Emotional Well-Being of Children and Youth with Severe Motor and Communication Impairment: A Conceptual Understanding

Abstract

Background: Children and youth with severe motor and communication impairment (SMCI) have difficulty providing self-expression through typical speech, writing with a paper and pencil, or using a standard keyboard. Their emotional expressions can be missed by peers and novel caregivers. Purpose: To describe the indicators and components of emotional experiences for children/youth with SMCI. Methods: Primary guardians of nine children/youth with SMCI were involved in photo/video data collection and follow-up qualitative interviews. Twenty-one familiar people (e.g., friends, family members, and/or care team) participated in semi-structured qualitative interviews. Results: A conceptual understanding of emotional well-being specific to the population has been developed consisting of nine themes, encompassed by four domains i) Core Attributes, ii) Personal Experiences, iii) Surroundings, iv) Expression and Reception. Conclusions: Emotional experiences of children/youth with SMCI are diversely expressed. Primary guardian and familiar person insight can be amplified to positively impact care and participation.