title: An exploration of partnership through interactions between young 'expert' patients with cystic fibrosis and healthcare professionals.
abstract: OBJECTIVE
  To explore how young 'expert patients' living with Cystic Fibrosis and the healthcare professionals with whom they interact perceive partnership and negotiate care.
  
  
  BACKGROUND
  Modern healthcare policy encourages partnership, engagement and self-management of long-term conditions. This philosophy is congruent with the model adopted in the care of those with Cystic Fibrosis, where self-management, trust and mutual respect are perceived to be integral to the development of the ongoing patient/professional relationship. Self-management is associated with the term; 'expert patient'; an individual with a long-term condition whose knowledge and skills are valued and used in partnership with healthcare professionals. However, the term 'expert patient' is debated in the literature as are the motivation for its use and the assumptions implicit in the term.
  
  
  METHODS
  A qualitative exploratory design informed by Interpretivism and Symbolic Interactionism was conducted.
  
  
  METHODS
  Thirty-four consultations were observed and 23 semi-structured interviews conducted between 10 patients, 2 carers and 12 healthcare professionals. Data were analysed thematically using the five stages of 'Framework' a matrix-based qualitative data analysis approach and were subject to peer review and respondent validation. The study received full ethical approval.
  
  
  RESULTS
  Three main themes emerged; experiences of partnership, attributes of the expert patient and constructions of illness. Sub-themes of the 'ceremonial order of the clinic', negotiation and trust in relationships and perceptions of the expert patient are presented.
  
  
  CONCLUSIONS
  The model of consultation may be a barrier to person-centred care. Healthcare professionals show leniency in negotiations, but do not always trust patients' accounts. The term 'expert patient' is unpopular and remains contested.
  
  
  CONCLUSIONS
  Gaining insight into structures and processes that enable or inhibit partnership can lead to a collaborative approach to service redesign and a revision of the consultation model.
authors.affiliation: Division of Nursing, Queen Margaret University, Musselburgh, UK.
authors.forename: Kath
authors.initials: K
authors.lastname: MacDonald
authors.affiliation: Division of Nursing, Queen Margaret University, Musselburgh, UK.
authors.forename: Lindesay
authors.initials: L
authors.lastname: Irvine
authors.affiliation: Division of Nursing, Queen Margaret University, Musselburgh, UK.
authors.forename: Margaret Coulter
authors.initials: MC
authors.lastname: Smith
mesh_terms: D000328:Adult; D001291:Attitude of Health Personnel; D003299:Cooperative Behavior; D003550:Cystic Fibrosis / Q000523:psychology* / Q000628:therapy*; D005260:Female; D006801:Humans; D008297:Male; D011369:Professional-Patient Relations; D012017:Referral and Consultation; D012648:Self Care; D011795:Surveys and Questionnaires; D035502:Trust; D055815:Young Adult
keywords: adolescence; chronic illness; partnership; patient experience