Family carer perspectives of acute hospital care following a diagnosis of motor neuron disease: a qualitative secondary analysis

Mary R O'Brien, H Preston

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Abstract

Objectives: The multifaceted nature of the problems faced by someone with motor neuron disease requires a knowledgeable multidisciplinary team approach. Where available, generally, such services are only provided on an outpatient basis, meaning that hospitalised patients are frequently admitted to non-specialist wards where understanding of their needs is limited. Little is known regarding the inpatient care received by patients. Our objective was to address this by exploring the experience of hospitalisation following a diagnosis of motor neuron disease from the perspective of family carers of those diagnosed with the illness. Method: This was a qualitative secondary analysis of pre-existing data from two previously published, separately conducted, qualitative studies. The study involved interview data from 18 bereaved carers and 3 current carers of family members diagnosed with motor neuron disease in Northwest England. Results: The findings reveal dissatisfaction with the inpatient care received, which impacted negatively not only on patient and carer enthusiasm for future hospital admissions but also on carer bereavement. Conclusions: Patients with motor neuron disease have specialist needs that are not always met during hospital admission, particularly to nonspecialist units. The inpatient care provided for these patients must be improved as must the knowledge and understanding of the illness among healthcare professionals who treat them.
Original languageEnglish
Pages (from-to)503-509
JournalBritish Medical Journal Supportive & Palliative Care
Volume5
Early online date28 Mar 2014
DOIs
Publication statusPublished - 1 Dec 2015

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Motor Neuron Disease
Caregivers
Inpatients
Patient Care
Bereavement
England
Hospitalization
Outpatients
Interviews
Delivery of Health Care

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abstract = "Objectives: The multifaceted nature of the problems faced by someone with motor neuron disease requires a knowledgeable multidisciplinary team approach. Where available, generally, such services are only provided on an outpatient basis, meaning that hospitalised patients are frequently admitted to non-specialist wards where understanding of their needs is limited. Little is known regarding the inpatient care received by patients. Our objective was to address this by exploring the experience of hospitalisation following a diagnosis of motor neuron disease from the perspective of family carers of those diagnosed with the illness. Method: This was a qualitative secondary analysis of pre-existing data from two previously published, separately conducted, qualitative studies. The study involved interview data from 18 bereaved carers and 3 current carers of family members diagnosed with motor neuron disease in Northwest England. Results: The findings reveal dissatisfaction with the inpatient care received, which impacted negatively not only on patient and carer enthusiasm for future hospital admissions but also on carer bereavement. Conclusions: Patients with motor neuron disease have specialist needs that are not always met during hospital admission, particularly to nonspecialist units. The inpatient care provided for these patients must be improved as must the knowledge and understanding of the illness among healthcare professionals who treat them.",
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