The experiences and needs of people seeking palliative health care out-of-hours: a qualitative study

Professor of General Practice and Primary Care, Department of Primary Care, Peninsula College of Medicine andDentistry, St Luke’s Campus, University of Exeter, Exeter, UKAim: To explore the experiences of people with advanced cancer and/or their caregiversaccessing out-of-hours care. Background: The organisation and delivery of out-of-hours in the United Kingdom has undergone major reforms over the past threedecades culminating in the new General Medical Service contract in 2004. There areconcerns around continuity of care for patients with complex needs under the newarrangements. Design: A qualitative interview study was undertaken recruitingpatients from two primary care trusts in Southwest England. Semi-structured inter-views were conducted with 28 people with advanced cancer and/or their caregiverswho had recently requested out-of-hours care. Interviews were recorded, transcribedand analysed thematically. Findings: Two main themes were identified including thelegitimacy of seeking help and continuities of care. Most participants were reluctant toseek help, finding it difficult to decide whether their needs were sufficient to contactservices. The degree to which services legitimised participants’ requests mediatedtheir experiences. Distress arose when services were dismissive of their needs,whereas respondents were appreciative of clinicians who provided them with reas-surance. Participants reported a lack of relational and informational continuity of care.Consulting with an unfamiliar clinician out-of-hours raised doubts in some partici-pants’ minds about the quality of care. Some participants recounted episodes in whichthere were problems with pain management. While the themes suggest that thedelivery of out-of-hours care as a whole was not always perfect, around-the-clockaccess to professional sources of support and reassurance was highly valued. How-ever, the transfer of information to out-of-hours providers remains a key challenge;participants did not understand why out-of-hours providers could not access moreCorrespondence to: Dr Suzanne H. Richards, Department ofPrimary Care, Peninsula College of Medicine and DentistryUniversity of Exeter, Smeall Building, St Luke’s Campus,Magdalen Road, EX1 2LU, UK. Email: suzanne.richards@pms.ac.ukr Cambridge University Press 2011