MacDonald Kath, Irvine Lindesay, Smith Margaret Coulter
Division of Nursing, Queen Margaret University, Musselburgh, UK.
J Clin Nurs. 2015 Dec;24(23-24):3528-37. doi: 10.1111/jocn.13021. Epub 2015 Oct 14.
To explore how young 'expert patients' living with Cystic Fibrosis and the healthcare professionals with whom they interact perceive partnership and negotiate care.
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.
A qualitative exploratory design informed by Interpretivism and Symbolic Interactionism was conducted.
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.
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.
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.
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.
探讨患有囊性纤维化的年轻“专家型患者”以及与他们互动的医护人员如何看待伙伴关系并协商护理事宜。
现代医疗政策鼓励针对长期疾病建立伙伴关系、患者参与及自我管理。这一理念与囊性纤维化患者护理所采用的模式相一致，在该模式中，自我管理、信任和相互尊重被视为持续的患者/专业人员关系发展的不可或缺的因素。自我管理与“专家型患者”这一术语相关联；“专家型患者”是指患有长期疾病的个体，其知识和技能受到重视，并与医护人员合作使用。然而，“专家型患者”这一术语在文献中存在争议，其使用动机以及该术语中隐含的假设也备受争议。
采用基于解释主义和符号互动主义的定性探索性设计。
观察了34次会诊，并对10名患者、2名护理人员和12名医护人员进行了23次半结构化访谈。使用基于矩阵的定性数据分析方法“框架”的五个阶段对数据进行主题分析，并进行同行评审和受访者验证。该研究获得了全面的伦理批准。
出现了三个主要主题；伙伴关系的体验、专家型患者的属性和疾病的建构。呈现了“诊所的仪式秩序”、关系中的协商与信任以及对专家型患者的看法等子主题。
会诊模式可能是以人为本护理的障碍。医护人员在协商中表现出宽容，但并不总是相信患者的陈述。“专家型患者”这一术语不受欢迎且仍存在争议。
深入了解促进或阻碍伙伴关系的结构和过程，可促成服务重新设计的协作方法以及会诊模式的修订。
