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

Introduction Besides affecting physical health, Oropharyngeal Dysphagia (OD) entails limitations in daily activities and social participation for both patients and their informal caregivers. OD-related needs were however seldom investigated, despite their relevance for developing effective interventions. A useful tool to categorize disease-related needs and design service delivery is the Supportive Care Framework (SCF), implemented in relation to various pathological conditions, but never to OD. Aim of this study was thus to map the supportive care needs of adults with OD and their informal caregivers, and to classify them through the SCF. Material and methods A scoping review was conducted to identify studies investigating the needs of patients with OD and their caregivers, using five electronic databases (PubMed, Embase, PsycINFO, Wiley Cochrane Library, Cinahl) and reference list searching. Two independent raters assessed studies' eligibility and extracted data; a third rater was involved in conflict resolution. A Best fit framework synthesis approach was used to report the findings. Results The search identified 2370 records; 12 studies (11 qualitative and 1 quantitative) were included in the review (Figure 1). Only 3 studies addressed caregivers' perspective. Based on SCF, psychological and informational needs were primarily quoted, together accounting for 55% of patients' and caregivers' answers, whereas practical, social and physical needs were less represented. Only patients reported emotional needs, while spiritual needs were not cited. Conclusions There is a dearth of research on the care needs of patients with OD and their caregivers. The few studies addressing this topic have identified personal and social needs besides physical ones, thus highlighting the manifold impact of OD. More comprehensive studies are required in this domain, in order to design interventions effectively targeting patients' and caregivers' needs.