RESUMEN
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.
Asunto(s)
Médula Cervical/lesiones , Personas con Discapacidad/rehabilitación , Dispositivos de Autoayuda , Traumatismos de la Médula Espinal/rehabilitación , Adulto , Costos y Análisis de Costo , Femenino , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Satisfacción del Paciente , Factores de Tiempo , Interfaz Usuario-ComputadorRESUMEN
BACKGROUND: Environmental control systems (ECS) are devices that enable people with severe physical limitations to independently control household appliances. Recent advancements in the area of environmental control technology have led to the development of ECS that can be controlled through mainstream smart-devices. There is limited research on ECS within Australia and no known research addressing smart-device ECS. The current study sought to explore users' experiences with smart-device ECS within Australia. METHODS: The study followed a single embedded case study method. Participants (n = 5) were existing ECS users with a cervical spinal cord injury. Data were collected through semi-structured interviews with participants, reflexive journals and field notes. An inductive approach was used to analyze the data thematically. RESULTS AND CONCLUSIONS: The experience of using a smart-device ECS presented both opportunities and costs to users. The opportunities included: independent control, choice, peace of mind, connection, effective resource use, and control over smart-phone functions and applications. The associated costs included: financial, time, frustration, and technical limitations. While findings are similar to previous research into traditional ECS this study indicates that smart-device ECS also offered a new opportunity for users to access mainstream smart-device functions and applications. Future research should investigate methods and resources that practitioners could utilize to better support new users of smart-device ECS. Implications for Rehabilitation As with traditional environmental control systems, users of smart environmental control systems report increased independence, choice and control. Smart-device environmental control systems provide users with access to mainstream smart-device functions and applications, which facilitate connection to family and the outside world. The costs to the user of smart-device environmental control systems include monetary and time investment, dealing with technical limitations and resulting frustration. Prescribers and installers must consider ways to mitigate these costs experienced by users.