title: Discontinuity of care at end of life: a qualitative exploration of OOH end of life care.
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.
  
  
  METHODS
  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.
authors.affiliation: Primary Care & Population Sciences, University of Southampton, Aldermoor Health Centre, Southampton, Hampshire, UK.
authors.forename: Geraldine M
authors.initials: GM
authors.lastname: Leydon
authors.forename: Narinder K
authors.initials: NK
authors.lastname: Shergill
authors.forename: Charles
authors.initials: C
authors.lastname: Campion-Smith
authors.forename: Helen
authors.initials: H
authors.lastname: Austin
authors.forename: Caroline
authors.initials: C
authors.lastname: Eyles
authors.forename: Jenny
authors.initials: J
authors.lastname: Baverstock
authors.forename: Julia
authors.initials: J
authors.lastname: Addington-Hall
authors.forename: Richard
authors.initials: R
authors.lastname: Sloan
authors.forename: Carol
authors.initials: C
authors.lastname: Davis
authors.forename: Michael V
authors.initials: MV
authors.lastname: Moore
mesh_terms: D039602:After-Hours Care / Q000458:organization & administration*; D000368:Aged; D000369:Aged, 80 and over; D003266:Continuity of Patient Care / Q000458:organization & administration*; D003299:Cooperative Behavior; D004739:England; D005260:Female; D058006:General Practice / Q000458:organization & administration; D006297:Health Services Accessibility / Q000458:organization & administration; D006301:Health Services Needs and Demand / Q000458:organization & administration; D017051:Hospice Care / Q000458:organization & administration; D006801:Humans; D033183:Interdisciplinary Communication; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D009723:Nurse-Patient Relations; D010348:Patient Care Team / Q000458:organization & administration; D017060:Patient Satisfaction; D010817:Physician-Patient Relations; D011446:Prospective Studies; D036301:Qualitative Research; D013727:Terminal Care / Q000458:organization & administration*; D028761:Withholding Treatment
keywords: Palliative; Qualitative