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Spinal cord injury and long-term carers: Perceptions of formal and informal support

The grounded theory study from which this paper is drawn explored the experiences of partners and other long-term family carers living with, and supporting, a person with a spinal cord injury over long periods of time. Eleven (11) female carers with between eight and 33 years of living with, and supporting, a family member with a spinal cord injury were purposively recruited to the study. The study identified a number of key issues for long-term carers in this context.

Wed, 07/04/2018 - 16:50

We're all in it together: supporting young carers and their families in Australia

Although recent initiatives in Australia have attempted to respond to the needs of children and young people with care responsibilities, many continue to be unable to access responsive supports. A qualitative, exploratory study was conducted to identify the current needs and barriers to services for young carers and their families in Canberra, Australia. This paper focuses on a range of family, service and systems level issues that impede young carers' access to services.

Thu, 07/20/2017 - 15:23

Accounts of disruptions to sexuality following cancer: the perspective of informal carers who are partners of a person with cancer

There is a growing body of research showing that cancer impacts upon the sexuality of informal carers in a couple relationship with a person with cancer. However, this research is primarily focused on partners of a person with gynaecological or breast cancer, within a framework where the physiological effects of cancer on sexual performance are the focus. We conducted semi-structured interviews with 20 informal carers in a couple relationship with a person with cancer, across a range of cancer types.

Thu, 07/20/2017 - 15:18

A pilot study of how information and communication technology may contribute to health promotion among elderly spousal carers in Norway

The objective of this pilot Norwegian intervention study was to explore whether use of information and communication technology (ICT) by informal carers of frail elderly people living at home would enable them to gain more knowledge about chronic illness, caring and coping, establish an informal support network and reduce stress and related mental health problems.

Thu, 07/20/2017 - 15:17

Carers living with stroke survivors who were incontinent had minimal social interaction and felt socially isolated

QUESTIONWhat are the social consequences for informal carers who live with stroke survivors who have urinary incontinence?DESIGNIn-depth interviews analysed by constant comparison.SETTINGHomes of stroke survivors.PARTICIPANTSPurposive sample of 20 carers 51-86 years of age (65% women) who lived in the same house and provided care to stroke survivors with incontinence for 7 months to 18 years without remuneration; most were spouses, partners, or daughters of care recipients (CRs).

Thu, 07/20/2017 - 15:16

'Your friends don't understand': invisibility and unmet need in the lives of 'young carers'

This paper is based on a study of the experiences of people identified as 'young carers', commissioned by the National Assembly for Wales as part of a wider review of carers' needs and services. Following a brief review of some of the previous research in this area, the paper reports key findings of the research, using the words of children and young people as much as possible.

Thu, 07/20/2017 - 15:15

Loss of autonomy, control and independence when caring: a qualitative study of informal carers of stroke survivors in the first three months after discharge

Purpose. Stroke has far reaching effects on both stroke survivors and their informal carers. Research has highlighted changes in autonomy of stroke survivors, but insufficient focus has been put on the associated reduced control and independence of their informal carers. This study investigates the experiences of informal carers of stroke survivors from discharge to 3 months later.

Thu, 07/20/2017 - 15:15

How do we facilitate carers' involvement in decision making?

Background. Government health care policy urges service providers to involve service users in the decision-making process. Research studies have recommended changes to current health care practice to facilitate this involvement. However, carers’ organizations continue to highlight a gap between policy and practice in relation to involvement.

Thu, 07/20/2017 - 15:13

Managing uncertainty in life after stroke: a qualitative study of the experiences of established and new informal carers in the first 3 months after discharge

Background: Caring for stroke survivors at home can have an enormous impact on informal carers and past research has tended to focus on the negative emotional consequences of caring, with few identifying any positive outcomes. Despite an awareness that the experiences of these carers change over time, there is a dearth of qualitative studies investigating carers’ experiences over time.

Objectives: To investigate the experiences of informal carers of stroke survivors over time.

Design: Qualitative study.

Thu, 07/20/2017 - 15:13

The search for meaning in HIV and AIDS: the carers' experience

This article explores informal carers' experiences in caregiving for people living with HIV and AIDS. The search for meaning encompasses the ways in which carers find meaning in caregiving. A grounded theory approach was taken. Data were collected by means of 43 in-depth interviews and participant observation. Caregivers felt that it was important to have control over the emphasis that HIV had within their lives and developed an attitude that put the virus in perspective. Getting involved in HIV and AIDS work outside of the immediate caregiving relationship was evident.

Thu, 07/20/2017 - 15:13

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