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Background: Huntington's disease (HD) has been shown to reduce health-related quality of life (HRQoL) and affect healthcare resource utilization (HRU) among patients and care partners internationally but has not been studied specifically in the Canadian context. Objective: To characterize the burden of HD on individuals with HD and care partners of individuals with HD in Canada. Methods: An online survey was distributed (September 14–November 23, 2020) through patient organizations to collect data on demographic and clinical characteristics, as well as: HRQoL, measured using the 36-Item Short-Form Health Survey (SF-36v1); HRU, measured using the Client Service Receipt Inventory (CSRI); and care partner burden, measured using the Caregiver Strain Index (CSI) and Huntington's Disease Quality of Life Battery for Carers (HDQoL-C). Descriptive statistics were used to report data and compare subgroups. Results: A total of 62 adult individuals with HD (or their proxies) and 48 care partners met defined eligibility criteria. The mean [standard deviation] age was 51.2 [13.8] and 58.1 [13.9] years for individuals with HD and care partner respondents, respectively. For individuals with HD, the greatest HRQoL burden (i.e., lowest score) was for the SF-36v1 Role –Physical scale (46.8 [42.9]). HRU was higher for some services (e.g., general practitioner visits) for respondents who had experienced motor onset transition. Among care partners, 55.3% experienced high strain, as indicated by the CSI. The HDQoL-C showed the greatest HRQoL burden in feelings about life (45.1 [17.9]). Conclusion: This study quantified the substantial burden on individuals with HD and care partners in Canada, addressing a critical knowledge gap that can affect the availability of and access to healthcare services. [ABSTRACT FROM AUTHOR]

Background- One of the most compassionate and self-sacrificing things a person can do is care for a sick loved one. Caring for a family member with impaired mental and behavioral functioning presents the most stressful of care giving situations. Keeping family caregivers healthy and able to provide care is crucial to maintaining our nation's long-term healthcare system. Aims- To assess the effectiveness of Empowerment programme regarding stress and care giving burden among care givers of chronically ill patients in experimental and comparison group. Material and Methods - A Quasi Experimental non Equivalent control group pretest post test design. 95 care givers of chronically ill patients (50 in experimental and 45 in comparison group) selected from hospital by using convenience sampling technique. Empowerment programme was administered in experimental group. Selected demographic characteristics, standardized perceived stress scale and standardized care giver burden scale were used to collect data. Results- The study showed that the mean post test 1 and post test 2 stress score was 12.44 ± 2.10 & 12.26±2.05 and 14.11 ± 3.11 & 14.40± 3.12 in experimental and comparison group respectively. There was no significant correlation between stress and care giving burden. There was no association of care giving burden score of the care givers in experimental and comparison group with their selected patient demographic characteristics and there was no significant association of care giving burden scores with their selected care giver demographic characteristics in experimental group and in comparison group except gender. Conclusion- Empowerment programme was effective in reducing stress and care giving burden among care givers of chronically ill patients. [ABSTRACT FROM AUTHOR]

Aim: This study was carried out to examine the mental health status and care burden of relatives of patients receiving care from the home care unit. Material and Method: This descriptive study was performed with the relatives of 102 patients who were served from the Home Care Unit of Karabük Training and Research Hospital between September and December 2018. The data were collected with a Participant Information Form, General Health Questionnaire-28 (GHQ-28) and the Burden Interview (BI). Data analyzed using descriptive statistics, Mann-Whitney U test, Kruskal-Wallis test, Spearman correlation analysis. Results: 58.8% of the caregivers were female, 69.6% were married and the mean age was 42.96±13.69. The mean total score of GHQ-28 was 5.76±4.07. The mean total score of BI was 51.11±19.86. A weak positive correlation was found between the GHQ-28 total score and the BI score (r=0.233; p=0.018). It was found that 54.9% of caregivers were at risk for mental health, and 65.5% were over/overly burden of caring. According to age, gender, marital status and occupation, in GHQ-28 scores; a significant difference was found in the scores of caregiving burden according to financial problems, degree of closeness and gender of the patient. Conclusion: Taking measures to reduce the burden of care is thought to be effective in protecting and improving mental health. [ABSTRACT FROM AUTHOR]

To determine if a training program, aimed at home care workers, for caring for the elderly and for providing their own self-care is effective for reducing workers burden in the short and long terms and to identify the associated variables that can influence burden across 12 months. An increasing number of older adults rely on home care workers as a complement to the care received from family caregivers. However, these workers do not usually have any formal training in nursing care and occasionally suffer burden. A pre- and post-intervention study with a follow-up at 12 months including 86 participants. An 85-hour training course, which included a practical module lasting 35 h, was offered on five separate occasions between 2014 and 2017 in Barcelona (Spain). The care burden was measured according the Zarit Burden Interview and care knowledge and perceived difficulty performing care tasks were assessed. We also gathered data on the physical and psychological status of the care recipients. The educational intervention was effective after training (−7.45% p =.020) and although the initial burden on caregivers did not worsen significantly despite spending 12 months caring for people with moderate physical and psychological dependence, the decrease in the burden was not maintained over time. Associated variables that can influence the burden over 6 months were the caregivers' baseline perception of lacking knowledge and/or having no difficulty with care tasks. The variable that could influence overburden in caregivers at 12 months was becoming ill before the intervention. For the first time, the effectiveness of home workers-specific training has been demonstrated: a reduction in the perceived burden was observed immediately following training completion, but this reduction was not sustained at 6/12 months. The practical interpretation is that a remedial/follow-up training course may be needed. Whether difficulty in providing care or having sufficient knowledge and having an illness influence self-care maintenance requires further verification. [ABSTRACT FROM AUTHOR]