Investing in America's Health: 2012

This annual report details the philanthropic activities of the Blue Cross Blue Shield Association

Breastfeeding resources for mothers of preterm infants in Canadian neonatal intensive care units (NICUs): An environmental scan

Supportive breastfeeding resources are needed in neonatal intensive care units (NICUs) to effectively promote breastfeeding among mothers of preterm infants, yet researchers have not examined the existence of such support in a Canadian context. The purpose of this study was to determine, using an environmental scan, the types and frequencies of breastfeeding resources available to mothers of preterm infants in Canadian NICUs. Semi-structured interviews were conducted with 33 key informants from 29 level 3 NICUs across Canada. Six categories of resources were identified via content analysis: breastfeeding-friendly layout, breastfeeding support personnel, breastfeeding education for mothers, breast pump-related resources, coordination of post-discharge breastfeeding support, and breastfeeding-related policies. Several resources were reported by informants to exist in a high proportion of NICUs, such as privacy measures and breast pump availability, whereas other resources were reported in lower frequencies, such as the presence of peer counsellors and breastfeeding-related policies

Rhode Island Foundation - 2008 Annual Report

Contains mission statement, board chair and president's letter, 2008 highlights, program information, grantees list, frequently asked questions, lists of endowments and funds, financial statements, and lists of board members, staff, and advisors

Family-centred care for hospitalised children aged 0-12 years (Review)

This is an update of the Cochrane systematic review of family-centred care published in 2007 (Shields 2007). Family-centred care (FCC) is a widely used model in paediatrics, is thought to be the best way to provide care to children in hospital and is ubiquitous as a way of delivering care. When a child is admitted, the whole family is affected. In giving care, nurses, doctors and others must consider the impact of the child's admission on all family members. However, the effectiveness of family-centred care as a model of care has not been measured systematically. To assess the effects of family-centred models of care for hospitalised children aged from birth (unlike the previous version of the review, this update excludes premature neonates) to 12 years, when compared to standard models of care, on child, family and health service outcomes. In the original review, we searched up until 2004. For this update, we searched: the Cochrane Central Register of Controlled Trials (CENTRAL,The Cochrane Library, Issue 12 2011); MEDLINE (Ovid SP); EMBASE (Ovid SP); PsycINFO (Ovid SP); CINAHL (EBSCO Host); and Sociological Abstracts (CSA). We did not search three that were included in the original review: Social Work Abstracts, the Australian Medical Index and ERIC. We searched EMBASE in this update only and searched from 2004 onwards. There was no limitation by language.\ua0We performed literature searches in May and June 2009 and updated them again in December 2011. We searched for randomised controlled trials (RCTs) including cluster randomised trials in which family-centred care models are compared with standard models of care for hospitalised children (0 to 12 years, but excluding premature neonates). Studies had to meet criteria for family-centredness. In order to assess the degree of family-centredness, we used a modified rating scale based on a validated instrument, (same instrument used in the initial review), however, we decreased the family-centredness score for inclusion from 80% to 50% in this update. We also changed several other selection criteria in this update: eligible study designs are now limited to randomised controlled trials (RCTs) only; single interventions not reflecting a FCC model of care have been excluded; and the selection criterion whereby studies with inadequate or unclear blinding of outcome assessment were excluded from the review has been removed. Two review authors undertook searches, and four authors independently assessed studies against the review criteria, while two were assigned to extract data. We contacted study authors for additional information. Six studies found since 2004 were originally viewed as possible inclusions, but when the family-centred score assessment was tested, only one met the minimum score of family-centredness and was included in this review. This was an unpublished RCT involving 288 children post-tonsillectomy in a care-by-parent unit (CBPU) compared with standard inpatient care.The study used a range of behavioural, economic and physical measures. It showed that children in the CBPU were significantly less likely to receive inadequate care compared with standard inpatient admission, and there were no significant differences for their behavioural outcomes or other physical outcomes. Parents were significantly more satisfied with CBPU care than standard care, assessed both before discharge and at 7 days after discharge. Costs were lower for CPBU care compared with standard inpatient care. No other outcomes were reported. The study was rated as being at low to unclear risk of bias. This update of a review has found limited, moderate-quality evidence that suggests some benefit of a family-centred care intervention for children's clinical care, parental satisfaction, and costs, but this is based on a small dataset and needs confirmation in larger RCTs. There is no evidence of harms. Overall, there continues to be little high-quality quantitative research available about the effects of family-centred care. Further rigorous research on the use of family-centred care as a model for care delivery to children and families in hospitals is needed. This research should implement well-developed family-centred care interventions, ideally in randomised trials. It should investigate diverse participant groups and clinical settings, and should assess a wide range of outcomes for children, parents, staff and health services

Children With Cancer Undergoing Chemotherapy: Parents’ Needs After Returning Home

O Cancro na infância é um evento inesperado, que provoca profundas alterações na vida da criança e da família. Entre os tratamentos, senão tiverem ocorrido complicações, as crianças vão para casa. Isto confronta os pais com uma grande responsabilidade permeada por dúvidas e preocupações na gestão da nova condição de saúde do(a) filho(a). Esta investigação visa contribuir para a melhoria da qualidade dos cuidados prestados pelos pais / cuidadores de crianças / adolescente em casa, tendo como objetivos: conhecer as necessidades sentidas pelos pais / cuidadores de crianças / adolescentes submetidas a tratamento de quimioterapia, após o regresso a casa; identificar a preparação para a alta realizada aos pais / cuidadores de crianças / adolescentes submetidas a tratamento de quimioterapia. Metodologia: Desenvolveu-se um estudo qualitativo, exploratório, descritivo e transversal, no qual participaram 11 pais de crianças submetidas a tratamento de quimioterapia, após 48 horas do regresso a casa. Os dados foram recolhidos através de entrevista semiestruturada e analisados segundo a técnica de análise de conteúdo de Bardin. Resultados: Da análise dos dados emergiram quatro domínios: O Regresso a Casa, A Vida em Casa, Apoio na Gestão da Doença e Futuro Incerto. O Regresso a Casa inclui a categoria Preparação para a Alta. A Vida em Casa integra as seguintes categorias: Alimentação; Higiene Corporal; Suscetibilidade à Infeção; Efeitos da Quimioterapia; Gestão da Medicação; A Família. O Apoio na Gestão da Doença agrega as categorias: Conhecimento da Doença; Procura de Conhecimento; Recursos na Comunidade; Terapias Complementares. Ao Futuro Incerto está associado a categoria Síndrome de Damocles. Conclusões: Os pais apresentam problemas / dificuldades após o regresso a casa, que decorrem da gestão de toda a informação recebida e da vivência quotidiana da doença e das repercussões da mesma na criança e na família. Os resultados apontam para a necessidade de proceder a um planeamento bem estruturado da alta, e a implementação de estratégias de continuidade de cuidados

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

Designing for Lived Health: Engaging the Sociotechnical Complexity of Care Work

As healthcare is increasingly shaped by everyday interaction with data and technologies, there is a widespread interest in creating information systems that help people actively participate in managing their own health and wellness. To date, personal health technologies are largely designed as large-scale “patient-centered” systems, grounded in a biomedical model of care and clinical processes and/or commercial “self-care” technologies, that seek to facilitate individual behavior change through activities like fitness tracking. Through investigating the lived experience of chronic illness—multiple, messy, and often the site of uncomfortable dependencies—my thesis empirically and theoretically engages the limitations of such popular design narratives to address sociotechnical complexities in personal health management. My findings, drawn from people’s care practices across three distinct field sites, argue for a need to contend with lived health: the ways in which everyday health and wellness activities are connected to wider ecologies of care that include the emotional labor of family and friends, entanglements of data, machineries and bodies, localized networks of resources and expertise, and contested forms of information work. My thesis contributes to the literature of Information and Computer Science in the fields of Human-Computer Interaction and Computer-Supported Cooperative Work by offering an alternative analytical lens for designing health systems that support a wider range of people’s social and emotional needs.PHDInformationUniversity of Michigan, Horace H. Rackham School of Graduate Studieshttps://deepblue.lib.umich.edu/bitstream/2027.42/146030/1/eskaziu_1.pd

Identifying Clinical Phenotypes of Type 1 Diabetes for the Co-Optimization of Weight and Glycemic Control

Obesity is an increasing concern in the clinical care of youth with type 1 diabetes (T1D). Standard approaches to co-optimize weight and glycemic control are challenged by profound population-level heterogeneity. Therefore, the goal of the dissertation was to apply novel analytic methods to understand heterogeneity in the co-occurrence of weight, glycemia, and underlying patterns of minute-to-minute dysglycemia among youth with T1D. Data from the SEARCH for Diabetes in Youth study were used to characterize subgroups of youth with T1D showing similar weight status and level of glycemic control as distinct ‘weight-glycemia phenotypes’ of T1D. Cross-sectional weight-glycemia phenotypes were identified at the 5+ year follow-up visit (n=1,817) using hierarchical clustering on five measures summarizing the joint distribution of body mass index z-score (BMIz) and hemoglobin A1c (HbA1c), generated by reinforcement learning tree predictions. Longitudinal weight-glycemia phenotypes spanning eight years were identified with longitudinal k-means clustering using baseline and follow-up BMIz and HbA1c measures (n=570). Logistic regression modeling tested for differences in the emergence of early/subclinical diabetes complications across subgroups. Seven-day blinded continuous glucose monitoring (CGM) data from baseline of the Flexible Lifestyles Empowering Change randomized trial (n=234, 13-16 years, HbA1c 8-13%) was clustered with a neural network approach to identify subgroups of adolescents with T1D and elevated HbA1c sharing patterns in their CGM data as ‘dysglycemia phenotypes.’ We identified six cross-sectional weight-glycemia phenotypes, including four normal-weight, one overweight, and one subgroup with obesity. Subgroups showed striking differences in other sociodemographic and clinical characteristics suggesting underlying health inequity. We identified four longitudinal weight-glycemia phenotypes associated with different patterns of early/subclinical complications, providing evidence that exposure to co-occurring obesity and worsening glycemic control may accelerate the development and increase the burden of co-morbid complications. We identified three dysglycemia phenotypes with significantly different patterns in hypoglycemia, hyperglycemia, glycemic variability, and 18-month changes in HbA1c. Patient-level drivers of the dysglycemia phenotypes appear to be different from risk factors for poor glycemic control as measured by HbA1c. These studies provide pragmatic, clinically-relevant examples of how novel statistics may be applied to data from T1D to derive patient subgroups for tailored interventions to improve weight alongside glycemic control.Doctor of Philosoph