Mary Lewis

A model of neurodevelopmental risk and protection for preterm infants.

The purpose of this article is to introduce a model of neurodevelopmental risk and protection that may explain some of the relationships among biobehavioral risks, environmental risks, and caregiving behaviors that potentially contribute to neurobehavioral and cognitive outcomes. Infants born before 30 weeks of gestation have the poorest developmental prognosis of all infants. These infants have lengthy hospitalization periods in the neonatal intensive care unit (NICU,) an environment that is not always supportive of brain development and long-term developmental needs. The model supports the premise that interventions focused on neuroprotection during the neonatal period have the potential to positively affect long-term developmental outcomes for vulnerable very preterm infants. Finding ways to better understand the complex relationships among NICU-based interventions and long-term outcomes are important to guiding caregiving practices in the NICU.

Reducing Unplanned Extubations in the NICU

BACKGROUND AND OBJECTIVES: Unplanned extubation can be a significant event that places the patient at risk for adverse events. Our goal was to reduce unplanned extubations to <1 unplanned extubation per 100 patient-intubated days. METHODS: All unplanned extubations in the NICU beginning in October 2009 were audited. Data collected included time of day, patient weight, and patient care activity at the time of the event. Bundles of potentially better practices were implemented in sequential Plan-Do-Study-Act cycles. Rates of unplanned extubation (number per patient-intubated day) for each month were analyzed by using control charts, and causes of unplanned extubation were analyzed by using Pareto charts. RESULTS: We found a significant decrease in the unplanned extubation rate after implementation of the first bundle of potentially better practices in May 2010 (2.38 to 0.41 per 100 patient-intubated days). Several more Plan-Do-Study-Act cycles were conducted to sustain this improvement. A persistent reduction in the unplanned extubation rate (0.58 per 100 patient-intubated days) began in February 2013. Causes included dislodgement during care and procedures and variation in the fixation of the endotracheal tube. The majority of events occurred in very low birth weight infants during the daytime shift. CONCLUSIONS: Unplanned extubations in the NICU can be reduced by education of staff and by implementing standard practices of care. Sustainability of any practice change to improve quality is critically dependent on culture change within the NICU. We suggest that the benchmark for unplanned extubation should be a rate <1 per 100 patient-intubated days.

Evidence-based planning and costing palliative care services for children: novel multi-method epidemiological and economic exemplar

BackgroundChildren’s palliative care is a relatively new clinical specialty. Its nature is multi-dimensional and its delivery necessarily multi-professional. Numerous diverse public and not-for-profit organisations typically provide services and support. Because services are not centrally coordinated, they are provided in a manner that is inconsistent and incoherent. Since the first children’s hospice opened in 1982, the epidemiology of life-limiting conditions has changed with more children living longer, and many requiring transfer to adult services. Very little is known about the number of children living within any given geographical locality, costs of care, or experiences of children with ongoing palliative care needs and their families. We integrated evidence, and undertook and used novel methodological epidemiological work to develop the first evidence-based and costed commissioning exemplar.MethodsMulti-method epidemiological and economic exemplar from a health and not-for-profit organisation perspective, to estimate numbers of children under 19 years with life-limiting conditions, cost current services, determine child/parent care preferences, and cost choice of end-of-life care at home.ResultsThe exemplar locality (North Wales) had important gaps in service provision and the clinical network. The estimated annual total cost of current children’s palliative care was about £5.5 million; average annual care cost per child was £22,771 using 2007 prevalence estimates and £2,437- £11,045 using new 2012/13 population-based prevalence estimates. Using population-based prevalence, we estimate 2271 children with a life-limiting condition in the general exemplar population and around 501 children per year with ongoing palliative care needs in contact with hospital services. Around 24 children with a wide range of life-limiting conditions require end-of-life care per year. Choice of end-of-life care at home was requested, which is not currently universally available. We estimated a minimum (based on 1 week of end-of-life care) additional cost of £336,000 per year to provide end-of-life support at home. Were end-of-life care to span 4 weeks, the total annual additional costs increases to £536,500 (2010/11 prices).ConclusionsFindings make a significant contribution to population-based needs assessment and commissioning methodology in children’s palliative care. Further work is needed to determine with greater precision which children in the total population require access to services and when. Half of children who died 2002-7 did not have conditions that met the globally used childrens palliative care condition categories, which need revision in light of findings.

Exploring Biobehavioral Outcomes in Mothers of Preterm Infants

PurposeTo evaluate physiologic measures of stress with self-reported perceived stress and depressive symptoms among mothers of preterm babies currently hospitalized in an NICU. Study Design and MethodsThis was a cross-sectional, descriptive, single-visit study of 20 mothers of hospitalized preterm infants. Data collected included self-report behavioral measures and a brief structured interview. Biological data were available on 17 mothers. Data were analyzed using descriptive and inferential statistics. ResultsMothers reported high levels of stress and depressive symptoms. Higher levels of stress and more depressive symptoms were associated with higher levels of certain serum cytokines, higher levels of waking and afternoon salivary cortisol, and abnormal diurnal patterns of salivary α-amylase. Clinical ImplicationsA NICU admission is a stressful time for which families typically have not had the opportunity to prepare. Mothers with higher levels of stress and depressive symptoms may be at higher risk for poorer physical and mental health. This study highlights the high levels of stress and depressive symptoms that may be experienced by mothers of preterm infants, and suggests the potential value of developing effective strategies to target maternal psychological distress.

Planning ahead with children with life-limiting conditions and their families: development, implementation and evaluation of ‘My Choices’

BackgroundThe United Kingdom has led the world in the development of children’s palliative care. Over the past two decades, the illness trajectories of children with life-limiting conditions have extended with new treatments and better home-based care. Future planning is a critically under-researched aspect of children’s palliative care globally. This paper describes the development, implementation and evaluation of innovative child and parent-held palliative care planning resources. The resources were designed to facilitate parent and child thinking and engagement in future planning, and to determine care preferences and preferred locations of care for children with life-limiting conditions from diagnosis onwards. These resources fill a significant gap in palliative care planning before the end-of-life phase.MethodsDrawing on contemporaneous research on producing evidence-based children’s health information, we collaborated with leading children’s not-for-profit organisations, parents, children, and professionals. A set of resources (My Choices booklets) were developed for parents and children and evaluated using interviews (parents, children, professionals) and questionnaires (professionals) and an open web-based consultation.ResultsParents and children responded in three ways: Some used the booklets to produce detailed written plans with clear outcomes and ideas about how best to achieve desired outcomes. Others preferred to use the booklet to help them think about potential options. Remaining parents found it difficult to think about the future and felt there was no point because they perceived there to be no suitable local services. Professionals varied in confidence in their ability to engage with families to plan ahead and identified many challenges that prevented them from doing so. Few families shared their plans with professionals. Parents and children have far stronger preferences for home-care than professionals.ConclusionThe My Choices booklets were revised in light of findings, have been endorsed by Together for Short Lives, and are free to download in English and Welsh for use by parents and young people globally. More work needs to be done to support families who are not yet receptive to planning ahead. Professionals would benefit from more training in person-centred approaches to future planning and additional communications skills to increase confidence and ability to engage with families to deliver sensitive palliative care planning.

Evidence into practice: evaluating a child-centred intervention for diabetes medicine management The EPIC Project

BackgroundThere is a lack of high quality, child-centred and effective health information to support development of self-care practices and expertise in children with acute and long-term conditions. In type 1 diabetes, clinical guidelines indicate that high-quality, child-centred information underpins achievement of optimal glycaemic control with the aim of minimising acute readmissions and reducing the risk of complications in later life. This paper describes the development of a range of child-centred diabetes information resources and outlines the study design and protocol for a randomized controlled trial to evaluate the information resources in routine practice. The aim of the diabetes information intervention is to improve children and young peoples quality of life by increasing self-efficacy in managing their type 1 diabetes.Methods/DesignWe used published evidence, undertook qualitative research and consulted with children, young people and key stakeholders to design and produce a range of child-centred, age-appropriate childrens diabetes diaries, carbohydrate recording sheets, and assembled child-centred, age-appropriate diabetes information packs containing published information in a folder that can be personalized by children and young people with pens and stickers. Resources have been designed for children/young people 6-10; 11-15; and 16-18 years.To evaluate the information resources, we designed a pragmatic randomized controlled trial to assess the effectiveness, cost effectiveness, and implementation in routine practice of individually tailored, age-appropriate diabetes diaries and information packs for children and young people age 6-18years, compared with currently available standard practice.Children and young people will be stratified by gender, length of time since diagnosis (< 2years and > 2years) and age (6-10; 11-15; and 16-18 years). The following data will be collected at baseline, 3 and 6 months: PedsQL (generic, diabetes and parent versions), and EQ-5 D (parent and child); NHS resource use and process data (questionnaire and interview). Baseline and subsequent HbA1c measurements, blood glucose meter use, readings and insulin dose will be taken from routine test results and hand-held records when attending routine 3-4 monthly clinic visits.The primary outcome measure is diabetes self-efficacy and quality-of-life (Diabetes PedsQL). Secondary outcomes include: HbA1c, generic quality of life, routinely collected NHS/child-held data, costs, service use, acceptability and utility.Trial RegistrationISRCTN17551624.

Effects of the neonatal intensive care unit environment on preterm infant oral feeding.

OBJECTIVE To examine the effect of neonatal intensive care unit environmental characteristics (perceived levels of light and sound, and time of day) in open unit wards and single-family rooms (SFRs) on oral feeding outcomes in preterm infants. DESIGN Data were collected at each scheduled oral feeding for 87 preterm infants from the first oral feeding until discharge. Data included the prescribed volume of feeding and the volume consumed, the infants level of wakefulness before feeding, and the nurses perception of light and sound. RESULTS Data were collected on 5111 feedings in the ward unit and 5802 in the SFR unit from feedings involving 87 preterm infants. Light and sound were rated significantly lower in the SFR (χ2 = 139 and 1654.8, respectively). Feeding times of 9 am, 12 noon, and 3 pm were associated with the highest perceived levels of light and sound, regardless of unit design (P < 0.0001). Moderate light levels and feeding times of 12, 3, and 6 am were associated with improved feeding outcomes. Infants consumed a greater proportion of their prescribed feeding volume when fed in the open ward and when awake before feeding. CONCLUSION Further study on the clinical effects of unit design is needed, as is study on the effects of environmental stimuli, so that interventions can be appropriately developed and tailored for infants needing the most support for optimal development.