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.

Implications for Rehabilitation

• People with high cervical SCI find ECS use to be engaging, enjoyable, and fun.

• Successful engagement with ECS involves overcoming “hassle”.

• For some, ECS may be too much hassle resulting in non-use. However, it is important that non-use is not necessarily considered a failure, provided it is based on real experience and well-informed choice.

• Realistic trials need to be made available early in rehabilitation in order to facilitate the establishment of ECS use as a habit.

• Electronic aids to daily living (EADL)
• electronic assertive technology
• environmental control units (ECU)
• interpretative phenomenological analysis (IPA)
• occupational therapy
• quadriplegia
• qualitative inquiry
• tetraplegia

Acknowledgements

We would like to thank: all the participants for welcoming the researcher into their homes and giving so generously of their time, without their knowledge, views and tenacity this study would not have been possible; Siobhan McMahon and Rosie Gowran for their valuable editorial support; Spinal Injuries Ireland for their assistance; and Dr Jacinta McElligott, Consultant in Rehabilitation Medicine, National Rehabilitation Hospital, for her support.

Notes

¹The term EADL has been endorsed by its inclusion in a foundational assistive technology text [4].

²KEO is the dynamic display ECS controller used in the starter-pack.

³‘Messing’ is a colloquial phrase used that stems from the English expression to mess around/about defined by the Oxford English dictionary as: “behave in a silly or playful way or spend time doing something in a pleasantly desultory way: messing about in boats” [42].

⁴Flow occurs when an activity is all-encompassing and one becomes fully engaged in doing that activity.