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“The system is well intentioned, but complicated and fallible” interviews with caregivers and decision makers about palliative care in Canada

Background: Canadian palliative care (PC) philosophy seeks to support individuals in a person-centered and sensitive manner. Unfortunately, philosophy does not necessarily translate into practice and this divide may leave patients without appropriate care at the end of life, causing distress for some families.

Fri, 07/29/2022 - 20:27

“It’s extremely hard but it’s not a burden”: A qualitative study of family caregiving for people living with dementia in Vietnam

Background: Vietnam is one of the fastest-aging countries in the world with a rising number of people with Alzheimer’s disease and related dementias (ADRD). Families in Vietnam provide most of the care for persons living with dementia, yet our understanding of their experiences and needs is limited. Objectives: This study examined the family caregiving experience in a semi-rural region outside of central Hanoi from the perspectives of family caregivers and other key informants.

Fri, 07/29/2022 - 20:18

"The Dementia Diva Strikes Again!": A Thematic Analysis of How Informal Carers of Persons with Dementia Use TikTok

Background: Informal carers of persons with dementia often resort to social media to alleviate their sense of social isolation and cultivate their platform to share their experience in care. Methods: The present study performed a preliminary analysis on how TikTok creators share their personal experience caring for a loved one with dementia through content shared under the hashtag #dementiacaregiver. We performed a systemic review and inductive thematic analysis of 447 TikTok posts.

Fri, 07/29/2022 - 17:51

Whose story is it? Mental health consumer and carer views on carer participation in research

Background: Mental health carers contribute a unique set of perspectives and lived experiences to research; however, national research ethics guidelines do not specifically address the issues that affect informal carers as participants. Objective: This study sought to explore Australian mental health consumer and carer views on the ethical conduct of research involving mental health carers.

Mon, 07/25/2022 - 20:17

Wearable Devices for Assessing Function in Alzheimer's Disease: A European Public Involvement Activity About the Features and Preferences of Patients and Caregivers

Background: Alzheimer’s Disease (AD) impairs the ability to carry out daily activities, reduces independence and quality of life and increases caregiver burden. Our understanding of functional decline has traditionally relied on reports by family and caregivers, which are subjective and vulnerable to recall bias. The Internet of Things (IoT) and wearable sensor technologies promise to provide objective, affordable and reliable means for monitoring and understanding function. However, human factors for its acceptance are relatively unexplored.

Mon, 07/25/2022 - 15:04

Virtual support group for family caregivers of elderly people with dementia in the COVID- 19 scenery

Introduction: The physical, mental and social status of family caregivers and their care demands have been largely overlooked. This fact has been no different during the COVID-19 pandemic.

Mon, 07/25/2022 - 13:04

A Validation Study of the Revised Caregiving Burden Instrument in Korean Family Caregivers of Stroke Survivors

Background: The purpose of the present study was to examine the internal consistency reliability and construct validity of the Caregiving Burden Instrument in Korean informal caregivers of stroke survivors. Methods: A descriptive survey design was used with a convenience sample of 208 primary caregivers of stroke survivors. Internal consistency reliability was assessed using Cronbach’s alpha coefficients. Construct validity was assessed using exploratory and known-group analysis.

Mon, 07/25/2022 - 10:52

The unmet needs of carers of patients diagnosed with sarcoma: A qualitative study

Background: Sarcoma is a rare cancer that may result in reduced mobility, social isolation, poorer mental health, and ongoing medical issues for patients. Family carers play a crucial role in supporting patients throughout their sarcoma journey. Despite the aggressive and debilitating nature of the disease, the unmet needs of these carers are yet to be explored. Objectives: The aim of this study was to explore the unmet needs of carers of patients diagnosed with sarcoma.

Fri, 07/22/2022 - 16:28

Use of psychotropic drugs and its association with overburden on family caregivers of psychosocial care center users

Objectives: The scope of this study was to investigate the prevalence of psychotropic drug use and its association with the overburden felt by family caregivers of Psychosocial Care Center users. This is a cross-sectional study performed with 537 family caregivers in the 21st Health Region of the State of Rio Grande do Sul. Background: The prevalence of psychotropic drug use was calculated with a 95% confidence interval (95%CI) and the heterogeneity tests were performed between the strata of each independent variable.

Fri, 07/22/2022 - 16:08

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