SELF-EXPRESSION, CONCEPTUALIZATION, AND RECREATED EXPERIENCES OF THE EMOTIONAL WELL-BEING OF CHILDREN AND YOUTH WITH SEVERE MOTOR AND COMMUNICATION IMPAIRMENT
Children/youth with severe motor and communication impairment (SMCI) have difficulty communicating through speech, writing with a paper and pencil, or using a standard computer keyboard. Children/youth with SMCI are easily overlooked or misunderstood by unfamiliar people; primarily use a mobility aid; and have difficulty handling objects. Often, their emotional needs, responses, and messages can be missed or overlooked by peers and caregivers who do not know them, creating a profound risk of social isolation. A conceptual basis for studying the emotional wellbeing specific to this group of children/youth is missing from the literature. This dissertation is focused on advancing the knowledge about emotional well-being for children/youth with SCMI. The dissertation consists of three manuscripts i) a systematic review exploring methods of direct assessment of emotional well-being information from children/youth with SMCI, ii) a conceptualization of emotional well-being specific to children/youth with SMCI, and iii) a qualitative method for “recreating experiences” of individuals whose experiences are difficult to capture by self-report due to profound motor, communication, and/or cognitive impairments. The research supporting the three manuscripts was undertaken as follows. First, the systematic review was conducted through searches of six academic databases, informed by keywords under the following areas: i) population, ii) assessment methods, and iii) target information. The systematic review identified that children/youth with SMCI rarely use high-technology communication methods to self-express emotional well-being information, and this occurs in limited single contexts. Next, primary guardians of children/youth with SMCI were involved in photo/video data collection. Qualitative interviews were conducted with primary guardians and other familiar people to understand emotional experiences of children/youth. A conceptualization of emotional well-being for children/youth with SMCI was developed consisting of nine themes grouped into four domains. Finally, findings from the qualitative work brought forth a novel method which is described by three axes: i) informants, ii) data collection strategies, and iii) analyses and reflexivity. The “recreated experiences” method was developed to provide a toolkit for disability researchers. This dissertation emphasized the unique components of emotional well-being for this group and the importance of familiar persons’ knowledge. Findings illustrate the personal characteristics of children/youth with SMCI which can enhance opportunities for meaningful care, social relationships, and involvement in research.