Ana Martins1, Susie Aldiss2, Faith Gibson3. 1. University College London Hospitals NHS Foundation Trust, London, UKUCLH Cancer Clinical Trials Unit, 1(st) Floor East, 250 Euston Road, London, NW1 2PG, UK. 2. School of Health Sciences, Faculty of Health & Medical Sciences, Duke of Kent Building, University of Surrey, Guildford, Surrey, GU2 7XH, UK. 3. Centre for Outcomes and Experience Research in Children's Health, Illness and Disability (ORCHID), Great Ormond Street Hospital for Children NHS Foundation Trust and University of Surrey, School of Health Sciences, Faculty of Health & Medical Sciences, Duke of Kent Building, University of Surrey, Guildford, Surrey, GU2 7XH, UK. Electronic address: faith.gibson@gosh.nhs.uk.
Abstract
PURPOSE: To describe the development and implementation of the specialist nurse key worker role across 18 children's cancer centres in the United Kingdom, and draw out significant factors for success to inform future development of the role across a range of specialities. METHOD: Data were obtained through 42 semi-structured interviews and a focus group with 12 key workers. Framework analysis revealed two main themes: models of care and key workers' perspectives of the role. RESULTS: Four models of care were identified and described, roles were organised along a continuum of in reach and outreach with either the presence or absence of home visits and direct delivery of clinical care. Key workers' perspectives of the advantages of the role included: coordination of care (being the main point of contact for families/professionals), experience and expertise (communication/information) and the relationship with families. The main challenges identified were: time, caseload size, geographical area covered, staffing numbers and resources available in the hospital and community. CONCLUSION: The label 'key worker' was disliked by many participants, as the loss of 'specialist nurse' in the title failed to reflect professional group. Leaving aside terminology, key workers shared core role elements within a continuum of in reach and outreach work and their involvement in direct clinical care varied throughout the pathway. Irrespective of the model they worked in, the key worker provided clinical, emotional, educational, and practical support to families, through the coordination of care, experience and expertise and relationship with families and professionals.
PURPOSE: To describe the development and implementation of the specialist nurse key worker role across 18 children's cancer centres in the United Kingdom, and draw out significant factors for success to inform future development of the role across a range of specialities. METHOD: Data were obtained through 42 semi-structured interviews and a focus group with 12 key workers. Framework analysis revealed two main themes: models of care and key workers' perspectives of the role. RESULTS: Four models of care were identified and described, roles were organised along a continuum of in reach and outreach with either the presence or absence of home visits and direct delivery of clinical care. Key workers' perspectives of the advantages of the role included: coordination of care (being the main point of contact for families/professionals), experience and expertise (communication/information) and the relationship with families. The main challenges identified were: time, caseload size, geographical area covered, staffing numbers and resources available in the hospital and community. CONCLUSION: The label 'key worker' was disliked by many participants, as the loss of 'specialist nurse' in the title failed to reflect professional group. Leaving aside terminology, key workers shared core role elements within a continuum of in reach and outreach work and their involvement in direct clinical care varied throughout the pathway. Irrespective of the model they worked in, the key worker provided clinical, emotional, educational, and practical support to families, through the coordination of care, experience and expertise and relationship with families and professionals.