The Sound Access Parent Outcomes Instrument (SAPOI): Construction of a new instrument for children with severe multiple disabilities who use cochlear implants or hearing aids

Abstract

Objective: To report on the Phase 2 development of the Sound Access Parent Outcomes Instrument (SAPOI), a new instrument focused on formalizing outcomes that parents of children with severe multiple disabilities (SMD) who use amplification prioritize as important.

Methods: Phase 2 of this project involved item selection and refinement of the SAPOI based on (a) Phase 1 study participant input, (b) clinical specialist feedback, and (c) test–retest instrument reliability. Phase 1 participant responses were utilized to construct a draft version of the SAPOI. Next, clinical specialists examined the instrument for content validity and utility and instrument reliability was examined through a test–retest process with parents of children with SMD.

Results: The draft SAPOI was constructed based on Phase 1 participant input. Clinical specialists supported content validity and utility of the instrument and the inclusion of 19 additional items across four categories, namely Child Affect, Child Interaction, Parent Well-being, and Child's Device Use. The SAPOI was completed twice at one-month intervals by parents of children with SMD to examine instrument reliability across the four categories (Child Affect, Child Interaction, Parent Well-being, and Child's Device Use). Instrument reliability was strong-to-excellent across all four sections.

Discussion: The SAPOI shows promise as a much-needed addition to the assessment battery currently used for children with SMD who use cochlear implants and hearing aids. It provides valuable information regarding outcomes resulting from access to sound in this population that currently used assessments do not identify.

Keywords:

• Complex cases
• Cochlear implantation
• Outcomes
• Amplification
• Parent outcome priorities
• Deaf children
• Pediatric

Acknowledgments

The authors also gratefully acknowledge the support of the Glenrose Rehabilitation Hospital and Alberta Health Services. We owe profound gratitude to the participants and clinical specialists in this study, who gave unstintingly of their time and wisdom.

Disclaimer statements

Contributors D.V.H. and K.R. conducted study and wrote manuscript (D.V.H and K.R. primary authors of manuscript). A.M and S.V.: statistical analysis and data entry (A.M. manuscript contribution).

Conflict of interest There are no conflict-of-interest.

Ethics approval Ethical Approval was obtained from the University of Alberta (Research Ethics & Management Online) Pro00038960.

Additional information

Funding

This research was funded by a grant to the first two authors from the Glenrose Hospital Foundation.