Oral health issues of young adults with severe intellectual and developmental disabilities and caregiver burdens: a qualitative study

Jihyun Lee,Juhea Chang

doi:10.1186/s12903-021-01896-3

Abstract

BackgroundOral health maintenance is difficult to be achieved alone by patients with special needs and insufficient self-care skills. This study aims to investigate how the oral health issues of young adults with severe intellectual and developmental disabilities (IDD) affect caregiver burdens.MethodsA qualitative research method was employed with semi-structured interviews conducted with 14 maternal caregivers of patients with severe IDD. Eleven young adults had neurofunctional disorders and three had autism spectrum disorders. All recorded data were transcribed verbatim and subjected to thematic analysis.ResultsThree themes emerged from the main agenda: predisposing oral dysfunction, home care challenges, and professional treatment barriers. The severity of the disabilities had an impact on oral disease risks that increased as patients aged. Participants indicated that, among the daily living activities of their patients, toothbrushing was a particular hardship due to their dysphagia and behavioral issues. Factors impacting on dental treatment indicated by caregivers included social, emotional, and financial circumstances.ConclusionsDysphagia and behavioral issues of adult patients with severe IDD contributed to caregiver burdens in the dental care of the patients. Caregiver burdens and barriers to treatment were mutual factors hindering adequate interventions in dealing with dental problems of the patients.

Highlights

Oral health maintenance is difficult to be achieved alone by patients with special needs and insufficient self-care skills
A vast majority of studies of oral health related proxy-reports have been focused on parental caregivers of young children [4,5,6], but rarely on those of adult children, it is their dental problems that become complicated over time
The aims of this study are: to explore the oral health issues of young adults with severe intellectual and developmental disabilities (IDD) experienced through their maternal caregivers and identify the key factors that intensify the burdens on the caregivers in the maintenance of patients’ oral health

Summary

Introduction

Oral health maintenance is difficult to be achieved alone by patients with special needs and insufficient self-care skills. This study aims to investigate how the oral health issues of young adults with severe intellectual and developmental disabilities (IDD) affect caregiver burdens. Persons with severe to profound intellectual and developmental disorders (IDD) need supervision in social settings and help with self-care activities [1]. These individuals have limited ability to communicate and often have physical limitations. A vast majority of studies of oral health related proxy-reports have been focused on parental caregivers of young children [4,5,6], but rarely on those of adult children, it is their dental problems that become complicated over time. A previous study demonstrated that edentulousness of adults with intellectual disabilities (ID) was prevalent compared to their nondisabled counterparts (31% vs. 3% in 25–44 yrs) and those with more severe degrees of IDs showed even higher incidence [7]

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Discussion

Conclusion