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Caring for children with an intellectual disability: An exploratory qualitative study

This study explored family caregiver experiences of children with an intellectual disability in a rural South African day-care centre. The family caregivers (N = 15; mothers = 60%; age range = 35 to 68 years) completed in-depth interviews regarding their experiences providing care to children with intellectual disability. Data collection and analysis was done using phenomenological methods.

Fri, 01/06/2023 - 17:04

Using QI Methodology to Standardize Education for Families Considering Tracheostomy Placement and Permanent Mechanical Ventilation for Their Children: An Attempt at Full Disclosure (SA520)

An abstract of a study by Thienprayoon et al understanding the long-term implications and decision-making complexities surrounding tracheostomy placement and permanent mechanical ventilation, including caregiver burden of tracheostomy care and potential for limited community resources is presented. The decision to place a tracheostomy tube in a child who will be ventilator-dependent for the duration of her life is complex.

Tue, 12/20/2022 - 16:44

The effects of offering flexible work practices to employees with unpaid caregiving responsibilities for elderly or disabled family members

Approximately one in 10 employees in Australia, the United States, and Europe have unpaid caregiving responsibilities for elderly or disabled family members. This combination of employment and caregiving roles is problematic when there is conflict between their simultaneous demands. Flexible work practices can be an important mechanism for assisting these employees. However, limited attention has been given to determining the benefits of flexible work practices for these employees, or the process by which these effects arise.

Sat, 11/28/2020 - 15:02

Primary Family Caregivers' Reasons for Disclosing Versus Not Disclosing a Cancer Diagnosis in India

Background Nondisclosure of cancer diagnosis continues to be practiced in India, with many family caregivers concealing it from patients in order to protect them from emotional distress. Objective The aim of this study was to explore Indian primary family caregivers' reasons for, and experiences of, disclosure versus nondisclosure to patients about their cancer diagnosis.

Tue, 07/14/2020 - 15:42

Exploring the experience of the disclosure of a dementia diagnosis from a clinician, patient and carer perspective: a systematic review and Meta-ethnographic synthesis

Objectives: The objective of this review was to identify, appraise and synthesise qualitative research that explores the experience of the disclosure of a dementia diagnosis from the perspectives of clinicians, patients and carers. Method: A systematic search of four databases, grey literature and reference lists identified 13 studies, which met the required criteria to be included in the review. All were appraised using a quality appraisal tool. Data were extracted and synthesised using a meta-ethnographic approach.

Tue, 12/17/2019 - 14:08

Disclosing a diagnosis of dementia: a systematic review

BACKGROUND: The issue of diagnostic disclosure in dementia has been debated extensively in professional journals, but empirical data concerning disclosure in dementia has not previously been systematically reviewed.

OBJECTIVE: To review empirical data regarding diagnostic disclosure in dementia.

Thu, 07/20/2017 - 15:23

Non-malignant palliative care: striving for equity

The article explores the problems associated with the provision of palliative care to people with non-malignant disease. The major challenges to the provision of such care include difficulties around prognostication and a reluctance to discuss end-of-life issues. Information is also presented on symptoms management and the need to support informal carers.

Thu, 07/20/2017 - 15:22

Disclosing a diagnosis: the Alzheimer Europe position

Jean Georges and Dianne Gove present Alzheimer Europe’s newly drafted position on the disclosure of the diagnosis to people with dementia and carers

Thu, 07/20/2017 - 15:09