocate to System Advisor. Clin Perinatol. 2017;44:553–66. pmid:28802339
- 56. Powers SA, Taylor K, Tumin D, Kohler JA. Measuring Parental Presence in the Neonatal Intensive Care Unit. Am J Perinatol. 2020. pmid:32819019
- 57. O’Brien K, Bracht M, Macdonell K, McBride T, Robson K, O’Leary L, et al. A pilot cohort analytic study of Family Integrated Care in a Canadian neonatal intensive care unit. BMC Pregnancy Childbirth. 2013;13 Suppl 1 Suppl 1:S12. pmid:23445639
- 58. Skene C, Franck L, Curtis P, Gerrish K. Parental Involvement in Neonatal Comfort Care. JOGNN—J Obstet Gynecol Neonatal Nurs. 2012. pmid:22789154
- 59. Carman KL, Dardess P, Maurer M, Sofaer S, Adams K, Bechtel C, et al. Patient and family engagement: A framework for understanding the elements and developing interventions and policies. Health Aff. 2013. pmid:23381514
- 60. Eden LM, Callister LC. Parent Involvement in End-of-Life Care and Decision Making in the Newborn Intensive Care Unit: An Integrative Review. J Perinat Educ. 2010;19:29–39. pmid:21197127
- 61. Gewa CA, Chepkemboi J. Maternal knowledge, outcome expectancies and normative beliefs as determinants of cessation of exclusive breastfeeding: A cross-sectional study in rural Kenya. BMC Public Health. 2016;16:1–9. pmid:26957007
- 62. Aein F, Alhani F, Mohammadi E, Kazemnejad A. Parental participation and mismanagement: A qualitative study of child care in Iran. Nurs Heal Sci. 2009;11:221–7. pmid:19689629
- 63. Uhl T, Fisher K, Docherty SL, Brandon DH. Insights into Patient and Family-Centered Care Through the Hospital Experiences of Parents. JOGNN—J Obstet Gynecol Neonatal Nurs. 2013;42:121–31. pmid:23316896
- 64. Melo EM de OP de, Ferreira PL, Lima RAG de, Mello DF de. The involvement of parents in the healthcare provided to hospitalzed children. Rev Lat Am Enfermagem. 2014. pmid:25029054
- 65. Hei M, Gao X, Gao X, Nong S, Zhang A, Zhang Q, et al. Is family integrated care in neonatal intensive care units feasible and good for preterm infants in China: Study protocol for a cluster randomized controlled trial. Trials. 2016;17:1–8. pmid:26758621
- 66. Franck LS, O’Brien K. The evolution of family-centered care: From supporting parent-delivered interventions to a model of family integrated care. Birth Defects Res. 2019;111:1044–59. pmid:31115181
- 67. Naef R, Kläusler-Troxler M, Ernst J, Huber S, Dinten-Schmid B, Karen T, et al. Translating family systems care into neonatology practice: A mixed method study of practitioners’ attitudes, practice skills and implementation experience. Int J Nurs Stud. 2020;102:103448. pmid:31726312
- 68. Maatman SMO, Bohlin K, Lilliesköld S, Garberg HT, Uitewaal-Poslawky I, Kars MC, et al. Factors Influencing Implementation of Family-Centered Care in a Neonatal Intensive Care Unit. Front Pediatr. 2020;8 May.
- 69. Richards CA, Starks H, O’Connor MR, Bourget E, Hays RM, Doorenbos AZ. Physicians Perceptions of Shared Decision-Making in Neonatal and Pediatric Critical Care. Am J Hosp Palliat Med. 2018. pmid:28990396
- 70. Nakphong MK, Sacks E, Opot J, Sudhinaraset M. Separating Newborns from Mothers and Maternal Consent for Newborn Care and the Association with Health Care Satisfaction, Use and Breastfeeding: Findings from a longitudinal survey in Kenya. 2020. https://www.medrxiv.org/content/10.1101/2020.10.19.20213074v1.full.pdf.
- 71. Ballantyne M, Orava T, Bernardo S, McPherson AC, Church P, Fehlings D. Parents’ early healthcare transition experiences with preterm and acutely ill infants: a scoping review. Child Care Health Dev. 2017;43:783–96. pmid:28370174
- 72. Bucher HU, Klein SD, Hendriks MJ, Baumann-Hölzle R, Berger TM, Streuli JC, et al. Decision-making at the limit of viability: Differing perceptions and opinions between neonatal physicians and nurses. BMC Pediatr. 2018.
- 73. Richardson B, Falconer A, Shrestha J, Cassidy C, Campbell-Yeo M, Curran JA. Parent-targeted education regarding infant pain management delivered during the perinatal period: A scoping review. J Perinat Neonatal Nurs. 2020;34:56–65. pmid:31996645
- 74. Gondwe MJ, Gombachika B, Majamanda MD. Experiences of caregivers of infants who have been on bubble continuous positive airway pressure at Queen Elizabeth Central Hospital, Malawi: A descriptive qualitative study. Malawi Med J. 2017;29:5–10.
- 75. Aarthun A, Øymar KA, Akerjordet K. Parental involvement in decision-making about their child’s health care at the hospital. Nurs Open. 2019. pmid:30534394
- 76. Tokhi M, Comrie-Thomson L, Davis J, Portela A, Chersich M, Luchters S. Involving men to improve maternal and newborn health: A systematic review of the effectiveness of interventions. PLoS One. 2018;13:1–16. pmid:29370258
- 77. Goggin K, Wexler C, Nazir N, Staggs VS, Gautney B, Okoth V, et al. Predictors of Infant Age at Enrollment in Early Infant Diagnosis Services in Kenya. AIDS Behav. 2016;20:2141–50. pmid:27108002
- 78. Khan A, Spector ND, Baird JD, Ashland M, Starmer AJ, Rosenbluth G, et al. Patient safety after implementation of a coproduced family centered communication programme: Multicenter before and after intervention study. BMJ. 2018;363.
- 79. Treyvaud K, Spittle A, Anderson PJ, O’Brien K. A multilayered approach is needed in the NICU to support parents after the preterm birth of their infant. Early Hum Dev. 2019;139. pmid:31471000
- 80. Rea KE, Rao P, Hill E, Saylor KM, Cousino MK. Families’ experiences with pediatric family-centered rounds: A systematic review. Pediatrics. 2018;141. pmid:29437931
- 81. Larson E, Leslie HH, Kruk ME. The determinants and outcomes of good provider communication: A cross-sectional study in seven African countries. BMJ Open. 2017;7. pmid:28674138
- 82. Lucas JE, Richter LM, Daelmans B. Care for Child Development: an intervention in support of responsive caregiving and early child development. Child Care Health Dev. 2018;44:41–9. pmid:29235167
- 83. Nair M, Yoshida S, Lambrechts T, Boschi-Pinto C, Bose K, Mason EM, et al. Facilitators and barriers to quality of care in maternal, newborn and child health: A global situational analysis through metareview. BMJ Open. 2014;4. pmid:24852300
- 84. Ali M, Al-Samarrai M, Ahmed S, Jadoo A. Impact of training on practical skills of Iraqi health providers towards integrated management of neonatal and childhood illness-a multi-center cross sectional study. J Ideas Heal. 2018;1:1–6. www.jidhealth.com.
- 85. Rowe AK, Labadie G, Jackson D, Vivas-Torrealba C, Simon J. Improving health worker performance: an ongoing challenge for meeting the sustainable development goals. BMJ. 2018;362:k2813. pmid:30061366
- 86. Richter LM, Rochat TJ, Hsiao C, Zuma TH. Evaluation of a Brief Intervention to Improve the Nursing Care of Young Children in a High HIV and AIDS Setting. Nurs Res Pract. 2012;2012:1–8.
- 87. Richter LM, Daelmans B, Lombardi J, Heymann J, Boo FL, Behrman JR, et al. Investing in the foundation of sustainable development: pathways to scale up for early childhood development. Lancet. 2017;389:103–18. pmid:27717610
- 88. Alliance WR. Respectful maternity care charter. White Ribb Alliance. 2011.
- 89. Doctor H V., Nkhana-Salimu S, Abdulsalam-Anibilowo M. Health facility delivery in sub-Saharan Africa: Successes, challenges, and implications for the 2030 development agenda. BMC Public Health. 2018;18:1–12.
- 90. The Partnership for Maternal & Child Health. Opportunities for Africa ‘ s Newborns. 2010.
- 91. Oluoch D, Murphy G, Gathara D, Abuya N, Nzinga J, English M, et al. Neonatal nursing policy and practice in Kenya: Key stakeholders and their views on task-shifting as an intervention to improve care quality. [version 1; peer review: 1 approved, 1 approved with reservations]. Wellcome Open Res. 2018;3:1–11.
- 92.
World Health Organization (WHO). Human resource strategies to improve newborn care in health facilities in low-and middle-income countries. Geneva; 2020. http://dx.doi.org/10.1016/j.cirp.2016.06.001%0A http://dx.doi.org/10.1016/j.powtec.2016.12.055%0A https://doi.org/10.1016/j.ijfatigue.2019.02.006%0A https://doi.org/10.1016/j.matlet.2019.04.024%0A https://doi.org/10.1016/j.matlet.2019.127252%0A http://dx.doi.o.
- 93. Emaway Altaye D, Karim AM, Betemariam W, Fesseha Zemichael N, Shigute T, Scheelbeek P. Effects of family conversation on health care practices in Ethiopia: A propensity score matched analysis. BMC Pregnancy Childbirth. 2018;18 Suppl 1. pmid:30255781
- 94. Flenady V, Boyle F, Koopmans L, Wilson T, Stones W, Cacciatore J. Meeting the needs of parents after a stillbirth or neonatal death. BJOG. 2014;121:137–40. pmid:25236648
- 95. So S, Rogers A, Patterson C, Drew W, Maxwell J, Darch J, et al. Parental experiences of a developmentally focused care program for infants and children during prolonged hospitalization. J Child Heal Care. 2014;18:156–67. pmid:23723301
- 96. Ncube RK, Barlow H, Mayers PM. A life uncertain—My baby’s vulnerability: Mothers’ lived experience of connection with their preterm infants in a Botswana neonatal intensive care unit. Curationis. 2016;39:e1–9.
- 97. Neogi SB, Khanna R, Chauhan M, Sharma J, Gupta G, Srivastava R, et al. Inpatient care of small and sick newborns in healthcare facilities. J Perinatol. 2016;36:S18–23. pmid:27924106
- 98. Sosu EM, Schmidt P. Economic deprivation and its effects on childhood conduct problems: The mediating role of family stress and investment factors. Front Psychol. 2017;8 SEP:1–21.
- 99. Boland L, Graham ID, Légaré F, Lewis K, Jull J, Shephard A, et al. Barriers and facilitators of pediatric shared decision-making: A systematic review. Implement Sci. 2019;14. pmid:30658670
- 100. Pham MT, Rajić A, Greig JD, Sargeant JM, Papadopoulos A, Mcewen SA. A scoping review of scoping reviews: Advancing the approach and enhancing the consistency. Res Synth Methods. 2014;5:371–85. pmid:26052958