Table 1.

Results of the Stakeholder Advisory Group Meeting Organized by the Theoretical Domains Framework

Theme/Theoretical Domain	Results
Knowledge	– Increase knowledge, skill, and confidence – The inpatient rehabilitation stay is typically very short and not much knowledge transferred, leaving individuals with SCI “unfinished” when they return to the community; there are new challenges, new learning opportunities. The self-management program must provide knowledge to meet these new challenges – The content must be evidence informed – Program participants must have knowledge on how to access the service and when to use it – The program must provide tools/knowledge on how to navigate crises – The information provided must be accurate/ well-timed – The [health] literacy of the program participants must be considered
Skills	– There should be education certification for those delivering the program – There is a need for training of program leaders, peer mentors, caregivers, health care professionals, etc. – There should be consideration for the inclusion of “assignments” to help consolidate skills (e.g. homework such as action plans that participants complete between sessions) – There is a need to account for different skill levels and age ranges
Social/Professional role and identity	– It is suggested that primary care is made aware of the program, linked to the program (e.g. the program has buy-in from the family physician so that he/she can make his/her patients aware of the program and promote it) – The adoption of programs are often driven/ facilitated by peers
Beliefs about capabilities	– There is a need to incorporate social media/ peer mentors for promotion of the program – Many individuals do not know that they can manage self-care (many individuals are not familiar with the term self-management) – It is important to note that SCI is not like another chronic disease; there is significant “baseline” divergence. Individuals with SCI must learn the “new normal”
Beliefs about consequences	– The knowledge and medical outcomes should match the outcome expectations of the individuals with SCI (i.e. the program should be derived from input from individuals with SCI) – One of the suggested outcomes should be the reduction of secondary complications (this serves funders and patients)
	– There is a need to consider the stage of injury (and relatedly, program leaders may need to assess individuals’ readiness for change using tools to assess readiness for self-management e.g. transtheoretical model, Patient Activation Measure – “Readiness” for information and self-management (i.e. timing for interventions) needs to be considered/is key – There are several phases of learning readiness; acute care is just the beginning – The levels of enthusiasm in individuals with SCI need to be considered – The program needs to be tailored to the patients’ needs (i.e. priority setting/per person; customizing to make them feel independent) – Measures of change in the patient should be collected (i.e. online data collection) – There is a divide between ongoing needs of individuals with SCI and crises
Memory, attention and decision processes	– There is a need for accessible information (i.e. information that is available in “2-clicks)” – The program must fit into the schedule of individuals with SCI
Environmental context and resources	– There is a need to consider governance, ownership – National buy-in should be considered – There is a need to consider a business model for sustainability – A Central/backbone funding is needed – There is a need for a program that is affordable, accessible, available locally (e.g. provincial systems differ and there are different needs in urban and rural locations) – The SCI resources in the self-management program must be tailored to local context – There is a need to acknowledge that there are limited healthcare resources and capacity – Resources must be allocated to individuals with SCI (e.g. internet access, transportation to the program) – There is a need to acknowledge socio-economic barriers on the part of individuals with SCI – There might be issues with respect to computer, internet access – There is a need to create awareness of programs among health care professionals to endorse and market the programs – There is a need to incorporate an existing network of services - service “hub” (e.g. existing programs in rehabilitation centres) – There is a need to leverage peer supports – SCI organizations are a leading source of ongoing support; there is a need to integrate the proposed program with their existing tools with theirs (examples include SCI WIRE (chat channel, access peer responses), Strengthening Families Initiative (McGrath at Dalhousie), “Discovering the Power in me” SCI Nuggets (Rick Hansen Institute), SCI-U) – There is a need for resource consolidation: e.g. an “Info Atlas” – There is a need for a central/localized information repository – There is a need for triage-based systems (including tools to navigate crises), tools to assess symptoms and help determine needs/next steps – Strategies are needed to reach hard-to-reach clients – There is a need to include “booster sessions” in the community – There is a need to create adaptable modules that can be integrated with other programs – Different modalities (e.g. phone, online, smart devices, tablets, apps, face to face) to deliver boosters/training need to be considered – There needs to be a mechanism for routine updating – There is a need to consider developing program materials for different languages, cultures
Social influences	– Issues of privacy and security measures (what requires privacy/security) need to be considered, especially in the context of on-line program delivery – There is a need to prioritize input and feedback from individuals with SCI; the program needs to be informed and led by individuals with SCI (i.e. needs driven) – There is a need to consider convenience in delivery - what works for individuals with SCI? – There is a need to consider that support groups can also deliver misinformation (how should this be addressed/accounted for?) – The program needs to be community oriented – The spouse/caregiver may be ready for his/her own self-management support program and the individual with SCI needs to be open to that
Optimism, Emotion regulation	– There is a need to address stigma – The program should include content related to acceptance of disability (there are different frames of reference for what disability means) – There program should include content related to depression – There is a need to consider embarrassment especially for difficult topics like bladder management, particularly for youth – Self-management may be considered a “weird misnomer” and may need some rebranding (i.e. individuals with SCI may not know what self-management means, entails); – “Beyond Rehab” as an alternate name/brand for self-management could be considered
Behavioural regulation	– The program should be based on adult learning principles – Proposed content areas may include: stress management, secondary conditions and pain, coping, locus of control, social roles and relationships, problem solving, and developing action plans – Individuals must learn how to manage while waiting – Online tools that help to inform patients to be involved in their self-management must prioritized