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Jasem Humeid
BACKGROUND: Children aged 7-12 years and their caregivers participated in a series of group psychosocial support sessions, using standard manuals specifically developed for facilitating such sessions such as Children Affected by Armed Conflict and Joint Sessions. The sessions used various activities, including drawing, storytelling, folk games, and other activities, to provide participants with opportunities to express their feelings, learn and practice new coping skills, and interact with others...
February 21, 2018: Lancet
Ana Fonseca, Bárbara Nazaré, Maria Cristina Canavarro
OBJECTIVE: This study aimed to investigate the effect of one's attachment representations on one's and the partner's caregiving representations. BACKGROUND: According to attachment theory, individual differences in parenting and caregiving behaviours may be a function of parents' caregiving representations of the self as caregiver, and of others as worthy of care, which are rooted on parents' attachment representations. Furthermore, the care-seeking and caregiving interactions that occur within the couple relationship may also shape individuals' caregiving representations...
March 19, 2018: Journal of Reproductive and Infant Psychology
Pauline M Christmas, Catherine Sackley, Max G Feltham, Carole Cummins
OBJECTIVE: To determine the feasibility and short-term efficacy of caregiver-directed constraint-induced movement therapy to improve upper limb function in young children with hemiplegic cerebral palsy. DESIGN: Randomized controlled trial with masked assessment. SETTING: Community paediatric therapy services. SUBJECTS: Pre-school children with hemiplegic cerebral palsy. INTERVENTIONS: Caregiver-directed constraint-induced movement therapy administered using either 24-hour short-arm restraint device (prolonged) or intermittent holding restraint during therapy (manual)...
March 1, 2018: Clinical Rehabilitation
K M Shivakumar, Snehal Patil, Vidya Kadashetti, Vaishali Raje
Introduction: The individuals suffering from various disabilities form a considerable proportion of the community. The psychological reactions associated with a deformity can be devastating to the disabled, parents, caregivers, and family which often lead to attitudes of hopelessness in the lives of these disabled individuals. Objectives: To assess the oral health status and treatment needs among 5-12-year-old children attending special school in Western Maharashtra, India...
January 2018: International Journal of Applied and Basic Medical Research
Florian B Pokorny, Katrin D Bartl-Pokorny, Christa Einspieler, Dajie Zhang, Ralf Vollmann, Sven Bölte, Markus Gugatschka, Björn W Schuller, Peter B Marschik
BACKGROUND: Early speech-language development of individuals with Rett syndrome (RTT) has been repeatedly characterised by a co-occurrence of apparently typical and atypical vocalisations. AIMS: To describe specific features of this intermittent character of typical versus atypical early RTT-associated vocalisations by combining auditory Gestalt perception and acoustic vocalisation analysis. METHODS AND PROCEDURES: We extracted N = 363 (pre-)linguistic vocalisations from home video recordings of an infant later diagnosed with RTT...
March 15, 2018: Research in Developmental Disabilities
Angela Ju, Mark Unruh, Sara Davison, Juan Dapueto, Mary Amanda Dew, Richard Fluck, Michael Germain, Sarbjit V Jassal, Gregorio Obrador, Donal O'Donoghue, Michelle A Josephson, Jonathan C Craig, Andrea Viecelli, Emma O'Lone, Camilla S Hanson, Braden Manns, Benedicte Sautenet, Martin Howell, Bharathi Reddy, Caroline Wilkie, Claudia Rutherford, Allison Tong
Fatigue is one of the most highly prioritized outcomes for patients and clinicians, but remains infrequently and inconsistently reported across trials in hemodialysis. We convened an international Standardized Outcomes in Nephrology-Hemodialysis (SONG-HD) consensus workshop with stakeholders to discuss the development and implementation of a core outcome measure for fatigue. 15 patients/caregivers and 42 health professionals (clinicians, researchers, policy makers, and industry representatives) from 9 countries participated in breakout discussions...
March 15, 2018: American Journal of Kidney Diseases: the Official Journal of the National Kidney Foundation
Lindsay Bonsignore, Nicholas Bloom, Karen Steinhauser, Reginald Nichols, Todd Allen, Martha Twaddle, Janet Bull
CONTEXT: The impact of telehealth and remote patient monitoring have not been well established in palliative care populations in rural communities. OBJECTIVES: The objective of this study was to 1) Describe a telehealth palliative care program using the TapCloud remote patient monitoring application and videoconferencing, 2) Evaluate the feasibility, usability, and acceptability of a telehealth system in palliative care, and 3) Use a quality data assessment collection tool (QDACT) in addition to TapCloud ratings of symptom burden and hospice transitions...
March 15, 2018: Journal of Pain and Symptom Management
Emily E Adams, Morgan L Wrightson
The present study aims to synthesize current evidence on the impact of LVAD implantation on quality of life. Current evidence was systematically reviewed to obtain relevant quantitative and qualitative articles published after 2007. Sandelowski's recommended steps for meta-summary were used to analyze the 19 studies that met the inclusion criteria. LVADs can improve HF symptoms and some aspects of QoL. Emotional and physical adaptation involves many changes and learning to manage the device takes time. Functional limitations still exist and patients still lack independence...
March 15, 2018: Heart & Lung: the Journal of Critical Care
Nicolas Gillet, Evelyne Fouquereau, Hélène Coillot, Franck Bonnetain, Sophie Dupont, Leïla Moret, Amélie Anota, Philippe Colombat
PURPOSE: Although quality of care and caregivers' well-being are important issues in their own right, relatively few studies have examined both, especially in oncology. The present research thus investigated the relationship between job-related well-being and patients' perceptions of quality of care. More specifically, we examined the indirect effects of ethical leadership on patients' perceived quality of care through caregivers' well-being. METHOD: A cross-sectional design was used...
April 2018: European Journal of Oncology Nursing: the Official Journal of European Oncology Nursing Society
Ping Guo, Mendwas Dzingina, Alice M Firth, Joanna M Davies, Abdel Douiri, Suzanne M O'Brien, Cathryn Pinto, Sophie Pask, Irene J Higginson, Kathy Eagar, Fliss E M Murtagh
INTRODUCTION: Provision of palliative care is inequitable with wide variations across conditions and settings in the UK. Lack of a standard way to classify by case complexity is one of the principle obstacles to addressing this. We aim to develop and validate a casemix classification to support the prediction of costs of specialist palliative care provision. METHODS AND ANALYSIS: Phase I: A cohort study to determine the variables and potential classes to be included in a casemix classification...
March 17, 2018: BMJ Open
Samman Shahpar, Alex W K Wong, Susan Keeshin, Sarah Eickmeyer, Patrick Semik, Masha Kocherginsky, Stacy McCarty
BACKGROUND: Malignant brain tumors cause significant impairments in function due to nature of the disease. Patients with malignant brain tumors can make functional gains equivalent to those with stroke and traumatic brain injury in the inpatient rehabilitation setting. However, the efficacy of outpatient rehabilitation in this population has received little study. OBJECTIVE: To determine if an interdisciplinary outpatient rehabilitation program will improve functional outcomes in patients with malignant brain tumors...
March 14, 2018: PM & R: the Journal of Injury, Function, and Rehabilitation
Layla Parast, Q Burkhart, Courtney Gidengil, Eric C Schneider, Rita Mangione-Smith, K Casey Lion, Elizabeth A McGlynn, Adam Carle, Maria T Britto, Marc N Elliott
OBJECTIVES: To validate new caregiver-reported quality measures assessing care coordination services for children with medical complexity (CMC). METHODS: A cross sectional analysis of the associations between 20 newly developed Family Experiences with Coordination of Care (FECC) quality measures and three validation measures among 1209 caregivers who responded to a telephone or mailed survey between August-November 2013 in Minnesota and Washington. Validation measures included an access composite, a provider rating item, and a care coordination outcome measure, all derived from Consumer Assessments of Healthcare Providers and Systems (CAHPS© ) survey items...
March 14, 2018: Academic Pediatrics
Angelica Forsberg, Irene Vikman, Britt-Marie Wälivaara, Janice Rattray, Åsa Engström
PURPOSE: To explore (1) associations between patient and perioperative factors and dimensions of quality of care and (2) perioperative patients' self-rated physical health in relation to information, encouragement, and participation. DESIGN: A nonexperimental descriptive exploratory design (n = 170 participants). METHODS: Analyses were performed using quantitative techniques; collected data were quantitative in nature. Multiple logistic regression and Mann-Whitney U tests were used to analyze the data...
March 14, 2018: Journal of Perianesthesia Nursing: Official Journal of the American Society of PeriAnesthesia Nurses
Alexander J M Dingemans, Wilfried Krois, Juan Craniotis Rios, Richard J Wood, Marc A Levitt, Carlos A Reck-Burneo
BACKGROUND/PURPOSE: We conduct an annual medical mission to Hospital Ruth Paz para Niños Quemados y Cirugía Pediátrica in Honduras to operate on cases of anorectal malformations (ARM). To improve our knowledge of these patients, we compared their health-related quality of life (HRQoL), and the health literacy of their caregivers from this hospital and ours in the United States. METHODS: The BRIEF Health Literacy Screen (BHLS) and Pediatric Quality of Life Inventory 4...
February 23, 2018: Journal of Pediatric Surgery
Emily L Zale, Tessa J Heinhuis, Tara Tehan, Danielle Salgueiro, Jonathan Rosand, Ana-Maria Vranceanu
OBJECTIVE: Every year, millions of Americans become informal caregivers to loved ones admitted to Neuroscience Intensive Care Units (Neuro-ICU), and face challenges to Quality of Life (QoL). This study sought to identify associations between resiliency, distress, and caregiver QoL at time of Neuro-ICU admission. METHODS: Informal caregivers (N = 79, Mage  = 53, 64% female) of Neuro-ICU patients were recruited and completed self-report questionnaires during the hospitalization...
March 6, 2018: General Hospital Psychiatry
Maretha Visser, Tonya R Thurman, Alexandra Spyrelis, Tory M Taylor, Johanna K Nice, Michelle Finestone
Preventing HIV among young people is critical to achieving and sustaining global epidemic control. Evidence from Western settings suggests that family-centred prevention interventions may be associated with greater reductions in risk behaviour than standard adolescent-only models. Despite this, family-centred models for adolescent HIV prevention are nearly non-existent in South Africa - home to more people living with HIV than any other country. This paper describes the development and formative evaluation of one such intervention: an evidence-informed, locally relevant, adolescent prevention intervention engaging caregivers as co-participants...
March 6, 2018: Evaluation and Program Planning
Maria Heckel, Stephanie Stiel, Franziska A Herbst, Johanna M Tiedtke, Alexander Sturm, Thomas Adelhardt, Christian Bogdan, Cornel Sieber, Oliver Schöffski, Frieder R Lang, Christoph Ostgathe
PURPOSE: Palliative care professionals are frequently confronted with patients colonized or infected with MDRO. One major challenge is how to balance necessary isolation measures and social inclusion as one of the main principles of palliative and end-of-life care. To date, MDRO-specific policies and protocols vary widely between institutions. AIM: provide empirical recommendations on how to deal with hospitalized MDRO patients in end-of-life care. METHODS: Recommendations were developed based on (i) initial results of face-to-face interviews and focus groups, (ii) impartial experts' comments and consensus on the draft via online survey and (iii) a face-to-face meeting with consortium members to finalize recommendations...
March 16, 2018: Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer
Amanda Roze des Ordons, Tasnim Sinuff, Henry T Stelfox, Jane Kondejewski, Shane Sinclair
CONTEXT: Spiritual distress contributes to patient and family experiences of care. OBJECTIVES: To map the literature on how seriously ill patients and their family members experience spiritual distress within inpatient settings. METHODS: Our scoping review included 4 databases using search terms 'existential' or 'spiritual' combined with 'angst', 'anxiety', 'distress', 'stress' or 'anguish'. We included original research describing experiences of spiritual distress among adult patients or family members within inpatient settings and instrument validation studies...
March 13, 2018: Journal of Pain and Symptom Management
Marco Artico, Daniela D'Angelo, Michela Piredda, Tommasangelo Petitti, Luciano Lamarca, Maria Grazia de Marinis, Angelo Dante, Maura Lusignani, Maria Matarese
CONTEXT: Patients with advanced illnesses show the highest prevalence for pressure ulcers. In the palliative care setting the ultimate goal is injury healing, but equally important is wound maintenance, wound palliation (wound-related pain and symptom management), and primary and secondary wound prevention. OBJECTIVES: To describe the course of healing for pressure ulcers in a home palliative care setting according to different end-points, and to explore patient and caregiver characteristics and specific care activities associated with their achievement...
March 13, 2018: Journal of Pain and Symptom Management
Michael H Connors, Katrin M Seeher, John Crawford, David Ames, Michael Woodward, Henry Brodaty
INTRODUCTION: Neuropsychiatric symptoms are common in Alzheimer's disease. Previous research has attempted to identify subsyndromes-sets of symptoms related to one another-to clarify underlying mechanisms and treatment targets. We examined the stability of these subsyndromes over time. METHODS: We administered the Neuropsychiatric Inventory annually for 3 years to 447 patients with Alzheimer's disease recruited from memory clinics. We conducted principal component analyses at each time point and multigroup confirmatory factor analyses across time...
March 13, 2018: Alzheimer's & Dementia: the Journal of the Alzheimer's Association
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