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Family carer perspectives of acute hospital care following a diagnosis of motor neuron disease: a qualitative secondary analysis
  1. Mary R O'Brien1 and
  2. Harriet Preston2
  1. 1Faculty of Health & Social Care, Evidence-based Practice Research Centre (EPRC), Edge Hill University, Ormskirk, Lancashire, UK
  2. 2St Catherine's Hospice, Preston, Lancashire, UK
  1. Correspondence to Dr Mary R O'Brien, Faculty of Health & Social Care, Evidence-based Practice Research Centre (EPRC), Edge Hill University, Ormskirk, Lancashire L39 4QP, UK; obrienm{at}


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 non-specialist 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.

  • Motor Neurone Disease
  • Carers
  • Qualitative Research
  • Secondary Analysis
  • Acute Hospital

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