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Family centered care

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https://www.readbyqxmd.com/read/28650934/congenital-cytomegalovirus-infection-child-development-quality-of-life-and-impact-on-daily-life
#1
Marjolein J Korndewal, Anne Marie Oudesluys-Murphy, Aloys C M Kroes, Ann C T M Vossen, Hester E de Melker
BACKGROUND: Congenital cytomegalovirus infection (cCMV) is the most common congenital infection worldwide and can lead to long-term impairments such as developmental delay. It is currently unknown how this affects the daily life of children and their parents. METHODS: Children with cCMV were identified by testing stored dried blood spots of 31.484 five-year-old children born in 2008 in the Netherlands. Parents of 133 children with cCMV and 274 children without cCMV participated and filled in questionnaires on the child's development, the child's and parents' quality of life, care provided for the children, and consequences of cCMV on daily life...
June 23, 2017: Pediatric Infectious Disease Journal
https://www.readbyqxmd.com/read/28650723/hospital-chaplains-through-the-eyes-of-parents-of-hospitalized-children
#2
Pamela K Donohue, Matt Norvell, Renee D Boss, Jennifer Shepard, Karen Frank, Christina Patron, Thomas Y Crowe
BACKGROUND: Chaplain services are available in 68% of hospitals, but hospital chaplains are not yet incorporated into routine patient care. OBJECTIVES: To describe how families of hospitalized children view and utilize hospital chaplains. DESIGN: Telephone survey with 40 questions: Likert, yes/no, and short-answer responses. SUBJECTS: Parents visited by a hospital chaplain during their child's hospitalization in a tertiary care center...
June 26, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28649616/palliative-care-for-parkinson-s-disease-suggestions-from-a-council-of-patient-and-carepartners
#3
Kirk Hall, Malenna Sumrall, Gil Thelen, Benzi M Kluger
In 2015, the Parkinson's Disease Foundation sponsored the first international meeting on Palliative Care and Parkinson's disease and the Patient Centered Outcomes Research Institute funded the first comparative effectiveness trial of palliative care for Parkinson's disease. A council of Parkinson's disease patients and carepartners was engaged to assist with both projects. This council wrote the following manuscript as an opinion piece addressed to the clinical and research community on how palliative care could be applied to people living with Parkinson's disease and their families...
2017: NPJ Parkinson's Disease
https://www.readbyqxmd.com/read/28648893/assessment-of-self-determination-in-adolescents-with-neonatal-brachial-plexus-palsy
#4
Donna Bergman, Lynnette Rasmussen, Kate Wan-Chu Chang, Lynda J-S Yang, Virginia S Nelson
BACKGROUND: The term self-determination refers to decision-making, goal setting, and perseverance to achieve those goals. Numerous studies have established the importance of self-determination to enhance learning and improve post-school outcomes. However, most studies evaluate students with learning disabilities, cognitive impairment, or behavioral disabilities. There is an absence of research on self-determination for adolescents with physical disabilities. OBJECTIVE: To assess self-determination of adolescents with neonatal brachial plexus palsy (NBPP) compared to their typically developing peers via self-reported measures of function...
June 22, 2017: PM & R: the Journal of Injury, Function, and Rehabilitation
https://www.readbyqxmd.com/read/28647948/gender-creative-or-transgender-youth-and-advanced-nursing-practice
#5
Nicole Kirouac, Mabel Tan
The World Professional Association for Transgender Health (WPATH) defines gender dysphoria as "Discomfort or distress that is caused by a discrepancy between a person's gender identity and that person's sex assigned at birth (and the associated gender role and/or primary and secondary sex characteristics)" (WPATH, 2016). Gender creative (GC) and transgender (TG) youth are at high risk for severe mental health disparities if they don't receive competent and timely gender transitioning care. Although awareness and early care of TG youth in specialty clinics is improving and increasing, there is still much effort that is required to eliminate barriers to care at many levels and thus improve outcomes...
June 2017: Pediatric Endocrinology Reviews: PER
https://www.readbyqxmd.com/read/28645277/dignity-in-people-with-frontotemporal-dementia-and-similar-disorders-a-qualitative-study-of-the-perspective-of-family-caregivers
#6
Mette Sagbakken, Dagfinn Nåden, Ingun Ulstein, Kari Kvaal, Birgitta Langhammer, May-Karin Rognstad
BACKGROUND: Frontotemporal dementia (FTD) constitutes on average 10-15% of dementia in younger persons (≤65 years old), but can also affect older people. These patients demonstrate a decline in social conduct, and/or language aphasias, apathy, and loss of insight that is gradual and progressive. Preservation of dignity seems to be highly relevant both before and after admission to different types of institutionalized care, but the research is scant. From the perspective of close relatives, this study aims to develop knowledge related to dignified or undignified care of patients with FTD and similar conditions...
June 23, 2017: BMC Health Services Research
https://www.readbyqxmd.com/read/28641378/staff-perceptions-of-key-factors-guiding-nursing-home-search-and-selection-within-the-veterans-health-administration
#7
Edward Alan Miller, Stefanie Gidmark, Emily Gadbois, James L Rudolph, Orna Intrator
Background and Objectives: Veterans enter nursing homes (NHs) for short-term postacute, rehabilitation, respite, or end-of-life care. They also enter NHs on a long-term basis due to frailty, disability, functional deficits, and cognitive impairment. Little is known about how a particular NH is chosen once the decision to enter a NH has been made. This study identified VA staff perceptions of the key factors influencing the search and selection of NHs within the Veterans Health Administration (VHA)...
June 21, 2017: Gerontologist
https://www.readbyqxmd.com/read/28637571/workforce-issues-in-pediatric-surgery
#8
Don K Nakayama
High salaries indicate a demand for pediatric surgeons in excess of the supply, despite only a slight growth in the pediatric-age population and a sharp increase in numbers of trainees. Top-level neonatal intensive care units require 24-hour-7-day pediatric surgical availability, so hospitals are willing to pay surgeons a premium and engage high-priced locum tenens surgeons to fill vacancies in coverage. With increased supply comes an erosion of the numbers of cases performed by trainees and surgeons in practice...
June 1, 2017: American Surgeon
https://www.readbyqxmd.com/read/28637322/predicting-perceived-isolation-among-midlife-and-older-lgbt-adults-the-role-of-welcoming-aging-service-providers
#9
Jie Yang, Yoosun Chu, Mary Anne Salmon
Background and Objectives: Older lesbian, gay, bisexual, and transgender (LGBT) adults are more likely to live alone and less likely to have children compared with their heterosexual counterparts. The lack of immediate family system can render older LGBT adults particularly vulnerable to social isolation and its consequences. The current study utilizes social exclusion theory, which asserts that not only material resources but also engagement with and inclusion into the society are necessary for marginalized people to be integrated into the mainstream...
June 16, 2017: Gerontologist
https://www.readbyqxmd.com/read/28635985/experiences-of-women-with-gestational-trophoblastic-neoplasia-treated-with-high-dose-chemotherapy-and-stem-cell-transplantation-a-qualitative-study
#10
Kam Singh, Clare Warnock, Jane Ireson, Sarah Strickland, Delia Short, Michael J Seckl, Barry W Hancock
PURPOSE/OBJECTIVES: To explore the experiences of women with gestational trophoblastic neoplasia during and after treatment to understand their perspectives, priorities, and concerns.
. RESEARCH APPROACH: A descriptive, exploratory study using in-depth semistructured interviews.
. SETTING: All interviews were conducted in a quiet, designated room at Weston Park Hospital in Sheffield, South Yorkshire.
. PARTICIPANTS: Women with gestational trophoblastic neoplasia who had received stem cell transplantation from 2003 to 2013...
May 1, 2017: Oncology Nursing Forum
https://www.readbyqxmd.com/read/28635984/anxiety-and-depression-associated-with-burden-in-caregivers-of-patients-with-brain-metastases
#11
Marlon G Saria, Natasia S Courchesne, Lorraine Evangelista, Joshua L Carter, Daniel A MacManus, Mary Kay Gorman, Adeline M Nyamathi, Linda R Phillips, David E Piccioni, Santosh Kesari, Sally L Maliski
PURPOSE/OBJECTIVES: To describe and examine the relationship between caregiver burden and the affective disorders anxiety and depression in caregivers of patients with brain metastases.
. DESIGN: Cross-sectional, descriptive, correlational.
. SETTING: Moores Cancer Center at the University of California, San Diego. 
. SAMPLE: 56 family caregivers of patients with brain metastases from solid tumors at other primary sites...
May 1, 2017: Oncology Nursing Forum
https://www.readbyqxmd.com/read/28635585/the-meaning-and-experience-of-bereavement-support-a-qualitative-interview-study-of-bereaved-family-caregivers
#12
Emma Kirby, Katherine Kenny, Alex Broom, John MacArtney, Phillip Good
OBJECTIVE: Experiences of bereavement can be stressful and are frequently complicated by emotional, familial, and financial issues. Some-though not all-caregivers may benefit from bereavement support. While considered standard within palliative care services in Australia, bereavement support is not widely utilized by family caregivers. There is little research focused on the forms of bereavement support desired or required by family caregivers, how such care is viewed, and/or how bereavement support is experienced...
June 21, 2017: Palliative & Supportive Care
https://www.readbyqxmd.com/read/28635547/-healthcare-seems-to-vary-a-lot-a-focus-group-study-among-parents-of-children-with-severe-allergy
#13
Birgitta Lagercrantz, Åsa Persson, Inger Kull
BACKGROUND: Living with an allergic disease has consequences for both affected children and their families. The aim of this qualitative study was to gain deeper knowledge of what life is like for families of children with severe allergic disease, in order to improve care and thereby reduce the consequences of living with a chronic disease. METHODS: Four focus group interviews were performed with Swedish parents of children, aged 6-11 and 12-16 years, with severe allergic disease (from one or more allergic conditions, such as food allergy/eczema/hay fever/asthma)...
February 22, 2017: Journal of Asthma: Official Journal of the Association for the Care of Asthma
https://www.readbyqxmd.com/read/28634874/the-childcare-center-an-untapped-opportunity-to-engage-and-educate-families-in-healthy-behaviors
#14
Michelle M Cloutier, James F Wiley, Christine Trapp, Jennifer Haile, Amy A Gorin
Obesity rates in preschool children are high and disproportionately affect low-income children of color in the USA. Since 80% of preschool children spend ∼40 h/week in out-of-the home childcare, childcare centers are promising sites for obesity prevention interventions. Mixed methods were used to develop, implement, and assess the feasibility of an obesity prevention program for children 2-5 years. The intervention which consisted of brief (1-3 min), interactive, educational modules was developed by content experts and parents (n = 20) and targeted four areas (milk, sugar sweetened beverages, screen time, and physical activity)...
June 20, 2017: Journal of Racial and Ethnic Health Disparities
https://www.readbyqxmd.com/read/28634534/etiological-factors-of-short-stature-in-children-and-adolescents-experience-at-a-tertiary-care-hospital-in-egypt
#15
Almontaser Hussein, Hekma Farghaly, Eman Askar, Kotb Metwalley, Khaled Saad, Asmaa Zahran, Hisham A Othman
BACKGROUND: Accurate anthropometric measurements and critical analysis of growth data allow the clinician to promptly recognize children with short stature. The aim of this study was to determine the frequency of etiological factors causing short stature among children referred to the pediatric endocrinology clinic of Assiut University Children's Hospital, the main tertiary care center in Upper Egypt. METHODS: We conducted this descriptive observational study from May 2012 to December 2015, to analyze 637 children (boys 354, girls 283) with short stature...
May 2017: Therapeutic Advances in Endocrinology and Metabolism
https://www.readbyqxmd.com/read/28633483/an-informatics-research-agenda-to-support-patient-and-family-empowerment-and-engagement-in-care-and-recovery-during-and-after-hospitalization
#16
Sarah Collins, Patricia Dykes, David W Bates, Brittany Couture, Ronen Rozenblum, Jennifer Prey, Kristin O'Reilly, Patricia Q Bourie, Cindy Dwyer, S Ryan Greysen, Jeffery Smith, Michael Gropper, Anuj K Dalal
As part of an interdisciplinary acute care patient portal task force with members from 10 academic medical centers and professional organizations, we held a national workshop with 71 attendees representing over 30 health systems, professional organizations, and technology companies. Our consensus approach identified 7 key sociotechnical and evaluation research focus areas related to the consumption and capture of information from patients, care partners (eg, family, friends), and clinicians through portals in the acute and post-acute care settings...
June 17, 2017: Journal of the American Medical Informatics Association: JAMIA
https://www.readbyqxmd.com/read/28633168/integration-of-clinical-pharmacists-in-family-medicine-residency-programs
#17
Jody L Lounsbery, Jennie B Jarrett, Lori M Dickerson, Stephen A Wilson
BACKGROUND AND OBJECTIVES: Clinical pharmacists are valued educators and practitioners within family medicine residency programs (FMRPs). Since the last survey of clinical pharmacists within FMRPs, there have been significant advancements to pharmacy education and training as well as growth of interprofessional education and collaborative practice within family medicine. The objective of this study is to describe the integration of clinical pharmacists within FMRPs. METHODS: All 480 Accreditation Council for Graduate Medical Education (ACGME)-approved FMRPs were contacted to identify clinical pharmacists involved with their programs...
June 2017: Family Medicine
https://www.readbyqxmd.com/read/28626848/older-adult-falls-prevention-behaviors-60-days-post-discharge-from-an-urban-emergency-department-after-treatment-for-a-fall
#18
Kalpana Narayan Shankar, Nicole J Treadway, Alyssa A Taylor, Alan H Breaud, Elizabeth W Peterson, Jonathan Howland
BACKGROUND: Falls are a common and debilitating health problem for older adults. Older adults are often treated and discharged home by emergency department (ED)-based providers with the hope they will receive falls prevention resources and referrals from their primary care provider. This descriptive study investigated falls prevention activities, including interactions with primary care providers, among community-dwelling older adults who were discharged home after presenting to an ED with a fall-related injury...
December 2017: Injury Epidemiology
https://www.readbyqxmd.com/read/28626811/the-enrich-study-to-evaluate-the-effectiveness-of-a-combination-intervention-package-to-improve-isoniazid-preventive-therapy-initiation-adherence-and-completion-among-people-living-with-hiv-in-ethiopia-rationale-and-design-of-a-mixed-methods-cluster-randomized
#19
Andrea A Howard, Yael Hirsch-Moverman, Suzue Saito, Tsigereda Gadisa, Amrita Daftary, Zenebe Melaku
BACKGROUND: Isoniazid preventive therapy (IPT) prevents tuberculosis among HIV-positive individuals, however implementation is suboptimal. Implementation science studies are needed to identify interventions to address this evidence-to-program gap. OBJECTIVE: The ENRICH Study is a mixed methods cluster randomized trial aimed at evaluating the effectiveness and acceptability of a combination intervention package (CIP) to improve IPT implementation in Ethiopia. DESIGN: Ten health centers were randomized to receive the CIP or standard of care...
June 2017: Contemporary Clinical Trials Communications
https://www.readbyqxmd.com/read/28625309/maternal-mortality-and-the-role-of-the-obstetric-anesthesiologist
#20
REVIEW
Gillian Abir, Jill Mhyre
Maternal mortality is increasing in the United States and remains unacceptably high in many parts of the world. Pre-existing conditions and social determinants of health frequently contribute to maternal death. General solutions to enhance maternal safety focus on systems to identify women at high risk and to tailor the management before, during, and after pregnancy. This review highlights condition-specific solutions for the leading etiologies of maternal death, including cardiac disease, sepsis, hemorrhage, venous thromboembolism, hypertensive disorders of pregnancy, and amniotic fluid embolism...
March 2017: Best Practice & Research. Clinical Anaesthesiology
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