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

Surgical Management of Gastroesophageal Reflux in Children: Risk Stratification and Prediction of Outcomes

Introduction: Since the 1980s fundoplication, an operation developed for adults with hiatus hernia and reflux symptoms, has been performed in children with gastroesophageal reflux disease (GORD). When compared to adult outcomes, paediatric fundoplication has resulted in higher failure and revision rates. In the first chapter we explore differences in paradigm, patient population and outcomes. Firstly, symptoms are poorly defined and are measured by instruments of varying quality. Secondly, neurological impairment (NI), prematurity and congenital anomalies (oesophageal atresia, congenital diaphragmatic hernia) are prevalent in children. / Purpose: To develop methods for stratifying paediatric fundoplication risk and predicting outcomes based on symptom profile, demographic factors, congenital and medical history. / Methods: Study objectives are addressed in three opera: a symptom questionnaire development (TARDIS:REFLUX), a randomised controlled trial (RCT) and a retrospective database study (RDS). TARDIS: REFLUX: In the second chapter, digital research methods are used to design and validate a symptom questionnaire for paediatric GORD. The questionnaire is a market-viable smartphone app hosted on a commercial platform and trialed in a clinical pilot study. / RCT: In the third chapter, the REMOS trial is reported. The trial addresses the subset of children with NI and feeding difficulties. Participants are randomized to gastrostomy with or without fundoplication. Notably, pre- and post-operative reflux is quantified using pH-impedance. / RDS: In the fourth chapter, data mining and machine learning strategies are applied to a retrospective paediatric GORD database. Predictive modelling techniques applied include logistic regression, decision trees, random forests and market basket analysis. / Results and conclusion: This work makes two key contributions. Firstly, an effective methodology for development of digital research tools is presented here. Secondly, a synthesis is made of literature, the randomised controlled trial and retrospective database modelling. The resulting product is an evidence-based algorithm for the surgical management of children with GORD

Cerebral Palsy

Nowadays, cerebral palsy (CP) rehabilitation, along with medical and surgical interventions in children with CP, leads to better motor and postural control and can ensure ambulation and functional independence. In achieving these improvements, many modern practices may be used, such as comprehensive multidisciplinary assessment, clinical decision making, multilevel surgery, botulinum toxin applications, robotic ambulation applications, treadmill, and other walking aids to increase the quality and endurance of walking. Trainings are based on neurodevelopmental therapy, muscle training and strength applications, adaptive equipment and orthotics, communication, technological solves, and many others beyond the scope of this book. In the years of clinical and academic experiences, children with cerebral palsy have shown us that the world needs a book to give clinical knowledge to health professionals regarding these important issue. This book is an attempt to fulfill and to give “current steps” about CP. The book is intended for use by physicians, therapists, and allied health professionals who treat/rehabilitate children with CP. We focus on the recent concepts in the treatment of body and structure problems and describe the associated disability, providing suggestions for further reading. All authors presented the most frequently used and accepted treatment methods with scientifically proven efficacy and included references at the end of each chapter

The miscarriage circle of care:towards leveraging online spaces for social support

BACKGROUND: Lack of social support during and after miscarriage can greatly affect mental wellbeing. With miscarriages being a common experience, there remains a discrepancy in the social support received after a pregnancy is lost. METHOD: 42 people who had experienced at least one miscarriage took part in an Asynchronous Remote Community (ARC) study. The study involved 16 activities (discussions, creative tasks, and surveys) in two closed, secret Facebook groups over eight weeks. Descriptive statistics were used to analyse quantitative data, and content analysis was used for qualitative data. RESULTS: There were two main miscarriage care networks, formal (health care providers) and informal (friends, family, work colleagues). The formal care network was the most trusted informational support source, while the informal care network was the main source of tangible support. However, often, participants’ care networks were unable to provide sufficient informational, emotional, esteem, and network support. Peers who also had experienced miscarriage played a crucial role in addressing these gaps in social support. Technology use varied greatly, with smartphone use as the only common denominator. While there was a range of online support sources, participants tended to focus on only a few, and there was no single common preferred source. DISCUSSION: We propose a Miscarriage Circle of Care Model (MCCM), with peer advisors playing a central role in improving communication channels and social support provision. We show how the MCCM can be used to identify gaps in service provision and opportunities where technology can be leveraged to fill those gaps

Including the voice of children:Towards patient-centered care

Patient-centered care (PCC) is characterized by the provision of care that respects and responds to individual patient preferences, needs and values, and ensures that patient’s wishes guide all clinical decisions. PCC places the patient, not the disease, at the center of health care and promotes a collaboration between patient, family, and clinicians to provide care that is tailored to the patient’s wishes and needs. Although the importance of PCC is recognized, its implementation is difficult because it requires a different mindset and changing roles of patients, parents, and clinicians. This thesis focused on scientific approaches and the development of tools to enhance PCC in children. Three aspects of PCC were examined; pediatric patient engagement, Patient Reported Outcome Measures (PROMs), and Patient Reported Experience Measures (PREMs). The first part of the thesis provides a synopsis of the existing literature on pediatric patient engagement and discusses the development of a tool to enhance pediatric patient engagement. The second part of the thesis focuses on facilitators and barriers in the implementation of PROMs in clinical practice, using the KLIK PROM portal and the PROMIS measures as an example. The last part of the thesis provides an overview of the available PREMs in pediatrics

Delivering transformative action in paediatric pain: a <i>Lancet Child &amp; Adolescent Health</i> Commission

Every infant, child, and adolescent will experience pain at times throughout their life. Childhood pain ranges from acute to chronic, and includes procedural, disease-related, breakthrough, and other types of pain. Despite its ubiquity, pain is a major challenge for individuals, families, health-care professionals, and societies. As a private mental experience, pain is often hidden and can go undiscussed or ignored. Undertreated, unrecognised, or poorly managed pain in childhood leads to important and long-lasting negative consequences that continue into adulthood, including continued chronic pain, disability, and distress. This undertreatment of pain should not continue, as there are available tools, expertise, and evidence to provide better treatment for childhood pain

Patient Safety and Quality: An Evidence-Based Handbook for Nurses

Compiles peer-reviewed research and literature reviews on issues regarding patient safety and quality of care, ranging from evidence-based practice, patient-centered care, and nurses' working conditions to critical opportunities and tools for improvement

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