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Ethnography

Caregiving at the margins: An ethnographic exploration of family caregivers experiences providing care for structurally vulnerable populations at the end-of-life

Background: People experiencing structural vulnerability (e.g. homelessness, poverty, racism, criminalization of illicit drug use and mental health stigma) face significant barriers to accessing care at the end-of-life. 'Family' caregivers have the potential to play critical roles in providing care to these populations, yet little is known regarding 'who' caregivers are in this context and what their experiences may be.

Mon, 11/16/2020 - 11:19

Understanding family caregivers' needs to support relatives with advanced progressive disease at home: An ethnographic study in rural Portugal

Background: Family caregivers play an important role supporting their relatives with advanced progressive disease to live at home. There is limited research to understand family caregiver needs over time, particularly outside of high-income settings. The aim of this study was to explore family caregivers' experiences of caring for a relative living with advanced progressive disease at home, and their perceptions of met and unmet care needs over time. Methods: An ethnographic study comprising observations and interviews.

Tue, 08/11/2020 - 12:49

The impacts of family involvement on general hospital care experiences for people living with dementia: An ethnographic study

Background: A quarter of people in general hospitals have dementia. Limited existing studies suggest that hospital care experiences of people living with dementia, and the involvement of their families in care, may be suboptimal. Objectives: The objectives of this study were to explore how family involvement impacts upon experiences of hospital care for people living with dementia. Design: A qualitative ethnographic study. Methods: Ethnographic data were collected from two care of older people general hospital wards.

Thu, 10/10/2019 - 11:25

Seeing the collective: family arrangements for care at home for older people with dementia

With the predicted growth in the number of people with dementia living at home across the globe, the need for home-based care is expected to increase. As such, it will be primarily family carers who will provide this crucial support to family members. Designing appropriate support for family carers is thus essential to minimise risks to their health, to prevent premature institutionalisation or poor care for persons with dementia, as well as to sustain the effective functioning of health and social care systems.

Mon, 06/10/2019 - 14:29

Exposing the Backstage: Critical Reflections on a Longitudinal Qualitative Study of Residents' Care Networks in Assisted Living

In this article, we analyze the research experiences associated with a longitudinal qualitative study of residents’ care networks in assisted living. Using data from researcher meetings, field notes, and memos, we critically examine our design and decision making and accompanying methodological implications. We focus on one complete wave of data collection involving 28 residents and 114 care network members in four diverse settings followed for 2 years. We identify study features that make our research innovative, but that also represent significant challenges.

Wed, 03/20/2019 - 12:17

The ATHENE Project: The importance of bricolage in personalising assisted living technologies

Introduction: An aging population is fueling interest in assisted living technologies (ALTs) to support independence at home. Numerous ALTs have been developed and deployed, but uptake and use has fallen short of levels predicted by policymakers. A key reason is a lack of understanding of users’ needs. In this paper we report findings from the ATHENE (Assistive Technologies for Healthy Living in Elders: Needs Assessment by Ethnography) project, which is funded by the Technology Strategy Board under its Assisted Living Innovation Platform programme.

Thu, 07/20/2017 - 15:14