The Work of Mothering in the NICU: A Critical Analysis of Alberta Family Integrated Care Parent Journals.

BACKGROUND: Integrating parents into the care of their infants in the neonatal intensive care unit (NICU) is vital for both parents and infants. Yet, parents are often not fully involved in important decision-making and care, even when practices are family- and patient-centered. Alberta Family Integrated Care (FICare) is a model of care designed to support integration of parents into their infant's care. PURPOSE: The aim of this study was to describe and examine how mothers' work was coordinated by institutional processes when participating in Alberta FICare. METHODS: We used institutional ethnography to analyze written entries in Alberta FICare parent journals to show points of tension mothers experienced in the NICU. RESULTS: We illustrated the institutional activities that intersect with parental work of being present in the NICU. We argue that the journal text and the primary discourses that mothers are tuned to organize the way they knew and thought about their infant. Managing everyday NICU rules, navigating constant and unexpected changes, and the work of feeding their infant created tension. Mothers focused on milk supply, weight gain, and transition from gavage to nipple feeds. We show how mothers' activities were coordinated by practices that prioritize progression toward discharge rather than supporting them through the roller coaster of emotions and practical challenges of being present in the NICU. IMPLICATIONS FOR PRACTICE: This illustration of institutional systems and processes may assist practitioners to understand the barriers mothers face when caring for their infants in the NICU.

Effectiveness of Alberta Family Integrated Care on infant length of stay in level II neonatal intensive care units: a cluster randomized controlled trial.

BACKGROUND: Parents of infants in neonatal intensive care units (NICUs) are often unintentionally marginalized in pursuit of optimal clinical care. Family Integrated Care (FICare) was developed to support families as part of their infants' care team in level III NICUs. We adapted the model for level II NICUs in Alberta, Canada, and evaluated whether the new Alberta FICare™ model decreased hospital length of stay (LOS) in preterm infants without concomitant increases in readmissions and emergency department visits. METHODS: In this pragmatic cluster randomized controlled trial conducted between December 15, 2015 and July 28, 2018, 10 level II NICUs were randomized to provide Alberta FICare™ (n = 5) or standard care (n = 5). Alberta FICare™ is a psychoeducational intervention with 3 components: Relational Communication, Parent Education, and Parent Support. We enrolled mothers and their singleton or twin infants born between 32 0/7 and 34 6/7 weeks gestation. The primary outcome was infant hospital LOS. We used a linear regression model to conduct weighted site-level analysis comparing adjusted mean LOS between groups, accounting for site geographic area (urban/regional) and infant risk factors. Secondary outcomes included proportions of infants with readmissions and emergency department visits to 2 months corrected age, type of feeding at discharge, and maternal psychosocial distress and parenting self-efficacy at discharge. RESULTS: We enrolled 654 mothers and 765 infants (543 singletons/111 twin cases). Intention to treat analysis included 353 infants/308 mothers in the Alberta FICare™ group and 365 infants/306 mothers in the standard care group. The unadjusted difference between groups in infant hospital LOS (1.96 days) was not statistically significant. Accounting for site geographic area and infant risk factors, infant hospital LOS was 2.55 days shorter (95% CI, - 4.44 to - 0.66) in the Alberta FICare™ group than standard care group, P = .02. Secondary outcomes were not significantly different between groups. CONCLUSIONS: Alberta FICare™ is effective in reducing preterm infant LOS in level II NICUs, without concomitant increases in readmissions or emergency department visits. A small number of sites in a single jurisdiction and select group infants limit generalizability of findings. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT02879799 , retrospectively registered August 26, 2016.

An Exploratory Study of Person-Centered Care in a Large Urban Hemodialysis Program in Canada Using a Qualitative Case-Study Methodology.

BACKGROUND: Person-centered care (PCC) can benefit patients, clinical staff, and health care organizations, but has not yet been widely adopted into practice. Hemodialysis is a unique care environment in which clinical staff can be involved with patients for protracted periods of time each week and often over a number of years. While kidney care is arguably more holistic than other chronic condition management programs, most patients requiring hemodialysis do not receive care that is optimally person-centered. OBJECTIVE: The purpose of this research was to explore how care is experienced and provided in a large urban hemodialysis program in western Canada in relation to key principles of PCC. In addition, we wanted to understand what factors at an individual, unit, and organizational level facilitate or inhibit PCC in this environment. METHODS: We used a qualitative case-study approach to explore multiple perspectives of care provision using a number of data sources including semi-structured interviews with patients, family members, clinical staff, and administrative staff, as well as observing patterns of clinical practice in local hemodialysis units. FINDINGS: In our study of a single hemodialysis program, we found limited evidence of PCC. Overall, patients reported that their care was good and they had positive relationships with their care team. However, they did not feel involved in decisions regarding their care or consider it to be individualized. In general, providers acknowledged the potential benefits of PCC but were constrained in their practice by a number of factors, including individual perceptions of their role, a prescriptive care environment, and an organizational focus on managing demand. CONCLUSIONS: Evidence of PCC within hemodialysis services was limited, with a number of individual, unit level, and organizational barriers mitigating against its adoption and spread.

CONTEXTE: Les soins axés sur le patient sont bénéfiques pour les patients eux-mêmes, mais également pour le personnel clinique et les établissements de santé. Néanmoins, ils demeurent peu adoptés en pratique. L'hémodialyse constitue un contexte de soins unique où le personnel clinique est impliqué auprès des patients pendant de longues périodes chaque semaine et souvent, pendant plusieurs années. Les soins en néphrologie sont probablement plus holistiques que les autres programs de prise en charge des maladies chroniques, mais la plupart des patients qui nécessitent des traitements d'hémodialyse ne reçoivent toujours pas des soins individualisés. OBJECTIF: Cette étude visait à examiner, du point de vue des principes clés de la prestation de soins individualisés, la façon dont les soins sont prodigués et reçus dans un vaste program d'hémodialyse en milieu urbain dans l'Ouest canadien. Nous souhaitions également connaître les facteurs au niveau de l'individu, de l'unité de soins et de l'établissement de santé, qui facilitent ou entravent la pratique de soins davantage axés sur le patient dans un tel environnement. MÉTHODOLOGIE: Nous avons adopté une approche des études de cas qualitative pour examiner un certain nombre de modèles de prestation de soins en utilisant plusieurs sources de données, notamment des entretiens semi-structurés avec les patients, leurs proches et des membres du personnel clinique et administratif, et l'observation des modèles de pratique clinique dans les unités locales d'hémodialyse. RÉSULTATS: Dans notre étude, menée dans un seul program d'hémodialyse, nous avons recueilli peu de preuves d'une prestation de soins personnalisée. Dans l'ensemble, les patients ont indiqué recevoir de bons soins et entretenir de bonnes relations avec le personnel soignant; tout en ajoutant ne pas se sentir impliqués dans les décisions relatives à leurs soins, ni considérer que ces derniers étaient personnalisés. De leur côté, les fournisseurs de soins reconnaissaient les avantages potentiels des soins personnalisés, mais se disaient limités dans leur pratique par un certain nombre de facteurs, notamment la perception individuelle de leur rôle, un environnement de soins normatif et une orientation organisationnelle axée sur la gestion de la demande. CONCLUSION: Les données probantes attestant d'un program de soins individualisé dans le contexte de l'hémodialyse se sont avérées limitées; et un certain nombre d'obstacles, tant sur le plan individuel, de l'unité de soins que de l'établissement de santé, ont atténué l'adoption et la propagation de ces soins.

The health care system is making 'too much noise' to provide family-centred care in neonatal intensive care units: Perspectives of health care providers and hospital administrators.

AIM: To describe the perspectives of health care providers and hospital administrators on their experiences of providing care for infants in Level II neonatal intensive care units and their families. RESEARCH METHODS: We conducted 36 qualitative interviews with neonatal health care providers and hospital administrators and analysed data using a descriptive interpretive approach. SETTING: 10 Level II Neonatal Intensive Care Units in a single, integrated health care system in one Canadian province. FINDINGS: Three major themes emerged: (1) providing family-centred care, (2) working amidst health care system challenges, and (3) recommending improvements to the health care system. The overarching theme was that the health care system was making 'too much noise' for health care providers and hospital administrators to provide family-centred care in ways that would benefit infants and their families. Recommended improvements included: refining staffing models, enhancing professional development, providing tools to deliver consistent care, recognising parental capacity to be involved in care, strengthening continuity of care, supporting families to be with their infant, and designing family-friendly environments. CONCLUSION: When implementing family-centred care initiatives, health care providers and hospital administrators need to consider the complexity of providing care in Level II Neonatal Intensive Care Units, and recognise that health care system changes may be necessary to optimise implementation.

Family Integrated Care (FICare) in Level II Neonatal Intensive Care Units: study protocol for a cluster randomized controlled trial.

BACKGROUND: Every year, about 15 million of the world's infants are born preterm (before 37 weeks gestation). In Alberta, the preterm birth rate was 8.7% in 2015, the second highest among Canadian provinces. Approximately 20% of preterm infants are born before 32 weeks gestation (early preterm), and require care in a Level III neonatal intensive care unit (NICU); 80% are born moderate (32 weeks and zero days [320/7] to 336/7 weeks) and late preterm (340/7 to 366/7 weeks), and require care in a Level II NICU. Preterm birth and experiences in the NICU disrupt early parent-infant relationships and induce parental psychosocial distress. Family Integrated Care (FICare) shows promise as a model of care in Level III NICUs. The purpose of this study is to evaluate length of stay, infant and maternal clinical outcomes, and costs following adaptation and implementation of FICare in Level II NICUs. METHODS: We will conduct a pragmatic, cluster randomized controlled trial (cRCT) in ten Alberta Level II NICUs allocated to one of two groups: FICare or standard care. The FICare Alberta model involves three theoretically-based, standardized components: information sharing, parenting education, and family support. Our sample size of 181 mother-infant dyads per group is based on the primary outcome of NICU length of stay, 80% participation, and 80% retention at follow-up. Secondary outcomes (e.g., infant clinical outcomes and maternal psychosocial distress) will be assessed shortly after admission to NICU, at discharge and 2 months corrected age. We will conduct economic analysis from two perspectives: the public healthcare payer and society. To understand the utility, acceptability, and impact of FICare, qualitative interviews will be conducted with a subset of mothers at the 2-month follow-up, and with hospital administrators and healthcare providers near the end of the study. DISCUSSION: Results of this pragmatic cRCT of FICare in Alberta Level II NICUs will inform policy decisions by providing evidence about the clinical effectiveness and costs of FICare. TRIAL REGISTRATION: ClinicalTrials.gov, ID: NCT02879799 . Registered on 27 May 2016. Protocol version: 9 June 2016; version 2.