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The psychological effects of caring for a family member with dementia

Background: Informal caregivers have a vital role in supporting and caring for family members with dementia. Caregiving is complex and may lead to psychological, physical, social and financial stress for caregivers. Methods: This article reports the findings of an integrative review that explored the literature on the psychological effect of caring for a family member with dementia at home.

Tue, 08/30/2022 - 19:59

Dyadic Research of Patients and Their Family Caregivers in the Context of Chronic Illness: Current Status and Challenges

Objectives: This narrative review aims to provide an introduction and overview of dyadic research within the context of chronic illness. In addition, some methodological considerations and future directions for conducting dyadic research are presented. Methods: The focus of this review is on adult participants in dyads and with chronic illness based on the previous studies and literatures on dyadic science.

Thu, 08/25/2022 - 17:02

Development and psychometric properties of surveys to assess patient and family caregiver experience with care transitions

Background: The purpose of this study was to develop and administer surveys that assess patient and family caregiver experiences with care transitions and examine the psychometric properties of the surveys. The surveys were designed to ask about 1) the transitional care services that matter most to patients and their caregivers and 2) care outcomes, including the overall quality of transitional care they received, patient self-reported health, and caregiver effort/stress.

Wed, 08/24/2022 - 16:56

Association between having cancer and psychological distress among family caregivers using three years of a nationwide survey data in japan

Objectives: We aimed to describe the characteristics of caregivers with cancer compared to those without and analyze the association between having cancer and caregivers’ psychological distress in Japan. Methods: We used data from the Japanese Comprehensive Survey of Living Conditions in 2010, 2013, and 2016. The participants were 5258 family caregivers aged ≥40 years, caring for only one family member whose information in the dataset was available for all the covariates included in the model.

Thu, 08/18/2022 - 13:26

Views of patients with advanced disease and their relatives on participation in palliative care research

Background: Patients with advanced disease may not be invited to participate in research based on the assumption that participation would be too burdensome for them. The aim of this study was to explore how patients with advanced disease and their relatives evaluate their experience with research participation. Method: This study used data from two parts of a larger project. The first dataset was a cross-sectional questionnaire study focused on priorities at the end of life.

Mon, 07/25/2022 - 12:59

A qualitative investigation into the impact of hemophagocytic lymphohistiocytosis on children and their caregivers

Background: Primary hemophagocytic lymphohistiocytosis (pHLH) is a rare and life-threatening disorder, which usually occurs during infancy or early childhood and is characterized by abnormal activation of the immune system. However, the burden of pHLH on children and their families has not been previously evaluated.

Mon, 06/13/2022 - 14:16

Perceptions of care coordination in cancer patient-family caregiver dyads

Purpose: To examine cancer patients and their family caregivers' perspectives of care coordination (CC) using a dyadic research design. Methods: In this pilot cross-sectional study, 54 patient-family caregiver dyads completed a validated care coordination instrument (CCI) and its parallel family caregiver instrument (CCICG) from June to September 2019. The sample available for analysis included data from 32 dyads, which included patients receiving active therapy for any cancer type and their primary family caregivers aged 18 years or older.

Sat, 06/11/2022 - 11:05

Oral Care Experiences of Palliative Care Patients, Their Relatives, and Health Care Professionals: A Qualitative Study

Background: Oral symptoms in a growing number of palliative care patients are often neglected. Dental professionals are not always involved in palliative care. Oral care is often inadequately delivered to palliative care patients, while oral problems can affect the quality of life. Methods: A qualitative study was conducted to explore oral care experiences of palliative care patients, their relatives, and health care professionals (HCPs). Four patients, 4 relatives, and 4 HCPs were interviewed in a hospice.

Thu, 06/09/2022 - 15:42

Mutual support between patients and family caregivers in palliative care: A systematic review and narrative synthesis

Background: Patients in palliative care are usually conceptualised as recipients of support from family caregivers. Family caregivers in palliative care are typically defined as providers of support to patients. Little is known about reciprocal dimensions of support provision between patients and family caregivers in palliative care. Aim: To identify processes of mutual support between patients and family caregivers in palliative care and factors that contribute to or obstruct mutual support between patients and family caregivers in palliative care.

Wed, 06/08/2022 - 21:21

Learning to change: Transformative outcomes of programmes and activities for family caregivers of people with dementia in Taiwan

Background: This study explored the transformative outcomes of programmes and activities for family caregivers of people with dementia in Taiwan. Methods: Transformative learning theory was used to examine the relationship between participation and positive outcomes. A group of nonparticipants was included to provide a complete picture of the transformative learning process. In this qualitative study, 18 participants were interviewed with audio recording, and the data were transcribed verbatim.

Tue, 06/07/2022 - 13:20

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