Carer experiences of providing bladder & bowel care in palliative care
Research type
Research Study
Full title
Informal carers’ experiences of providing bladder and bowel care to palliative patients and their perceptions of their practical and psychosocial support needs.
IRAS ID
193272
Contact name
Sarah Combes
Contact email
Sponsor organisation
King's College London
Duration of Study in the UK
0 years, 8 months, 27 days
Research summary
Bladder and bowel care is a significant element of palliative care with a majority of terminally ill patients needing assistance to use the toilet, commode or urinal, or suffering from constipation, faecal incontinence, urinary incontinence or urinary retention. As people become less well these symptoms often become worse and their dependency increases meaning they need to rely more on the assistance of others, most often their informal carer.
There is very little in the literature as to how informal carers cope with providing bladder and bowel care to terminally ill people, how it impacts their relationship, or how best to support them. The number of informal carers, as well as the number of palliative patients and the complexities of their illnesses, is set to increase. Currently informal carers provide an estimated 55% of community care (Jansma et al., 2005). To enable terminally ill people to be cared for and die at home, which is what the majority wish for, informal carers need to be given the information, education, training and psychosocial support they need.
This study aims to answer the question; “What are informal carers’ experiences of providing bladder and bowel care to palliative patients and what are their perceptions of their practical and psychosocial support needs?“ It will do this in two phases. Phase one will interview informal carers who provide bladder and/or bowel care to someone diagnosed with a terminal illness in the home. Interviews will explore their experiences of offering this care and how these symptoms impact their lives. They will also explore the information, education, psychosocial support and training they feel would be acceptable and beneficial to them. Phase two will be a group discussion with community nursing and allied health professionals exploring their experiences of supporting informal carers with bladder and bowel care.
REC name
North West - Preston Research Ethics Committee
REC reference
16/NW/0042
Date of REC Opinion
15 Feb 2016
REC opinion
Further Information Favourable Opinion