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Discontinuity of care at end of life: a qualitative exploration of OOH end of life care
  1. Geraldine M Leydon1,
  2. Narinder K Shergill2,
  3. Charles Campion-Smith3,
  4. Helen Austin4,
  5. Caroline Eyles1,
  6. Jenny Baverstock1,
  7. Julia Addington-Hall5,
  8. Richard Sloan6,
  9. Carol Davis7 and
  10. Michael V Moore1
  1. 1Primary Care & Population Sciences, University of Southampton, Aldermoor Health Centre, Southampton, Hampshire, UK
  2. 2Black Country Partnership NHS Foundation Trust, South East Older Adults Community Mental Health Team, Brooklands Health Centre, Wolverhampton, UK
  3. 3School of Health and Social Care, Bournemouth University, Dorchester, Dorset, UK
  4. 4DHUFT(Dorset Healthcare University Foundation Trust) Forston Clinic, Dorchester, Dorset
  5. 5Faculty of Health Sciences, University of Southampton, Southampton, UK
  6. 6Weldmar Hospicecare Trust, Dorchester, UK
  7. 7The Education Centre, Countess Mountbatten House, Moorgreen Hospital, Southampton, Hampshire, UK
  1. Correspondence to Dr Geraldine M Leydon, Primary Care & Population Sciences, University of Southampton, Aldermoor Health Centre, Aldermoor Close, Southampton, Hampshire SO16 5ST, UK; G.M.Leydon{at}soton.ac.uk, gerry{at}soton.ac.uk

Abstract

Objective This study aimed to understand the experiences of palliative care patients when accessing or making decisions about out of hours (OOH) services. It also aimed to illuminate barriers and enablers to accessing appropriate and timely care following the introduction of the 2004 New General Medical Services Contract.

Method Longitudinal prospective qualitative study using semi-structured interviews and telephone interviews over 6 months and analysed for thematic content. 32 patients defined as receiving palliative care in six General Practices and three hospices selected on the basis of size and rural/urban location in Southern England were recruited.

Results Continuity of care was highly valued. Participants described the importance of being known by the healthcare team, and the perceived positive implications continuity could have for the quality of care they received and the trust they had in their care. Various factors prevented participants from seeking help or advice from OOH services, despite having health concerns that may have benefitted from medical assistance. Prior poor experience, limited knowledge of services and knowing who to call and, indeed, when to call were all factors that reportedly shaped participants’ use of OOH services.

Conclusions Interpersonal or relationship continuity and management continuity are vital to the process of optimising the patient experience of OOH palliative care. While recent service innovations are tackling some of the issues highlighted, this research reinforces the value patients with palliative care needs places on continuity and the need to improve this aspect of care management.

  • Qualitative
  • Palliative
  • Received 5 April 2012.
  • Revision received 4 April 2013.
  • Accepted 17 April 2013.

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  • Received 5 April 2012.
  • Revision received 4 April 2013.
  • Accepted 17 April 2013.
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