quality of life

Aims: Epidermolysis Bullosa (EB) is a rare genetic disorder characterised by recurrent skin blistering. Wound care and nursing are critical to everyday lives of EB patients. The aim of this review was to identify the support needs of parents of a child with EB and to assess the impact EB has on the family unit, irrespective of subtype of condition severity.

Purpose: To assess the burden among caregivers of patients with heart failure (HF) with left ventricular ejection fraction (LVEF) ≤ 60%. The burden by New York Heart Association (NYHA) functional class was also characterized. Patients and Methods: A cross-sectional study was conducted in France, Germany, Italy, Spain, and UK from June to November 2019. Patient record forms were completed by 257 cardiologists and 158 general practitioners for consecutive HF patients.

Objective: As the number of informal caregivers and their caregiving responsibilities increase, this study aims at evaluating caregiver distress, quality of life (QoL) and their predictors in informal caregivers of cancer patients during active treatment and follow‐up. Methods: This cross‐sectional descriptive study targeted primary caregivers of patients with different cancer diagnoses. Caregiver‐reported outcomes were measured by the Caregiver Risk Screen (CRS), Distress Thermometer (DT) and Caregiver Quality of Life Index—Cancer (CQOLC).

Objective: This research was conducted for the purpose of examining the care burden and quality of life in family caregivers of palliative care patients. Design: The research design was a descriptive correlational study conducted with the caregivers of 163 patients residing in palliative care units. Data were collected via a demographic survey, The Zarit Burden Interview (ZBI) and the World Health Organization Quality of Life Assessment (WHOQOL).

Aims: To evaluate the effectiveness of the hospital‐family holistic care model based on the theory of 'Timing It Right' in caregivers of patients with permanent enterostomy. Design: A prospective randomized controlled trial. Methods: One hundred and twenty‐five caregivers of patients with permanent enterostomy were recruited from 1 May 2017–31 August 2019. They were randomized into either intervention group (N = 62) or control group (N = 63).

Objectives: This study explores the lived experiences of carers of people with Multiple Sclerosis (MS), specifically in relation to their quality of life (QoL), through the use of images and narratives, with the aim of gaining a nuanced insight into the complex nature of QoL in the MS caregiving context.; Design: Real-time qualitative design using the photovoice method.; Methods: Twelve MS carers (aged 30-73 years) took photographs of objects/places/events that represented enhancement or compromise to their QoL and composed written narrativ

The aim of this study was to identify the differences in quality of life (QoL) and well-being between working and nonworking dementia carers and the relative contribution of psychological characteristics, caregiving experience, and social support. Multiple regressions modeled the contribution of working status, caregiver experiences, and psychological and social resources to carer QoL (EQ-5D) and well-being (WHO-5). After controlling for age, gender, carer–dyad relationship, and severity of dementia, working status contributed significant variance to EQ-5D (2%) but not to WHO-5 scores.

Introduction: Alzheimer's disease (AD) caregivers resilience involves the interaction between different risk and protective factors. Context of care, objective stressors, perceived stressors caregiver assessment, mediators factors and consequences of care were associated with resilience. We have developed a more integrated and operational conceptual model of resilience and care than previous models in our sociocultural environment.

Background: Stroke caregiving has been associated with higher rates of caregiver burden, depression, and lower quality of life compared to non-caregivers. Little is known about relationships between stroke survivors' Cognitive/Emotional and Motor/Functional deficits and caregivers' outcomes.; Objective: To determine the relationship between stroke survivors' Cognitive/Emotional deficits and Motor/Functional deficits and caregivers' depression, burden, and quality of life.; Method: This is a retrospective secondary data analysis.

Purpose: Family disruption is often an indirect consequence of providing care for a person with traumatic brain injury (TBI). This article describes the development and preliminary validation of a Family Disruption scale designed for inclusion within the TBI-CareQOL, measurement system. Method/Design: Five hundred thirty-four caregivers of persons with TBI (service member/veteran n = 316; civilian n = 218) completed the Family Disruption scale, alongside several other measures of caregiver strain and health-related quality of life.