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.

KEYWORDS:

• Emotional Well-being
• severe motor impairment
• severe communication impairment
• disabilities
• child
• youth

Acknowledgments

The authors would like to acknowledge the support from the members of The Everything that Counts Research Lab, The Building and Designing Assistive Technology (BDAT) Lab, and the primary author’s institution.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The Ontario Child Health Support Unit through OSSU (the Ontario SPOR [Strategy for Patient-Oriented Research] SUPPORT [Support for People and Patient-Oriented Research and Trials] Unit), Queen’s University VP Research Office Wicked Ideas Award, NSERC [RGPIN-2016- 04669] Natural Sciences and Engineering Research Council of Canada; The Ontario Graduate Scholarship.