Driving to Learn in a Powered Wheelchair: The Process of Learning Joystick Use in People With Profound Cognitive Disabilities

Participants

Study participants consisted of children and adults with PCD, a reference group of typically developing infants, a reference group of children and adults with lesser degrees of cognitive disability, and facilitators.

Forty-five children and adults with PCD were included progressively in the project over a 12-yr period. The age at inclusion was between 12 mo and 52 yr, distributed as follows: 14 preschool children (1–6 yr), 18 schoolchildren (7–20 yr), and 13 adults (21–52 yr). Length of participation varied from 1 mo to >6 yr: 9 participated <1 yr, 11 participated between 1 and 2 yr, and 25 participated for >2 yr. At the time they entered the project, 40 participants were assessed as having PCD. Five participants were younger than 2 yr but were assessed to be at high risk of developing PCD. The 45 participants were nonverbal and had, in addition to their cognitive disabilities, combinations of physical disabilities, sensory impairments, and health problems.

A reference group of 17 typically developing infants aged 3–12 mo was formed 5 yr after the project started. Data from participants with PCD were difficult to interpret and sort into a pattern. Infant development is well researched; thus, infant performance provided a stable framework for comparison. We compared observations of how the infants used a joystick (Nilsson & Nyberg, 1998) with indicators of achievement in joystick use of the participants with PCD.

Later in the project, 64 participants between ages 16 mo and 86 years with lesser degrees of cognitive disability formed another reference group (Nilsson, 2007). They were recruited via the pediatric rehabilitation clinic (6), special schools (20), day centers for adults with developmental disabilities (12), and primary health day care centers (26). Thirty-six of the participants had diagnoses of mental retardation, neurodevelopmental disabilities, or both, and 28 had diagnoses of stroke, brain tumor, traumatic brain injury, or dementia. Twenty-four participants were able to walk with or without assistive devices. Project findings indicated that practice in a powered wheelchair can benefit people with lesser degrees of cognitive disability and walking ability. We compared observations of this group with observations of participants with PCD and indicators of achievements in joystick use.

Lisbeth Nilsson—referred to in this article as the researcher—and parents, siblings, other relatives, personal assistants, day care staff, occupational therapists, physical therapists, teachers, and teaching assistants shared the role of facilitator. As facilitators, they modulated their interaction to nurture the participant’s curiosity and drive to act on and act with the joystick to explore its function and use. None of the facilitators was employed by the research project; some attended as relatives, and others attended as part of their regular work. The researcher continuously tutored the other facilitators in data collection and the emerging method during repeated follow-up visits or through telephone contacts.

Joystick-Operated Powered Wheelchairs

The powered wheelchairs were fitted with specially programmed proportional joysticks. Each wheelchair had a transparent tray with a semicircular recess for the upper body that was attached to the armrests. The control box was mounted in the center of the tray about 5–7 cm from the semicircular recess for the upper body, and only the joystick was above the surface of the tray. The central placement of the joystick close to the body positioned hand movements in midline of the body. This position made accidental activation more likely and gave the participants the choice to use the joystick with both hands. The tray supported the participants’ forearms and offered stabilization of their trunk and head. Protection of the participants was provided by specific programming of the joystick and the use of mechanical buffers. Findings regarding the characteristics of an appropriate powered wheelchair are more thoroughly described and explained in Nilsson and Eklund (2006).

Procedures

The procedures emerged slowly as the researcher’s insights grew through explorative interaction with the participants, reading of literature from many fields, and constant comparisons of data. It was an iterative process that gradually developed as an increasing number of participants and facilitators became involved in the project.

The participants practiced free driving in the powered wheelchair, and the facilitators used the constantly developing strategies to stimulate each participant’s curiosity, mutual interaction, and initiative to explore and experiment with joystick and powered wheelchair functions.

Collection and Analysis of Data

Data collection involved videotaping sessions with the participants with PCD supplemented by taking field notes and conducting open interviews with facilitators and other people acquainted with the participants. The videotapes were frequently made with a wide-angle camera lens mounted on a tripod and placed to give the best possible view of the location. The recordings were continuous and of the same length as the session. If a participant grew more conscious of the steering pattern and used a wider environment for driving, a handheld video camera was used, and the recordings became shorter than the length of the session. Approximately 390 sessions were videotaped, providing a total of 280 hr of videos for analysis.

All facilitators made field notes on their observations of changes in participants’ reactions, behaviors, or activities during the sessions. Additionally, the researcher wrote field notes on utterances, comments, reflections, and reactions by facilitators and other people within the participants’ social context.

The open interviews with the facilitators and other people acquainted with the participants focused on their view of the participants’ experiences during practice, their own experiences of being facilitators, and whether they could recognize any changes in the participants’ behavior over time.

Growing Awareness of Facilitating Strategies

Awareness of which strategies facilitated joystick use grew slowly as the researcher practiced with more participants, cooperated with more facilitators, and engaged in constant comparisons of data. The facilitating strategies were distinguished in parallel with the emerging understanding of the achievement patterns. The researcher identified the following strategies as most important for nurturing participant attainments:

The facilitator’s level of knowledge and the participant’s degree of cognitive disability, current state, and needs influenced the choice, order, and combinations of strategies used in a session. The facilitators’ gradually growing consciousness of facilitating strategies was associated with an increasing ability to differentiate the participants’ individual needs for interaction.

Mutual Interactions Among Actors in the Process

Mutual interactions between the researcher and other facilitators took place in the continuous exploration of possible facilitating strategies and in experimentation to determine what stimulated the participants’ attainments. The interrelationships the facilitators discovered between the facilitating strategies and the participants’ achievement patterns assisted in the development of mutual interactions between facilitators and participants. It was a strongly motivating experience for the facilitators to grow conscious of how they could stimulate the participants to attain small achievements. This consciousness made the facilitators more engaged and interested in investing time and energy in the practice. By becoming more attuned to recognizing the participants’ achievements, the facilitators grew more conscious of the strategies’ potential and of their own abilities to facilitate the participants’ growing consciousness. Facilitators observed that the successes achieved using the strategies during practice sessions positively influenced their expectations of the participants’ progress. The facilitators also articulated that successful experiences during practice sessions influenced their approaches to and attitudes toward interaction with the participants in other activities.

Growing Consciousness of Joystick Use

The facilitators’ increased awareness of facilitating strategies led to demonstrations by the participants of increasingly complex attainments in joystick use. The participants’ patterns of achievements, ranging from very simple to more complex, showed in their emergent abilities to manipulate, explore, experiment with, and use the joystick. Their growing consciousness of the functions of the joystick and ways to use it was found to be the keystone for their achievements. Participants’ growing consciousness of how to act on the joystick to set the chair in motion, how to use different actions on the joystick to cause different directions and speed, and how to order and time the acts composing goal-directed steering stimulated their tool use endeavors.

Identification of Phases in Learning Tool Use

The identified patterns of achievement formed 8 characteristic phases in learning joystick use, accompanied by phase-specific facilitating strategies. The 8 phases reflected different levels of consciousness of joystick use, revealing growth from unconsciousness of cause–effect relationships related to joystick use to consciousness of how to use the joystick for safe and functional driving.

The first phases were the most difficult ones in which to recognize and interpret behaviors that could be understood as meaningful or purposeful. The comparisons with infants’ joystick use facilitated the recognition of activities that could be interpreted as achievements in participants with PCD and enhanced the uncovering of the incremental order of the identified indicators of achievement. The 45 participants’ trajectory of learning joystick use was also authenticated by comparisons from the literature on infant development.

Participants in the reference group with lesser degrees of cognitive disability followed a trajectory similar to that of the 45 participants with PCD, although less slowly. The comparisons with the attainments of participants in this group led to confirmation of the higher phases in the learning process and the facilitating strategies accompanying those phases.

Attainments in Joystick Use

The 45 participants with PCD attained the following levels of joystick use (see Table 1): 8 participants reached Phase 2, 15 reached Phase 3, 9 reached Phase 4, 5 reached Phase 5, 6 reached Phase 6, 1 reached Phase 7, and 1 reached Phase 8. We found it surprising that 8 participants with PCD, both young and old, reached Phase 6 (goal-directed driving) or above after years of practice. Their achievements were unexpected and exceeded our expectations of possible outcomes. This finding is evidence of the benefits of providing people with PCD with long-term practice in a joystick-operated powered wheelchair. Similar facilitating strategies were successful in promoting participants’ attainments despite differences in age, etiology, and combinations of disabilities. The 6 participants with walking ability followed the same trajectory as the 39 participants without walking ability. The outcomes of the 45 participants, their individual characteristics, and the characteristics of facilitator training are described in more detail and statistically analyzed in Nilsson, Nyberg, and Eklund (2010).

Deplateauing Through Growing Consciousness of Tool Use

The researcher’s constant comparisons of interaction and communication between facilitators and participants led to the discovery of a grounded theory of deplateauing to explain achievements exceeding expected limitations. People are often expected to reach a limit—a plateau or a ceiling for their development, growth, and learning—so when they unexpectedly exceed their own or others’ expectations of achievements, they are deplateauing. The repeated analyses uncovered an interdependency among approaches, attitudes, responses, and learning of tool use (either participants’ learning of joystick use or facilitators’ learning of facilitating strategy use). The participants’ achievements were dependent on the facilitators’ motivation, endurance, responsiveness, adaptability, and understanding of the participants’ current position in the learning process. The facilitators’ achievements were similarly dependent on the participants’ signs of a drive to explore, endurance, responsiveness to facilitating strategies, and adaptability to invitations to interact. The achievements were also contingent on access to useful and predictable resources such as an appropriate powered wheelchair (Nilsson & Eklund, 2006) and on facilitators’ knowledge of and experience in powered wheelchair intervention with the participant population. Facilitators whose strategy use was stimulated by participant responses could facilitate a growing consciousness of joystick use to surprising levels, exceeding expected limitations and plateaus. Thus, when the necessary prerequisites of motivation, endurance, responsiveness, adaptability, and appropriate resources were mutually present, the facilitator’s and the participant’s tool use improved, and they both deplateaued.

Driving to Learn Method

The method used in the intervention involved mutual interaction, dialogue, and facilitation of participants’ understanding of tool functions and their own initiative to explore and implement tool use. They could move and manipulate the joystick even though it was attached, and it stayed in place despite their coarse, imprecise movements. Effects of accidental or voluntary activation influenced their whole body and their relationship to the environment. In the first phases of the learning process, circular movements with the chair dominated, which provided vestibular stimulation that increased alertness (Ayres, 1987). Bodily experiences of collisions naturally informed participants about properties of the chair and the nature of the environment and nurtured an internal desire to avoid the unpleasant experience of colliding. Repeated intervals of manual guidance and waiting for responses, together with practice in tool use, facilitated concept formation, meaning making, and curiosity, nurturing participants’ motivation to explore, experiment with, and master tool functions and tool use. This methodological knowledge was necessary for facilitators to provide the just-right challenge to enhance each participant’s growing consciousness of joystick use.

Tool Use Learning

Human tool use is related to complicated cortical networks affecting skilled manipulation and conceptual knowledge of tools and the actions involved in their use (J. W. Lewis, 2006). Acting on a tool includes manipulation and handling without knowledge of its use, and acting with a tool includes understanding and knowledgeable use of tool functions (Menz, Blangero, Kunze, & Binkofski, 2010). Tool use learning also involves development of a body scheme and an action scheme with timing and sequencing of actions and movement (J. W. Lewis, 2006). Brain activity research has indicated an important relationship between the cerebral cortex and cerebellum in the acquisition and storing of representations (internal models) of new tool use skills (Johnson-Frey, 2004).

The findings from tool use research provide evidence for the usefulness of the emerged facilitating strategies and the Driving to Learn method. The strategies affected the participants’ manipulation skills as well as their understanding of the effects and consequences of joystick use, conceptualization of tool use activity, and retrieval of internal models of the developing skills for tool use. Identification of the learning process and the assessment tool made it possible for facilitators to distinguish a participant’s position in the learning process and choose appropriate strategies to promote growing consciousness of joystick use.

Generic Value for Occupational Therapy

The three core purposes of occupational therapy described earlier can be fulfilled using the Driving to Learn method because the achievements from practicing joystick use may extend individual abilities and skills and provide a means to become more autonomous (Hagedorn, 1995; Nilsson, 2007). As Yerxa (1998) and Ayres (1987) argued, the occupational therapy field has a need for increased knowledge of the development of adaptive skills, rules, and habits that can facilitate capability and of ways to create individually adjusted challenges to stimulate adaptive responses. The identified process of learning joystick use and accompanying facilitating strategies may help professionals enable people with PCD to become doers, to enhance their capability to interact, and to gain empowerment and well-being (Lancioni, Singh, O’Reilly, Oliva, & Basili, 2005; Tengland, 2007; Wilcock, 1998). The findings can also be useful for occupational therapists attempting to use powered mobility intervention with people who have lesser degrees of cognitive disability.

Grounded Theory Approach

Videotapes were an indispensable tool for the study of people not able to directly communicate their experiences or use verbal language. The videotapes enabled recognition, interpretation, and comparison of the participants’ activities and gradual development (Nilsson, 2011).

An advantage of the grounded theory approach was that it allowed for repeated extensions of participant recruitment and data gathering. The great variation among participants enabled the discovery of comparable codes, indicators, categories, and properties of possible achievements. The disadvantage of the approach was the amount of time needed for repeated comparisons, analyses, and sorting to ensure the trustworthiness and relevance of the emerging learning process and the theory of deplateauing.

An unexpected benefit of conducting the project in a rural area and of focusing on a small population with slow development and diverse reference groups was that the practice was performed in many different contexts and by different facilitators. This variation elucidated facilitating and hindering aspects of the context and enhanced identification of the 8-phase learning process.

A potential limitation is that the researcher acted as both facilitator and researcher. The researcher sought to minimize this limitation by engaging in recurrent discussions and inspections of video clips from special core situations during sessions with parents, related people, and professionals not involved in the project. She also increased the number of facilitators and participated in critical discussions with the coauthors.