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Journal article

What Do Parents Value Regarding Pediatric Palliative and Hospice Care in the Home Setting?

Context: Children with life-shortening serious illnesses and medically-complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting (PPHC@Home) families value the most. Objectives: To explore how parents rate and prioritize domains of PPHC@Home as the first phase of a larger study that developed a parent-reported measure of experiences with PPHC@Home.

Mon, 07/25/2022 - 18:03

What do family care-givers want from domiciliary care for relatives living with dementia? A qualitative study

Background: In the current ecology of care, social, rather than medical, support is critical in enabling frail older people to live at home. Objectives: This paper reports findings from a qualitative study about how home care workers (HCWs) support persons with dementia living in the community. Methods: Semi-structured qualitative interviews were carried out in England with 14 family care-givers (FCGs) recruited from a single private home care provider. A thematic analysis of the data was undertaken using the constant comparative method.

Mon, 07/25/2022 - 17:56

What are the shared decision‐making experiences of adult children in regard to their parent/s' health care in residential aged care facilities?

Aim: This scoping literature review aimed to answer the question: What are the shared decision‐making experiences of adult children in regard to their parent/s' health care in residential aged care facilities? Background: Shared decision‐making has been an important patient‐centred approach to nursing care since the 1990s, yet it is becoming increasingly evident that it is still not the reality in aged care facilities fifty years on.

Mon, 07/25/2022 - 17:49

Well‐being losses by providing informal care to elderly people: Evidence from 310 caregivers in Shanghai, China

Background: A series of policies aimed toward rational resource allocation of long‐term care have being actively discussed since the launch of the social long‐term care insurance in Shanghai, and it is important to take a societal perspective for informed decision‐making. Objectives: This study aims to explore factors that are associated with well‐being of informal caregivers in Shanghai, and to provide empirical evidence of application of an established well‐being valuation method to monetise informal caregivers' well‐being losses in a developing country.

Mon, 07/25/2022 - 16:15

Well‐being and needs of Malay carers of people with mental illness in Singapore

Background: Despite the importance of carers supporting the lives of people with mental illness, there are limited studies investigating the well‐being and needs of Malay carers in multicultural Singapore. The Malays consist of 13.4% of Singapore's population. Methods: A mixed methods qualitative dominant research approach was used to explore the well‐being and needs of Malay carers in a voluntary welfare organisation.

Mon, 07/25/2022 - 16:03

WeChat use among family caregivers of people living with schizophrenia and its relationship to caregiving experiences

Objectives: This study examines WeChat use among family caregivers of persons living with schizophrenia (PLS), its socio-demographic correlates and relationship to caregiving experiences, including perceived stress, stigma, coping, social support, family functioning, and caregiving rewarding feelings. Methods: A cross-sectional study was conducted with 449 family caregivers of PLS. Face-to-face interviews were conducted to collect information on socio-demographics, WeChat use, and a range of caregiving experiences.

Mon, 07/25/2022 - 15:13

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

“We Have to Be Strong Ourselves”: Exploring the Support Needs of Informal Carers of Aboriginal and Torres Strait Islander People with Cancer

Background: Informal carers provide an important role in supporting people with cancer. Aboriginal and Torres Strait Islander peoples experience higher cancer mortality than other Australians. To date, very little is known about the support needs of carers of Aboriginal and Torres Strait Islander adults with cancer. This article explored these needs through a qualitative study.

Mon, 07/25/2022 - 14:00

“We are humans after all”: Family caregivers’ experience of caring for dependent older adults in Brazil

Objective: This paper aims to understand the experiences of family caregivers with dependent older adults in Brazil and the consequences of caring for dependent older adults in the family caregiver’s life. Methods: This is a qualitative multicenter study employing dialectical hermeneutics as a theoretical framework. In-depth interviews were conducted with 84 family caregivers in Brasília, Rio de Janeiro, Belo Horizonte, Fortaleza, Teresina, Porto Alegre, and Araranguá, and Manaus.

Mon, 07/25/2022 - 13:51

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

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