Experiences of using an Environmental Control System (ECS) for persons with high cervical spinal cord injury: the interplay between hassle and engagement

Abstract

Purpose: Environmental Control Systems (ECS) have many benefits; however studies of personal experience of ECS use are scarce. This qualitative study explored the insiders' experience of using an ECS.

Method: An ECS starter-pack was compiled and trialled for an eight-week period with six persons with high spinal cord injuries (SCI) living in Ireland. Semi-structured interviews were subsequently completed with each person and analysed using Interpretative Phenomenological Analysis (IPA).

Findings: Two major themes emerged: "Taking back a little of what has been lost", and "Getting used to ECS" which is the focus of the current paper. This theme captured a dynamic interplay between the experience of "hassle" and "engagement" for new users of ECS. "Hassle" resulted from technological frustrations and the challenge of breaking familiar habits, while "Engagement" resulted from feeling good, having fun and being surprised.

Conclusions: The complex interweaving of hassle and engagement experienced by new ECS users reflects the clinical experience of rehabilitation providers. The importance of overcoming initial hassle needs to be understood by clinicians and users in order to maximise the potential benefit of ECS. Non-use must be considered one reasonable outcome if based on realistic ECS trials.