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https://www.readbyqxmd.com/read/28937409/development-and-feasibility-of-self-management-application-in-left-ventricular-assist-devices
#1
Jesus M Casida, James E Aikens, Heidi Craddock, Matthew W Aldrich, Francis D Pagani
Despite major advancements in mechanical circulatory support, the self-management (SM) for patients with a left-ventricular assist device (LVAD) remains complex and challenging for patients and their caregivers. We have developed a mobile phone application (VAD Care App) to organize and simplify the LVAD SM process. This article describes the development and feasibility study of the app as an SM tool for LVAD patients and caregivers requiring support from ventricular assist device (VAD) coordinators. The specific aim was to evaluate the app's acceptability and usability and the users' competency...
September 20, 2017: ASAIO Journal: a Peer-reviewed Journal of the American Society for Artificial Internal Organs
https://www.readbyqxmd.com/read/28936996/caregiver-perceptions-on-intensive-care-a-qualitative-study-from-southern-india
#2
Shuba Kumar, Jony Christina, Anna Revathi Jagadish, John Victor Peter, Kurien Thomas, Thambu David Sudarsanam
BACKGROUND: Admission of a patient to an intensive care unit (ICU) can result in tremendous stress to family caregivers not only because of the need to provide physical and emotional support to the sick relative, but also due to the burden of decision-making on behalf of the critically ill person. We enquired about family caregivers' perspectives on intensive care, the challenges they faced with decision-making and their perceptions on the nature of their interactions with healthcare providers...
May 2017: National Medical Journal of India
https://www.readbyqxmd.com/read/28936937/-informal-care-in-dementia-and-the-power-of-social-health
#3
M Vernooij-Dassen, A de Boer, M E de Vugt, F J M Meiland, R M Dröes
- In this article, we describe the current state of affairs with respect to informal care for people with dementia. We focus on the impact of informal care on the caregiver, caregiving strategies and effective ways to support informal caregivers, including e-health and technological support.- Informal care for people with dementia is intense and has consequences, both positive and negative: 78% of informal caregivers has good feelings about the care they give, but 15% feels heavily burdened.- A stimulating and supportive approach creates a positive and safe environment...
2017: Nederlands Tijdschrift Voor Geneeskunde
https://www.readbyqxmd.com/read/28936928/-i-m-trying-to-be-the-safety-net-family-protection-of-patients-with-moderate-to-severe-tbi-during-the-hospital-stay
#4
Tolu O Oyesanya, Barbara Bowers
Research has shown that during hospital stay, family caregivers of patients with traumatic brain injury (TBI) perceive that their role is to protect the patient; however, research on this topic is limited. The purpose of this article is to describe family caregivers' experience of protecting patients with TBI during the hospital stay. Grounded theory was used to conduct 24 interviews with 16 family caregivers. Findings showed family caregivers worked to protect the patient's physical and emotional safety, using the following strategies: (a) influencing the selection of staff, (b) breaking the patient's bad habits, (c) anticipating how to orchestrate the home environment; (d) connecting on an emotional level, (e) managing visitors, and (f) connecting on an emtoional level...
October 2017: Qualitative Health Research
https://www.readbyqxmd.com/read/28935132/acute-leukemia-patients-needs-qualitative-findings-and-opportunities-for-early-palliative-care
#5
Nathan A Boucher, Kimberly S Johnson, Thomas W LeBlanc
BACKGROUND AND OBJECTIVE: Patients with acute leukemias likely have needs that palliative care can respond to, yet little is known about specific challenges they face, particularly during active treatment. We examined acute myeloid leukemia (AML) patients' expressed challenges and supports following intensive induction chemotherapy. We aimed to understand opportunities for palliative care interventions in this population. METHODS: A qualitative study of AML patients with high-risk disease at Duke University Hospital, Durham, NC...
September 18, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28935129/environmental-design-for-end-of-life-care-an-integrative-review-on-improving-quality-of-life-and-managing-symptoms-for-patients-in-institutional-settings
#6
REVIEW
Rana Sagha Zadeh, Paul Eshelman, Judith Setla, Laura Kennedy, Emily Hon, Aleksa Basara
CONTEXT: The environment in which end-of-life care is delivered can support or detract from the physical, psychological, social, and spiritual needs of patients, their families, and their caretakers. OBJECTIVES: This review aims to organize and analyze the existing evidence related to environmental design factors that improve the quality of life and total well-being of people involved in end-of-life care and to clarify directions for future research. METHOD: This integrated literature review synthesized and summarized research evidence from the fields of medicine, environmental psychology, nursing, palliative care, architecture, interior design, and evidence-based design...
September 18, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28933876/infant-iron-deficiency-child-affect-and-maternal-unresponsiveness-testing-the-long-term-effects-of-functional-isolation
#7
Patricia East, Betsy Lozoff, Estela Blanco, Erin Delker, Jorge Delva, Pamela Encina, Sheila Gahagan
Children who are iron deficient (ID) or iron-deficient anemic (IDA) have been shown to seek and receive less stimulation from their caregivers, contributing to functional isolation. Over time, the reduced interactions between child and caregiver are thought to interfere with the acquisition of normative social competencies and adversely affect the child's development. The current study examined functional isolation in children who were ID or IDA in infancy in relation to social difficulties in middle childhood and problem behaviors in adolescence...
September 21, 2017: Developmental Psychology
https://www.readbyqxmd.com/read/28933743/european-policies-to-promote-children-s-rights-and-combat-child-poverty
#8
Mona Sandbæk
The upbringing of children relies heavily on shared responsibilities between parents and society. The Council of Europe Recommendation (2006) 19 on Policy to Support Positive Parenting and the European Commission Recommendation (2013) Investing in Children: Breaking the Cycle of Disadvantage, both aim at supporting parents to care and provide for their children in accordance with the UN Convention on the Rights of the Child. By means of a document analysis this article examines what kind of parental practices and provision to parents the recommendations suggest to safeguard children's rights in the family...
July 26, 2017: International Journal of Environmental Research and Public Health
https://www.readbyqxmd.com/read/28932158/the-burden-perceived-by-informal-caregivers-of-the-elderly-in-saudi-arabia
#9
Sulaiman A Alshammari, Abdullah A Alzahrani, Khaled A Alabduljabbar, Abdulaziz A Aldaghri, Yazeed A Alhusainy, Mohammed A Khan, Rakan A Alshuwaier, Ismail N Kariz
OBJECTIVES: The objective of this study was to discover the characteristics of informal caregivers of elderly patients; to determine the socioeconomic, psychological, and physical consequences facing informal caregivers; and to measure their burdens and needs. MATERIALS AND METHODS: This study was a cross-sectional survey of informal caregivers of elderly patients. Participants were recruited from different hospitals and primary care clinics in Riyadh, Saudi Arabia...
September 2017: Journal of Family & Community Medicine
https://www.readbyqxmd.com/read/28931454/the-experience-of-informal-caregivers-of-patients-with-motor-neurone-disease-a-thematic-synthesis
#10
Lucy Holkham, Andy Soundy
OBJECTIVE: Research is required in order to illustrate and detail the experiences of informal caregivers of patients with motor neurone disease (pwMND) to further advance the research base and to inform the development of future support structures and services. Due to the heterogeneous nature of caregiving for pwMND, one way in which this can be achieved is through a qualitative review. A qualitative thematic analysis of existing qualitative studies has not, to the best of the authors' knowledge, been previously undertaken...
September 21, 2017: Palliative & Supportive Care
https://www.readbyqxmd.com/read/28931434/long-term-outcome-of-autistic-spectrum-disorder-a-retrospective-case-study-in-a-southern-italian-region
#11
Francesca Felicia Operto, Federica Martino, Annalisa Rinaldi, Angelo Cerracchio, Giovanni Salvati, Mariano Orza, Claudia Lembo, Gianvito Panzarino, Claudia Di Paolantonio, Alberto Verrotti, Giovanni Farello, Giangennaro Coppola
BACKGROUND: Autism Spectrum Disorder (ASD) is a complex neurodevelopmental disorder, characterized by impaired social communication and restricted and repetitive behaviours, as well as associated features including intellectual disability and impaired sensorimotor function. Despite a growing interest in this devastating disorder for families and young parents, there are no certainties as regards its aetiology, although a significant genetic background is considered to be important. Since there is little information about the social adaptation and quality of life of patients with Autism Spectrum Disorder, we decided to study and evaluate the long-term outcome and quality of life in a sample of children, adolescent and young adults...
September 20, 2017: Italian Journal of Pediatrics
https://www.readbyqxmd.com/read/28931383/evaluation-of-caregiver-friendly-workplace-policy-cfwps-interventions-on-the-health-of-full-time-caregiver-employees-ces-implementation-and-cost-benefit-analysis
#12
Allison M Williams, Emile Tompa, Donna S Lero, Janet Fast, Amin Yazdani, Isik U Zeytinoglu
BACKGROUND: Current Canadian evidence illustrating the health benefits and cost-effectiveness of caregiver-friendly workplace policies is needed if Canadian employers are to adopt and integrate caregiver-friendly workplace policies into their employment practices. The goal of this three-year, three study research project is to provide such evidence for the auto manufacturing and educational services sectors. The research questions being addressed are: What are the impacts for employers (economic) and workers (health) of caregiver-friendly workplace policy intervention(s) for full-time caregiver-employees? What are the impacts for employers, workers and society of the caregiver-friendly workplace policy intervention(s) in each participating workplace? What contextual factors impact the successful implementation of caregiver-friendly workplace policy intervention(s)? METHODS: Using a pre-post-test comparative case study design, Study A will determine the effectiveness of newly implemented caregiver-friendly workplace policy intervention(s) across two workplaces to determine impacts on caregiver-employee health...
September 20, 2017: BMC Public Health
https://www.readbyqxmd.com/read/28928109/components-and-outcomes-of-internet-based-interventions-for-caregivers-of-older-adults-systematic-review
#13
REVIEW
Cassioppée Guay, Claudine Auger, Louise Demers, W Ben Mortenson, William C Miller, Dominique Gélinas-Bronsard, Sara Ahmed
BACKGROUND: When trying to access interventions to improve their well-being and quality of life, family caregivers face many challenges. Internet-based interventions provide new and accessible opportunities to remotely support them and can contribute to reducing their burden. However, little is known about the link existing between the components, the use of behavior change techniques, and the outcomes of these Internet-based interventions. OBJECTIVE: This study aimed to provide an update on the best available evidence about the efficacy of Internet-based interventions for caregivers of older adults...
September 19, 2017: Journal of Medical Internet Research
https://www.readbyqxmd.com/read/28927472/service-use-advance-planning-and-lifestyle-changes-following-cognitive-screening-in-primary-healthcare-in-singapore
#14
Jamie Jia Yan Lee, Claire L Thompson, Muhammad Amin Shaik, Esther Wan, Christopher Li-Hsian Chen, Yan Hong Dong
BACKGROUND: Despite recent interest in community-based screening programs to detect undiagnosed cognitive disorder, little is known about whether screening leads to further diagnostic evaluation, or the effects of such programs in terms of actual changes in patient or caregiver behavior. This study followed up informants of older adults (i.e. caregivers of patients who completed informant-based screening regarding the patient) following participation in a study screening for undiagnosed memory problems, to explore uptake of further diagnostic evaluation or treatment, advance planning or preparations, lifestyle changes, medication adherence, and use of support services...
September 20, 2017: International Psychogeriatrics
https://www.readbyqxmd.com/read/28926598/-if-he-could-speak-he-would-be-able-to-point-out-who-does-those-things-to-him-experiences-of-violence-and-access-to-child-protection-among-children-with-disabilities-in-uganda-and-malawi
#15
Lena Morgon Banks, Susan A Kelly, Nambusi Kyegombe, Hannah Kuper, Karen Devries
INTRODUCTION: There is growing evidence that children with disabilities face an increased risk of violence globally. While child protection mechanisms to prevent and respond to violence-including formal government systems and more informal programmes and activities run by local communities or NGOs-are slowly becoming operationalised in low- and- middle-income countries, little is known about whether existing mechanisms are disability-inclusive. The aim of this study is to provide a better understanding of children with disabilities' experiences of violence and their access to available child protection mechanisms in low resource settings...
2017: PloS One
https://www.readbyqxmd.com/read/28926157/evaluation-of-a-palliative-and-hospice-care-telephone-hotline-for-severely-affected-multiple-sclerosis-patients-and-their-caregivers
#16
Julia Strupp, Bernadette Groebe, Andrea Knies, Michaela Mai, Raymond Voltz, Heidrun Golla
BACKGROUND: Palliative and hospice care (PHC) still highly focus on cancer patients. OBJECTIVES: To connect severely affected Multiple Sclerosis (MS) patients and caregivers to PHC, a nationwide hotline was implemented facilitating access to PHC. METHODS: The hotline was designed in cooperation with the German Multiple Sclerosis Society. Self-disclosed information given by callers was documented using case report forms supplemented by personal notes...
September 19, 2017: European Journal of Neurology: the Official Journal of the European Federation of Neurological Societies
https://www.readbyqxmd.com/read/28924681/family-caregivers-to-adults-with-cancer-the-consequences-of-caring
#17
Anna-Leila Williams
A person living with cancer will potentially have some degree of physical, cognitive, and/or psychological impairment, periods of unemployment, financial concerns, social isolation, and existential questions, any or all of which can impact the family and friends who surround them. In our current era of health care, patients with cancer receive invasive diagnostic studies and aggressive treatment as outpatients, and then convalesce at home. As such, cancer family caregivers are de facto partners with the healthcare team...
2018: Recent Results in Cancer Research
https://www.readbyqxmd.com/read/28922292/advances-in-delivery-of-ambulatory-autologous-stem-cell-transplantation-for-multiple-myeloma
#18
Jack Khouri, Navneet S Majhail
PURPOSE OF REVIEW: Autologous stem cell transplantation (ASCT) is generally performed in the inpatient setting in its entirety. Several centers have demonstrated the feasibility of performing ASCT for myeloma in the ambulatory setting. We review the safety, cost-effectiveness, complications and outcomes of outpatient ASCT for myeloma. RECENT FINDINGS: Published studies are heterogeneous but suggest that outpatient ASCT for myeloma is cost-effective and associated with a shorter or no initial hospitalization, albeit there is a high rate of readmission for complications...
September 15, 2017: Current Opinion in Supportive and Palliative Care
https://www.readbyqxmd.com/read/28921385/acute-impact-of-home-parenteral-nutrition-in-patients-with-late-stage-cancer-on-family-caregivers-preliminary-data
#19
Lidia Santarpia, Federico Bozzetti
PURPOSE: Since there is no information regarding quality of life of caregivers assisting patients with advanced malignancy on home parenteral nutrition, herewith we report a preliminary series of 19 patients who received total parenteral nutrition at home under the strict supervision of their relatives. METHODS: The relatives of 19 incurable patients with cancer-related cachexia, discharged from the hospital with a home parenteral nutrition program, were prospectively studied...
September 18, 2017: Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer
https://www.readbyqxmd.com/read/28918700/dementia-and-migration-family-care-patterns-merging-with-public-care-services
#20
Mette Sagbakken, Ragnhild Storstein Spilker, Reidun Ingebretsen
This article focuses on cognitive impairment and dementia in the context of transnational migration. Based on data from focus group discussions and interviews, we conclude that to adjust to the needs of care within ethnic-minority communities, it is important to consider not only the availability of household and kin members but also the present understanding of obligation and reciprocity underlying the perception of care. Another important issue to realize is that caregivers, women in particular, might feel obliged to conform to a traditional caregiver role, but without the support from a wider extended family, and in the context of other pressing roles and duties...
September 1, 2017: Qualitative Health Research
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