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Journal article

'What happens when I can no longer care?' Informal carers' concerns about facing their own illness or death: a qualitative focus group study

OBJECTIVES: Older informal carers play an increasingly important role in supporting others with long-term health conditions. This study aimed to explore in depth the perspectives of older carers (70+ years) supporting others with a variety of conditions and disabilities focusing on their thoughts and experiences about when they are unable to continue caring. DESIGN: Qualitative with four focus groups. SETTING: Greater London, UK. PARTICIPANTS: 28 older carers (70+ years) recruited from the voluntary sector participated in this study.

Wed, 10/09/2019 - 12:47

Communal responsibility: a history of health collectives in Australia

Healthcare encompasses multiple discourses to which health professionals, researchers, patients, carers and lay individuals contribute. Networks of patients and non-professionals often act collectively to build capacity, enhance access to resources, develop understanding and improve provision of care. This article explores the concept of health collectives and three notable examples that have had an enduring and profound impact in the Australian context. 

Wed, 10/09/2019 - 12:37

Understanding the psychosocial impact of oral cancer on the family caregivers and their coping up mechanism: A qualitative study in Rural Wardha, Central India

A family caregiver is the one who provides care to their near and dear one who is suffering from some debilitating disease like oral cancer. Apart from providing physical care, they also provide emotional and financial support to their close relatives. They can be the patient's spouse, children, and siblings. This study was, hence, designed to understand the psychosocial impact of caregivers of oral cancer patients.

Wed, 10/09/2019 - 12:31

The dynamics of social care and employment in mid-life

This study investigates the relationship between the provision of informal care to older parents/parents-in-law and the employment status of adult children in mid-life. The study analyses unique panel data for a cohort of individuals born in 1958 in Britain, focusing on respondents at risk of providing care (i.e. with at least one surviving parent/parent-in-law) and in employment at 50.

Wed, 10/09/2019 - 11:59

Family caregivers and decision-making for older people with dementia

This article addresses the dilemmas concerning legislation, individual autonomy and the reality of everyday life for people coping with dementia. We describe and analyse decision-making in relation to older people with dementia in Sweden, within the area of social work regulated by the Social Services Act and the Parental Act. Swedish legislation is based on the individual’s autonomy and capacity to consent to services without anyone having legal authority to decide on behalf of the individual.

Wed, 10/09/2019 - 11:51

Using Video Feedback at Home in Dementia Care: A Feasibility Study

Video feedback at home (VFH) aims to improve the well-being of informal caregivers and persons with dementia by training the caregiver to communicate successfully. This feasibility study had 2 aims: (1) to investigate possible effects regarding VFH, caregiver self-efficacy and the burden experienced, and the frequency of challenging behavior in persons with dementia, and (2) to perform a process evaluation of barriers and facilitators regarding the use of VFH.

Wed, 10/09/2019 - 11:41

Co-construction of an Internet-based intervention for older assistive technology users and their family caregivers: stakeholders’ perceptions

Purpose: Providing care to older adults using assistive technology can be challenging for family caregivers. To inform the development of an Internet-based intervention, this study aimed to identify older assistive technology users and family caregivers’ needs related to assistive technology procurement, and to explore how to offer remote support through an Internet-based intervention.

Wed, 10/09/2019 - 11:36

Co‐production for service improvement: Developing a training programme for mental health professionals to enhance medication adherence in Black, Asian and Minority Ethnic Service Users

AimTo co‐produce consensus on the key issues important in educating mental health‐care professionals to optimize mental health medication adherence in Black, Asian and Minority Ethnic (BAME) groups. Objectives To identify perceptions of factors enabling or disabling medication adherence. To achieve consensus on content and delivery of an educational intervention for mental health‐care professionals. Methods Data were collected from 2016 to 2018.

Wed, 10/09/2019 - 11:30

Assessing mechanisms of benefit in adult day programs: the adult day services process and use measures

Objectives: A limitation of adult day service (ADS) research is that there remains little understanding of how these community-based long-term care programs operate to benefit clients or family caregivers (i.e. the process of ADS use). The purpose of this study was to validate the ‘ADS Process and Use Measures’ (APUM) which were developed to assess such mechanisms. Method: Participant observation and semi-structured interviews in two ADS settings resulted in qualitative data to inform a conceptual model, subscales, and Likert-scale items.

Wed, 10/09/2019 - 11:24

Costs of Family Caregiving in Palliative Care (COFAC) questionnaire: development and piloting of a new survey tool

BACKGROUND: Family caregivers play an important role in the care of patients receiving palliative care, yet little is known about the financial impact of family caregiving in this context. A lack of existing validated tools for collecting data on the costs of family caregiving in palliative care has resulted in a weak and limited evidence base. The aim of the study was to describe the development and initial piloting of a new survey tool which captures data on the costs of family caregiving in palliative care: the Costs of Family Caregiving (COFAC) questionnaire.

Wed, 10/09/2019 - 11:19