Participation during a Pandemic: Forging New Pathways

Finding meaningful ways to occupy our time promotes good health and well-being (Law, 2002). The benefits of participation become more profound during times of crisis such as the COVID-19 pandemic. For youth and young adults with disabilities whose participation opportunities are typically restricted by environmental barriers, the global pandemic imposes another layer of unprecedented complexity (Patel, 2020). Recent studies among youth with disabilities highlight their desire to engage in leisure activities that provide fun, freedom of choice, fulfillment through discovering, and developing their potential, and friendship for social connectedness and belonging (Powrie et al., 2015). These challenging times encourage us to re-think how we package and deliver our therapy interventions to promote participation and, consequently, health.

This commentary builds on our experience and insights of a study aimed to improve participation of transition-aged youth living with a physical disability conducted during the COVID-19 pandemic. The study, funded by the Canadian Institutes of Health Research, examines the effectiveness of community participation on body functions. Pathways and Resources for Engagement and Participation (PREP) is an evidence-based intervention used in this study to empower youth and young adults with physical disabilities to participate in a self-chosen leisure activity through targeting changes to the environment or the activity (Anaby et al., 2018). This commentary draws on our experiences with eight participants demonstrating how the PREP intervention was adjusted to facilitate participation of this vulnerable group during a pandemic where physical distancing is mandated to help limit the spread of COVID-19.

Participation during a pandemic is challenging yet viable. Participants were especially keen to find opportunities for participation, reinforcing the need for meaningful engagement during times of disruption, particularly for those who may be more socially isolated. However, during the pandemic, most programs and other opportunities for participation in the community were not available due to the greater risk for infection indoors and social distancing required outdoors. The PREP protocol was adjusted to enable participation in desired activities under the existing restrictions. This required flexibility and creativity to jointly identify activities and seek solutions to make participation possible.

The following are some of our lessons learned and proposed strategies to consider:

• The process involves a collaborative effort of the participant, therapist, caregivers, volunteers, a nurse (in the case of the pandemic to provide consultation for safe options that abide by current health and safety guidelines), and other community stakeholders, forming a participation team, to problem-solve and build on existing resources. There is not one solution, such as virtual technology, which will enable participation that is meaningful and engaging for all youth; strategies must meet the unique needs of the youth and match their personal interests, motivations, and context. Examples include selecting out-of-home activities which inherently afford the ability to distance from others (such as badminton) or finding a new way to engage in a community activity like board game cafes in the safety of one’s home while still maintaining the focus on socialization through connecting with a same-age peer with similar interests to play together. For sports such as basketball, badminton, or table tennis, certain community organizations and gyms offer private use of their facilities for two players at an affordable rate. This allows for participation in paired unstructured physical activities while following guidelines for using personal protective equipment and adhering to changing public health regulations.

• More time is required to select a participation goal given that many programs and opportunities are not available during the pandemic; having an alternative plan is necessary. Youth may be keen to pursue one specific activity that is not feasible, however flexibility can be facilitated through discussion and exploration of other potential areas of interest. Activities should not be abandoned before first exploring possibilities and offering different ways of participating in a desired activity. Through this process, a better understanding of the meaning of participation for the individual is acquired, and youth have choice as to which activity they pursue within the current restrictions. In cases where youth are eager to participate outside the home, offering a hybrid option (i.e., mixture of two options) can be useful for meeting changing public health restrictions. For example, there were no community options available during the pandemic for a youth who was interested in pursuing singing but reluctant to engage virtually. Lessons were offered 1:1 in the home with consultation from a nurse to ensure the activity could be done safely while meeting public health regulations and the youth understood that the virtual option may be needed should restrictions change. Fostering a flexible mindset from the outset sets the stage for open communication and innovative ideas while remaining true to youths’ interests.

• With limited availability of structured in-person programs, it is necessary to consider ways to create social opportunities and build new resources for participation. This involves thoughtful coordination to facilitate connections utilizing existing resources and networks. Through the sessions with youth, the therapist exchanges knowledge to work toward finding innovative solutions together. Therapists can consider meaningful social experiences for the youth, building a participation team which might involve seeking age-matched peers with similar interests to participate in the youth’s chosen activity, often resulting in new friendships. For the individual who was interested in playing board games socially, the therapist sought out donated board games from colleagues and recruited a same-age peer who was also interested in playing board games. Finding the ‘right-fit’ is important for creating an enjoyable and engaging experience. Parents of both youth were connected to facilitate open communication and coordination of the activity in a safe way allowing the youth to maintain distance while also wearing masks indoors. This is particularly important given changing public health guidelines and the potential need to adapt quickly. For example, communication between parents is necessary to ensure family members of both parties are symptom-free each time the youth plan to get together.

• Involving other community stakeholders, such as directors of national organizations, local program directors, or leaders of local disability advocacy or youth groups, to consult on specific activities is beneficial for building resources and pathways to engagement and inspiring youth to pursue activities. For example, the president of a national sledge hockey association shared information about availability of programs and regulations, inspiring testimonials, and video clips, offering connections with existing networks and local resources. A local athlete and advocate for youth with disabilities in sport offered connections for youth to receive 1:1 peer support. Creating connections between youth and these stakeholders can provide youth with meaningful insight from those who can relate to their experiences. The disability community is a valuable source of information for understanding resources, logistics, and opportunities.

• Finally, it is important to recognize the efforts needed to establish a sustainable activity while balancing expectations under the changing circumstances. Once the activity and participation team are identified and engaged in the process, the therapist can offer support to structure proposed activities. This is especially important amidst a pandemic when the psychological impacts (e.g., stress, anxiety, depression) may affect individuals’ ability to prioritize, plan and follow through with activities (Wang et al., 2020). It may be difficult for the participation team to initiate and coordinate a new unstructured activity during the time of a global health crisis. For example, there were two individuals interested in cooking. Initially, the therapist sought out existing workshops and found only virtual options. Given that the two youth were not interested in cooking virtually, the therapist first coordinated a participation team, matching a volunteer for each youth to provide 1:1 lessons in the home. As a new proposed activity without existing structure in place, the therapist worked with the participation team to plan weekly cooking sessions in advance for the team to implement. Establishing a routine helps to clarify expectations and build habits making it easier for everyone to stay committed and engaged with the activity and to adapt quickly when needed. Returning to discussions about maintaining a flexible mindset and proposing alternative solutions as needed is helpful to establish comfort and confidence before starting the activity; changes can be made as needed and should be communicated with all parties.

During times of crisis, creating new social opportunities for participation that are informal or unstructured are necessary and can provide valuable outcomes for youth. This requires restructuring therapy interventions to facilitate capacity-building and forming new pathways to engagement using strength-based and truly client-centered strategies. Although online leisure options are becoming more available, this may not always be preferred by youth who desire social connection and activities beyond the virtual platforms as observed in the current study. For the purpose of planning activities, however, virtual platforms can be useful for completing the initial therapy session/discussion remotely where a participation goal is set; future meetings for discussing solutions to emerging barriers could continue virtually or perhaps include creative ways for meeting with the participation team in-person such as in an open space outside the youth’s home.

Recognizing the unpredictable environmental factors involved, maintaining communication, and remaining flexible are keys to success and indeed build resilience through overcoming obstacles encountered. Building capacity during challenging times can have a paramount effect on youth’s perspectives not only on their capacities but also the versatility of the idea of participation (realizing that participation is still achievable even in adverse times and there are many ways to participate and feel engaged). Equipping youth with solution-based strategies in challenging times can intensify problem-solving where more opportunities and resources are available, preparing them for ‘real-life’ ongoing changing circumstances. Perhaps the pandemic is an ideal time to truly empower each of us to recognize the value of working toward common participation goals that enable us to maintain a sense of connection when we are required to stay apart.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Notes on contributors

Dana Anaby

Dana Anaby is an Associate Professor at the School of Physical and Occupational Therapy at McGill University. She is the Principal Investigator of the PREP approach and holds the Fonds de la Recherche en Santé du Québec (FRQS) Research Scholar Award.

Mallory Ryan

Mallory Ryan is the co-founder of the Dance Ability Movement and a doctoral student in Rehabilitation Science at McGill University.

Robert J. Palisano

Robert J. Palisano is a Distinguished Professor Emeritus at the Physical Therapy and Rehabilitation Sciences of Drexel University.

Mindy F. Levin

Mindy F. Levin is a Professor at the School of Physical and Occupational Therapy at McGill University.

Jan Willem Gorter

Jan Willem Gorter is a Professor at the Department of Pediatrics at McMaster University and the Director of CanChild Centre for Childhood Disability Research.

Lisa Avery

Lisa Avery is a Senior Statistician and the founder of Avery Information Services Ltd. She holds a PhD in Kinesiology and Health Science from York University.

Isabelle Cormier

Isabelle Cormier is the Director of the Youth Program at the Lethbridge-Layton-Mackay Rehabilitation Centre.

Rachel Teplicky

Rachel Teplicky is the Business and Engagement Officer of CanChild Centre for Childhood Disability Research.

Janice Coulter

Janice Coulter is the President of Women's Para Hockey of Canada.

Julia Hanes

Julia Hanes is a young adult Advocator affiliated with CanChild Centre for Childhood Disability Research.