keyword
https://read.qxmd.com/read/38639681/the-impact-on-families-of-children-with-congenital-upper-extremity-differences
#1
JOURNAL ARTICLE
Sarah Ballatori, Andrea Bauer, Angela Wang, Julie Samora, Suzanne Steinman, Claire Manske, Apurva Shah, Lindley B Wall
PURPOSE: To investigate the impact on caregivers of caring for a child with congenital upper extremity differences. METHODS: In this cross-sectional study, caregivers of patients enrolled in the multi-institutional Congenital Upper Limb Difference (CoULD) registry were contacted. Demographic information and the Impact on Family Scale (IOFS), a validated measure of perceived caregiver strain, were collected. Patient-reported outcome measures from the CoULD registry, the Pediatric Outcomes Data Collection Instrument (PODCI), and Patient-Reported Outcomes Measurement Information System (PROMIS) were also analyzed for correlation with IOFS...
April 16, 2024: Journal of Hand Surgery
https://read.qxmd.com/read/38638476/the-moderating-effect-of-care-time-on-care-related-characteristics-and-caregiver-burden-differences-between-formal-and-informal-caregivers-of-dependent-older-adults
#2
JOURNAL ARTICLE
Eunmi Oh, SeolHwa Moon, Daum Chung, Rina Choi, Gwi-Ryung Son Hong
OBJECTIVE: This study examined differences in care burden between formal and informal caregivers of dependent older adults according to care-related characteristics, and whether care time had a moderating effect on the relationship between care-related characteristics and caregiver burden. METHODS: Participants were formal ( n  = 520) and informal caregivers ( n  = 142) of dependent older adults in South Korea. Caregiver burden was measured using the Korean version of the Zarit Burden Interview...
2024: Frontiers in Public Health
https://read.qxmd.com/read/38626415/family-caregiver-outcomes-after-participating-in-a-hospital-based-family-involvement-program-after-major-gastrointestinal-surgery-a-subgroup-analysis-of-a-patient-preferred-cohort-study
#3
JOURNAL ARTICLE
Selma Cw Musters, Sani Kreca, Susan van Dieren, Hanneke van der Wal-Huisman, Johannes A Romijn, Wendy Chaboyer, Els Jm Nieveen van Dijkum, Anne M Eskes
BACKGROUND: Engaging families in postsurgical care is potentially beneficial for improving cancer patient outcomes and quality of care. We developed a family involvement program (FIP) and in this study, we aim to evaluate the impact of the FIP on family caregiver burden and well-being. Moreover, we aim to assess the fidelity of the program. MATERIALS AND METHODS: This is a preplanned subgroup analysis of a patient-preferred prospective cohort study that included family caregivers of patients who underwent major oncological surgery for gastrointestinal tumors...
April 15, 2024: International Journal of Surgery
https://read.qxmd.com/read/38626216/double-duty-caregivers-enduring-covid-19-pandemic-to-endemic-it-s-just-wearing-me-down
#4
JOURNAL ARTICLE
Jasneet Parmar, Tanya L'Heureux, Michelle Lobchuk, Jamie Penner, Lesley Charles, Oona St Amant, Catherine Ward-Griffin, Sharon Anderson
The COVID-19 pandemic has considerably strained health care providers and family caregivers. Double-duty caregivers give unpaid care at home and are employed as care providers. This sequential mixed-method study, a survey followed by qualitative interviews, aimed to comprehensively understand the experiences of these Canadian double-duty caregivers amidst the pandemic and the transition to the endemic phase. The multi-section survey included standardized assessments such as the Double-duty Caregiver Scale and the State Anxiety Scale, along with demographic, employment-related, and care work questions...
2024: PloS One
https://read.qxmd.com/read/38621995/preliminary-translation-of-reducing-disability-in-alzheimer-s-disease-among-individuals-with-intellectual-disabilities-and-caregiver-dyads
#5
JOURNAL ARTICLE
Lauren T Ptomey, Kelli Barton, Emma Swinford, Amy Bodde, Amanda George, Anna M Gorczyca, C Michelle Niedens, Susan C Sprague, Amy Yeager, Brian Helsel, Linda Teri, Eric D Vidoni, Jaime Perales-Puchalt
BACKGROUND: The Reducing Disability in Alzheimer's Disease in Kansas City (RDAD-KC) intervention has been shown to improve the health of individuals with dementia and caregiver dyads. This manuscript reports the results of implementing the RDAD among individuals with intellectual disabilities and caregiver dyads. METHODS: Nine community agencies deployed the 12-week intervention. We assessed changes in individuals with intellectual disabilities' behavioural symptom related severity and physical activity, and caregivers' behavioural symptom-related distress, unmet needs, and caregiver strain...
May 2024: Journal of Applied Research in Intellectual Disabilities: JARID
https://read.qxmd.com/read/38609905/experiences-of-family-caregivers-in-dealing-with-cases-of-advanced-breast-cancer-a-qualitative-study-of-the-sociocultural-context-in-punjab-pakistan
#6
JOURNAL ARTICLE
Sadia Jabeen, Rubeena Zakar, Muhammad Zakria Zakar, Florian Fischer
BACKGROUND: Patients with advanced breast cancer require consistent help and support from family caregivers. These caregivers often endure financial burdens and psychological stress, with their experiences significantly influenced by sociocultural factors. This study aims to explore the experiences of family caregivers of advanced breast cancer patients in Punjab province, Pakistan. METHODS: Data was collected through in-depth interviews with fifteen family caregivers of advanced breast cancer patients in three major cities of Punjab, Pakistan...
April 12, 2024: BMC Public Health
https://read.qxmd.com/read/38609311/cumulative-housing-cost-burden-exposures-and-disadvantages-to-children-s-well-being-and-health
#7
JOURNAL ARTICLE
Chris Hess, Gregg Colburn, Ryan Allen, Kyle Crowder
Housing affordability is a growing challenge for households in the United States and other developed countries. Prolonged exposure to housing cost burden can have damaging effects on households, and, in particular, children. These burdens can exacerbate parental stress, reduce investments in children and expose households to greater neighborhood disadvantage. In this study, we use national survey data to assess whether cumulative housing cost burden exposure is associated with disadvantages to children's well-being and health...
March 2024: Social Science Research
https://read.qxmd.com/read/38593465/integrating-structural-and-experiential-family-therapy-in-neurodivergent-families-a-case-study
#8
JOURNAL ARTICLE
Annemarie Sohn Ma, Jixuan Zhao Lmsw, Eman Tadros PhD Lmft
Autism Spectrum Disorder (ASD) is widely regarded as the most severe childhood behavioral disorder. However, society's lack of awareness regarding neurodevelopmental disorders, like autism, has led to a limited understanding of their profound impact on children and their families. Challenges include unique sensory experiences, communication and social interactions, strain on familial relationships, emotional toll on parents, and educational hurdles, which can significantly impact the well-being of individuals and their families...
April 9, 2024: Issues in Mental Health Nursing
https://read.qxmd.com/read/38565800/cognition-and-health-related-quality-of-life-in-long-term-survivors-of-high-grade-glioma-an-interactive-perspective-from-patient-and-caregiver
#9
JOURNAL ARTICLE
Jochem K H Spoor, Marike Donders-Kamphuis, Wencke S Veenstra, Sarah A van Dijk, Clemens M F Dirven, Peter A E Sillevis Smitt, Martin J van den Bent, Sieger Leenstra, Djaina D Satoer
BACKGROUND: The health-related quality of life (HRQoL) and cognition are important indicators for the quality of survival in patients with high-grade glioma (HGG). However, data on long-term survivors and their caregivers are scarce. We aim to investigate the interaction between cognition and HRQoL in long-term survivors, their caregivers' evaluations, and the effect on caregiver strain and burden. METHODS: 21 long-term HGG (8 WHO grade III and 13 WHO grade IV) survivors (survival ≥ 5 years) and 15 caregivers were included...
April 3, 2024: Acta Neurochirurgica
https://read.qxmd.com/read/38561909/experiences-of-caring-for-women-with-cervical-cancer-a-qualitative-study-among-male-partners-in-dar-es-salaam-tanzania
#10
JOURNAL ARTICLE
Rashid A Gosse, Emanueli Amosi Msengi, Emmanuel Z Chona, Joel S Ambikile
BACKGROUND: More than three-fourths of cervical cancer cases occur in low- and middle-income countries, with sub-Saharan Africa (SSA) accounting for approximately 25% of global mortality. The significant rise in the prevalence of cervical cancer in SSA amplifies the burden on caregivers, contributing to elevated rates of mental illness, particularly among spouses who provide care. Men who assume the role of caregivers for their partners with cervical cancer encounter unique challenges and substantial adjustments across multiple facets of life, impacting both their own quality of life and that of their partners...
April 2024: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://read.qxmd.com/read/38561684/primary-caregivers-experiences-of-caring-for-people-living-with-dementia-in-ghana-a-phenomenological-study
#11
JOURNAL ARTICLE
Precious Adade Duodu, Bibha Simkhada, Joshua Okyere, Ransford Akrong, Caroline Barker, Warren Gillibrand, Padam Simkhada
BACKGROUND: Dementia is often associated with functional impairments that limit the independence of persons living with dementia (PwD). As such, many PwD often require a higher level of support provided by persons referred to as caregivers. Such caregiving activities tend to strain and stress the caregiver. Nonetheless, Ghana lacks empirical evidence and understanding of the effects of caring for PwD on the lives of primary caregivers. To help narrow this knowledge gap, we explored the perspectives of primary caregivers about the impacts of caring for PwD in Ghana...
April 1, 2024: BMC Geriatrics
https://read.qxmd.com/read/38555887/the-strain-among-caregivers-of-children-with-disabilities-at-the-community-based-rehabilitation-centres-in-kudat-division-of-sabah-malaysia
#12
JOURNAL ARTICLE
A Y Khairul, T C Kannan, F P Erna
INTRODUCTION: The prevalence of children with disabilities (CWD) is increasing. CWD requires exceptional long-term attention, which often falls on the caregivers. Caring for a CWD affects caregivers in multiple ways, such as physical, social, personal, and financial aspects. Most of the CWD will be cared in Community-Based Rehabilitation (CBR) centres where the caregivers have to play a crucial role as they become partners in the respective service delivery. However, there is still insufficient information on the impact (strain) of a disabled child on the caregivers in the CBR centre in the Kudat division of Sabah, Malaysia specifically...
March 2024: Medical Journal of Malaysia
https://read.qxmd.com/read/38539218/choosing-and-accessing-covid-19-treatment-options-a-qualitative-study-with-patients-caregivers-and-health-care-providers-in-lebanon
#13
JOURNAL ARTICLE
Reem Hoteit, Aya Hassoun, Elie Bou Sanayeh, Marie Christelle Saade, Gladys Honein-AbouHaidar, Elie A Akl
BACKGROUND: The coronavirus disease 2019 (COVID-19) pandemic has strained healthcare systems globally, particularly in terms of access to medicines. Lebanon has been greatly affected by the pandemic, having faced concomitant financial and economic crises. The objective of the study was to understand the experiences of patients with COVID-19 in Lebanon, as well as those of their families, and healthcare providers, with regards to their treatment decisions and accessibility to COVID-19 medicines...
March 27, 2024: Health Research Policy and Systems
https://read.qxmd.com/read/38529511/carfreeme%C3%A2-dementia-potential-benefits-of-a-driving-retirement-intervention-supporting-persons-with-dementia-and-their-families
#14
JOURNAL ARTICLE
Colleen M Peterson, Stephanie Ingvalson, Robyn W Birkeland, Katie W Louwagie, Theresa L Scott, Nancy A Pachana, Jacki Liddle, Louise Gustafsson, Joseph E Gaugler
BACKGROUND AND OBJECTIVES: Driving retirement can be a necessary but challenging and emotionally complex transition, especially for people living with dementia. This pilot study evaluated the utility of CarFreeMe™-Dementia (CFM™-D), a telehealth intervention providing tailored education and social support to those living with dementia and their care partners, as they prepare for or adjust to driving retirement. Delivered by empathetic health professionals, CFM™-D is a person-centric, flexible program tailored to address challenges specific to the participants' driving retirement stage and individualized contexts...
2024: Innovation in Aging
https://read.qxmd.com/read/38526959/informal-family-care-partner-well-being-is-diminished-in-end-stage-liver-disease
#15
JOURNAL ARTICLE
Lissi Hansen, Michael F Chang, Shirin Hiatt, Nathan F Dieckmann, Christopher S Lee
BACKGROUND: Chronic liver disease is a significant global neglected public health problem. End-stage liver disease is associated with substantial symptom complexity, disability, and care needs that require assistance from informal family care partners. Research on these care partners' caregiver burden or strain, symptoms, and quality of life is sparse and has not focused on these variables as co-occurring or in the context of the quality of the relationship care partners have with the patients...
March 25, 2024: Nursing Research
https://read.qxmd.com/read/38526042/pragmatic-implementation-of-comprehensive-dementia-care-management-the-cedars-sinai-c-a-r-e-s-program-preliminary-data
#16
JOURNAL ARTICLE
Zaldy S Tan, Nabeel Qureshi, Erica Spivack, Deana Rhinehart, Dyane Gatmaitan, Augustine Guinto, Sarah Kremen, Nancy L Sicotte
BACKGROUND: The United States faces a growing challenge with over 6.5 million people living with dementia (PLwD). PLwD and their caregivers struggle with cognitive, functional, behavioral, and psychosocial issues. As dementia care shifts to home settings, caregivers receive inadequate support but bear increasing responsibilities, leading to higher healthcare costs. In response, the Centers for Medicare & Medicaid Services (CMS) introduced the Guiding an Improving Dementia Experience (GUIDE) Model...
March 25, 2024: Journal of the American Geriatrics Society
https://read.qxmd.com/read/38519850/depression-and-anxiety-among-nurses-during-the-covid-19-pandemic-longitudinal-results-over-2%C3%A2-years-from-the-multicentre-voice-egepan-study
#17
JOURNAL ARTICLE
Lenja Grasmann, Eva Morawa, Werner Adler, Caterina Schug, Andrea Borho, Franziska Geiser, Petra Beschoner, Lucia Jerg-Bretzke, Christian Albus, Kerstin Weidner, Sabine Mogwitz, Andreas M Baranowski, Yesim Erim
AIMS: To examine symptoms of depression and generalised anxiety among nurses over 2 years during the pandemic and compare them to the general population. BACKGROUND: The COVID-19 pandemic has led to a significant increase in mental stress among the population worldwide. Nursing staff have been identified as being under remarkable strain. DESIGN: A multicentre prospective longitudinal study. METHODS: Symptoms of depression and generalised anxiety in 507 nurses were examined at four different time points (T1: April-July 2020, T2: November 2020-January 2021, T3: May-July 2021, T4: February-May 2022)...
March 22, 2024: Journal of Clinical Nursing
https://read.qxmd.com/read/38504648/caregiver-strain-and-its-predictors-among-parents-of-autistic-children-a-cross-sectional-study
#18
JOURNAL ARTICLE
Aroosa Nighat, Zaeema Ahmer, Mohammad Ovais, Fatima Bismah Athar, Lubna Ansari Baig
Objective: This study estimates the frequency and predictors of caregiver strain (CGS) among parents of autistic children. Methods: Demographic details and CGS were collected through a validated tool from 403 parents of autistic children in Karachi, Pakistan. Regression modelling was performed to report associations between social, behavioural, and communication problems and socioeconomic predictors of CGS. Results were reported using adjusted beta-coefficients with 95% confidence intervals. Results: In total, 88...
March 20, 2024: Journal of Child and Adolescent Mental Health
https://read.qxmd.com/read/38500130/the-parent-and-family-impact-of-cln3-disease-an-observational-survey-based-study
#19
JOURNAL ARTICLE
Angela Schulz, Nita Patel, Jon J Brudvig, Frank Stehr, Jill M Weimer, Erika F Augustine
BACKGROUND: CLN3 disease (also known as CLN3 Batten disease or Juvenile Neuronal Ceroid Lipofuscinosis) is a rare pediatric neurodegenerative disorder caused by biallelic mutations in CLN3. While extensive efforts have been undertaken to understand CLN3 disease etiology, pathology, and clinical progression, little is known about the impact of CLN3 disease on parents and caregivers. Here, we investigated CLN3 disease progression, clinical care, and family experiences using semi-structured interviews with 39 parents of individuals with CLN3 disease...
March 18, 2024: Orphanet Journal of Rare Diseases
https://read.qxmd.com/read/38483466/the-effectiveness-of-brain-injury-family-intervention-in-improving-the-psychological-well-being-of-caregivers-of-patients-with-traumatic-brain-injury-protocol-for-a-randomized-controlled-trial
#20
JOURNAL ARTICLE
Siti Aminah Omar, Nor Sheereen Zulkefly, Firdaus Mukhtar
BACKGROUND: Globally, traumatic brain injury (TBI) is recognized as one of the most significant contributors to mortality and disability. Most of the patients who have experienced TBI will be discharged home and reunited with their families or primary caregivers. The degree of severity of their reliance on caregivers varies. Therefore, the task of delivering essential care to the patients becomes demanding for the caregivers. A significant proportion of caregivers expressed considerable burden, distress, and discontentment with their lives...
March 14, 2024: JMIR Research Protocols
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