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Caregiver burden in chronic illness

Kate Alice Lippiett, Alison Richardson, Michelle Myall, Amanda Cummings, Carl R May
OBJECTIVE: To identify, characterise and explain common and specific features of the experience of treatment burden in relation to patients living with lung cancer or chronic obstructive pulmonary disease (COPD) and their informal caregivers. DESIGN: Systematic review and interpretative synthesis of primary qualitative studies. Papers were analysed using constant comparison and directed qualitative content analysis. DATA SOURCES: CINAHL, EMBASE, MEDLINE, PsychINFO, Scopus and Web of Science searched from January 2006 to December 2015...
February 5, 2019: BMJ Open
Corita R Grudzen, Deborah J Shim, Abigail M Schmucker, Jeanne Cho, Keith S Goldfeld
INTRODUCTION: Emergency department (ED)-initiated palliative care has been shown to improve patient-centred outcomes in older adults with serious, life-limiting illnesses. However, the optimal modality for providing such interventions is unknown. This study aims to compare nurse-led telephonic case management to specialty outpatient palliative care for older adults with serious, life-limiting illness on: (1) quality of life in patients; (2) healthcare utilisation; (3) loneliness and symptom burden and (4) caregiver strain, caregiver quality of life and bereavement...
January 25, 2019: BMJ Open
Boye Fang, Elsie Yan, Daniel W L Lai
OBJECTIVES: To identify risk and protective factors associated with elder abuse among older Chinese with cognitive and physical impairment in the People's Republic of China (PRC). METHODS: 1002 dyads of care recipients and family caregivers were interviewed. RESULTS: The mutually reported rates were 9.7%, 0.8%, 33.2%, and 39.7% for psychological abuse, physical abuse, financial exploitation, and caregiver neglect respectively. Caregiver burden, care recipient neuropsychiatric symptoms, and cognitive impairments are prominent risk factors, while protective factors associated with multiple abuse subtypes include caregiver's use of emotion-focused and solution-focused coping, perception of familism, and premorbid relationship rewards...
February 11, 2019: Archives of Gerontology and Geriatrics
Joel Olayiwola Faronbi, Grace Oluwatoyin Faronbi, Sunday Joseph Ayamolowo, Adenine Ayobola Olaogun
BACKGROUND: Caregivers of the elderly with chronic illnesses are exposed to the burden associated with their caregiving activities. This study described the lived experience of caregivers of older adults in Nigeria. METHODS: A qualitative design guided by interpretive phenomenology informed the design of the research, whereby 15 in-depth interviews were conducted with caregivers of older adults with chronic illnesses. The interview sessions were audiotaped and transcribed verbatim and analysed using constant comparison analysis method...
January 25, 2019: Archives of Gerontology and Geriatrics
Aaron Wightman, Cortney Taylor Zimmerman, Shari Neul, Katherine Lepere, KristiLynn Cedars, Douglas Opel
BACKGROUND AND OBJECTIVES: Pediatric dialysis is thought to be burdensome on caregivers given their need to assume dual responsibilities of parental and medical management of their child's chronic illness. In this study, we seek to describe the experience of parental caregivers of children receiving chronic dialysis for end-stage kidney disease. METHODS: We performed semistructured interviews of primary caregivers of children with end-stage kidney disease receiving chronic peritoneal dialysis or hemodialysis for at least 8 weeks from March 2016 to April 2017 at 3 pediatric dialysis centers in the United States...
January 29, 2019: Pediatrics
Joel Rhee, Anne Meller, Karolina Krysinska, Peter Gonski, Vasi Naganathan, Nicholas Zwar, Andrew Hayen, John Cullen, Julie-Ann O'Keefe, Julie McDonald, Ben Harris-Roxas, Gideon A Caplan
INTRODUCTION: It is unclear whether advance care planning (ACP) undertaken with patients living in the community can improve patient care and avoid unwanted interventions and hospital admissions. We have designed a randomised controlled trial (RCT) to examine if ACP undertaken with patients with advanced illnesses attending hospital outpatient clinics can reduce unplanned hospital admissions and improve patient and caregiver well-being. METHODS AND ANALYSIS: Pragmatic RCT involving patients from subspecialty outpatient clinics at five clinical sites in Sydney, Australia...
January 24, 2019: BMJ Open
Roland von Känel, Brent T Mausbach, Joel E Dimsdale, Michael G Ziegler, Paul J Mills, Matthew A Allison, Thomas L Patterson, Sonia Ancoli-Israel, Igor Grant
BACKGROUND: Caregivers of a family member with a chronic disability or illness such as dementia are at increased risk for chronic disease. There are many factors that contribute to dementia caregiver vulnerability and these factors can be challenging to assess in clinical settings. Self-rated health (SRH) is an independent measure of survival and physical health in the elderly. As an inclusive measure of health, SRH has been proposed as a reliable way to assess a patient's general health in primary care...
January 22, 2019: BMC Geriatrics
Joel Olayiwola Faronbi, Howard K Butcher, Adenike Ayobola Olaogun
Family members play key roles in the care of older adults with chronic illness. However, little is known about the negative consequences of caregiving in Sub-Sahara Africa. The current study examined the influence of caregivers' burden and coping ability on the health-related quality of life of caregivers of older adults with chronic illness. An exploratory sequential mixed methods study was conducted among 16 family members. Findings showed that caregivers experienced severe burden, coped moderately with the burden, and had poor quality of life...
January 1, 2019: Journal of Gerontological Nursing
Raffaella Antonione, Gianfranco Sinagra, Matteo Moroni, Michele Correale, Dario Redaelli, Domenico Scrutinio, Eugenia Malinverni, Savina Nodari, Raffaele Calabrò, Italo Penco, Giuseppe Mercuro
Palliative care is recognized as an approach that improves quality of life of patients and families facing life-threatening illnesses. This is achieved through prevention, early identification, assessment and treatment of symptoms and other psycho-social, spiritual and economic issues. Palliative care is not dependent on prognosis and can be delivered as "simultaneous care", together with disease-modifying treatments and adequate symptom relief. Palliative care relies on coordination across settings of care and offers open communication to patients and caregivers...
January 2019: Giornale Italiano di Cardiologia
Evelise Saia Rodolpho Duarte, Liciane Vaz de Arruda Silveira, Vanessa de Albuquerque Cítero, Alessandro Ferrari Jacinto
Objective: Population aging is a global phenomenon associated with a rising prevalence of chronic degenerative diseases such as dementia. Dementia poses a challenge not only for patients but also their family caregivers who, in exercising this role, are at higher risk of mental illness. The present study investigated the prevalence of common mental disorders (CMD) in family caregivers of demented elderly seen at a geriatric outpatient clinic of a Brazilian teaching hospital. Methods: A cross-sectional study was conducted in which the following assessment instruments were applied: the Self Reporting Questionnaire, Zarit Burden Interview, Hospital Anxiety and Depression Scale and Mini-Mental State Examination (caregivers aged ≥65 years) plus a sociodemographic questionnaire...
October 2018: Dementia & Neuropsychologia
Taeho Greg Rhee, Robert A Rosenheck
The longitudinal association of changes in clinical status among adults with schizophrenia and changes in family caregiver burden has not been demonstrated. Using data from the NIMH-funded CATIE schizophrenia trial (n = 446 family caregivers), we examined the association of changes in patient symptoms and quality of life with changes in measures of family caregiver burden. Clinical changes in patient symptoms and quality of life were not significantly associated with changes in family caregiver burden. The weak association likely reflects that small clinical changes in chronically ill adults are insufficient to affect long established experiences of burden...
December 3, 2018: Psychiatry Research
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
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
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
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
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
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
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
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
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
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