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Informal caregiving

Stefanie Doebler, Assumpta Ryan, Sally Shortall, Aideen Maguire
Informal care-giving can be a demanding role which has been shown to impact on physical, psychological and social well-being. Methodological weaknesses including small sample sizes and subjective measures of mental health have led to inconclusive evidence about the relationship between informal care-giving and mental ill-health. This paper reports on a study carried out in a UK region which investigated the relationship between informal care-giving and mental ill-health. The analysis was conducted by linking three data sets, the Northern Ireland Longitudinal Study, the Northern Ireland Enhanced Prescribing Database and the Proximity to Service Index from the Northern Ireland Statistics and Research Agency...
October 18, 2016: Health & Social Care in the Community
Lara Hart, Rashmi Nedadur, Jaime Reardon, Natalie Sirizzotti, Caroline Poonai, Kathy N Speechley, Jay Loftus, Michael Miller, Marina Salvadori, Amanda Spadafora, Naveen Poonai
OBJECTIVES: Fever is a common reason for an emergency department visit and misconceptions abound. We assessed the effectiveness of an interactive Web-based module (WBM), read-only Web site (ROW), and written and verbal information (standard of care [SOC]) to educate caregivers about fever in their children. METHODS: Caregivers in the emergency department were randomized to a WBM, ROW, or SOC. Primary outcome was the gain score on a novel questionnaire testing knowledge surrounding measurement and management of fever...
October 4, 2016: Pediatric Emergency Care
Gail Hornor, Beth A Fischer
INTRODUCTION: The purposes of this study were to describe child demographics, familial psychosocial factors, and sexual abuse case characteristics in children experiencing sexual abuse revictimization before the age of 18 years, and to compare them with children not identified as experiencing revictimization. METHOD: A retrospective chart review was conducted from both the revictimization group and the one-assessment group and reviewed for child sexual abuse case characteristics, familial psychosocial characteristics, and child demographic information...
October 3, 2016: Journal of Forensic Nursing
M Raj, S W Choi, J Platt
Informed consent (IC) struggles to meet the ethical principles it strives to embody in the context of hematopoietic cell transplantation (HCT). Patients often participate in multiple clinical trials making it difficult to effectively inform the participants and fulfill complex regulations. The recent Notice of Proposed Rule Making would make major changes to federal requirements, providing a timely opportunity to evaluate existing practice. Twenty health care professionals within a Midwest Academic Medical Center involved in obtaining IC in the HCT clinic or involved in patient care during or after the IC process were interviewed to understand: (1) how they approached the IC process; (2) how they described a 'successful' IC process; and (3) opportunities for innovation...
October 17, 2016: Bone Marrow Transplantation
Brittany Harding, Rylan Egan, Peter Kannu, Jennifer J MacKenzie
Parents have the opportunity to educate their children to facilitate behaviours and lifestyle habits that may prevent or delay genetic disease, or mitigate predispositions within the family. We sought to determine parents' understanding of genetic knowledge and heritability. Using a quantitative survey methodology 108 volunteer participants were surveyed from a convenience sample of all parents/caregivers within the waiting room of a general children's outpatient clinic. Results indicated that average genetic knowledge levels were fairly high, with the majority of participants scoring 70-80 % correct on knowledge-based questions...
October 17, 2016: Journal of Genetic Counseling
Randall Winnette, Lisa M Hess, Steven J Nicol, Datchen Fritz Tai, Catherine Copley-Merriman
BACKGROUND: Soft tissue sarcomas (STS) are a heterogenous group of rare tumors that involve the connective tissue in the body (e.g. muscle, tendons). As with many rare tumors, little is known about the impact of STS on patient well-being. OBJECTIVE: The aim of this review was to better understand current knowledge related to patient experience and quality of life (QOL) following diagnosis of STS. METHODS: A systematic review of English-language articles published from 2005 to 2015 was conducted in the PubMed/MEDLINE, Embase, PsychINFO, and Evidence-Based Medicine databases...
October 15, 2016: Patient
Joseph Arthur, Sriram Yennu, Kresnier Perez Zapata, Hilda Cantu, Jimin Wu, Diane Liu, Eduardo Bruera
BACKGROUND: Data on the use of question prompt sheets (QPS) in palliative care is limited. Our team previously developed a single page QPS using a Delphi process. The main objective of this study was to determine the perception of helpfulness of a QPS in patient-physician communication among advanced cancer outpatients. METHODS: 100/104(96%) eligible patients and 68/68(100%) caregivers received the QPS during their first palliative care clinic. 12 palliative medicine specialists also participated in the study...
October 12, 2016: Journal of Pain and Symptom Management
John G Cagle, Philip Osteen, Paul Sacco, Jodi Jacobson Frey
CONTEXT: Hospice social workers are charged with completing a psychosocial assessment for every new enrollee. This assessment is part of the patient's comprehensive assessment and serves to inform the plan of care and key quality indicators. OBJECTIVES: To review the content of hospice social work assessments because little is known about what assessment topics are included or overlooked. METHODS: Using a clustered random sample from all 50 states, we contacted hospice agencies and requested a blank copy of the social work assessment completed at intake...
October 12, 2016: Journal of Pain and Symptom Management
Brian S Barnett, Macjellings Mulenga, Michelle M Kiser, Anthony G Charles
OBJECTIVE: While psychological care, including supportive group therapy, is a mainstay of burn treatment in the developed world, few reports of support groups for burn survivors and their caregivers in the developing world exist. This study records the findings of a support group in Malawi and provides a qualitative analysis of thematic content discussed by burn survivors and caregivers. MATERIALS AND METHODS: We established a support group for burn survivors and caregivers from February-May 2012 in the burn unit at Kamuzu Central Hospital in Lilongwe, Malawi...
October 12, 2016: Burns: Journal of the International Society for Burn Injuries
Alvona Z Loh, Julia S Tan, Melvyn W Zhang, Roger C Ho
OBJECTIVE: The global prevalence of depressive and anxiety symptoms among caregivers of stroke survivors is unknown. Given the high index of caregiver burden, this meta-analysis aims to evaluate the pooled prevalence of depressive and anxiety symptoms among caregivers of stroke survivors globally and to determine underlying moderators. METHODS: The authors searched PubMed, Embase, PsychINFO, BIOSIS, Science Direct, and Cochrane CENTRAL databases from inception to June 2016, and relevant articles were selected in accordance to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines...
October 11, 2016: Journal of the American Medical Directors Association
Anup D Patel, Robert Moss, Steven W Rust, Jeremy Patterson, Robert Strouse, Satyanarayana Gedela, Jesse Haines, Simon M Lin
INTRODUCTION: Epilepsy is a common neurological condition. Seizure diary reports and patient- or caregiver-reported seizure counts are often inaccurate and underestimated. Many caregivers express stress and anxiety about the patient with epilepsy having seizures when they are not present. Therefore, a need exists for the ability to recognize and/or detect a seizure in the home setting. However, few studies have inquired on detection device features that are important to patients and their caregivers...
October 11, 2016: Epilepsy & Behavior: E&B
Wsam A Ghandourh
Advanced cancer patients commonly have misunderstandings about the intentions of treatment and their overall prognosis. Several studies have shown that large numbers of patients receiving palliative radiation or chemotherapy hold unrealistic hopes of their cancer being cured by such therapies, which can affect their ability to make well-informed decisions about treatment options. This review aimed to explore this discrepancy between patients' and physicians' expectations by investigating three primary issues: (1) the factors associated with patients developing unrealistic expectations; (2) the implications of having unrealistic hopes and the effects of raising patients' awareness about prognosis; and (3) patients' and caregivers' perspective on disclosure and their preferences for communication styles...
August 9, 2016: Journal of Medical Radiation Sciences
Audrey McKinlay, Mark Linden, Roberta DePompei, Catherine Aaro Jonsson, Vicki Anderson, Lucia Braga, Enrico Castelli, Peter de Koning, Carol A Hawley, Eric Hermans, Ingela Kristiansen, Alison Madden, Peter Rumney, Ron Savage, Beth Wicks
BACKGROUND: Providing appropriate rehabilitation services for Acquired Brain Injury (ABI) in childhood presents a number of challenges for caregivers, health and education professionals and the young person as they develop. PRIMARY OBJECTIVE: To record the challenges and possible creative solutions generated by an international group of professionals to address the needs of children with ABI. Review of information: Recommendations were generated from children's special interest group meetings of the International Brain Injury Association (Turin, Italy, 2001; Stockholm, Sweden, 2003; Melbourne, Australia, 2005; Lisbon, Portugal, 2008) and through meetings of the International Paediatric Brain Injury Society (IPBIS), formed in 2009...
October 14, 2016: Brain Injury: [BI]
Djin Lai, Julia Bodson, France A Davis, Doriena Lee, Fahina Tavake-Pasi, Edwin Napia, Jeannette Villalta, Valentine Mukundente, Ryan Mooney, Heather Coulter, Louisa A Stark, Ana C Sanchez-Birkhead, Deanna Kepka
Current sources of publicly available human papillomavirus (HPV) information may not adequately meet the needs of diverse families. This study sought to describe associations between sociodemographic and acculturation factors, and sources of HPV information among diverse parents and caregivers. Community organizations purposively recruited participants from African American, African refugee, Hispanic/Latino, American Indian, and Native Hawaiian and Pacific Islander communities for a 21-item survey (N = 228)...
October 12, 2016: Journal of Community Health
Thomas S Voss, Mikkel H Vendelbo, Ulla Kampmann, Steen B Pedersen, Thomas S Nielsen, Mogens Johannsen, Mads V Svart, Niels Jessen, Niels Møller
AIMS/HYPOTHESIS: The aims of this study were to determine the role of lipolysis in hypoglycaemia and define the underlying intracellular mechanisms. METHODS: Nine healthy volunteers were randomised to treatment order of three different treatments (crossover design). Treatments were: (1) saline control; (2) hyperinsulinaemic hypoglycaemia (HH; i.v. bolus of 0.1 U/kg insulin); and (3) hyperinsulinaemic euglycaemia (HE; i.v. bolus of 0.1 U/kg insulin and 20% glucose)...
October 12, 2016: Diabetologia
Christophoros Christophorou, Styliani Kleanthous, Dimosthenis Georgiadis, Donato M Cereghetti, Panayiotis Andreou, Cindy Wings, Eleni Christodoulou, George Samaras
Based on the demographic changes and the rapid increase of older population in Europe, major challenges are expected to rise, both in the economy as well as the society, whether the dominant care model for supporting elderly in living independently at home continues to rely on informal and formal caregivers' assistance. To respond to the above challenges, assistive technologies are called to develop Information and Communication Technology (ICT) services for supporting seniors to remain active and independent, for as long as possible, in their chosen home environment...
September 2016: Healthcare Technology Letters
Yi Lu, Hui Cai, Sheila J Bosch
AIM: This study examined how the spatial characteristics of patient beds, which are influenced by patient room design and nursing unit configuration, affect patients' perceptions about privacy. BACKGROUND: In the hospital setting, most patients expect a certain degree of privacy but also understand that their caregivers need appropriate access to them in order to provide high-quality care. Even veteran healthcare designers may struggle to create just the right balance between privacy and accessibility...
October 12, 2016: HERD
Robin S Mickelson, Kim M Unertl, Richard J Holden
BACKGROUND: Older adults with chronic disease struggle to manage complex medication regimens. Health information technology has the potential to improve medication management, but only if it is based on a thorough understanding of the complexity of medication management workflow as it occurs in natural settings. Prior research reveals that patient work related to medication management is complex, cognitive, and collaborative. Macrocognitive processes are theorized as how people individually and collaboratively think in complex, adaptive, and messy nonlaboratory settings supported by artifacts...
October 12, 2016: JMIR Human Factors
Marie L Campbell, Janet M Rankin
Institutional ethnography (IE) is used to examine transformations in a professional nurse's work associated with her engagement with a hospital's electronic health record (EHR) which is being updated to integrate professional caregiving and produce more efficient and effective health care. We review in the technical and scholarly literature the practices and promises of information technology and, especially of its applications in health care, finding useful the more critical and analytic perspectives. Among the latter, scholarship on the activities of economising is important to our inquiry into the actual activities that transform 'things' (in our case, nursing knowledge and action) into calculable information for objective and financially relevant decision-making...
October 10, 2016: Sociology of Health & Illness
Alexander Frizell Santillo, Karl Lundblad, Markus Nilsson, Maria Landqvist Waldö, Danielle van Westen, Jimmy Lätt, Erik Blennow Nordström, Susanna Vestberg, Olof Lindberg, Christer Nilsson
Disinhibition is an important symptom in neurodegenerative diseases. However, the clinico-anatomical underpinnings remain controversial. We explored the anatomical correlates of disinhibition in neurodegenerative disease using the perspective of grey and white matter imaging. Disinhibition was assessed with a neuropsychological test and a caregiver information-based clinical rating scale in 21 patients with prefrontal syndromes due to behavioural variant frontotemporal dementia (n = 12) or progressive supranuclear palsy (n = 9), and healthy controls (n = 25)...
2016: PloS One
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