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Caregiver burden in chronic illness

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https://www.readbyqxmd.com/read/30181188/work-of-being-an-adult-patient-with-chronic-kidney-disease-a-systematic-review-of-qualitative-studies
#1
Javier Roberti, Amanda Cummings, Michelle Myall, Jonathan Harvey, Kate Lippiett, Katherine Hunt, Federico Cicora, Juan Pedro Alonso, Carl R May
INTRODUCTION: Chronic kidney disease (CKD) requires patients and caregivers to invest in self-care and self-management of their disease. We aimed to describe the work for adult patients that follows from these investments and develop an understanding of burden of treatment (BoT). METHODS: Systematic review of qualitative primary studies that builds on EXPERTS1 Protocol, PROSPERO registration number: CRD42014014547. We included research published in English, Spanish and Portuguese, from 2000 to present, describing experience of illness and healthcare of people with CKD and caregivers...
September 4, 2018: BMJ Open
https://www.readbyqxmd.com/read/30147839/feasibility-and-effectiveness-of-telehealth-occupational-therapy-home-modification-interventions
#2
Marnie Renda, Jennifer E Lape
Despite the effectiveness of occupational therapy home modification interventions, persons with disabilities may not receive them due to service delivery costs, limited number of therapists, and expansive geographic service areas. The need for occupational therapy home modification interventions will increase with the rising U.S. aging population, incidence of chronic illness, and shift toward community-based care. This study examined the feasibility of telehealth occupational therapy home modification interventions using participant owned smart phones, tablets, or computers...
2018: International Journal of Telerehabilitation
https://www.readbyqxmd.com/read/30136290/integrated-memory-care-clinic-design-implementation-and-initial-results
#3
Carolyn K Clevenger, Janet Cellar, Mariya Kovaleva, Laura Medders, Kenneth Hepburn
The Integrated Memory Care Clinic (IMCC) is a patient-centered medical home as defined by the National Committee for Quality Assurance directed by advanced practice registered nurses (APRNs) caring for persons living with dementia (PLWD); physicians provide specialty consultation but do not direct care or care planning. The IMCC incorporates geriatric nursing, social work, and APRNs from neurology, gerontology, palliative care, and geriatric psychiatry. APRNs provide comprehensive, coordinated primary care for dementia, other chronic conditions, and minor acute illnesses...
August 23, 2018: Journal of the American Geriatrics Society
https://www.readbyqxmd.com/read/30118371/family-caregivers-heavy-and-overloaded-burden-in-advanced-chronic-obstructive-pulmonary-disease
#4
Susann Strang, Mirela Osmanovic, Charlotta Hallberg, Peter Strang
BACKGROUND: Due to severe symptoms and poor prognosis in advanced cases, chronic obstructive pulmonary disease (COPD) is today seen as a palliative diagnosis. The everyday lives of patients as well as their relatives are restricted and affected by significant psychosocial problems. OBJECTIVE: To obtain detailed knowledge about people's experiences, for example, transitions in relationships, responsibility, and possible changes in communication, caused by the illness...
August 17, 2018: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/30115202/widening-the-net-exploring-social-determinants-of-burden-of-informal-carers
#5
I Gresswell, L Lally, D Adamis, G M McCarthy
OBJECTIVES: Providing care for a person with dementia or other chronic illness at home often places stress on the primary caregiver. In an Irish population, ~67% of carers reported experiencing extreme physical or mental tiredness. This study aimed to identify factors that influence carer burden and identify the sub-populations of carers who are most susceptible to burden. METHODS: Consecutive carers referred to a local carers' support organisation completed the following measurements: the Neuropsychiatric Inventory, Zarit Burden Interview, Social Network Index, General Health Questionnaire, Short Form Survey, Hamilton Depression Rating Scale, Brown's Locus of Control scale and provided demographic data on themselves and their patient...
March 2018: Irish Journal of Psychological Medicine
https://www.readbyqxmd.com/read/30043638/associations-of-knowledge-of-alzheimer-s-disease-and-memory-loss-and-employment-status-with-burden-in-african-american-and-caucasian-family-caregivers
#6
Cathy B Scott, Olivio J Clay, Fayron Epps, Fawn A Cothran, Ishan C Williams
Caring for an individual living with Alzheimer's disease and other forms of dementia is especially challenging and impacts every aspect of the lives of the family caregivers. Family caregiving is defined as informal, unpaid care provided by family or friends to people with a chronic illness or disability. Caregiver burden, often experienced by a caregiver for a cognitively impaired family member, is multifaceted involving physical, psychological, social, and emotional problems. To date, little has been done to examine the relationship between the knowledge of Alzheimer's disease and memory loss and caregiver burden...
July 25, 2018: Dementia
https://www.readbyqxmd.com/read/30036215/supporting-self-management-in-palliative-care-throughout-the-cancer-care-trajectory
#7
Dena Schulman-Green, Abraham Brody, Stephanie Gilbertson-White, Robin Whittemore, Ruth McCorkle
PURPOSE OF REVIEW: Despite increased survivorship and the subsequent need for chronic management of cancer, the association of self-management and palliative care is still emerging within cancer care. Routine and timely use of self-management strategies in the palliative setting can help reduce self-management burden and maximize quality of life. In this review, we consider the complementary relationship of self-management and palliative care and how they support living with cancer as a chronic illness...
September 2018: Current Opinion in Supportive and Palliative Care
https://www.readbyqxmd.com/read/29965990/patients-experiences-of-self-management-and-strategies-for-dealing-with-chronic-conditions-in-rural-malawi
#8
Vibian Angwenyi, Carolien Aantjes, Murphy Kajumi, Jeroen De Man, Bart Criel, Joske Bunders-Aelen
BACKGROUND: The high burden of chronic communicable diseases such as HIV/AIDS, and an escalating rise of non-communicable diseases (NCDs) in Malawi and other sub-Saharan African countries, calls for a shift in how health care services are designed and delivered. Patient-centred care and patient self-management are critical elements in chronic care, and are advocated as universal strategies. In sub-Saharan Africa, there is need for more evidence around the practice of patient self-management, and how to best support patients with chronic conditions in the African context...
2018: PloS One
https://www.readbyqxmd.com/read/29920636/quality-of-life-in-parents-of-children-born-with-esophageal-atresia
#9
Stefanie Witt, Michaela Dellenmark-Blom, Jens Dingemann, Carmen Dingemann, Benno M Ure, Barbara Gomez, Monika Bullinger, Julia Quitmann
INTRODUCTION:  For parents of chronically ill children, the experiences of caregiving are challenged by increased demands and restrictions imposed by their child's disease. Therefore, this study aims to investigate the quality of life (QoL) in parents of children born with esophageal atresia (EA) and to explore associated factors. METHODS:  Parents of children (2-17 years) with EA recruited from two German pediatric hospitals participated in this cross-sectional study about QoL in EA...
June 19, 2018: European Journal of Pediatric Surgery
https://www.readbyqxmd.com/read/29894931/the-user-experiences-and-clinical-outcomes-of-an-online-personal-health-record-to-support-self-management-of-bipolar-disorder-a-pretest-posttest-pilot-study
#10
Silvio C G H van den Heuvel, Daniëlle Meije, Eline J Regeer, Henny Sinnema, Rixt F Riemersma, Ralph W Kupka
BACKGROUND: Self-management comprises knowledge, behavior, activities and resources providing people with bipolar disorder (BD) control over fluctuating mood and activity-patterns. The 'Self-management and Dialogue in Bipolar Disorder' project entailed the tailoring of an online personal health record (PHR) originally designed for the chronically ill to monitor condition and share information with their clinician to people with BD (PHR-BD). The aim of this study was to evaluate the feasibility, utility and user-experiences of participants with BD, relatives, and healthcare professionals who worked with the PHR-BD...
October 1, 2018: Journal of Affective Disorders
https://www.readbyqxmd.com/read/29872381/at-home-transcranial-direct-current-stimulation-tdcs-with-telehealth-support-for-symptom-control-in-chronically-ill-patients-with-multiple-symptoms
#11
Alexa Riggs, Vaishali Patel, Bhaskar Paneri, Russell K Portenoy, Marom Bikson, Helena Knotkova
Transcranial direct current stimulation (tDCS) delivered in multiple sessions can reduce symptom burden, but access of chronically ill patients to tDCS studies is constrained by the burden of office-based tDCS administration. Expanded access to this therapy can be accomplished through the development of interventions that allow at-home tDCS applications. Objective: We describe the development and initial feasibility assessment of a novel intervention for the chronically ill that combines at-home tDCS with telehealth support...
2018: Frontiers in Behavioral Neuroscience
https://www.readbyqxmd.com/read/29871745/predicting-caregiver-burden-in-general-veterinary-clients-contribution-of-companion-animal-clinical-signs-and-problem-behaviors
#12
M B Spitznagel, D M Jacobson, M D Cox, M D Carlson
Caregiver burden, found in many clients with a chronically or terminally ill companion animal, has been linked to poorer psychosocial function in the client and greater utilization of non-billable veterinary services. To reduce client caregiver burden, its determinants must first be identified. This study examined if companion animal clinical signs and problem behaviors predict veterinary client burden within broader client- and patient-based risk factor models. Data were collected in two phases. Phase 1 included 238 companion animal owners, including those with a sick companion animal (n=119) and matched healthy controls (n=119) recruited online...
June 2018: Veterinary Journal
https://www.readbyqxmd.com/read/29804204/predictors-of-burden-and-quality-of-sleep-among-family-caregivers-of-patients-with-cancer
#13
Laila I Al-Daken, Muayyad M Ahmad
PURPOSES: This study aimed to (1) assess the levels of burden and quality of sleep among family caregivers (FCs) of patients with cancer and (2) examine the predictors of burden among FCs of patients with cancer in Jordan. METHODS: A convenience sample of 111 FCs of patients with cancer has completed the Caregiver Burden Inventory and Pittsburgh Sleep Quality Index to assess the levels of burden and quality of sleep. RESULTS: The mean and (standard deviation) of burden for FCs was 37...
November 2018: Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer
https://www.readbyqxmd.com/read/29783981/implementing-integrated-services-for-people-with-epilepsy-in-primary-care-in-ethiopia-a-qualitative-study
#14
Raquel Catalao, Tigist Eshetu, Ruth Tsigebrhan, Girmay Medhin, Abebaw Fekadu, Charlotte Hanlon
BACKGROUND: In order to tackle the considerable treatment gap for epilepsy in many low- and middle-income countries (LMICs), a task sharing model is recommended whereby care is integrated into primary health services. However, there are limited data on implementation and impact of such services in LMICs. Our study aimed to explore the perspectives of service users and caregivers on the accessibility, experience and perceived impact of epilepsy treatment received in a task-shared model in a rural district of Ethiopia...
May 21, 2018: BMC Health Services Research
https://www.readbyqxmd.com/read/29755917/sharing-is-caring-minimizing-the-disruption-with-palliative-care
#15
EDITORIAL
Abd Moain Abu Dabrh, Robert P Shannon, Richard J Presutti
There is an upward trend incidence of multiple chronic life-limiting conditions with a well-documented associated impact on patients and their caregivers. When patients approach the end of life, they are often faced with a challenging multidimensional burden while navigating a complex health care system. Patients and families/caregivers are faced with daily decisions, often with little or no frame of reference or medical knowledge. The "what, how, when, and where" puzzle during this challenging time can be overwhelming for patients and their families, and when clinicians do not contemplate this associated workload's impact on patients and caregivers' capacity for self-care, patients and caregivers scramble to find compensatory solutions, often putting their health care at lower priority...
March 13, 2018: Curēus
https://www.readbyqxmd.com/read/29754433/unsung-heroes-flying-blind-a-metasynthesis-of-parents-experiences-of-caring-for-children-with-special-health-care-needs-at-home
#16
Carina Nygård, Anne Clancy
AIMS AND OBJECTIVES: To aggregate, synthesise and interpret qualitative research studies of parents' experiences of caring for a child with special health-care needs at home. BACKGROUND: Advances in the field of medical and nursing science have ensured better survival rates for children with chronic illnesses. Many of these children have significant special health-care needs. Today parents assume a caregiver role, undertaking tasks previously provided by nurses in hospitals...
August 2018: Journal of Clinical Nursing
https://www.readbyqxmd.com/read/29691887/correlate-of-burden-and-coping-ability-of-caregivers-of-older-adults-with-chronic-illness-in-nigeria
#17
Joel Olayiwola Faronbi
AIM: Caring for older adults with chronic illness is associated with enormous physical and psychological stress on the informal caregivers. This study assessed burden experienced by caregivers of older adults with chronic illness, explored coping strategies of caregivers in relation to identified chronic conditions and determined the influence of caregiver's burden, caregiver's characteristics and older adult's characteristics on their coping ability. METHOD: This is a cross-sectional, correlational study, and data were collected among 325 caregivers of older adults living with chronic illness in Osun State, Nigeria, using a checklist, Katz IADL, Zarit Burden Interview and Brief Cope Scale...
April 25, 2018: Scandinavian Journal of Caring Sciences
https://www.readbyqxmd.com/read/29564712/a-systematic-review-of-indigenous-caregiver-functioning-and-interventions
#18
Lesli Hokanson, Michael Gerhardt Quinn, Natalie Schüz, Kristy de Salas, Jenn Scott
PURPOSE: There is a global increase in chronic, degenerative illnesses that require long-term intervention and support as a result of the aging population. The majority of support needs are met by informal family caregivers. While there have been three decades of research focusing on caregivers in general, the extent to which research has focused on Indigenous caregivers is unclear. Worldwide, Indigenous peoples face severe economic and health disadvantages that may make them even more vulnerable to the negative aspects of informal caregiving...
August 2018: Quality of Life Research
https://www.readbyqxmd.com/read/29520559/life-for-patients-with-myelofibrosis-the-physical-emotional-and-financial-impact-collected-using-narrative-medicine-results-from-the-italian-back-to-life-project
#19
Francesca Palandri, Giulia Benevolo, Alessandra Iurlo, Elisabetta Abruzzese, Angelo M Carella, Chiara Paoli, Giuseppe A Palumbo, Massimiliano Bonifacio, Daniela Cilloni, Alessandro Andriani, Attilio Guarini, Diamante Turri, Elena Maria Elli, Antonietta Falcone, Barbara Anaclerico, Pellegrino Musto, Nicola Di Renzo, Mario Tiribelli, Renato Zambello, Caterina Spinosa, Alessandra Ricco, Letizia Raucci, Bruno Martino, Mario Annunziata, Silvia Pascale, Anna Marina Liberati, Giorgio La Nasa, Margherita Maffioli, Massimo Breccia, Novella Pugliese, Silvia Betti, Gianfranco Giglio, Antonietta Cappuccio, Luigi Reale
PURPOSE: Myelofibrosis (MF) is a chronic myeloproliferative neoplasm characterised by an aggressive clinical course, with disabling symptoms and reduced survival. Patients experience a severely impaired quality of life and their families face the upheaval of daily routines and high disease-related financial costs. The aim of this study was to investigate the perceptions of Italian patients and their caregivers about living with MF and the burden of illness associated with MF. METHODS: A quali-quantitative questionnaire and a prompted written narrative survey were administered to patients affected by primary or post-essential thrombocythemia/post-polycythaemia vera MF and their primary caregiver in 35 Italian haematological centres...
June 2018: Quality of Life Research
https://www.readbyqxmd.com/read/29509111/using-a-modified-delphi-methodology-to-gain-consensus-on-the-use-of-dressings-in-chronic-wounds-management
#20
David Russell, Leanne Atkin, April Betts, Caroline Dowsett, Francis Fatoye, Sarah Gardner, Julie Green, Chris Manu, Tracey McKenzie, Helena Meally, Louise Mitchell, Julie Mullings, Isaac Odeyemi, Andrew Sharpe, Gillian Yeowell, Nancy Devlin
OBJECTIVE: Managing chronic wounds is associated with a burden to patients, caregivers, health services and society and there is a lack of clarity regarding the role of dressings in improving outcomes. This study aimed to provide understanding on a range of topics, including: the definition of chronicity in wounds, the burden of illness, clinical outcomes of reducing healing time and the impact of early interventions on clinical and economic outcomes and the role of matrix metalloproteinases (MMPs) in wound healing...
March 2, 2018: Journal of Wound Care
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