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Open Access Highly Accessed Research article

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

Fiona J Jurgens1, Philip Clissett2, John RF Gladman13 and Rowan H Harwood13*

Author affiliations

1 Division of Rehabilitation and Ageing, University of Nottingham, Nottingham, NG7 2UH, UK

2 School of Nursing, University of Nottingham, Nottingham, NG7 2UH, UK

3 Health Care for Older People, Nottingham University Hospitals NHS Trust, Queens Medical Centre, Nottingham, NG7 2UH, UK

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Citation and License

BMC Geriatrics 2012, 12:57  doi:10.1186/1471-2318-12-57

Published: 24 September 2012

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.

Keywords:
Aged; Acute hospital care; Dementia; Delirium; Family carers; Satisfaction with care; Carer strain; Qualitative study; United Kingdom