Department of Pathophysiology and Transplantation, Università degli Studi di Milano, Milan, Italy.
Department of Biomedical and Clinical Sciences "Luigi Sacco", Università degli Studi di Milano, Milan, Italy.
PLoS One. 2021 Sep 23;16(9):e0257683. doi: 10.1371/journal.pone.0257683. eCollection 2021.
Besides affecting physical health, Oropharyngeal Dysphagia (OD) entails limitations in daily activities and social participation for both patients and their informal caregivers. The identification of OD-related needs is crucial for designing appropriate person-centered interventions.
To explore and map the literature investigating the care needs related to OD management of adult persons with OD and their informal caregivers during the last 20 years.
A scoping review was conducted and reported following PRISMA guidelines. Five electronic databases and reference lists of eligible publications were searched for original works in English or Italian, published between January 2000 and February 2021. Two independent raters assessed studies' eligibility and extracted data; a third rater resolved disagreements. Extracted care needs were analyzed using a Best fit framework synthesis approach.
Out of 2,534 records preliminarily identified, 15 studies were included in the review and 266 care needs were extracted. All studies were conducted in Western countries. Research methods primarily consisted of qualitative interviews and focus groups (14 studies, 93.3%); head and neck cancer was the most frequent cause of patients' dysphagia (8 studies, 53.3%); caregivers' perspective was seldom investigated (5 studies, 33.3%). Both patients and caregivers primarily reported social (N = 77; 28.9%) and practical (N = 67; 25.2%) needs, followed by informational (N = 55; 20.7%) and psychological (N = 54; 20.3%) ones. Only patients reported physical needs (N = 13; 4.9%), while spiritual needs were not cited.
The recurrence of personal and social needs besides physical ones highlighted the manifold impact of OD on patients' and caregivers' lives. Larger and more focused studies are required in order to design tools and interventions tailored to patients' and caregivers' needs.
口咽吞咽困难（OD）除了影响身体健康外，还会限制患者及其非专业照护者的日常活动和社会参与。识别与 OD 相关的需求对于设计以患者为中心的干预措施至关重要。
探索和绘制过去 20 年中，有关成人 OD 患者及其非专业照护者的 OD 管理相关需求的文献。
本研究采用 scoping 综述方法，并按照 PRISMA 指南进行报告。检索了五个电子数据库和合格文献的参考文献列表，以获取 2000 年 1 月至 2021 年 2 月期间发表的英文或意大利文原始作品。两名独立的评估员评估研究的合格性并提取数据；第三名评估员解决分歧。使用最佳拟合框架综合方法分析提取的护理需求。
在初步确定的 2534 条记录中，有 15 项研究纳入综述，共提取了 266 项护理需求。所有研究均在西方国家进行。研究方法主要包括定性访谈和焦点小组（14 项研究，93.3%）；头颈部癌症是患者吞咽困难的最常见原因（8 项研究，53.3%）；很少调查照护者的观点（5 项研究，33.3%）。患者和照护者主要报告社会（N=77；28.9%）和实际（N=67；25.2%）需求，其次是信息（N=55；20.7%）和心理（N=54；20.3%）需求。只有患者报告了身体需求（N=13；4.9%），而没有报告精神需求。
个人和社会需求的反复出现，除了身体需求外，突出了 OD 对患者和照护者生活的多方面影响。需要进行更大规模和更有针对性的研究，以设计针对患者和照护者需求的工具和干预措施。
