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https://www.readbyqxmd.com/read/28738403/developing-consensus-based-priority-outcome-domains-for-trials-in-kidney-transplantation-a-multinational-delphi-survey-with-patients-caregivers-and-health-professionals
#1
Bénédicte Sautenet, Allison Tong, Karine E Manera, Jeremy R Chapman, Anthony N Warrens, David Rosenbloom, Germaine Wong, John Gill, Klemens Budde, Lionel Rostaing, Lorna Marson, Michelle A Josephson, Peter P Reese, Timothy L Pruett, Camilla S Hanson, Donal O'Donoghue, Helen Tam-Tham, Jean-Michel Halimi, Jenny I Shen, John Kanellis, John D Scandling, Kirsten Howard, Martin Howell, Nick Cross, Nicole Evangelidis, Philip Masson, Rainer Oberbauer, Samuel Fung, Shilpa Jesudason, Simon Knight, Sreedhar Mandayam, Stephen P McDonald, Steve Chadban, Tasleem Rajan, Jonathan C Craig
BACKGROUND: Inconsistencies in outcome reporting and frequent omission of patient-centered outcomes can diminish the value of trials in treatment decision making. We identified critically important outcome domains in kidney transplantation based on the shared priorities of patients/caregivers and health professionals. METHODS: In a 3-round Delphi survey, patients/caregivers and health professionals rated the importance of outcome domains for trials in kidney transplantation on a 9-point Likert scale and provided comments...
August 2017: Transplantation
https://www.readbyqxmd.com/read/28738047/chemomobilization-overview-of-an-educational-quality-improvement-project-for-recipients-of-autologous-stem-cell-transplantation%C3%A2
#2
Zandra R Rivera, Rachelle Nurse, Bryan Fellman, Nicole Brunelle, Kelly J Brassil
BACKGROUND: In preparation for an autologous stem cell transplantation, patients undergo chemomobilization; however, a dearth of standardized, evidence-based patient education on chemomobilization exists in the literature and in practice.
. OBJECTIVES: The purpose of this quality improvement educational initiative is to identify an 
evidence-based approach to appraise the educational needs of patients and their caregivers and to enhance chemomobilization education...
August 1, 2017: Clinical Journal of Oncology Nursing
https://www.readbyqxmd.com/read/28736840/issop-position-statement-on-migrant-child-health
#3
REVIEW
(no author information available yet)
Greater numbers of children are on the move than ever before. In 2015, the number of forcibly displaced people across the globe reached 65.3 million. Of the more than 1 million migrants, asylum seekers, and refugees who arrived in Europe in 2015, nearly one third were children, and 90,000 of these children were unaccompanied. Child migrants are among the most vulnerable, even after arriving at their destination. The health of migrant children is related to their health status before their journey, the conditions during their journey and at their destination, and the physical and mental health of their caregivers...
July 23, 2017: Child: Care, Health and Development
https://www.readbyqxmd.com/read/28736798/sympathetic-under-arousal-and-externalizing-behavior-problems-in-children-with-autism-spectrum-disorder
#4
Jason K Baker, Rachel M Fenning, Stephen A Erath, Brian R Baucom, Jacquelyn Moffitt, Mariann A Howland
Children with autism spectrum disorder (ASD) commonly exhibit co-occurring externalizing behavior problems, which can impede learning opportunities and contribute significantly to caregiver stress. Substantial theory and research has linked under-arousal of the sympathetic nervous system to increased externalizing problems in children without ASD, but under-arousal has not been considered as an explanatory mechanism for individual differences among children with ASD. We tested the notion that lower electrodermal activity (EDA) would predict more externalizing problems in children with ASD, and considered the degree to which parent co-regulatory support could buffer this risk...
July 24, 2017: Journal of Abnormal Child Psychology
https://www.readbyqxmd.com/read/28736105/full-title-policy-measures-to-support-palliative-care-at-home-a-cross-country-case-comparison-in-three-european-countries
#5
Arno Maetens, Kim Beernaert, Luc Deliens, Régis Aubry, Lukas Radbruch, Joachim Cohen
BACKGROUND: The proportion of people in need of palliative care worldwide is rising, and the majority wish to receive this care at home. Many countries have created policy measures to support palliative care at home. AIM: To list and compare existing policy measures designed to support palliative care at home in addition to available primary care services in Belgium, France and Germany. METHODS: A cross-country case comparison based on expert consultation, governmental policy documents and relevant scientific literature...
July 20, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28735721/-the-first-moments-of-the-carer-the-process-of-becoming-a-caregiver-of-a-dependent-elderly-relative
#6
Lourdes Moral-Fernández, Antonio Frías-Osuna, Sara Moreno-Cámara, Pedro A Palomino-Moral, Rafael Del-Pino-Casado
AIM: Describe the initial process through which people who imminently become caregivers of a dependent elderly relative. DESIGN: Qualitative study, for which its analysis has been directed by Grounded Theory principles. LOCATION: This study was conducted in the Health Districts of Jaén, during 2015 and 2016 at the community level. PARTICIPANTS AND/OR CONTEXTS: The recruitment was carried out by managers of the Health Centres of each Health District, who located the participants who met the inclusion criteria and invited them to participate in the study...
July 20, 2017: Atencion Primaria
https://www.readbyqxmd.com/read/28735371/identifying-symptoms-of-distress-in-youth-living-with-neurofibromatosis-type-1-nf1
#7
Lori Wiener, Haven Battles, Sima Zadeh Bedoya, Andrea Baldwin, Brigitte C Widemann, Maryland Pao
Children and adolescents with Neurofibromatosis type 1 (NF1) are at increased risk for wide-ranging behavioral, developmental, and cognitive impairments and decreased quality of life. To date, no psychosocial screening tool has been developed to quickly assess the symptoms that 1) can be addressed during routine medical appointments in children with NF1, 2) can produce interpretable and actionable results, 3) can be integrated into medical care, and 4) can quickly identify patients at risk in order to better address that the provision of appropriate care are available...
July 23, 2017: Journal of Genetic Counseling
https://www.readbyqxmd.com/read/28734555/decisional-and-dispositional-capacity-determinations-neuropsychiatric-illness-and-an-integrated-clinical-paradigm
#8
REVIEW
James A Bourgeois, Mary Ann Cohen, Jennifer M Erickson, Rebecca Weintraub Brendel
BACKGROUND: Assessment of decisional capacity requires thorough clinical review of a patient's current psychiatric symptoms and cognitive processes. The assessment to determine the patient's capacity for self-management postdischarge is a different clinical concept from decisional capacity. OBJECTIVES: Standardized guidelines for capacity determinations (both for informed consent and for disposition) would be helpful to clinicians, patients, and their caregivers...
May 13, 2017: Psychosomatics
https://www.readbyqxmd.com/read/28734197/life-impact-of-caregiving-for-severe-childhood-epilepsy-results-of-expert-panels-and-caregiver-focus-groups
#9
Mark P Jensen, Kendra S Liljenquist, Fraser Bocell, Arnold R Gammaitoni, Carey R Aron, Bradley S Galer, Dagmar Amtmann
Severe epilepsy in children and young adults can significantly affect the lives of their caregivers. However, the lack of a reliable and valid measure of caregiver impact has limited our understanding of the scope and correlates of this impact, as well as our ability to measure the effects of treatments that could lessen it. The purpose of this study was to facilitate focus groups and interviews with an international group of clinician experts and caregivers to identify the most important domains that should be assessed in a measure of caregiver impact...
July 19, 2017: Epilepsy & Behavior: E&B
https://www.readbyqxmd.com/read/28733181/caring-for-a-person-with-dementia-on-the-margins-of-long-term-care-a-perspective-on-burden-from-8-european-countries
#10
Caroline Sutcliffe, Clarissa Giebel, Michel Bleijlevens, Connie Lethin, Minna Stolt, Kai Saks, Maria E Soto, Gabriele Meyer, Adelaida Zabalegui, Helen Chester, David Challis
OBJECTIVES: To explore associations between carer burden and characteristics of (1) the informal carer, (2) the person with dementia, and (3) the care support network in 8 European countries. DESIGN: Cross-sectional study. SETTING: People with dementia judged at risk of admission to long-term care (LTC) facilities in 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, United Kingdom). PARTICIPANTS: A total of 1223 people with dementia supported by community services at home or receiving day care or respite care and their informal carers...
July 18, 2017: Journal of the American Medical Directors Association
https://www.readbyqxmd.com/read/28731450/the-experiences-of-people-with-dementia-and-their-caregivers-in-dementia-diagnosis
#11
Yan Lian, Lily Dongxia Xiao, Fan Zeng, Xianmu Wu, Zhen Wang, Hui Ren
BACKGROUND: People can live well with dementia if they are diagnosed early and receive early interventions and appropriate dementia management and care. However, dementia is currently under-detected and under-diagnosed. The diagnosis rate is around 50% only in higher-income countries and 5-10% only in low- and middle-income countries. Studies on consumers' experiences in engaging in dementia diagnosis in a socio-cultural context are much needed in order to generate research evidence to inform person-centered dementia care and services...
July 17, 2017: Journal of Alzheimer's Disease: JAD
https://www.readbyqxmd.com/read/28730705/-those-who-care-much-understand-much-maternal-perceptions-of-children-s-appetite-perspectives-from-urban-and-rural-caregivers-of-diverse-parenting-experience-in-bangladesh
#12
Nurun Naila, Baitun Nahar, Monica Lazarus, Gaelen Ritter, Muttaquina Hossain, Mustafa Mahfuz, Tahmeed Ahmed, Donna Denno, Judd Walson, Scott Ickes
Appetite in children is an important determinant of nutritional intake and growth. The information used by caregivers to understand children's appetite can help inform infant and young child feeding promotion and appetite assessment. We conducted a qualitative study to (a) explore maternal perceptions and responses to children's appetite and (b) to identify how these factors differ by type of caregiver, level of maternal experience, and urban versus rural context. We used purposive sampling to recruit mothers and alternate caregivers into 14 total focus group discussions (six to eight participants in each group; N = 95) in both urban and rural settings in Bangladesh...
July 21, 2017: Maternal & Child Nutrition
https://www.readbyqxmd.com/read/28730302/internal-resources-among-informal-caregivers-trajectories-and-associations-with-well-being
#13
Kristin Litzelman, Gina Tesauro, Rebecca Ferrer
PURPOSE: The experiences, skills, and internal resources that informal caregivers bring into their role may play a critical part in their mental health and well-being. This study examined how caregiver internal resources changed over a 10 year period, and how this was related to caregivers' well-being. METHODS: Data are from the Midlife in the United States (MIDUS) study, a national sample of adults, at two time points: 1995-1996 (T1) and 2004-2006 (T2). We identified subjects who reported being a caregiver at T2 and starting care after T1 (mean age = 56; 65% female)...
July 20, 2017: Quality of Life Research
https://www.readbyqxmd.com/read/28730063/community-stakeholders-perspectives-on-the-role-of-occupational-therapy-in-primary-healthcare-implications-for-practice
#14
Deshini Naidoo, Jacqueline Van Wyk, Robin Joubert
BACKGROUND: Primary healthcare (PHC) is central to increased access and transformation in South African healthcare. There is limited literature about services required by occupational therapists in PHC. Despite policy being in place, the implementation of services at grassroots level does not always occur adequately. OBJECTIVES: This study aimed at gaining an understanding of the challenges of being disabled and the services required by occupational therapists (OTs) in rural communities in order to better inform the occupational therapy (OT) training curriculum...
2017: Afr J Disabil
https://www.readbyqxmd.com/read/28729755/social-cognition-deficits-current-position-and-future-directions-for-neuropsychological-interventions-in-cerebrovascular-disease
#15
REVIEW
Progress Njomboro
Neuropsychological assessments of cognitive dysfunction in cerebrovascular illness commonly target basic cognitive functions involving aspects of memory, attention, language, praxis, and number processing. Here, I highlight the clinical importance of often-neglected social cognition functions. These functions recruit a widely distributed neural network, making them vulnerable in most cerebrovascular diseases. Sociocognitive deficits underlie most of the problematic social conduct observed in patients and are associated with more negative clinical outcomes (compared to nonsocial cognitive deficits)...
2017: Behavioural Neurology
https://www.readbyqxmd.com/read/28729232/development-feasibility-and-small-scale-implementation-of-a-web-based-prognostic-tool-surveillance-epidemiology-and-end-results-cancer-survival-calculator
#16
Michelle Henton, Bridget Gaglio, Laurie Cynkin, Eric J Feuer, Borsika A Rabin
BACKGROUND: Population datasets and the Internet are playing an ever-growing role in the way cancer information is made available to providers, patients, and their caregivers. The Surveillance, Epidemiology, and End Results Cancer Survival Calculator (SEER*CSC) is a Web-based cancer prognostic tool that uses SEER data, a large population dataset, to provide physicians with highly valid, evidence-based prognostic estimates for increasing shared decision-making and improving patient-provider communication of complex health information...
July 20, 2017: JMIR Cancer
https://www.readbyqxmd.com/read/28727242/examining-trust-in-health-professionals-among-family-caregivers-of-nursing-home-residents-with-advanced-dementia
#17
Jannie A Boogaard, Perla Werner, Anna Zisberg, Jenny T van der Steen
AIM: In a context of increasing emphasis on shared decision-making and palliative care in dementia, research on family caregivers' trust in health professionals in advanced dementia is surprisingly scant. The aim of the present study was to assess trust in nursing home health professionals of family caregivers of nursing home residents with advanced dementia, and possible correlates, such as family caregivers' satisfaction, involvement in care, care burden and patients' symptom burden...
July 20, 2017: Geriatrics & Gerontology International
https://www.readbyqxmd.com/read/28727147/the-role-of-medical-nursing-skills-training-in-caregiver-confidence-and-burden-a-cancors-study
#18
Michelle A Mollica, Kristin Litzelman, Julia H Rowland, Erin E Kent
BACKGROUND: Informal cancer caregivers provide essential support to cancer patients, including performing direct medical/nursing tasks, assisting with activities of daily living, and offering social support. This study examined associations between the receipt of medical/nursing skills training and the caregiver burden as well as the mediation of caregiving confidence on this relationship in a sample of caregivers of lung and colorectal cancer patients. METHODS: Caregivers who had been identified by cancer patients in the Cancer Care Outcomes Research and Surveillance consortium completed a questionnaire assessing the care provided, the type of medical/nursing skills training received, the burden (measured with the modified short-form Zarit Burden Interview), and the confidence in caring for their patient's physical needs...
July 20, 2017: Cancer
https://www.readbyqxmd.com/read/28726233/-cannabidiol-its-use-in-refractory-epilepsies
#19
G Pesantez-Rios, L Armijos-Acurio, R Jimbo-Sotomayor, S I Pascual-Pascual, G Pesantez-Cuesta
INTRODUCTION: Some epileptic syndromes are characterised by seizures that are difficult to control and are associated to delayed neuropsychomotor development, which results in a deterioration in the patient's quality of life as well as in that of his or her family. AIM: To evaluate the use of cannabidiol as adjuvant therapy in patients with refractory epilepsies. PATIENTS AND METHODS: An observational study was conducted by means of a survey addressed to the patient's caregiver...
August 16, 2017: Revista de Neurologia
https://www.readbyqxmd.com/read/28725850/how-can-home-care-patients-and-their-caregivers-better-manage-fall-risks-by-leveraging-information-technology
#20
Dari Alhuwail, Güneş Koru, Eun-Shim Nahm
OBJECTIVES: From the perspectives of home care patients and caregivers, this study aimed to (a) identify the challenges for better fall-risk management during home care episodes and (b) explore the opportunities for them to leverage health information technology (IT) solutions to improve fall-risk management during home care episodes. METHODS: Twelve in-depth semistructured interviews with the patients and caregivers were conducted within a descriptive single case study design in 1 home health agency (HHA) in the mid-Atlantic region of the United States...
December 2016: Journal of patient experience
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