Taking back a little of what you have lost: the meaning of using an Environmental Control System (ECS) for people with high cervical spinal cord injury

Abstract

Purpose: Assistive technologies have deep and personal meanings for people with disabilities. This study sought to provide an in-depth exploration of the subjective meaning of Environmental Control System (ECS) use for people with high cervical spinal cord injury.

Materials and method: Interpretative Phenomenological Analysis (IPA) was used to explore the personal meaning of ECS. In-depth interviews with five participants were analyzed according to recommended IPA guidelines to produce a rich phenomenological account of lived experience.

Results: This study identified two overarching themes, one of which was the subject of an earlier publication. This paper focuses on the second theme “taking back a little of what you have lost” and its two main components “reclaiming a little doing” and “feeling enabled”. Doing everyday things, being less dependent on others and feeling safer and less needy all contributed to participants experience of regaining something important of what had been lost.

Conclusions: A nuanced range of meanings, demonstrating how “a little can mean a lot” emerged from this study. For those with high cervical spinal cord injury, “reclaiming a little doing” resulted in subtle, but subjectively significant, improvements in identity, relationships and well-being, while “feeling enabled” was both enjoyable and empowering and led to an increased sense of safety and reduced neediness. The potentially powerful impact on individuals with life-altering injuries of reclaiming a little of what they had lost, supports the value of more widespread access to and provision of ECS.

Implications for rehabilitation

• While ECS use produces only a “little” objective change in activity levels, it subjectively means “a lot” to people with high level injuries.

• ECS enable people to “do” everyday things as well help in supporting them to “feel” less dependent and needy.

• Using ECS facilitates much more than functional tasks and a sense of security. It helps promote positive self-perception and continuity of being.

• It is important for those with high cervical spinal cord injuries to have access to ECS to ensure they can enjoy both psychological and physical benefits.

Keywords:

• Electronic assistive technology (EAT)
• electronic aids to daily living (EADL); occupational therapy
• qualitative inquiry
• Interpretative Phenomenological Analysis (IPA)
• environmental control units (ECU)

Acknowledgements

This study would not have been possible without the generosity of the research participants who gave time and hospitality to the researcher. We would also like to thank Spinal Injuries Ireland for their invaluable assistance; Dr Jacinta McElligott, consultant in rehabilitation medicine, for her support during this study, Elizabeth Steggles for her wise help and feedback during the data analysis process, and also to Heather Scott and Dr Ann Kennedy-Behr for insightful editorial comment.

Disclosure statement

The authors report no conflicts of interest.

Additional information

Funding

This research was supported by the Health Research Board, Ireland through a research fellowship for clinical therapies (CTFP-06–15).