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An exploration of partnership through interactions between young ‘expert’ patients with cystic fibrosis and healthcare professionals

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  • Kath MacDonald
  • Lindesay Irvine
  • Margaret Coulter Smith

Abstract

Aims and objectives 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. Design 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. Relevance to clinical practice 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.

Suggested Citation

  • Kath MacDonald & Lindesay Irvine & Margaret Coulter Smith, 2015. "An exploration of partnership through interactions between young ‘expert’ patients with cystic fibrosis and healthcare professionals," Journal of Clinical Nursing, John Wiley & Sons, vol. 24(23-24), pages 3528-3537, December.
  • Handle: RePEc:wly:jocnur:v:24:y:2015:i:23-24:p:3528-3537
    DOI: 10.1111/jocn.13021
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    References listed on IDEAS

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    1. Gabe, Jonathan & Olumide, Gillian & Bury, Michael, 2004. "'It takes three to tango':: a framework for understanding patient partnership in paediatric clinics," Social Science & Medicine, Elsevier, vol. 59(5), pages 1071-1079, September.
    2. Pilnick, Alison & Dingwall, Robert, 2011. "On the remarkable persistence of asymmetry in doctor/patient interaction: A critical review," Social Science & Medicine, Elsevier, vol. 72(8), pages 1374-1382, April.
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    Cited by:

    1. Mary Bourke & Catherine Houghton, 2018. "Exploring the need for Transition Readiness Scales within cystic fibrosis services: A qualitative descriptive study," Journal of Clinical Nursing, John Wiley & Sons, vol. 27(13-14), pages 2814-2824, July.

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