Comparison of family centered care with family integrated care and mobile technology (mFICare) on preterm infant and family outcomes: a multi-site quasi-experimental clinical trial protocol.

BackgroundFamily Centered Care (FCC) has been widely adopted as the framework for caring for infants in the Neonatal Intensive Care Unit (NICU) but it is not uniformly defined or practiced, making it difficult to determine impact. Previous studies have shown that implementing the Family Integrated Care (FICare) intervention program for preterm infants in the NICU setting leads to significant improvements in infant and family outcomes. Further research is warranted to determine feasibility, acceptability and differential impact of FICare in the US context. The addition of a mobile application (app) may be effective in providing supplemental support for parent participation in the FICare program and provide detailed data on program component uptake and outcomes.MethodsThis exploratory multi-site quasi-experimental study will compare usual FCC with mobile enhanced FICare (mFICare) on growth and clinical outcomes of preterm infants born at or before 33 weeks gestational age, as well as the stress, competence and self-efficacy of their parents. The feasibility and acceptability of using mobile technology to gather data about parent involvement in the care of preterm infants receiving FCC or mFICare as well as of the mFICare intervention will be evaluated (Aim 1). The effect sizes for infant growth (primary outcome) and for secondary infant and parent outcomes at NICU discharge and three months after discharge will be estimated (Aim 2).DiscussionThis study will provide new data about the implementation of FICare in the US context within various hospital settings and identify important barriers, facilitators and key processes that may contribute to the effectiveness of FICare. It will also offer insights to clinicians on the feasibility of a new mobile application to support parent-focused research and promote integration of parents into the NICU care team in US hospital settings.Trial registrationClinicalTrials.gov, ID NCT03418870. Retrospectively registered on December 18, 2017

Experiences of mothers of extremely preterm infants after hospital discharge

The purpose of this study was to describe and understand the experiences of mothers of extremely preterm infants during the first twelve months at home following discharge from a neonatal intensive care unit. A qualitative, interpretative approach using Gadamer's philosophical hermeneutics was carried out. One focus group and fifteen in-depth, semi-structured interviews were conducted twelve months after hospital discharge. Responses were recorded, transcribed and analyzed using computer-assisted qualitative data analysis. The study´s participants were twenty women. The following themes emerged from the data analysis: 1) 'The journey home: the discharge process', which included the sub-themes 'escaping the hospital environment: between desire and fear' and 'preparing parents for hospital discharge: practice and formal support'; and 2) 'The difficulty of living with an extremely preterm infant', including the sub-themes 'the challenge of an unexpected form of childcare', 'overprotection of and bond with a child with special needs' and 'disturbance in the social/familiar setting: when a mother becomes a nurse'. The process of hospital discharge and the first months at home are difficult. The birth and care of an extremely preterm infant affect the mothers' quality of life as well as their family and social life. Practice and early discharge programmes can make the discharge process easier. The knowledge and understanding of the experience of mothers of extremely preterm infants in the first months at home after hospital discharge could help healthcare professionals to develop educational strategies and counselling interventions in accordance with the mothers' needs. [Abstract copyright: Copyright © 2018 Elsevier Inc. All rights reserved.

Babies and Babble : parents’ experiences of the neonatal unit and the role of the Babble app : a thesis presented in partial fulfilment of the requirements for the degree Doctor of Clinical Psychology at Massey University, Auckland, New Zealand

Neonatal unit admission is commonly a highly distressing and difficult time for new parents, impacting their confidence in their parenting abilities and predisposing them to significant mental health difficulties (Ballantyne et al., 2017; Holditch-Davis & Miles, 2000). In response to admission, parents commonly report a need for clear, concise information and inclusion in neonatal care (Cleveland, 2008). Alongside the rise of technology and the prevalence of smartphones across the world, mobile health applications have been theorised as an effective method of delivering rapid, consistent and accessible information to health consumer populations. Within the neonatal sphere, such approaches have been growing in popularity, however, little research has focused on the development and efficacy of mobile health applications dedicated to needs of parents with an infant admitted to a neonatal unit. In response, MidCentral District Health Board has developed an informational mobile health application, Babble, for use in conjunction with traditional care formats and with the hopes of providing greater support to parents in neonatal units (Spargo & de Vries, 2018). Although utilised by parents, the Babble app is yet to be empirically evaluated and the impacts of its use are not well understood. In this thesis, an exploration as to parents’ experiences of the neonatal unit and the role of the Babble app is conducted in two parts. Study One explores the experiences of 449 parents with an infant admitted to a neonatal unit in New Zealand, across measures of distress, self-efficacy, how informed they felt during their infant’s admission, and their Babble app use. Study Two involved in-depth qualitative interviews with eight mothers from the Palmerston North neonatal unit, (where the Babble app originated), exploring their perspectives of their infant’s hospitalisation, and the Babble app itself. Study One showed that parents experienced moderate distress, felt reasonably informed and considered themselves to be somewhat confident in their parental role during their infant’s neonatal admission. The Babble app did not demonstrate any significant effect on any of the variables of interest. However, results indicated that the more informed parents felt, the less distress they experienced. This relationship was partially mediated by enhanced self-efficacy, suggesting the importance of information in supporting parental self-efficacy and reducing distress. Study Two expanded on these findings, identifying several key themes present in the experiences of mothers with infants admitted to a Level II+ neonatal unit. Firstly, findings indicated there were various ways in which mothers struggled with their parental role within a neonatal context, experiencing challenges related to managing their own expectations of the experience and asserting their role within the unit. Consistent and supportive relationships with staff, family, friends, and their partners, were seen as influential in the maternal experience. Most significantly, good communication and strong relationships with staff were seen to improve maternal confidence. Information was highly valued by mothers, with some variation in their interactions with information, depending on individual needs and styles. The Babble app was considered a useful adjunct to traditional care formats by mothers who identified that they were able to adapt and integrate its use in alignment with their individual preferences and needs. Taken together, these findings suggest that for families, neonatal admission is a challenging and diverse experience. Staff are essential, not only as sources of information, but as part of a supportive relationship with families. The importance of informational support cannot be understated and its value in building parental self-efficacy and reducing parental distress was evidenced across both studies. Ultimately, the findings presented here suggest that informational resources, such as Babble, can act supportively for parents and therefore, are worthy of further development and exploration

Discharge Readiness for Families with a Premature Infant Living in Appalachia

With increased advances in technology, the overall survival rates in the Neonatal Intensive Care Unit (NICU) for premature infants at lower gestational ages, has also increased. Although premature infants survive at lower gestational ages, they are often discharged to home with unresolved medical issues. While the birth of a new baby for parents is a joyous occasion, they often have difficulty coping and transitioning into a parental role. Premature infants also have ongoing complications such as difficulty with feeding, developmental delays in growth, and long-term eye and respiratory complications. As a result of chronic health sequelae, premature infants require extensive utilization of hospital and community health resources. In addition, hospitals must coordinate between community resources, while preparing parents for specialized discharge teaching. Furthermore, individuals living in rural and underserved areas face unique challenges and barriers to access healthcare resources. An interpretive phenomenology study was conducted to bring insight and develop an understanding into how families perceive discharge readiness, accessing health care resources, and ability to cope at home after discharge from a Level III NICU located in Appalachia. Ten parents total were enrolled in the study and consisted of three couples, three married mothers, and two single mothers. Interviews were conducted over a period of six months and transcript analysis revealed development of major and minor themes. The studies overarching theme was Adapting to a New Family Roles, Finding Normalcy, which described parents experience of being prepared for discharge and their transition to home. Three major themes related to discharge readiness from detailed analysis included; 1) Riding out the storm, 2) Righting the ship, and 3) Safe port, finding solid ground. Subthemes that supported development of the major these were 1a) having the carpet pulled out from under me, 1b) things I lost, 1c) feel like an outsider, 1d) sink or swim, 2a) quest for knowledge, 2b) caring for me, care for my baby, 2c) customized learning, 3a) getting to know baby, 3b) becoming the expert, 3c) ongoing emotions, and 3d) adjusted parental role. Practice and research implications for discharge readiness include providing customized support for parents as they adjust to a new normal for their family, identify necessary resources, and become self-reliant once home

Fear of Fatherhood

The fatherhood role is influenced by culture, religion, social factors, and economic norms. In Jamaica pregnancy is often treated as a female only event. Women are left to visit their clinics alone and have support from female family members. The man’s focus is providing financial support. In the past fathers were subjected to migrant labor and left their families for long periods. This tradition remained even when they were not working. Today, men are taking on more of the role of fatherhood, becoming involved and supportive and experiencing the privilege of pregnancy though of a secondary nature through their partner’s body