Mcewan Kathryn, Clarke Amanda, Dalkin Sonia, Hand Annette
University of Northumbria at Newcastle, Newcastle upon Tyne, England.
Newcastle Hospitals NHS Foundation Trust, Newcastle upon Tyne, England.
BMC Nurs. 2024 Oct 28;23(1):791. doi: 10.1186/s12912-024-02441-7.
Where available, Parkinson's Nurse Specialists (PNS) provide a range of care, support, guidance, and advocacy for people with Parkinson's (PwP), and, where appropriate, their care partners (CP). Parkinson's is a complex and progressive condition. Consequently, evaluating health outcomes is not a reliable method to understand the value and impact of PNS. Previous research has identified PNS can improve the subjective well-being of PwP in the community, also that barriers to care include heavy caseloads and a lack of time. Yet little is known about the value of the role of the PNS, particularly about the impact of pharmacological management and review. This research aims to close this research gap by providing explanatory theories of the impact and value of PNS to PwP, their CP, and other professionals.
A social constructivist grounded theory approach was used. Semi-structured interviews were conducted with three groups, PNS, PwP, and CP. Interviews were analysed using NVivo for coding and categorising and Word for memo-writing. Data was analysed inductively and iteratively to identify contexts, social processes, actions, and behaviours, before final emergent theories were identified.
46 semi-structured interviews (PNS 18, PwP 19, CP 9) led to four data categories and 13 sub-categories that delineated PNS value. (1) Expert Counsel; provision of emotional support, education, and lifestyle guidance; CP inclusion; provision from diagnosis; and across all stages of Parkinson's. (2) Conduit of Care; signposting, referral, and connection to PwP, CP, others; PNS barriers and facilitators; (3) Team/Partnership; continuity and partnership, 'working together'; (4) Pharmacological Support, PNS prescribing; concordance; speed of treatment. Where PNS were accessible they could offer personalised support and partnership, so providing person-centred care that improves health and well-being.
Where a PNS is accessible due to service availability and manageable caseloads, to provide person-centred care, they deliver several benefits to PwP and CP which improve health and perceived well-being. Where PNS are not available, PwP and CP often struggle to manage their Parkinson's with negative impacts on health and well-being.
在可行的情况下，帕金森病专科护士（PNS）为帕金森病患者（PwP）及其护理伙伴（CP）（如适用）提供一系列护理、支持、指导和宣传服务。帕金森病是一种复杂的进行性疾病。因此，评估健康结果并非理解PNS的价值和影响的可靠方法。先前的研究表明，PNS可以改善社区中PwP的主观幸福感，同时也指出护理障碍包括工作量大以及时间不足。然而，对于PNS角色的价值，尤其是药物管理和评估的影响，人们知之甚少。本研究旨在通过提供关于PNS对PwP及其CP以及其他专业人员的影响和价值的解释性理论来填补这一研究空白。
采用社会建构主义扎根理论方法。对PNS、PwP和CP三组进行了半结构化访谈。使用NVivo进行编码和分类，使用Word进行备忘录撰写来分析访谈内容。在确定最终的涌现理论之前，对数据进行归纳和迭代分析，以识别背景、社会过程、行动和行为。
46次半结构化访谈（PNS 18次、PwP 19次、CP 9次）产生了四个数据类别和13个子类别，这些类别界定了PNS的价值。（1）专家咨询；提供情感支持、教育和生活方式指导；纳入护理伙伴；从诊断开始提供；以及贯穿帕金森病的所有阶段。（2）护理渠道；为PwP、CP和其他人提供指引、转诊和联系；PNS的障碍和促进因素；（3）团队/伙伴关系；连续性和伙伴关系，“共同协作”；（4）药物支持，PNS开处方；一致性；治疗速度。在能够获得PNS服务的地方，他们可以提供个性化支持和伙伴关系，从而提供以患者为中心的护理，改善健康和幸福感。
由于服务可用性和可管理的工作量而能够获得PNS服务时，为了提供以患者为中心的护理，他们为PwP和CP带来了诸多益处，改善了健康和感知到的幸福感。在无法获得PNS服务的地方，PwP和CP往往难以应对帕金森病，对健康和幸福感产生负面影响。
