Negotiating healthcare through partnership: An exploration of the perceived and observed factors that enable or inhibit partnership between young “expert” patients with Cystic Fibrosis and the Healthcare Professionals with whom they interact.

Abstract

Since the late eighties healthcare policy has seen a shift from a paternalistic model of care to that of an inclusive partnership approach which encourages engagement, responsibility and self-management of long term conditions. This paradigm shift has given credence to the notion of the “expert patient” (EP); an individual with a long-term condition whose knowledge and skills are valued and utilised in partnership with healthcare professionals. However, there is debate as to the definition of the EP, and an assumption that all patients would want to adopt this role and a partnership model of care. There is also scepticism about the motivation behind the introduction of the EP and the perceived benefits of EP Programmes. This study aimed to explore how young “expert patients” living with cystic fibrosis (CF) and the healthcare professionals (HCPs) with whom they interact perceive partnership and negotiate care. Adopting a qualitative methodological strategy, informed by Interpretivism and Symbolic Interactionism, thirty three consultations were observed between eight patients, two accompanied by a carer and twelve healthcare professionals (HCPs). Following the observed sessions the eight patients, two carers and eleven HCPs were interviewed. Data were analysed thematically using the five stages of “Framework” a matrix-based analysis approach. Three major themes emerged from the data: experiences of partnership, attributes of the expert patient and constructions of illness. Multiple sub themes are also presented, including the power of the nurses, normalcy, the expert patient as navigator and the ceremonial order of the clinic. Implications for practice suggest the need for ground rules outlining both parties’ roles and responsibilities in partnership, a remodelling of the clinic format to ensure patient- centredness and a consideration of the role of decision tools and Telehealth in any new proposed model.