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family center care

Daisuke Hirano, Takamichi Taniguchi
[Purpose] Rett syndrome is a severe neurodevelopmental disease; individuals typically have no verbal skills or purposeful hand movements. In clinical settings, knowledge of their interests would be helpful for therapy. Therefore, we investigated the interests of Rett syndrome patients. [Subjects and Methods] In 2016, we sent a questionnaire regarding the interests of individuals with Rett syndrome to 1,016 directors of schools for special needs education and 204 directors of rehabilitation departments (130 facilities for persons with severe motor and intellectual disabilities, 73 wards for patients with severe motor and intellectual disabilities, and the National Hospital Organization and National Center Hospital, and the National Center of Neurology and Psychiatry) in Japan...
February 2018: Journal of Physical Therapy Science
Schirin Akhbari Ziegler, Tineke Dirks, Mijna Hadders-Algra
BACKGROUND: Coaching is en vogue in pediatric physiotherapy, but often applied rather unspecific and undefined. METHODS: This paper aims to describe coaching in early physiotherapy intervention, taking the specific coaching approach of the family-centered program "COPing with and CAring for infants with special needs" (COPCA) as a case in point. RESULTS: The theoretical underpinnings of coaching in COPCA, including a meta-model, family-centered practice, the Neuronal Group Selection Theory and the goal-oriented coaching approach, are discussed...
March 16, 2018: Disability and Rehabilitation
Peter A Nigrovic, Timothy Beukelman, George Tomlinson, Brian M Feldman, Laura E Schanberg, Yukiko Kimura
BACKGROUND: Systemic juvenile idiopathic arthritis is a rare febrile arthritis of childhood characterized by a potentially severe course, including prolonged glucocorticoid exposure, growth failure, destructive arthritis, and life-threatening macrophage activation syndrome. Early cytokine-blocking biologic therapy may improve long-term outcomes, although some systemic juvenile idiopathic arthritis patients respond well to non-biologic treatment, leaving optimal management undefined. Consequently, treatment of new-onset systemic juvenile idiopathic arthritis by expert clinicians varies widely...
March 1, 2018: Clinical Trials: Journal of the Society for Clinical Trials
Katie N Dainty, M Bianca Seaton, Ian R Drennan, Laurie J Morrison
OBJECTIVE: Community paramedicine (CP) is a model of community-based health care being used around the world. Our objective was to study the patient perspective and valuation of this type of program to understand its potential value for primary care innovation in the future. STUDY SETTING: The EPIC community paramedicine program is a partnership between primary care physicians and specially trained community paramedics, designed to provide in-home support for complex chronic disease patients in Ontario, Canada...
March 15, 2018: Health Services Research
(no author information available yet)
OBJECTIVES: To ascertain the proportion of neonates and infants presenting with suspicion of an inborn error of metabolism in the centers identified by ICMR for newborn screening. METHODS: A set of red flag signs suggestive IEM were listed by the Taskforce members. The age group was limited to one year as it was understood that most of the small molecules with a severe phenotype would present before the age of one year. Further investigations were tandem mass spectrometry, gas chromatography mass spectrometry and high performance liquid chromatography...
March 15, 2018: Indian Journal of Pediatrics
Melissa H Bellin, Angelica Newsome, Cassie Lewis-Land, Joan Kub, Shawna S Mudd, Rachel Margolis, Arlene M Butz
INTRODUCTION: Low-income caregiver perspectives on asthma management are understudied but may illuminate strategies to improve care delivery and child outcomes. METHOD: Purposive sampling methods were used to recruit 15 caregivers of children with frequent asthma emergency department visits. Interviews explored how poverty and stress affect asthma management. Grounded theory coding techniques were used to analyze the data. RESULTS: Participants were the biological mother (100%) and were poor (75% had mean annual income ≤ $30,000)...
March 12, 2018: Journal of Pediatric Health Care
Sana B Ali, Juana Romero, Kevin Morrison, Baria Hafeez, Jessica S Ancker
OBJECTIVES:  Although electronic patient portals are offered by most health care organizations, poor usability and poor fit to patient needs may pose barriers to adoption. We collaborated with an academic hospital to conduct iterative user evaluation of a newly deployed portal designed to deliver inpatient data upon hospital discharge. METHODS:  Three evaluators applied heuristic usability evaluation and conducted 23 individual user testing sessions with patients with chronic disease or managing the care of family members with chronic disease...
January 2018: Applied Clinical Informatics
Silvia de Souza Campos Fernandes, Dirceu Solé, Paulo Camargos, Cláudia Ribeiro de Andrade, Cássio da Cunha Ibiapina
OBJECTIVE: To evaluate risk factors associated with asthma symptoms in adolescents in the 13- to 14-year age bracket. METHODS: This was a cross-sectional study involving adolescents enrolled in randomly selected public schools in the city of Belo Horizonte, Brazil, and conducted with the use of the International Study of Asthma and Allergies in Childhood (ISAAC) questionnaire and its supplementary module for risk factor assessment. The ISAAC questionnaire was completed by the students themselves, whereas the supplementary questionnaire was completed by their parents or legal guardians...
January 2018: Jornal Brasileiro de Pneumologia: Publicaça̋o Oficial da Sociedade Brasileira de Pneumologia e Tisilogia
Maurene A Harvey, Judy E Davidson
No abstract text is available yet for this article.
April 2018: Critical Care Medicine
Sebastian T Tong, Camille J Hochheimer, Wendy B Barr, Matteo Leveroni-Calvi, Nicholas M Lefevre, Jordyn T Wallenborn, Lars E Peterson
BACKGROUND AND OBJECTIVES: Prior research found that 24% of graduating family medicine residents intend to provide obstetrical deliveries, but only 9% of family physicians 1 to 10 years into practice are doing so. Our study aims to describe the individual and residency program characteristics associated with intention to provide obstetrical deliveries and prenatal care. METHODS: Cross-sectional data on 2014-2016 graduating residents were obtained from the American Board of Family Medicine certification examination demographic questionnaire that asked about intended provision of specific clinical activities...
March 8, 2018: Family Medicine
Geum Hee Jeong, Hyun Kyoung Kim, Young Hee Kim, Sun Hee Kim, Sun Hee Lee, Kyung Won Kim
PURPOSE: This study aimed to develop an instrument to assess the quality of childbirth care from the perspective of a mother after delivery. METHODS: The instrument was developed from a literature review, interviews, and item validation. Thirty-eight items were compiled for the instrument. The data for validity and reliability testing were collected using a questionnaire survey conducted on 270 women who had undergone normal vaginal delivery in Korea and analyzed with descriptive statistics, exploratory factor analysis, and reliability coefficients...
February 2018: Journal of Korean Academy of Nursing
Ellen M McCreedy, Robert L Kane, Sarah E Gollust, Nathan D Shippee, Kirby D Clark
BACKGROUND: Clinicians strive to deliver individualized, patient-centered care. However, these intentions are understudied. This research explores how patient characteristics associated with an high risk-to-benefit ratio with hypoglycemia medications affect decision making by primary care clinicians. METHODS: Using a vignette-based survey, we queried primary care clinicians on their intended management of geriatric patients with diabetes. The patients' ages, disease durations, and comorbidities were systematically varied...
March 2018: Journal of the American Board of Family Medicine: JABFM
Kristi Soileau, Nanette Elster
The hospice philosophy embraces palliative care for the terminally ill, for whom quality of life is the central focus of comfort care management. Often, caregivers hesitate or simply do not elect to extend oral care for patients nearing the end of life, due to difficulties encountered in patient compliance, a sense of futility in doing so, staff time constraints in prioritizing care, underfunding, or a lack of education as to how and why such care should be delivered to the hospice patient. This article aims to show physiological and psychosocial reasons why the hospice patient has a need for properly and regularly implemented oral care and why dental professionals have an ethical responsibility to address the current void that exists in hospice-centered oral care...
January 1, 2018: Journal of Palliative Care
Beatrice J Edwards, Xiaotao Zhang, Ming Sun, Holly M Holmes, Leena Ketonen, Nandita Guha, Peter Khalil, Juhee Song, Shelli Kesler, Jay B Shah, Debasish Tripathy, Vicente Valero, Richard E Champlin
OBJECTIVE: To assess cognitive function in older adults undergoing cancer care. MATERIALS AND METHODS: This is a cross-sectional study, in the University of Texas MD Anderson Cancer Center, in older adults undergoing cancer care. Comprehensive geriatric assessments were conducted prior to surgery, chemotherapy or allogeneic stem cell transplantation, at the Program for Healthy Aging from January 1, 2013 through March 31, 2015. Cognitive assessment was conducted through personal and family interview, and the Montreal cognitive assessment (MoCA)...
March 9, 2018: Journal of Geriatric Oncology
M Colinart-Thomas, V Noël, G Roques, S Gordes-Grosjean, M Abely, C Pluchart
Sickle cell disease, a hemoglobin disorder with autosomal recessive transmission, is one of the most common genetic diseases screened in France. Thanks to early management, 95% of sickle cell patients reach adulthood and require transition from pediatric care to adult care. Through a retrospective study of records from serious sickle cell patients over 17 years old, followed in the hematology-oncology pediatric unit of Reims University Hospital Center in France, we analyzed transition conditions, compared pediatric and adult management, and proposed a plan for transition care...
March 9, 2018: Archives de Pédiatrie: Organe Officiel de la Sociéte Française de Pédiatrie
Francesc Torres-Andres, Ericka L Fink, Michael J Bell, Mahesh S Sharma, Eric J Yablonsky, Joan Sanchez-de-Toledo
OBJECTIVES: To identify patient- and disease-related factors related to survival and favorable outcomes for children who underwent extracorporeal cardiopulmonary resuscitation after a refractory cardiac arrest. DESIGN: Retrospective observational study with prospective assessment of long-term functional outcome. PATIENTS: Fifty-six consecutive children undergoing extracorporeal cardiopulmonary resuscitation at our institution from 2007 to 2015...
March 9, 2018: Pediatric Critical Care Medicine
Mutlu Kasar, Mahmut Yeral, Soner Solmaz, Nurhilal Büyükkurt, Suheyl Asma, Çiğdem Gereklioğlu, Can Boğa, Hakan Özdoğu, Bilkay Baştürk
OBJECTIVES: Allogeneic hematopoietic stem cell transplant is a curative treatment option for many hematologic diseases. The existence of a fully compatible donor for recipients is the first condition for minimized transplant-related mortality and morbidity. The best donor for hematopoietic stem cell transplant is an HLA-matched sibling donor. The possibility of finding an HLA-matched sibling is less than 30% worldwide. Hematopoietic stem cell transplant is needed for an increasing number of patients every year, but the ability to find a fully compatible donor has limited its use...
March 2018: Experimental and Clinical Transplantation
Adrienne W Henize, Andrew F Beck, Melissa D Klein, John Morehous, Robert S Kahn
Introduction Children and families living in poverty frequently encounter social risks that significantly affect their health and well-being. Physicians' near universal access to at-risk children and their parents presents opportunities to address social risks, but time constraints frequently interfere. We sought to redesign our waiting room to create a clinic-to-community bridge and evaluate the impact of that redesign on family-centered outcomes. Methods We conducted a pre-post study of a waiting room redesign at a large, academic pediatric primary care center...
March 10, 2018: Maternal and Child Health Journal
Rene Soria-Saucedo, Ruy Lopez-Ridaura, Martin Lajous, Veronika J Wirtz
BACKGROUND: Depression is among the 10 major causes of disability in Mexico. Yet, local contextual factors associated to the disorder remain poorly understood. We measured the impact of several factors on severe depression such as demographics, pharmacotherapy, multimorbidity, and unhealthy behaviors in Mexican teachers. METHODS: A total of 43,845 Mexican female teachers from 12 Mexican states answered the Patient Health Questionnaire (PHQ9). Data were part the Mexican Teacher's Cohort prospective study, the largest ongoing cohort study in Latin America...
February 28, 2018: Journal of Affective Disorders
Chantal F Hillebregt, Eline W M Scholten, Marjolijn Ketelaar, Marcel W M Post, Johanna M A Visser-Meily
INTRODUCTION: Many patients and family members experience a large gap between the protected environment during inpatient medical rehabilitation and life in the community after discharge. They feel insufficiently prepared to cope with the consequences of their disability in daily life. This study protocol describes the design measuring the effectiveness and implementation of family group conferences on the empowerment of patients with a high risk of chronic disability and their significant others...
March 8, 2018: BMJ Open
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