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Caregiver burden

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https://www.readbyqxmd.com/read/28431364/the-humanistic-and-economic-burden-of-dravet-syndrome-on-caregivers-and-families-implications-for-future-research
#1
REVIEW
Mark P Jensen, Andreas Brunklaus, Liam Dorris, Sameer M Zuberi, Kelly G Knupp, Bradley S Galer, Arnold R Gammaitoni
We reviewed the current literature with respect to the humanistic and financial burdens of Dravet Syndrome (DS) on the caregivers of children with DS, in order to (1) identify key unanswered questions or gaps in knowledge that need to be addressed and then, based on these knowledge gaps, (2) propose a research agenda for the scientific community to address in the coming decade. The findings support the conclusion that caring for a child with DS is associated with significant humanistic burden and direct costs...
April 17, 2017: Epilepsy & Behavior: E&B
https://www.readbyqxmd.com/read/28429562/predictors-of-the-health-related-quality-of-life-of-chinese-people-with-major-neurocognitive-disorders-and-their-caregivers-the-roles-of-self-esteem-and-caregiver-s-burden
#2
Daniel Kim-Wan Young, Petrus Yat-Nam Ng, Timothy Kwok
AIM: The present research study aimed to identify and compare the clinical and non-clinical factors that predict the self-reported and proxy-reported health-related quality of life (HRQoL) of people with major neurocognitive disorder (PwND) who are living at home in a Chinese society. METHODS: A total of 57 Chinese PwND-family caregiver dyads that were using the services of local senior centers were recruited through a cross-sectional survey with convenience sampling...
April 20, 2017: Geriatrics & Gerontology International
https://www.readbyqxmd.com/read/28428907/palliative-care-in-huntington-disease-personal-reflections-and-a-review-of-the-literature
#3
REVIEW
Christopher G Tarolli, Amy M Chesire, Kevin M Biglan
BACKGROUND: Huntington disease is a fatal, autosomal dominant, neurodegenerative disorder manifest by the triad of a movement disorder, behavioral disturbances, and dementia. At present, no curative or disease modifying therapies exist for the condition and current treatments are symptomatic. Palliative care is an approach to care that focuses on symptom relief, patient and caregiver support, and end of life care. There is increasing evidence of the benefit of palliative care throughout the course of neurodegenerative conditions including Parkinson disease and amyotrophic lateral sclerosis...
2017: Tremor and Other Hyperkinetic Movements
https://www.readbyqxmd.com/read/28428158/mobile-application-to-promote-adherence-to-oral-chemotherapy-and-symptom-management-a-protocol-for-design-and-development
#4
Joel Nathan Fishbein, Lauren Ellen Nisotel, James John MacDonald, Nicole Amoyal Pensak, Jamie Michele Jacobs, Clare Flanagan, Kamal Jethwani, Joseph Andrew Greer
BACKGROUND: Oral chemotherapy is increasingly used in place of traditional intravenous chemotherapy to treat patients with cancer. While oral chemotherapy includes benefits such as ease of administration, convenience, and minimization of invasive infusions, patients receive less oversight, support, and symptom monitoring from clinicians. Additionally, adherence is a well-documented challenge for patients with cancer prescribed oral chemotherapy regimens. With the ever-growing presence of smartphones and potential for efficacious behavioral intervention technology, we created a mobile health intervention for medication and symptom management...
April 20, 2017: JMIR Research Protocols
https://www.readbyqxmd.com/read/28426918/advanced-cancer-caregiving-as-a-risk-for-major-depressive-episodes-and-generalized-anxiety-disorder
#5
Kelly M Trevino, Holly G Prigerson, Paul K Maciejewski
OBJECTIVE: Caregivers of advanced cancer patients provide extensive care associated with high levels of caregiver distress. The degree to which cancer caregiving increases caregivers' risk for a psychiatric disorder is unknown. The current study examines whether advanced cancer caregiving poses distinct risks for initial and recurrent major depressive episodes (MDEs) and generalized anxiety disorder (GAD) relative to the general population. METHODS: Caregivers of advanced cancer patients (N = 540) from Coping with Cancer were compared to general population controls (N = 9,282) from the National Comorbidity Survey Replication...
April 20, 2017: Psycho-oncology
https://www.readbyqxmd.com/read/28426910/family-and-other-unpaid-caregivers-and-older-adults-with-and-without-dementia-and-disability
#6
Catherine Riffin, Peter H Van Ness, Jennifer L Wolff, Terri Fried
OBJECTIVES: To estimate the number of caregivers providing assistance to community-dwelling older persons with and without dementia and with or without substantial disability; to describe the characteristics of caregivers and care recipients in these groups; to characterize the health-related tasks that caregivers provide; and to estimate associations between the numbers of tasks and caregiver burden. DESIGN: Nationally representative surveys of caregivers and older adults in the United States...
April 20, 2017: Journal of the American Geriatrics Society
https://www.readbyqxmd.com/read/28426906/measuring-the-impact-of-dermatological-conditions-on-family-and-caregivers-a-review-of-dermatology-specific-instruments
#7
REVIEW
F Sampogna, A Y Finlay, S S Salek, P Chernyshov, F J Dalgard, A W M Evers, D Linder, L Manolache, S E Marron, F Poot, S Spillekom-van Koulil, Å Svensson, J C Szepietowski, L Tomas-Aragones, D Abeni
The patient is the centre of a web of relationships and the impact of his/her disease on family members and caregivers must be taken into account. The aim of this study was to identify the specific instruments that measure the impact of a dermatological disease on the quality of life (QoL) of family members, by performing a systematic search of the literature. Fifteen papers were identified, describing the creation and validation of nine instruments. Four of them concerned atopic dermatitis (Dermatitis Family Index, DFI; Parents' Index QoL Atopic Dermatitis, PiQoL-AD; QoL in Primary Caregivers of children with Atopic Dermatitis, QPCAD; Childhood Atopic Dermatits Impact Scale, CADIS), two measured the impact of psoriasis in family members (Psoriasis Family Index, PFI; FamilyPso), one the impact of epidermolysis bullosa (Epidermolysis Bullosa Burden of Disease, EB-BoD), one of ichthyosis (Family Burden Ichthyosis, FBI), and one was generic for dermatological conditions (Family Dermatology Life Quality Index, FDLQI)...
April 20, 2017: Journal of the European Academy of Dermatology and Venereology: JEADV
https://www.readbyqxmd.com/read/28426539/the-effect-of-cancer-patients-and-their-family-caregivers-physical-and-emotional-symptoms-on-caregiver-burden
#8
Safora Johansen, Milada Cvancarova, Cornelia Ruland
BACKGROUND: Although there is significant evidence that the family caregivers (FCs) of cancer patients can experience significant caregiver burden and symptoms, less is known about the relationships between FCs and patient characteristics that influence caregiver burden. OBJECTIVE: The purpose of this study was to examine the effect of cancer patients' and FCs' symptoms and demographic characteristics on caregiver burden at initiation of the patients' radiation treatment...
April 20, 2017: Cancer Nursing
https://www.readbyqxmd.com/read/28422708/a-brief-essay-on-non-pharmacological-treatment-of-alzheimer-s-disease
#9
Alberto Raggi, Domenica Tasca, Raffaele Ferri
Current pharmacological therapies for Alzheimer's disease (AD) do not modify its course and are not always beneficial. Therefore, the optimization of quality of life represents the best possible outcome achievable in all stages of the disease. Cognitive and behavioural rehabilitation represents the main therapeutic approach for this purpose, also in order to mitigate indirectly the burden of distress of family caregivers. The aim of this mini-review is to go through this theme by discussing cognitive activation, virtual reality and neuromodulation techniques...
April 19, 2017: Reviews in the Neurosciences
https://www.readbyqxmd.com/read/28418833/willingness-to-pay-in-caregivers-of-patients-affected-by-schizophrenia
#10
Claudiane Salles Daltio, Cecilia Attux, Marcos Bosi Ferraz
BACKGROUND: Schizophrenia is a debilitating disorder that often requires the affected individual to receive care from a caregiver. Willingness to Pay (WTP) technique allows a valuation of the health state preferences by assessing the impact of the disease and translating it into monetary terms. AIMS OF THE STUDY: The objective was to determine the WTP of schizophrenic patients' caregivers on a hypothetical recovery scenario and correlate it to socio-demographic and clinical characteristics, Knowledge of Disease, Quality of life and Burden of Disease...
March 1, 2017: Journal of Mental Health Policy and Economics
https://www.readbyqxmd.com/read/28417550/burden-emotional-distress-and-quality-of-life-among-informal-caregivers-of-lung-cancer-patients-an-exploratory-study
#11
J-Y Tan, A Molassiotis, M Lloyd-Williams, J Yorke
This study was conducted to explore the interrelationships among caregiver burden, emotional status and quality of life (QoL) in caregivers of lung cancer patients, and to identify whether caregiver burden and health status are associated with patient emotional status and QoL. Forty-three dyads of lung cancer patients and their caregivers were included for analysis. Caregiver-reported outcomes were measured by Caregiver Burden Scale (CBS), Caregivers Quality of Life Index-Cancer (CQOLC) and Hospital Anxiety and Depression Scale (HADS), while patient-reported outcomes were collected by HADS and Lung Cancer Symptom Scale (LCSS)...
April 18, 2017: European Journal of Cancer Care
https://www.readbyqxmd.com/read/28416031/behavioral-and-psychological-symptoms-of-dementia-prevalence-symptom-groups-and-their-correlates-in-community-based-older-adults-with-dementia-in-singapore
#12
Janhavi Ajit Vaingankar, Siow Ann Chong, Edimansyah Abdin, Louisa Picco, Anitha Jeyagurunathan, Esmond Seow, Li Ling Ng, Martin Prince, Mythily Subramaniam
BACKGROUND: This study assessed the prevalence and factor structure of behavioral and psychological symptoms of dementia (BPSD) in a community-based sample of older adults with dementia and identified their correlates. METHODS: Data collected from 399 Singapore residents with dementia aged 60 years and above, interviewed along with a family/friend during a national survey, were used for this analysis. Neuropsychiatric Inventory Questionnaire assessed older adults' BPSD...
April 18, 2017: International Psychogeriatrics
https://www.readbyqxmd.com/read/28415999/feasibility-and-effectiveness-of-a-telephone-based-social-support-intervention-for-informal-caregivers-of-people-with-dementia-study-protocol-of-the-talking-time-project
#13
Martin Berwig, Martin Nikolaus Dichter, Bernd Albers, Katharina Wermke, Diana Trutschel, Swantje Seismann-Petersen, Margareta Halek
BACKGROUND: Caring for people with dementia at home requires a significant amount of time, organization, and commitment. Therefore, informal caregivers, mainly relatives, of people with dementia often feel a high burden. Although on-site support groups are known to have positive effects on the subjective well-being (SWB) and perceived social support of informal caregivers, there are cases in which relatives have either no time or no opportunity to leave the person alone or in which there are no support groups nearby...
April 17, 2017: BMC Health Services Research
https://www.readbyqxmd.com/read/28414249/psychological-distress-is-associated-with-altered-cognitive-functioning-in-family-caregivers-of-patients-with-disorders-of-consciousness
#14
P Moretta, O Masotta, E Crispino, G Castronovo, S Ruvolo, C Montalbano, V Loreto, L Trojano, A Estraneo
OBJECTIVES: To analyse the possible presence of reduced cognitive efficiency in family caregivers of patients with prolonged disorders of consciousness (DOC). SUBJECTS: The participants were 27 caregivers of 25 patients with DOC admitted to the severe brain injury units of the ICS Maugeri, Institutes of Telese Terme and Sciacca, Italy. METHODS: We examined cognitive functions such as short- and long-term memory, executive functions and attention by means of standardized tests...
April 17, 2017: Brain Injury: [BI]
https://www.readbyqxmd.com/read/28413927/-it-has-changed-my-life-an-exploration-of-caregiver-experiences-in-serious-illness
#15
Eric W Anderson, Katie M White
BACKGROUND: Informal, unpaid caregivers shoulder much of the care burden for individuals with serious illness. As part of a project to create an innovative model of supportive care for serious illness, a series of user interviews were conducted, forming the basis for this article. OBJECTIVE: To understand both individual and interpersonal aspects of caregiving for serious illness. METHODS: Twelve semistructured group interviews were conducted with patients, families, and professionals as part of a larger study of late-life serious illness...
January 1, 2017: American Journal of Hospice & Palliative Care
https://www.readbyqxmd.com/read/28411960/age-and-gender-influences-on-the-needs-concerns-and-strategies-of-cabg-caregivers
#16
Margo A Halm
BACKGROUND: Caring for coronary artery bypass (CABG) surgery patients can be challenging. No studies have explored caregiver burden by age and gender. OBJECTIVE: To describe age and gender-specific concerns, needs and strategies during the first 3 months. METHODS: Themes for burden concerns, needs and strategies were derived from interviews of 32 CABG caregivers using constant comparative analysis. RESULTS: Age-specific themes related to motivating exercise (<70), applying support hose, and self-reliance (>70)...
April 12, 2017: Heart & Lung: the Journal of Critical Care
https://www.readbyqxmd.com/read/28411508/interventions-to-support-people-with-dementia-and-their-caregivers-during-the-transition-from-home-care-to-nursing-home-care-a-systematic-review
#17
REVIEW
Christian Müller, Sindy Lautenschläger, Gabriele Meyer, Astrid Stephan
BACKGROUND: During the transition of people with dementia from home to nursing home family caregivers often feel burdened. OBJECTIVES: We aimed to 1) identify interventions which support people with dementia and their caregivers in the transition from home care to nursing home care, 2) synthesize the evidence for efficacy of these interventions, and 3) examine whether the identified interventions have been systematically developed, evaluated and implemented according to the Medical Research Council guidance on complex interventions...
April 3, 2017: International Journal of Nursing Studies
https://www.readbyqxmd.com/read/28409049/rivastigmine-as-a-symptomatic-treatment-for-apathy-in-parkinson-s-dementia-complex-new-aspects-for-this-riddle
#18
Rita Moretti, Paola Caruso, Matteo Dal Ben
Over 90% of PDD patients show at least one neuropsychiatric symptom (NPS); in the 60-70% two or more NPS are present. Their incidence is important in terms of prognosis and severity of pathology. However, among all NPS, apathy is often the most disturbing, associated with greater caregiver's burden. Similar to other NPS, apathy may be due to a dysfunction of the nigrostriatal pathway, even though, not all the PD patients become apathetic, indicating that apathy should not entirely be considered a dopamine-dependent syndrome, and in fact it might also be related to acetylcholine defects...
2017: Parkinson's Disease
https://www.readbyqxmd.com/read/28408026/the-aging-cardiovascular-system-understanding-it-at-the-cellular-and-clinical-levels
#19
REVIEW
Francesco Paneni, Candela Diaz Cañestro, Peter Libby, Thomas F Lüscher, Giovanni G Camici
Cardiovascular disease (CVD) presents a great burden for elderly patients, their caregivers, and health systems. Structural and functional alterations of vessels accumulate throughout life, culminating in increased risk of developing CVD. The growing elderly population worldwide highlights the need to understand how aging promotes CVD in order to develop new strategies to confront this challenge. This review provides examples of some major unresolved clinical problems encountered in daily cardiovascular practice as we care for elderly patients...
April 18, 2017: Journal of the American College of Cardiology
https://www.readbyqxmd.com/read/28407778/coping-strategies-and-quality-of-life-in-caregivers-of-dependent-elderly-relatives
#20
Margarita Rodríguez-Pérez, Ana Abreu-Sánchez, María Jesús Rojas-Ocaña, Rafael Del-Pino-Casado
BACKGROUND: Despite the importance of coping in caregiving, there are few studies on the relationship between coping and quality of life in caregivers of the frail dependent elderly. Thus, this study aims to analyze the relationship between coping strategies and quality of life dimensions in primary caregivers of dependent elderly relatives. METHODS: A cross-sectional study was conducted from 86 caregivers. Predictive variables were coping strategies (problem-focused, emotion-focused, socially-supported, and dysfunctional); dependent variables were quality of life dimensions (psychological, physical, relational, and environmental); and potential confounding variables were age, gender, perceived health and burden of caregiver, and functional capacity of care receiver...
April 14, 2017: Health and Quality of Life Outcomes
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