Co-developing a Novel Intervention to Promote Wellbeing of Family Caregivers of Individuals With Spinal Cord Injury

The 38-item Dutch Objective Burden Inventory will be used to measure family caregivers' objective burden by assessing participants' perceived burden relating to care activities over the past three months. Individual responses are scored (1 = Not at all burdensome, 2 = somewhat burdensome, 3 = very burdensome) and the average calculated to produce a total score (ranging from 1 to 3). Higher averages indicate higher objective burden. The Dutch Objective Burden Inventory will be administered via survey at 3 timepoints.

The Depression, Anxiety and Stress Scale (DASS) contains 21 items assessing distress over the past week using a 4-point Likert scale (0=never, 3=always). Responses for each item will be scored and averaged into a single distress indicator with higher scores indicating more distress. The DASS will be administered via survey at 3 timepoints.

The Dyadic Adjustment Scale (DAS-32) consists of 32 items for measuring the level of relationship quality satisfaction among dyads in general and during the past few weeks. Total scores range from 0 to 151. Higher scores indicate less distress and high adjustment. The DAS-32 will be administered via survey at 3 timepoints.

The Veterans RAND 12-item Health Survey (VR-12) is a questionnaire that will be used to measure family caregivers' health-related quality of life during the past four weeks and compared to their health one year ago. Items relate to general health perceptions, physical functioning, role limitations due to physical and emotional problems, bodily pain, energy-fatigue, social functioning and mental health. 2 separate scores are generated from responses, a "Physical Health Summary Measure (PCS-physical component score)" and a "Mental Health Summary Measure (MCS-mental component score)". The VR-12 scoring algorithm is used to score PCS and MCS based on weights derived from 877,775 responses to a Veterans RAND 36-Item Health Survey (VR-36) that was administered federally to American veterans in 1999, resulting in variable minimum and maximum score values. Higher PCS and MCS scores indicate better health. The VR-12 will be administered via survey at 3 timepoints.

Caregiver competence is measured by a 4-item Likert scale asking participants to rate feelings about their competency and performance of their caregiving role. Response options range from 4 = "very much" to1 = "not at all". Total score values range from 0 to 12 with higher scores indicating higher caregiving competence. The Caregiving Competence Scale will be administered via survey at 3 timepoints.

The Caregiver Indirect and Informal Care Cost Assessment Questionnaire (CIIQ) consists of 13 items with information including, but not limited to, work status, time missed at work, productivity, and physical and emotional caregiving duties. Responses are open-ended apart from one item using a 10-point scale ranging from 0 ("could work as usual") to 10 ("Could not work at all"). Calculations will be conducted to estimate indirect and informal caregiver costs. Total scores report cost in dollars and can range from as low as zero to any maximum number. Higher scores indicate greater financial impact due to informal care costs. The CIIQ will be coupled with a bespoke item asking about additional money fcSCI spend on themselves. To minimize concerns about recall, a one-week recall period will be used for the CIIQ and a three-month recall period will be used for the bespoke item.

The System Usability Scale (SUS) consists of a 10-item questionnaire with five response options scored on a Likert scale ranging from "Strongly agree" to "Strongly disagree." It is used to measure usability of the eHealth implementation based on participants' experience using COMPANION over the last 3 months. It will be administered only to participants in the intervention group via survey at 2 timepoints. Raw scores range from 0-40 and are algorithmically converted into meaningful SUS scores ranging from 0-100. Higher scores indicate higher perceived usability.

Optional semi-structured interviews (45-60 minutes) will be used to explore fcSCI's experience with the eHealth implementation. Interview guides will be created to ask participants to share their perspective on advantages and disadvantages of the program. Participating in the interview will only be offered to participants in the intervention group.