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Why are family carers of people with dementia dissatisfied with general hospital care?: a qualitative study

Jurgens, Fiona J.; Clissett, Philip; Gladman, John R.F.; Harwood, Rowan H.

Authors

Fiona J. Jurgens

Philip Clissett

John R.F. Gladman john.gladman@nottingham.ac.uk

Rowan H. Harwood



Abstract

Background
Families and other carers report widespread dissatisfaction with general hospital care for confused older people.

Methods
We undertook a qualitative interviews study of 35 family carers of 34 confused older patients to ascertain their experiences of care on geriatric and general medical, and orthopaedic wards of a large English hospital. Transcripts were analysed using a grounded theory approach. Themes identified in interviews were categorised, and used to build a model explaining dissatisfaction with care.

Results
The experience of hospital care was often negative. Key themes were events (illness leading to admission, experiences in the hospital, adverse occurrences including deterioration in health, or perceived poor care); expectations (which were sometimes unrealistic, usually unexplored by staff, and largely unmet from the carers’ perspective); and relationships with staff (poor communication and conflict over care). Expectations were influenced by prior experience. A cycle of discontent is proposed. Events (or ‘crises’) are associated with expectations. When these are unmet, carers become uncertain or suspicious, which leads to a period of ‘hyper vigilant monitoring’ during which carers seek out evidence of poor care, culminating in challenge, conflict with staff, or withdrawal, itself a crisis. The cycle could be completed early during the admission pathway, and multiple cycles within a single admission were seen.

Conclusion
People with dementia who have family carers should be considered together as a unit. Family carers are often stressed and tired, and need engaging and reassuring. They need to give and receive information about the care of the person with dementia, and offered the opportunity to participate in care whilst in hospital. Understanding the perspective of the family carer, and recognising elements of the ‘cycle of discontent’, could help ward staff anticipate carer needs, enable relationship building, to pre-empt or avoid dissatisfaction or conflict.

Journal Article Type Article
Publication Date Sep 24, 2012
Journal BMC Geriatrics
Electronic ISSN 1471-2318
Publisher Humana Press
Peer Reviewed Peer Reviewed
Volume 12
Issue 57
Article Number 1
Institution Citation Jurgens, F. J., Clissett, P., Gladman, J. R., & Harwood, R. H. (2012). Why are family carers of people with dementia dissatisfied with general hospital care?: a qualitative study. BMC Geriatrics, 12(57), doi:10.1186/1471-2318-12-57
DOI https://doi.org/10.1186/1471-2318-12-57
Publisher URL http://www.biomedcentral.com/1471-2318/12/57
Copyright Statement Copyright information regarding this work can be found at the following address: http://creativecommons.org/licenses/by/4.0

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Copyright Statement
Copyright information regarding this work can be found at the following address: http://creativecommons.org/licenses/by/4.0





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