The care needs of persons with oropharyngeal dysphagia and their informal caregivers: A scoping review

Abstract

Introduction 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. Aims 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. Methods 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. Results 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. Conclusions 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.

Behavioural Interventions in People with Oropharyngeal Dysphagia: A Systematic Review and Meta-Analysis of Randomised Clinical Trials

“…In total, 37 behavioural RCTs in OD were identified. Considering the high prevalence [3] and severe impact of OD on health [57], quality of life [5,58], and health-economics [59], the limited number of high-level evidence studies is concerning. RCTs are costly and usually require extensive funding [60].…”

Surveying the International Prevalence and Nature of Eating, Drinking and Swallowing Difficulties in Adults Presenting with Fibromyalgia

“…Dysphagia is the inability to swallow or feeling that solids or liquids do not pass effortlessly from the mouth to the stomach [7]. The prevalence of dysphagia can vary but generally ranges between 2 and 20% of the general population among available research studies [8]. In non-fibromyalgiaspecific populations, dysphagia often results from illnesses such as cerebrovascular diseases, progressive disorders, trauma, infection or surgery to the oral cavity, pharynx or oesophagus, among others [9].…”

“…In non-fibromyalgiaspecific populations, dysphagia often results from illnesses such as cerebrovascular diseases, progressive disorders, trauma, infection or surgery to the oral cavity, pharynx or oesophagus, among others [9]. Dysphagia can lead to serious health consequences when unmanaged, including airway obstructions, malnutrition, pneumonia, increased and prolonged hospitalisations, resulting in a reduction in quality of life and increased financial burdens [8]. Dysphagia also can lead to social and emotional changes, depression and social isolation and have a significant impact on oral medication administration ( [7] [10]).…”

Study on dysphagia from 2012 to 2021: A bibliometric analysis via CiteSpace

“…Psychological research highlights that swallowing disorders impart psychological burdens to patients causing anxiety and depression and increasing their visceral sensitivity ( 11 ). The increased physical, social, and psychological needs of patients with dysphagia further burden the caregivers ( 12 ).…”