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Information needs of patients with chronic diseases and their relatives for web-based advance care planning: a qualitative interview study

Background: Advance care planning (ACP) enables persons to identify preferences for future treatment and care, and to discuss, record and review these preferences. However, the uptake of ACP among patients with chronic diseases is relatively low. Web-based ACP programs can support patients and their relatives in ACP. However, information needs of patients and their relatives for ACP are unknown. The aim of this study is to explore information needs of patients with chronic disease and their relatives for web-based ACP.

Mon, 06/06/2022 - 16:07

Informal Caregiving and Strains: Exploring the Impacts of Gender, Race, and Income

Background: Informal caregivers are those who provide care for others without compensation. In the US, 85 % of elderly individuals receive care from an informal caregiver, and this number is expected to increase. Caregivers often experience different types of strain, stemming from physical, emotional, and financial demands.

Mon, 06/06/2022 - 13:27

Informal Caregiving and Disaster Risk Reduction: A Scoping Review

Background: Informal caregivers are a population currently in the shadows of disaster risk reduction (DRR), and yet essential to the provision of healthcare services. This scoping review explored the literature to understand issues related to informal caregiving and promising practices to support resilience for disasters. Methods: Following guidelines for scoping review as outlined by Tricco et al. (2016), relevant publications were identified from five major databases—Medline, Embase, PubMed, Web of Science, and Scopus.

Mon, 06/06/2022 - 13:20

Informal caregivers during the COVID-19 pandemic perceive additional burden: findings from an ad-hoc survey in Germany

Background: While the relation between care involvement of informal caregivers and caregiver burden is well-known, the additional psychosocial burden related to care involvement during the COVID-19 pandemic has not yet been investigated. Methods: A total of 1000 informal caregivers, recruited offline, participated in a cross-sectional online survey from April 21 to May 2, 2020.

Mon, 06/06/2022 - 12:26

Informal caregiver well-being during and after patients’ treatment with adjuvant chemotherapy for colon cancer: a prospective, exploratory study

Introduction: Caring for a significant other during cancer treatment can be demanding. Little is known about the well-being of informal caregivers of patients with colon cancer. This study aims to examine informal caregiver well-being during adjuvant chemotherapy for colon cancer.

Mon, 06/06/2022 - 11:41

Informal Care of Dependent Older People—Support Services and Funding Schemes

This chapter is dealing with aspects regarding informal care of dependent older people. Based on the analysis of the information obtained from the good practice and the informal care regulatory status in Romania, the authors proposed a set of support services and funding schemes that could be implemented in our country as follows: care leave and care allowance; palliative care leave; prolonged care leave; the employment of a personal assistant under the terms of the Framework Law no.

Mon, 06/06/2022 - 11:33

Informal care and the impact on depression and anxiety among Swedish adults: a population-based cohort study

Background: As the population is ageing, the need for informal caregivers increases, and thus we need to know more about the effects on caregivers. This study aims to determine both cross-sectional and longitudinal associations between perceived limitation of informal caregiving and mental health of caregivers. Methods: This population-based cohort study was based on the Swedish Psykisk hälsa, Arbete och RelaTioner (PART) study, and 9346 individuals aged 18–65 were included. Data were collected through questionnaires, interviews and Swedish registers.

Mon, 06/06/2022 - 11:18

The impacts of caregiving intensity on informal caregivers in Malaysia: findings from a national survey

Background: Provision of informal care may adversely affect health, daily and social activities of the informal caregivers, but few studies have examined these effects in relation to caregiving intensity. This study examined the predictive factors associated with the effects of caregiving roles on health, daily and social activities of informal caregivers, accounting for caregiving intensity. Methods: Data of adults aged 18 years and over from the National Health and Morbidity Survey 2019 were used.

Sun, 06/05/2022 - 18:25

The impact of uncertainty on bereaved family's experiences of care at the end of life: a thematic analysis of free text survey data

Background: Inequities in the provision of palliative care for people with cardiac disease have been well documented in the literature. Despite experiencing significant palliative care needs, those with cardiac disease are less likely to be referred to specialist palliative care services and more likely to die in a hospital when compared to those with cancer. The unpredictable trajectory of heart failure has been identified as a key barrier to providing palliative care with many people experiencing a long period of stability with appropriate medical treatment.

Sun, 06/05/2022 - 18:18

The impact of severe rare chronic neurological disease in childhood on the quality of life of families—a study on MLD and PCH2

Background: Rare and severe neurological disorders in childhood not only heavily affect the life perspective of the patients, but also their caregivers and families.

Sun, 06/05/2022 - 17:17

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