Understanding the carer's experience of palliative care
Research type
Research Study
Full title
A qualitative study using visual and verbal data to reveal the experience of being a carer in palliative care.
IRAS ID
198424
Contact name
Annie Dunsmore-Dawson
Contact email
Sponsor organisation
Sheffield Hallam University
Duration of Study in the UK
0 years, 8 months, 31 days
Research summary
People who undertake to provide care for a close family member with palliative care needs are in a fluctuating process of change as they adapt to changes in their own and the patient's life.
Critical points in illness have been offered as evidence of transition for those living with chronic illness. Yet, it is increasingly recognised that carer's needs may not unfold along the same predictable pathway as the patients illness. The compartmentalizing of stages and phases of illness , fails to take into account the sociocultural influences that may impact on carers in idiosyncratic ways and which provide a backdrop to their unique understandings throughout the course of caring.
The current study aims to address this issue by utilizing qualitative research to explore the unfolding experience of up to ten carers of palliative patients at differing points in caring between home and inpatient hospice care.
The use of verbal and visual data will be used where feasible to explore the individual social and culturally driven beliefs of individual carers over a seven-month period.
Using Pictor to explore experience
The Pictor technique involves the creation of a chart that forms the basis of the research interview. The chart is created by the participant and represents their understanding of the caring experience. The constructed chart facilitates exploration of the participant’s experience with regard to multi agency/multi-factor situations by encouraging participants to reflect on, and discuss these experiences with a researcher.
Where participants do not wish to construct a Pictor chart, semi-structured interviews will be used based upon a loose interview topic guide. The study will contribute to a greater understanding of carers' experiences based upon their individual experience. This will help to inform more targeted support for carers from a wider range of social and cultural backgrounds.REC name
Yorkshire & The Humber - South Yorkshire Research Ethics Committee
REC reference
16/YH/0201
Date of REC Opinion
1 Aug 2016
REC opinion
Further Information Favourable Opinion