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https://www.readbyqxmd.com/read/28319337/impact-of-mild-to-severe-hemophilia-on-education-and-work-by-us-men-women-and-caregivers-of-children-with-hemophilia-b-the-bridging-hemophilia-b-experiences-results-and-opportunities-into-solutions-b-hero-s-study
#1
Susan Cutter, Don Molter, Spencer Dunn, Susan Hunter, Skye Peltier, Kimberly Haugstad, Neil Frick, Natalia Holot, David L Cooper
The psychosocial impact of hemophilia on work was recently investigated in the Hemophilia Experiences, Results and Opportunities (HERO) study. The findings revealed that hemophilia had an impact for adults with moderate/severe hemophilia and caregivers of children with hemophilia. HERO did not specifically evaluate impact on education in adults/children with mild/moderate hemophilia or the impact on employment of spouses/partners of caregivers of affected children. The Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S) study evaluated the impact of hemophilia on the lives of adult men/women with mild-severe hemophilia B and caregivers of boys/girls with hemophilia B and their spouses/partners...
April 2017: European Journal of Haematology
https://www.readbyqxmd.com/read/28317166/the-relationship-of-specific-items-on-the-neuropsychiatric-inventory-to-caregiver-burden-in-dementia-a-systematic-review
#2
REVIEW
Toril Marie Terum, John Roger Andersen, Arvid Rongve, Dag Aarsland, Ellen J Svendsboe, Ingelin Testad
OBJECTIVE: Neuropsychiatric symptoms (NPSs) are common in dementia, and they have been identified as important care-recipient variables in terms of their impact on caregiver burden. The aim of this review was to describe how individual NPSs in dementia, assessed using the Neuropsychiatric Inventory, are associated with caregiver burden. METHODS: We performed a systematic review of English language, peer-reviewed articles retrieved from MEDLINE, PSYCINFO, and EMBASE...
March 20, 2017: International Journal of Geriatric Psychiatry
https://www.readbyqxmd.com/read/28290064/-symposium-the-future-of-informal-care
#3
Marjolein Broese van Groenou, Alice de Boer, Kim Putters, Kène Henkens, Henk Nies, Pearl A Dykstra, Hanna van Solinge, Cretien van Campen, Sjoerd Kooiker
Due to the reform of long term care in 2015, there is growing concern about whether groups at risk receive the care they need. People in need of care have to rely more on help from their social network. The increased need for informal care requires resilience and organizational skills of families, but also of volunteers, professionals and employers. What does this mean for the provision of informal care in the next decennia? The symposium 'The future of informal care', organized on January 26 2017 by the National Institute for Social Research and the Institute for Societal Resilience of the Vrije Universiteit, addressed possible answers to this question...
March 13, 2017: Tijdschrift Voor Gerontologie en Geriatrie
https://www.readbyqxmd.com/read/28286689/determinants-of-dyadic-relationship-and-its-psychosocial-impact-in-patients-with-parkinson-s-disease-and-their-spouses
#4
Michaela Karlstedt, Seyed-Mohammad Fereshtehnejad, Dag Aarsland, Johan Lökk
The caregiver-care receiver relationship (mutuality) in Parkinson's disease (PD) and its association with motor and non-motors symptoms, health-related quality of life (HRQoL), and caregiver burden have not fully been investigated. The aim of our study was to explore if (1) the level of mutuality perceived by PD-patients and PD-partners differs, (2) different factors are associated with perceived mutuality by PD-patients and PD-partners, and (3) mutuality is associated with PD-patients health-related quality of life (HRQoL) and caregiver burden...
2017: Parkinson's Disease
https://www.readbyqxmd.com/read/28284516/-factors-involved-in-the-burden-of-the-primary-caregiver-of-cancer-patients
#5
M C Valencia, G Meza-Osnaya, I Pérez-Cruz, N Cortes-Campero, J Hernández-Ovalle, P Hernández-Paredes, K Juárez-Romero, B Chino-Hernández, M S Romero-Figueroa
OBJECTIVE: The aim of the study was to identify the factors involved between burden in the primary caregiver of cancer patients and their quality of life. MATERIAL AND METHODS: A cross-sectional study was conducted in a secondary level hospital on 100 primary caregivers of cancer patients. The level of burden was determined using the Zarit scale and the perception of quality of life using the World Health Organisation Quality of Life questionnaire. Quality of life was categorised as high or low and compared between groups according to their level of burden...
March 8, 2017: Revista de Calidad Asistencial: Organo de la Sociedad Española de Calidad Asistencial
https://www.readbyqxmd.com/read/28282729/spared-emotional-perception-in-patients-with-alzheimer-s-disease-is-associated-with-negative-caregiver-outcomes
#6
Ryan T Daley, Michael A Sugarman, Steven D Shirk, Maureen K O'Connor
OBJECTIVES: Caregivers (CGs) for patients with Alzheimer's disease (AD) often experience negative mental health and relationship outcomes. Additionally, emotional perception abilities are often compromised in early AD; the relationships between these deficits and CG outcomes are unclear. The present study investigated the relationship between emotional perception abilities in AD participants and CG well-being. METHODS: Participants included 28 individuals with AD, their spousal CGs, and 30 older controls (OCs)...
February 17, 2017: Aging & Mental Health
https://www.readbyqxmd.com/read/28276746/further-explorations-of-illness-uncertainty-carers-experiences-of-parkinson-s-disease
#7
Catherine S Hurt, Sophie Cleanthous, Stanton P Newman
OBJECTIVE: Dominant models of illness uncertainty define uncertainty as 'an inability to determine the meaning of illness-related events'. Recent research has shown patient uncertainty to be multidimensional encompassing personal issues indirectly affected by illness. The nature of carer uncertainty has yet to be fully explored. The present study aimed to investigate the nature of illness uncertainty in the carers of patients with Parkinson's disease (PD). DESIGN: Eighteen carers of a spouse with PD participated in semistructured interviews...
February 7, 2017: Psychology & Health
https://www.readbyqxmd.com/read/28276252/spousal-role-and-caregiver-burden-in-hiv-affected-families-in-anhui-province-china
#8
Julie Hsieh, Li Li, Chunqing Lin, Sitong Luo, Guoping Ji
This study examined the burden experienced by various roles of family caregivers of people living with HIV (PLH), in particular spouses vs. non-spouses. A total of 475 family members of PLH were recruited from Anhui Province, China. Participants responded to a survey using the Computer Assisted Personal Interview method. The assessment collected data on demographic characteristics and their perceived caregiver burden, which was compared between spouses and non-spouses. Multiple regression models were built to identify factors associated with caregiver burden...
March 9, 2017: AIDS Care
https://www.readbyqxmd.com/read/28276179/effect-of-caregiving-relationship-and-formal-long-term-care-service-use-on-caregiver-well-being
#9
Kirsten Eom, Michael J Penkunas, Angelique W M Chan
AIM: Despite efforts to revise the traditional long-term care (LTC) model, informal caregivers continue to provide a substantial amount of support to older adults as front-line care providers. The present study aimed to understand the effect of informal caregiving on caregivers' well-being in Singapore with respect to different types of patient-caregiver relationships. Second, this study examined the association between formal LTC service use and caregivers' well-being. METHODS: Two waves of data for 781 dyads of patients with LTC needs and their caregivers from a longitudinal study were analyzed...
March 9, 2017: Geriatrics & Gerontology International
https://www.readbyqxmd.com/read/28276169/intergenerational-transfers-and-informal-care-for-disabled-elderly-persons-in-china-evidence-from-charls
#10
Xiaoting Liu, Bei Lu, Zhixin Feng
Aiming at 'ageing healthier and ageing better', a certain amount of high-quality informal care should be available for elderly persons with physical disability as formal care is barely accessible in China. The demographic transition and family structural changes have dramatically weakened traditional norms of filial piety and the structure of intergenerational transfers. This article employed nationwide representative data from the first wave (2011) of Chinese Health and Retirement Longitudinal Study (CHARLS) in order to identify the duration of informal care provision at home for frail elders (1122 in rural areas and 577 in urban areas, total 1699), measured in monthly hours, before estimating the associations between intergenerational transfers and the received time of informal care with Tobit Model analysis...
March 9, 2017: Health & Social Care in the Community
https://www.readbyqxmd.com/read/28260539/background-characteristics-and-treatment-related-factors-associated-with-treatment-success-or-failure-in-a-non-pharmacological-intervention-for-dementia-caregivers
#11
Karen C Rose, Laura N Gitlin
BACKGROUND: Non-pharmacological interventions for persons with dementia often rely on family caregivers for implementation. However, caregivers differ in their readiness to use strategies. This study examines dyadic characteristics and treatment-related mechanisms associated with treatment success (high readiness to use strategies) and failure (low readiness to use strategies) at the conclusion of the Advancing Caregiver Training (ACT) intervention. METHODS: Caregiver and person with dementia characteristics and treatment-related variables (treatment participation, number and type of strategies introduced and enacted) were examined in 110 caregivers in intervention...
March 6, 2017: International Psychogeriatrics
https://www.readbyqxmd.com/read/28251226/awareness-of-do-not-resuscitate-orders-in-the-outpatient-setting-in-saudi-arabia-perception-and-implications
#12
Mohammed A Al Sheef, Maha S Al Sharqi, Lina H Al Sharief, Tharaa Y Takrouni, Arshad M Mian
To determine the level of awareness of outpatients, their preferences regarding the appropriate time for discussions regarding do-not-resuscitate (DNR) order  in Saudi Arabia. Methods: This cross-sectional, self-administered survey was conducted at King Fahd Medical City, a tertiary care hospital in Riyadh, Saudi Arabia between December 2012 and January 2013. Demographic parameters of the participants were analyzed by frequency distribution, and the data on their responses by percentage analysis. Results: The survey participants constituted 307 randomly selected outpatients/caregivers presenting for outpatient care at primary and tertiary care centers, 70% were female...
March 2017: Saudi Medical Journal
https://www.readbyqxmd.com/read/28247128/the-self-care-practices-of-family-caregivers-of-persons-with-poor-prognosis-cancer-differences-by-varying-levels-of-caregiver-well-being-and-preparedness
#13
J Nicholas Dionne-Odom, Wendy Demark-Wahnefried, Richard A Taylor, Gabrielle B Rocque, Andres Azuero, Aras Acemgil, Michelle Y Martin, Meka Astin, Deborah Ejem, Elizabeth Kvale, Karen Heaton, Maria Pisu, Edward E Partridge, Marie A Bakitas
PURPOSE: Little is known about the impact of family caregiving for adults with poor prognosis cancer on caregivers' own individual self-care practices. We explored differences in caregivers' discrete self-care practices associated with varying levels of caregiver well-being, preparedness, and decision-making self-efficacy. METHODS: Cross-sectional survey within eight community-based southeastern U.S. cancer centers was conducted. Family caregivers of Medicare beneficiaries ≥65 years with pancreatic, lung, brain, ovarian, head and neck, hematologic, or stage IV cancer completed measures of individual self-care practices (health responsibility, physical activity, nutrition, spiritual growth, interpersonal relations, stress management, and sleep), well-being (anxiety, depression, and health-related quality of life [HRQoL]), preparedness, and decision-making self-efficacy...
March 1, 2017: Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer
https://www.readbyqxmd.com/read/28238032/information-seeking-and-satisfaction-with-information-sources-among-spouses-of-men-with-newly-diagnosed-local-stage-prostate-cancer
#14
Aasthaa Bansal, Lisel M Koepl, Catherine R Fedorenko, Chunyu Li, Judith Lee Smith, Ingrid J Hall, David F Penson, Scott D Ramsey
Information sources about prostate cancer treatment and outcomes are typically designed for patients. Little is known about the availability and utility of information for partners. The objectives of our study were to evaluate information sources used by partners to understand prostate cancer management options, their perceived usefulness, and the relationship between sources used and satisfaction with treatment experience. A longitudinal survey of female partners of men newly diagnosed with local-stage prostate cancer was conducted in three different geographic regions...
February 25, 2017: Journal of Cancer Education: the Official Journal of the American Association for Cancer Education
https://www.readbyqxmd.com/read/28229487/the-mourning-process-of-older-people-with-dementia-who-lost-their-spouse
#15
Akiko Watanabe, Sayuri Suwa
AIMS: To explore the mourning process of people with dementia who have lost their spouse, using family caregivers' and professionals' perspectives and to devise grief care for people with dementia. BACKGROUND: There have been studies on the loss of one's spouse; however, little is known about widows and widowers with dementia as they may find it hard to tell their perception and feelings to others accurately because of cognitive impairment. DESIGN: Qualitative descriptive study using semi-structured interviews...
February 22, 2017: Journal of Advanced Nursing
https://www.readbyqxmd.com/read/28222087/repetitive-negative-thinking-the-link-between-caregiver-burden-and-depressive-symptoms
#16
Amanda Mitchell, Patrick Pössel
PURPOSE/OBJECTIVES: To explore whether repetitive negative thinking (RNT) mediates the pathway between subscales of caregiver burden and depressive symptoms. 
. DESIGN: Cross-sectional pilot study. 
. SETTING: Bone marrow unit at the University of Louisville Hospital in Kentucky and caregiver support organizations in Louisville.
. SAMPLE: 49 current cancer caregivers who were primarily spouses or partners of individuals with lymphoma or leukemia and provided care for a median of 30 hours each week for 12 months...
March 1, 2017: Oncology Nursing Forum
https://www.readbyqxmd.com/read/28215936/alcohol-s-harm-to-children-findings-from-the-2015-united-states-national-alcohol-s-harm-to-others-survey
#17
Lauren M Kaplan, Madhabika B Nayak, Thomas K Greenfield, Katherine J Karriker-Jaffe
OBJECTIVES: To examine the prevalence and severity of alcohol's harm to children in the US and the relationship of the harmer to the child, and to examine caregivers' sociodemographic characteristics, alcohol use, and exposure to harm due to a drinking spouse/partner or other family member as risk factors for alcohol's harm to children. STUDY DESIGN: We report data on 764 caregivers (defined as persons with parental responsibility for at least 1 child aged ≤17 years) from the 2015 National Alcohol's Harm to Others Survey, a dual-frame national sample of US adults...
February 10, 2017: Journal of Pediatrics
https://www.readbyqxmd.com/read/28215757/-in-this-together-or-going-it-alone-spousal-dyad-approaches-to-alzheimer-s
#18
Ryan T Daley, Maureen K O'Connor, Steven D Shirk, Renée L Beard
Spouses provide the majority of care for individuals with Alzheimer's disease (AD). The qualitative literature suggests that couples adopt one of two perspectives in their accounts of AD: a We/Us approach where couples describe experiences as a composite whole or an I/Me approach where couples describe themselves as experiencing the impact of AD separately. Little is known about how these perspectives relate to the individual characteristics of either affected party. This study investigated the experiences of dyads taking both approaches...
January 2017: Journal of Aging Studies
https://www.readbyqxmd.com/read/28197328/family-functioning-and-communication-in-spouses-of-patients-with-parkinsonism
#19
Seo Young Kang, Myung Hwa Yang, Jung Ah Lee, Wooyoung Jang, Chong Sik Lee, Young Sik Kim
BACKGROUND: Patients with parkinsonism exhibit motor symptoms, cognitive impairment, and neuropsychiatric changes, and these symptoms increase caregiver burden. Family dynamics can be influenced by the presence of comorbidities, which is especially important in diseases causing caregiver burden. We investigated the effects of spousal parkinsonism on family functioning and communication. METHODS: Couples without parkinsonism, who visited hospital-based family practices, were recruited by 28 family physicians from 22 hospitals between April 2009 and June 2011; patients with parkinsonism and their spouses were recruited from a single institution...
January 2017: Korean Journal of Family Medicine
https://www.readbyqxmd.com/read/28156630/emotional-disclosure-in-home-hospice-cancer-care-implications-for-spouse-caregiver-bereavement
#20
Lee Ellington, Margaret Clayton, Michael Caserta, Dale Lund, Kathi Mooney
54 Background: Evidence shows the benefit of positive and negative emotional disclosure for family caregivers (CG), but little is known about the impact of emotional disclosure at end of life. We assessed the effect of CG and hospice nurse disclosure during home visits on CG anxiety and depression in bereavement. METHODS: As part of a larger study, nurse visits to 95 spouse CGs of cancer home hospice patients were audio recorded. An adapted Roter Interaction Analysis System was used to identify emotional disclosure: CG and nurse positive emotion (humor, gratitude), CG distress, and nurse emotional response (reassurance, validation)...
October 9, 2016: Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology
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