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Journal article

Beliefs of Israeli Family Caregivers of People with Dementia toward Advance Care Planning

Family caregivers of people with dementia often must make crucial medical decisions for them that may increase the burden of care experienced. Although undertaking Advance Care Planning (ACP) might reduce their decision-making burden, completion rates remain very low. The present study aimed to explore the common beliefs of family caregivers of people with dementia about undertaking ACP for themselves. A qualitative study was conducted, using a semi-structured questionnaire based on the Theory of Planned Behavior.

Fri, 11/20/2020 - 16:44

Becoming a family caregiver of a patient living with cancer

Background: There is insufficient information on how the burden of caregiving is affected when the family caregiver is a health professional.

Fri, 11/20/2020 - 16:29

Barriers to advance care planning: a qualitative study of seriously ill Chinese patients and their families

Background: Advance care planning (ACP) facilitates identification and documentation of patients' treatment preferences. Its goal aligns with that of palliative care – optimizing quality of life of seriously ill patients. However, concepts of ACP and palliative care remain poorly recognized in Chinese population. This study aims at exploring barriers to ACP from perspective of seriously ill patients and their family caregivers. Methods: This is a qualitative study conducted in a Palliative Day Care Centre of Hong Kong between October 2016 and July 2017.

Fri, 11/20/2020 - 16:25

Balancing dementia family carers' rights to online supports with the rights of people with dementia to absolute privacy

In its mission to protect the personal data of European Union (EU) citizens, the reach of the General Data Protection Regulation (GDPR) extends into the research activities traditionally supervised and approved by university institutional review and ethics boards. This article discusses how transnational research for an online support intervention for family carers of people with dementia was obstructed by a particularly restrictive interpretation of the 2018 GDPR.

Fri, 11/20/2020 - 16:17

Balance and preference in activity participation for informal caregivers of people with aphasia: A questionnaire study

With increased attention to third-party disability, there is a need to evaluate how informal caregivers of people with aphasia participate in diverse life activities. Qualitative research has improved our understanding of experiences and priorities in this essential group of stakeholders. However, there has been limited effort to confirm results quantitatively and based on robust sample sizes. To characterize the balance and preference among home/work, leisure, and social activities for informal caregivers based on questionnaires that can also be used with people who have aphasia.

Fri, 11/20/2020 - 16:11

Baby Boomers as Caregivers: Results From the Behavioral Risk Factor Surveillance System in 44 States, the District of Columbia, and Puerto Rico, 2015-2017

Introduction: Baby boomers, people born from 1946 through 1964, represent a substantial portion of the US population. Generally, baby boomers have more chronic disease and disability than those in the previous generation. Frequently, they also provide informal care to others. The objective of our study was to estimate the prevalence of informal caregiving among baby boomers and compare the health of baby boomer caregivers and noncaregivers.

Fri, 11/20/2020 - 15:44

The awareness, visibility and support for young carers across Europe: a Delphi study

Background: Across Europe, young carers (YCs) and their need for support receive limited attention in the media, policy and empirical research, even though, similar to adult carers, they also provide care to ill family members. The Delphi study, a qualitative research methodology, which provides the focus for this article, had the overall aim of exploring existing successful strategies to support YCs. Compared to YCs, even less is known about adolescent young carers (AYCs), a group that is in a critical life transition phase.

Thu, 11/19/2020 - 14:52

Awareness, utilization and influencing factors of social supports for main informal caregivers of schizophrenia patients: a cross-sectional study in primary care settings in Beijing, China

Background: Most schizophrenia patients are supported by main informal caregivers at home in China. This study aims to investigate the further needs of social supports for main informal caregivers of schizophrenia patients and to analyze influencing factors on the awareness and utilization of social supports in Beijing. The results of this study could potentially act as reference for health professionals to implement appropriate and effective support programs. Methods: A mixed-methods approach was used in this study.

Thu, 11/19/2020 - 14:45

An autoethnography of death and dying in Northern Ireland: Managing Community Care

Purpose In Northern Ireland, access to good quality palliative care is an accepted and expected part of modern cancer care. The “Transforming Your Palliative and End of Life Care” programme “supports the design and delivery of coordinated services to enable people with palliative and end of life care needs to have choice in their place of care, greater access to services and improved outcomes at the end of their lives”.

Thu, 11/19/2020 - 14:40

Attitudes of Professional Caregivers and Family Members Regarding the Use of Monitoring Devices to Improve Assessments of Pain and Discomfort During Continuous Sedation Until Death

Context: Assessing consciousness and pain during continuous sedation until death (CSD) by behavior-based observational scales alone has recently been put into question. Instead, the use of monitoring technology has been suggested to make more objective and reliable assessments. Insights into which factors influence attitudes toward using these monitoring devices in a context of CSD is a first step in formulating recommendations to inform future practice.

Thu, 11/19/2020 - 14:32