Participation, defined as “involvement in a life situation” (World Health Organization, 2002, p. 10), includes all aspects of everyday life. Participation allows people to develop their capacities, increase their understanding of themselves, become involved in their community, and live meaningful lives (Law, 2002). Youth with disabilities generally participate in fewer and less diverse activities than those without disabilities, and these activities often take place in the home (Anaby, Vrotsou, Kroksmark, & Ellegård, 2019; Law, 2002). Moreover, participation decreases from adolescence to adulthood—a phase that already involves specific challenges (Stewart, 2013). Therefore, to provide effective and meaningful care, occupational therapists need to understand the everyday participation of youth with disabilities and the challenges that they face (Orban, Edberg, & Erlandsson, 2012).
Participation is a complex and dynamic concept, and comprehensive methods are needed to describe it through measurement (Coster & Khetani, 2008). Although measures of participation that assess frequency and satisfaction are available (Adair et al., 2018), because they often rely on recall rather than tracking participation as it occurs, inaccuracies may be found (Holsti & Barr, 2006). Existing measures seldom illustrate the sequence of everyday activities, which is essential when attempting to understand participation. Methods that involve diary entries and time-use interviews provide information about the sequence of activities, but they often do not “provide information about activity preferences, meaning, and enjoyment” (Law, 2002, p. 642). Finally, few self-reported assessments are designed to address the unique needs of transition-aged youth because their patterns of participation may be different from those of a child or an adult (Gorter, Stewart, & Woodbury-Smith, 2011).
An alternative method of measuring participation that does not rely on recall and provides information on the sequence of activities is the time-geography approach. This method explores daily patterns of activities by gathering data on what activities are performed, when they are performed, where they are performed, who is involved, and what associated feelings occur within a 24-hour period (Orban et al., 2012). According to Hunt and McKay (2015), the most commonly used time-geography method is the time-use diary. Time-geography methods have been used successfully with youth with physical disabilities and others to help clinicians to demonstrate reflection, aid in setting goals, and understand daily patterns; these methods are particularly useful if combined with an interview (Anaby et al., 2019; Magnus, Kroksmark, & Nordell, 2017; Orban et al., 2012). Measuring participation in context, as it occurs, is essential to minimize inaccuracies in recall and illustrate the sequence of activities throughout a full day (Holsti & Barr, 2006; Kroksmark et al., 2006). This approach can provide a comprehensive and accurate picture of participation patterns.
There is limited research on the use of mobile app-based devices within occupational therapy practice. Tomori et al. (2012) showed that the Aid for Decision-making in Occupation Choice app, which tracks goals, facilitated shared decision making. As technology becomes more prevalent in daily life, particularly with youth, it is important to examine app-based participation measures to provide clinicians with measures that are relevant and suitable for their clients (Erickson, 2015). The Aday-App is a technologically relevant measure of participation that is based on the time-geography method (Magnus et al., 2017). This mixed-methods study explored the perspectives of youth with physical disabilities on the usefulness of the Aday-App in capturing real-life participation patterns.
This mixed-methods study used an individual-based sequential explanatory design (Ivankova, Creswell, & Stick, 2006). Data on participation patterns were collected and analyzed in consecutive phases. Data were collected with the Aday-App (QUAN), and 2 weeks later, data were collected through an individual plot-stimulated recall interview reflecting on the App results (QUAL) in combination with a questionnaire to assess the usability of the App (QUAN).
Eligible participants were transition-aged youth who had physical disabilities and mobility restrictions. Participants were included if they were 15 to 24 years old because many transition points occur during this period (Stewart, 2013). Multiple diagnostic categories (e.g., cerebral palsy, spina bifida, arthritis, amputation) were included because research shows that participation among this population does not vary across diagnostic categories (Law et al., 2004). Participants were required to (a) navigate the Aday-App manually and independently and (b) express and communicate opinions and self-reflect verbally in English and/or French. Excluded were youth who had severe cognitive impairment and those who had sustained a severe brain injury or had undergone orthopedic surgery within a year.
Participants were recruited from three major rehabilitation centers that provide services for youth with disabilities in a large metropolitan Canadian city. The clinical coordinators at each site contacted potential participants based on the inclusion criteria. If the potential participants expressed interest, their contact information was provided to the research team. Of the 24 individuals who were approached, a total of 12 youth participated in the study. Ethical approval was obtained from the research ethics board of a local research institute in the field of rehabilitation, and written informed consent was obtained from all participants. Pseudonyms were used to ensure confidentiality.
Aday-App. The Aday-App is a newly developed electronic version of a time-geography diary that records an individual's activities over a 24-hour period. The App includes 196 types of activities (e.g., get dressed, watch TV, prepare food, study, play a game), developed through population studies of individuals at various ages, including youth with disabilities. The activities are organized into seven participation domains: self-care, leisure, study/work, transport, household chores, care for others, and food tasks (Anaby et al., 2019; Kroksmark & Nordell, 2001). The user enters data on each activity as it occurs, including the location (using a dropdown list of 21 options, such as home, school, or neighborhood), others who are present (choosing from 24 options, such as friend, classmate, family member, or therapist), and mood while engaging in each activity rated on a 5-point emotional scale (ranging from very happy/satisfied to very unhappy) (Aday System, 2017). All activities were recorded and streamed via the Aday manager panel, a secured web-based system designed for the Aday-App. This method has been shown to be a reliable tool to capture participation patterns and evoke reflection (Anaby et al., 2019; Orban et al., 2012).
Questionnaire. A questionnaire was used to obtain demographic information as well as information on 13 health conditions (e.g., orthopedic impairment, traumatic brain injury) and 11 functional issues (e.g., difficulty using the hands, paying attention, and communicating). The Usefulness, Satisfaction, and Ease of use (USE) questionnaire was used to measure the usability of the App (Lund, 2001). This valid and reliable tool (Gao, Kortum, & Oswald, 2018) includes four domains: usefulness, ease of use, ease of learning, and satisfaction. The USE questionnaire includes 30 items (e.g., “It is easy to use” and “It meets my needs”) rated on a 7-point Likert scale. The USE questionnaire generates four median and percentile scores, one for each domain. Scores range from 1 (strongly disagree) to 7 (strongly agree).
Interview. Each study participant completed plot-stimulated recall interviews lasting approximately 45 to 90 minutes. To enable the youth to reflect on their participation patterns, a detailed visual display of their daily routine, plotted by the Aday-App and the research team, was introduced. This display also allowed participants to clarify activity entries and expand on the data produced by the App. An interview guide that included seven open-ended questions was used to promote reflection on the day, types of activities, and overall experience with the App.
Participants met with a researcher to complete the consent form and the demographic questionnaire and learn how to download and use the Aday-App. They were also given written instructions for navigating the App. Participants were asked to complete the App over 2 days (two separate 24-hour periods). One recording period occurred during a typical weekday, and the other recording period occurred on a weekend. After completing the two entries, participants underwent a plot-stimulated recall interview with the researcher. The researchers used the plotted figures that summarized participation patterns generated by the Aday-App and Microsoft Excel (using bar or pie charting options) as visual representations to guide the interview. Participants also completed the USE questionnaire. Each interview was voice recorded and took place in a convenient, quiet location chosen by the participant (e.g., at home). Each participant received a $20 gift card as a token of appreciation.
Descriptive analysis (QUAN). Descriptive analysis was conducted with the data generated by the App. The Aday manager panel generated tables and plots that showed each individual's patterns. These plots illustrated the sequence of activities that occurred over the course of the day and displayed the activity across a trajectory that showed where the activity occurred, who was present, and a measure of the participant's mood (Figure 1). The researchers exported the data into Microsoft Excel to create additional graphs (bar and pie charts). Data were organized to show the four dimensions of the App across 24 hours and correlations between the dimensions. For example, to illustrate which activities were the most and least pleasurable, activities were plotted against mood (Figure 2). Percentages of time allocated across locations, activity categories, and people who were present were calculated and plotted with pie charts (Figures 3–4). This visual representation of the data allowed participants to read and understand their results during the interview and provided a concrete, detailed, and accessible representation of daily participation. Descriptive statistics (median, maximum/minimum, 25th percentile, and 75th percentile) for the data obtained from the USE questionnaire were calculated to describe the four usability aspects of the Aday-App.
Aday-App system-generated plots across the activity dimension for a 19-year-old man.
Researcher-generated plots comparing mood and activities for a 15-year-old girl.
Researcher-generated plots comparing percentage of time and activity categories for a 23-year-old woman.
Researcher-generated plots comparing percentage of time spent with different people for a 21-year-old woman.
Thematic analysis (QUAL). According to the guidelines outlined by Braun and Clarke (2006), a thematic analysis of the interviews was conducted to identify patterns within the data and to describe, interpret, and combine these patterns into themes. Interviews were transcribed verbatim, and the first five interviews were coded by two researchers independently to develop an initial coding scheme to guide coding of the remaining seven interviews. Qualitative analysis software (NVivo 12) was used to create codes, search for themes, and outline a concept map. Team members met regularly to review, discuss, and redefine codes, topics, and themes, allowing for flexibility and changes in the initial coding scheme. Themes were checked against the original data and vice versa by reading and rereading the collated extracts for each theme to ensure that the thematic map reflected the meaning evident in the data set as a whole. French interviews were coded in English, and French data extracts used in the thematic analysis were translated into English by the researchers. Qualitative data (themes) and quantitative data (usability aspects measured by the USE questionnaire and measures of participation frequency and mood generated by the Aday-App) were integrated to account for the overall usefulness of the Aday-App in capturing participation patterns.
The study included 12 participants who were 15 to 23 years old (M = 19.3, SD = 2.8) (Table 1). The most common health condition reported by participants was impairment of orthopedic movement (91.7%), followed by health conditions that included eczema, epilepsy, anemia, and asthma (66.7%). Participants had an average of 3.3 of 11 functional issues. The most common issue was difficulty using the hands (66.7%), followed by difficulty moving around (50%). Results of the USE questionnaire (Table 2) indicated that the Aday-App is easy to learn (6.8 on a 7-point scale) and is relatively easy to use (5.6 on a 7-point scale). Although levels of satisfaction were fairly high, the levels of usefulness varied, with some participants describing the App as less useful and others describing it as very useful.
Sample Characteristics (N = 12)
Results From the Usefulness, Satisfaction, and Ease of use Questionnaire
Six central themes emerged from the data (Figure 5). Of these, two were informative and described a range of activities and aspects of the features of the App that led to four reflective themes that illustrated participants' thoughts and observations on their daily participation patterns.
The six themes in a concept map format.
Array of occupations. This theme encompasses participants' discussion of current, past, and future occupations (including various occupational areas) and draws on aspects of the environment. Self-care activities (e.g., brushing teeth, eating meals), productive activities (e.g., household chores, such as cooking or pet care), and school-related activities (e.g., such as studying or completing assignments) were discussed. Work-related activities (e.g., summer jobs or work training) and various types of active leisure activities (e.g., basketball, boating), passive leisure activities (e.g., watching TV, reading), and social activities (e.g., hanging out, going to a party) were mentioned. Participants referenced the environment, including various locations (e.g., home, mall). They also discussed accessibility and transportation (e.g., adapted transport, car) and the social environment, including other people in their lives (e.g., coach, mother, peers).
Applicability of the App. Participants provided positive feedback about the features of the App and suggested areas for improvement. They stated that the App was straightforward and easy to use and did not require excessive time, confirming the quantitative findings of the USE questionnaire. Some noted that the word bank provided by the App for entering activities fit their needs, but others reported that the selection of words was inadequate. Participants appreciated having the option to comment on an ongoing activity, a feature integrated into the App, because it allowed them to mention activities that they may have forgotten to enter. Some participants found the 2-hour reminders helpful, and others would have preferred the option to modify this period within the App. Participants also suggested adding an option to allow viewing of daily entries within the App or to allow any activity to be entered (rather than using a word bank) by including a supplementary question to allow the participant to assign the activity to a category (e.g., self-care, leisure, productivity).
Most participants reported that the visual display of daily patterns accurately represented their daily participation. Some participants preferred the original graphs generated by the Aday-App manager panel program (Figure 1) because they provided a chronological review of the day. However, most participants preferred the Microsoft Excel graphs (Figures 2–4) created by the researchers and found them more visually appealing and easier to follow than the original graphs generated by the App.
Directing attention to participation. The study process allowed participants to draw their attention to and reflect on their participation patterns. Participants showed various reactions to their patterns. Participants reported that their participation patterns, visually displayed by the App, were typical and accurate representations of their current daily activities. The study was conducted during the summer, and participants noted that their patterns were different at that time than during the school year. Participants often responded to the frequency of activities, reporting participation in more leisure activities during the summer and on weekends. Dante said, “Never in a million years did I think that leisure activities would be 50%.” Many participants also reflected on the finding that they spent a lot of time on self-care activities and less time on productivity. For example, Lucy stated, “I think I could have done more or could have been more productive, but I guess I'm a homebody.” Overall, the results of the Aday-App, visually displayed with graphs, helped participants to reflect on their activity patterns. For example, Lucy described the graphs as “eye-opening,” and Dante noted, “By seeing the graphs, I get to know myself a bit better.”
Several emotional responses were raised, and most indicated satisfaction. Many participants described themselves as happier than expected, and overall, mood ratings were high for all activities (4 on a 5-point scale and 5 on a 5-point scale). When reporting unhappiness, participants commonly reported feeling nervous, bored, or anxious during specific activities. Some participants reported a lower mood as a result of their physical symptoms. For example, Marie-Anne reported the lowest mood “at night, after a long day. Last night, I had pain; therefore, obviously, it [pain] lowers it [mood].”
Determinants of participation. This was another reflective theme. Participants identified many personal and contextual factors that affected their participation. In most cases, personal factors involved internal characteristics that affected the ability to engage in activities. Common personal issues included lack of confidence and hesitation to get involved because of shyness and anxiety. Participants also recognized that physical limitations and medical conditions, such as pain and “seizing,” played a vital role in their engagement. However, despite these challenges, participants showed resilience and discussed the strategies that they used to overcome these difficulties. For example, Dante talked about playing the electric guitar with one hand. Rather than strumming, he noted that he uses a technique called tapping.
Contextual factors, including the attitudes of others, the physical design of spaces, the programs that were offered, and the way that activities were modified, were noted as factors that affected participation. All participants described the importance of family support, for example, parents who drove participants to activities and assisted with mobility. Teachers also played an important role, and many participants discussed how their teachers supported them and found ways for them to engage in activities. For example, Georgia described how her gym teacher invented an adapted version of basketball that used a lighter latex ball so that everyone could participate. Despite positive experiences, some participants also discussed encountering negative attitudes from others. Dante noted that he did not make the school basketball team, despite being told by his coach that he was “good enough.” His coach said, “If I put him on the team, the kid who's got one hand, one arm, how am I going to explain to the moms of the kids who have two hands that he's better than they are?” Dante explained that when the coach said this, “It was like a knife to the heart.” However, Dante showed resilience, and when he did not make the school team, he decided that he wanted “to prove them all wrong.” He went to the gym, put on some weight, and was successful on another team. Finally, the physical environment significantly influenced participation. Many participants attended adapted schools, got around without difficulty, and received the support that they needed. Jeremiah was excited when he went on a school trip to an amusement park and was provided with a brochure on wheelchair-accessible rides. However, participants also noted that many buildings and locations were inaccessible. The weather was another challenge. Georgia mentioned the summer heat, saying, “If I want to do an activity, as soon as I get out of the house, I'm already weak because of the sun.”
Social engagement and interaction. Participants reported that they enjoyed being around others, such as family and friends. However, the graphs showed that they spent a significant amount of time alone. Many participants noted that they had few friends or rarely saw their friends. Dante described himself as a “lone wolf ”; he explained that when he has the opportunity to talk to someone, he feels ecstatic, saying, “I lose my mind because it never happens.” He went on to say that besides his brother and one friend, he doesn't “have anyone.” When asked how that makes him feel, he replied, saying, “I don't hate it, but it would be nice to have, like, a friend.” Despite spending a significant amount of time alone, many participants noticed that the graphs showed that their mood was higher when they were with other people. For example, Ahmad discussed gaming alone versus with others, saying, “At 7:00, I was with my friends, and it's when I'm online with my friends that I'm in a better mood.” Participants also expressed a desire for friends and romantic relationships. Carlos stated that social relationships are fundamental for humans, sharing that “We, humans, are social creatures . . . and we need to be with other people.” He noted that connection is “as fundamental a need as eating and drinking.”
Desires for the future. Participants were excited but also nervous and unsure about the future. They spoke with enthusiasm about their productive ambitions and the goal of becoming independent adults. Many were in the process of making decisions about or applying for work and volunteer opportunities or higher education, such as studying aircraft mechanics or becoming a therapist. Some were uncertain about what they wanted to do and were able to do. François shared, “Because of my situation, I can't really move around much, and some movements that I can't do will restrict what I can do in a job or sports.” Some participants realized that the graphs showed that they were not doing as much of something as they would have liked. For example, many participants stated that they wanted to be more productive, for example, making their bed more often or studying more regularly.
Participants also spoke about personal ambitions, such as traveling, learning to drive, trying new sports, volunteering, or taking music or art classes. Some expressed a desire for increased social interaction, including finding romantic partners. As Dante shared, “I would like to have someone else to talk to besides my mom because she has no choice and has to be there.” Discussions also included the desire for self-improvement and personal growth, for example, becoming more confident and moving beyond their comfort zone. Participants often described their personal hopes, desires, and dreams for the future.
This study explored the perspectives of youth with physical disabilities on the usefulness of the Aday-App in capturing real-life participation patterns based on their experiences with the App. The feedback that they provided contributed to a better understanding of the App from the user's perspective and led to conversations about routines and habits as well as various barriers and supports that affect participation. It also highlighted the importance of socialization and identified a range of aspirations and potential occupations.
The process of using a time-geography method, digitally tracking participation patterns with the Aday-App followed by stimulated-recall interviews, coincided with previous studies that reported the benefits of combining the time-geography method with an interview (Magnus et al., 2017; Orban et al., 2012; Thompson & Oelker, 2013). This process allowed for a more complex understanding of the occupations of youth with disabilities and their environment. The use of technology provides a meaningful way to understand the daily activities of youth, given that technology has become an everyday component of their occupational lives (Erickson, 2015). Clinicians must keep their clients' needs at the forefront, match the technology to the client, and consider the demands of activities as well as environmental factors (Erickson, 2015). In addition, quantitative information obtained from the USE questionnaire and the qualitative interview data (informative themes) provided important feedback that can be used to guide developers to refine the App for future users. For example, attention can be given to the wording of the activities offered by the App.
The findings showed that the Aday-App and the visual representations of daily patterns that it generates can provide a strong, accurate, and concrete foundation for in-depth conversations. When all activities are entered, the App allows for a meaningful level of reflection and a comprehensive understanding of each participant's desires, hobbies, interests, and daily routines as well as barriers and facilitators. In addition, the process allowed for exploration of all categories of participation, including areas that are often overlooked by occupational therapists, such as sleeping, eating patterns, and romantic relationships (Couldrick, 2005). Many clinicians, particularly occupational therapists, are trained to have conversations that allow them to gain a holistic understanding of their clients and the challenges that they face, and these conversations help therapists to focus on client needs (Rebeiro, 2000). However, starting these conversations, asking the right questions, and obtaining the necessary details, while relying only on the client's subjective memory, can be challenging and may not provide accurate information. Research shows that the use of supports, such as visual aids (e.g., graphs) or diaries, during the interview can facilitate recall and reflection (Orban et al., 2012; Thompson & Oelker, 2013). Therefore, the Aday plots can potentially facilitate the clinical evaluation process.
To gain a holistic understanding of participation, it is important to consider the environment because it is key to participation by children and youth (Anaby et al., 2013). When observing the results, participants discussed specific aspects of the environment that affected participation. This is particularly important because emerging occupational therapy intervention approaches for youth focus on modifying aspects of the environment. For example, the Pathways and Resources for Engagement and Participation is a strength-based intervention with a goal of removing environmental barriers to enhance participation (Anaby, Law, Feldman, Majnemer, & Avery, 2018). Use of the Aday-App and the conversations that ensue may be an effective supplementary tool.
Additionally, using the App created a unique platform to discuss sensitive topics, for example, the desire to find a romantic partner. This is important in a clinical setting because difficult topics can be essential to a person's well-being, but may be challenging for both the client and the clinician. In this study, participants discussed their experiences of isolation and loneliness. Participants recognized that their mood was higher when they were with others and noted that social relationships were important, but the graphs showed that most participants spent a lot of their time alone at home. These findings are similar to the results of previous research that showed that participation patterns of children and youth with disabilities often lack diversity, are located primarily in the home, and involve few social relationships (Kroksmark & Nordell, 2001; Law, 2002).
Participants also provided insights into their future hopes and desires. The transition period to adulthood involves numerous changes and life decisions (Stewart, 2013). Many participants started to think about and suggest new and different activities that they wanted to try, which in turn allowed them to reflect on areas for possible change. The Aday-App can be an effective tool for clinicians to start conversations about participation-based areas of change and goal setting. There is a need to develop strategies for goal setting and tools that involve clients in the decision-making process (Tomori et al., 2012). Similarly, the combination of using the Aday-App and conducting interviews could be an effective way to allow collaboration on goals and decisions during interventions. The information gained from the Aday-App could also provide insight into an individual's personal interests and hobbies, which is important when trying to plan meaningful interventions (Law, 2002).
Limitations and Future Directions
Because of the study timeline and considerations of feasibility, participants only tracked their participation for 2 typical days, a weekday and a weekend day. This schedule was selected to reduce the burden on participants; in addition, previous research showed that documenting 2 days is sufficient in facilitating reflection on daily participation (Orban et al., 2012). Finally, the sample was relatively small and limited to youth who had mobility restrictions and no cognitive difficulties. However, our sample showed diversity because it included a variety of cultures, a range of ages and functional issues, and an equal number of male and female participants. Larger studies are needed to determine whether the use of the App can lead to exploring desires for change, goal setting, and intervention planning as well as whether the Aday-App can detect changes in participation patterns over time and after an occupational therapy intervention. Finally, this study provided valuable perspectives from youth on the usability of the App. It is important to understand clinicians' perspectives on the utility of the Aday-App and its clinical applicability.
The current findings provide insight into participation in relation to time, location, companions, and satisfaction with occupational engagement. Thus, the Aday-App, combined with an interview, was useful in drawing the attention of participants to real-life participation patterns and facilitating in-depth discussion of current and future occupations as well as aspirations that are relevant for transition-aged youth living with a physical disability.
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Sample Characteristics (N = 12)
| Major urban||6|
| High school or less||9|
| Some college/university or technical traininga||1|
| Graduate of college/university||1|
| Vocational training/diploma||1|
| Regular classes||4|
| Regular/adapted classes||3|
| Specialized classes||2|
| Online classes||1|
| Missing data||2|
Results From the Usefulness, Satisfaction, and Ease of use Questionnaire
|Domain||Median||Minimum||Maximum||25th Percentile||75th Percentile|
|Ease of use||5.60||3.64||6.64||5.28||6.14|
|Ease of learning||6.88||5.50||7.00||6.13||7.00|