(duplicate) Caring for a dying person at home - the carer’s experience
Research type
Research Study
Full title
A phenomenological study to investigate the experiences of informal caregivers caring for a person at home in the dying phase.
IRAS ID
137063
Contact name
Hazel M. Chapman
Contact email
Sponsor organisation
University of Chester
Research summary
This study investigates the caring experiences of the dying phase of a person’s life at home, entirely from the perspective of the informal carers involved. Home death is most patients’ preference (Department of Health [DH], 2008a; National Audit Office, 2008), 20% of people currently die at home and this number is set to increase. Involving carers in how services are provided is necessary for quality palliative care (National Institute for Clinical Excellence [NICE], 2004) as they often provide most of the care (DH, 2008b), but this role can feel like a burden to carers (Munck, Fridlund and Martensson, 2008, Jack and O’Brien, 2010). Carers report feeling inadequate, ineffective, frightened and uncertain (Funk et al, 2010, Hasson et al, 2010) but the reasons behind these negative feelings have not been adequately explored (Stadjduhar et al, 2010). The contribution of informal caregivers is essential in meeting a patient’s wish to die at home (Grande and Ewing 2008) so exploring their point of view is important to improve the effectiveness of measures to support them. This knowledge will contribute to the facilitation of home deaths (Broback and Bertero, 2003) which research suggests helps bereaved carers to cope with their loss (DH, 2008b, McNamara and Rosenwax, 2010). People will be eligible to take part if they have been bereaved in the last six to twelve months and cared for a person who has died at home. The participants will be interviewed in a setting of their choice and the interview is expected to last an hour.
The aim of this research study is to better inform future health care practice about the ways in which carers need to be supported more effectively to help them to fulfil the wishes of the dying to remain at home and to improve their ability cope afterwards.REC name
North West - Haydock Research Ethics Committee
REC reference
13/NW/0639
Date of REC Opinion
23 Oct 2013
REC opinion
Further Information Favourable Opinion