'Not a goal, but a given': Neonatal care participation through parents' perspective, a cross-sectional study.

AIM: To explore parents' perspectives regarding participation in neonatal care, with focus on the family integrated care (FICare) model utilised as a tool to enhance parent-infant closeness. Additionally, we describe experiences in different architectural settings. METHODS: An online survey, categorised by four FICare pillars, was distributed through social media to parents of newborns hospitalised to Dutch neonatal wards between 2015 and 2020. Quantitative findings were summarised using descriptive statistics, while open-ended responses were thematically analysed. RESULTS: Among the 344 respondents (98% mothers), most reported feeling involved in care (315/340). However, 79% also felt separated from their infant (265/337). Irrespective of architectural settings, parents reported incomplete implementation of FICare pillars: 14% was invited to educational sessions (parent education), 51% discussed family-specific care plans (staff education), 21% was facilitated in connecting with veteran parents (psychosocial support) and 22% received couplet-care (environment). Although 65% of parents were invited to attend clinical rounds, 32% actively participated in decision making. Thematic analysis revealed fundamentals for feeling welcome on the ward, peer-to-peer support, psychosocial support and participation in clinical rounds. CONCLUSION: Overall, parents expressed satisfaction with participation in neonatal care. However, structural implementation of FICare lacks. Regardless of architecture, expanding parent participation beyond presence requires attention.

Rebalancing of professional identity roles in an integrated maternity and neonatal care setting designed to increase parent autonomy: a qualitative study among health professionals.

This case-based qualitative study explored the professional identity as experienced by health professionals working in an integrated maternal-neonatal ward when their practice changed from a "paternalistic" model, in which physicians and nurses were in charge, to a shared or "consumerist" model, to increase parent autonomy. We analyzed transcripts of focus group discussions and interviews with 60 health professionals on their experiences with empowering parents and described factors associated with themes of professional identity. The changes most affecting professional identity were the constant proximity of parents to their newborns and the single-family room design. These changes influenced three themes of professional identity: (1) connectedness and relationships (2) communication, and (3) competencies. A fourth theme, values, beliefs, and ethics, affected how the health professionals coped with the changes in the first three themes. When empowering parents of newborns in a hospital setting, health professionals experience beneficial as well as threatening shifts in their professional identities. Values, beliefs, and ethics associated with family integrated care helped health professionals to embrace their new roles, but other values, beliefs and ethics could create barriers. Continuous professional identity development in a patient-inclusive team is a topic for future research.

In-hospital education of parents of newborns may benefit from competency-based education: A qualitative focus group and interview study among health professionals.

AIMS/OBJECTIVES: The aim of this study was to appraise health professionals' self-reported practices in educating parents of hospitalised newborns from the perspective of competency-based education and to identify areas for improvement of parental learning. BACKGROUND: Patient education is essential to achieve autonomy in parents of hospitalised newborns. The literature provides descriptions of the use of various components of competency-based education in patient education. This suggests that competency-based education is a valuable concept for patient education. DESIGN: A case-based qualitative study. METHODS: Three focus group discussions were conducted and 28 semi-structured interviews with 45 health professionals who practice in a hospital setting that is designed to empower parents. The data were analysed with a framework analysis approach, using a framework of competency-based education themes for a combined inductive and deductive content data analysis. The recommendations of the Standards for Reporting Qualitative Research checklist were followed. FINDINGS: Two themes of competency-based education emerged as evidently operationalised: (1) 'Learning climate' and (2) 'Role modeling'. Five themes emerged as incompletely operationalised: (1) 'Parent curriculum based on inter-professional consensus'; (2) 'Transparency about the competencies needed'; (3) 'Access to teaching'; (4) 'Assessing and reporting results'; and (5) 'Proficiency statements based on autonomy expectations'. Two themes did not emerge: (1) 'Empowering parents to be active learners' and (2) 'Evaluation and improvement of the education program'. CONCLUSIONS: Parent education is at risk of being merely on a master-apprentice model and may be more effective if it is designed on competency-based education principles. Identified areas for improvement are empowering parents to be 'active learners' and by involving them in the evaluation and improvement of the educational program. Parent education in neonatal health care may benefit from an appraisal based on competency-based education themes. RELEVANCE TO CLINICAL PRACTICE: Appraising parent education based on competency-based education principles is feasible for improving the learning process towards parent autonomy.

Parents' Experiences With a Model of Integrated Maternity and Neonatal Care Designed to Empower Parents.

OBJECTIVE: To explore the experiences of parents with an integrated maternity and neonatal ward designed to empower parents by providing family-integrated care (FICare) to mother-newborn couplets in single-family rooms. DESIGN: A qualitative analysis with a contextual constructivist approach. SETTING: An integrated maternity and neonatal level 2 ward designed to empower parents in a teaching hospital in Amsterdam, the Netherlands. Maternity and neonatal care, up to and including highly complex care, is provided to mother-newborn couplets in single-family rooms according to the principles of FICare. PARTICIPANTS: Twenty-seven mothers and nine fathers of newborns who were hospitalized for at least 7 days. METHODS: We held four focus group discussions and eight semistructured interviews 1 to 3 months after discharge of the newborn to explore which experiences (mechanisms) facilitated or impeded aspects of parent empowerment (outcomes) under which specific conditions of the integrated infrastructure (contexts). We used the realist evaluation model to analyze the data. RESULTS: Our analysis revealed five themes of parent empowerment (outcomes): Feeling Respected, Gaining Self-Management Tools, Insights Into the Newborn's Condition, Perceived Control, and Self-Efficacy. For each theme, participants reported facilitating and impeding experiences (mechanisms) that were initiated and influenced by the combination of single-family rooms, couplet care, rooming-in, and FICare (contexts). Unrestricted physical proximity to their newborns, 24 hours per day, in a safe private environment offered parents intensive learning experiences through active participation in care. It helped them to achieve independent parenthood at the time of discharge, but it also generated challenges such as power conflicts with the staff; prioritizing care for themselves, siblings, or the newborn; feelings of isolation; and lack of sleep. CONCLUSION: Providing FICare to mother-newborn couplets in single-family rooms offers parents an intensive learning context for independent parenthood at the time of discharge. Health care professionals should be aware of the challenges and facilitators experienced by parents in the context of close physical proximity to their newborns 24 hours per day in single-family rooms. This awareness will allow them to better support parents in their empowerment process toward independent parenthood at the time of discharge.

Development and psychometric evaluation of the CO-PARTNER tool for collaboration and parent participation in neonatal care.

BACKGROUND: Active parent participation in neonatal care and collaboration between parents and professionals during infant hospitalization in the neonatal intensive care unit (NICU) is beneficial for infants and their parents. A tool is needed to support parents and to study the effects and implementation of parent-partnered models of neonatal care. METHODS: We developed and psychometrically evaluated a tool measuring active parent participation and collaboration in neonatal care within six domains: Daily Care, Medical Care, Acquiring Information, Parent Advocacy, Time Spent with Infant and Closeness and Comforting the Infant. Items were generated in focus group discussions and in-depth interviews with professionals and parents. The tool was completed at NICU-discharge by 306 parents (174 mothers and 132 fathers) of preterm infants. Subsequently, we studied structural validity with confirmatory factor analysis (CFA), construct validity, using the Average Variance Extracted and Heterotrait-Monotrait ratio of correlations, and hypothesis testing with correlations and univariate linear regression. For internal consistency we calculated composite reliability (CR). We performed multiple imputations by chained equations for missing data. RESULTS: A 31 item tool for parent participation and collaboration in neonatal care was developed. CFA revealed high factor loadings of items within each domain. Internal consistency was 0.558 to 0.938. Convergent validity and discriminant validity were strong. Higher scores correlated with less parent depressive symptoms (r = -0.141, 95%CI -0.240; -0.029, p = 0.0141), less impaired parent-infant bonding (r = -0.196, 95%CI -0.302; -0.056, p<0.0001), higher parent self-efficacy (r = 0.228, 95%CI 0.117; 0.332, p<0.0001), and higher parent satisfaction (r = 0.197, 95%CI 0.090; 0.308, p = 0.001). Parents in a family integrated care model had higher scores than in standard care (beta 6.020, 95%CI 4.144; 7.895, p<0.0001) and mothers scored higher than fathers (beta 2.103,95%CI 0.084; 4.121, p = 0.041). CONCLUSION: The CO-PARTNER tool explicitly measures parents' participation and collaboration with professionals in neonatal care incorporating their unique roles in care provision, leadership, and connection to their infant. The tool consists of 31 items within six domains with good face, content, construct and structural validity.

Integration of Maternity and Neonatal Care to Empower Parents.

OBJECTIVE: To describe the transition from a traditional hospital design with separate maternity and neonatal departments to a design in which maternity and neonatal health care infrastructures are integrated to empower parents. DESIGN: A descriptive, qualitative analysis. SETTING: A mother and child center in a teaching hospital in Amsterdam. PARTICIPANTS: Six staff members who were involved in the transition. METHODS: We analyzed the content of all relevant policy reports and other related documents that were produced during the transition from April 2010 to October 2014. This content was supplemented with in-depth, semistructured interviews with the six participants. We used thematic analysis and Bravo et al.'s model of patient empowerment to analyze the documents and the qualitative interview data. RESULTS: We identified eight themes. At the health care system level, the four themes were Joint Vision and Goal, Integration of Three Wards Into One With Single-Family Rooms, Reorganization of the Health Care Team, and New Equipment. At the health care provider level, the three themes were Training for Extension of Professional Goals, Intensified Coaching for Parents, and Implementing Patient Centeredness. The single theme at the patient level was Opinions and Experiences of Parents. CONCLUSION: We found a good fit between the new design and Bravo et al.'s model of patient empowerment. Challenges that remain include the adaptation of staff training programs and further development of the infrastructure in collaboration with staff and parents. The experiences of parents and staff members will be evaluated in future studies.