WS11.3 Improving communication between adults with cystic fibrosis and their CF physician

Hubert, D.; Lacarrière, C.; Panzo, R.; Toulorge, C.; Clavel, François; Veríssimo, David

doi:10.1016/s1569-1993(13)60066-1

Cited by 1 publication

(1 citation statement)

References 0 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…This is already happening in other CF clinics (Hubert et al . ), and revealed that YP do not always have the same priorities as HCPs, a finding consistent with this study. However, inherent in the patient‐centred model is an expectation that YP will take responsibility for illuminating those issues of central importance.…”

Section: Discussionsupporting

confidence: 90%

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

MacDonald

Irvine

Smith

2015

Journal of Clinical Nursing

View full text Add to dashboard Cite

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 matrixbased 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.

show abstract

Section: Discussionsupporting

confidence: 90%