Family caregivers of individuals with spinal cord injury (SCI) provide the majority of care and are at high risk of experiencing caregiver burden, which not only impacts caregivers' own wellbeing, but also their ability to respond to patients' needs. Health education using online approaches (eHealth) has the potential to improve quality of care, enhance communication between health care users and providers, reduce costs and increase access to existing knowledge and education for family caregivers. Here, the investigators propose a research study to assess the quality of the eHealth program. The findings of this study will lead to the refinement of the eHealth program.
People with spinal cord injury (SCI) experience an irreversible neurological impairment. Each year there are more than 17,000 and 3,500 new cases of SCI in the United States and Canada, respectively. The estimated lifetime health care and direct economic cost that SCI imposes is between $1.6m and $3m (CAD) per person. However, this number is substantially higher when unpaid care provided by family caregivers is considered. Family caregivers of individuals with SCI provide the majority of care, from assistance with activities of daily living to managing finances. Family caregivers report negative social and health-related consequences such as difficulties in maintaining a social life or full-time employment. Family caregivers also tend to ignore their own mental and physical health needs. The burden and distress caused by caregiving responsibilities not only impacts caregivers, but also caregivers' ability to respond to the patients' needs. Therefore, it is essential to better understand and address the needs and challenges faced by family caregivers. In preliminary work conducted to explore these issues, the investigators examined the needs and challenges of family caregivers of individuals with SCI through conducting a systematic review, an online survey and semi-structured interviews. Working with end-users partners and building on this line of research, the investigators aim to provide the information and resources required and requested by family caregivers to address their needs via an eHealth tool. Through this needs-based technology intervention, the investigators' goal is to improve the physical and psychological wellbeing of family caregivers of individuals with SCI and, ultimately, to improve the well-being of the individuals with SCI. In addition, the investigators will investigate patterns of health care use among family caregivers and individuals with SCI as a means to evaluate the impact of the intervention.
Study Type
INTERVENTIONAL
Allocation
RANDOMIZED
Purpose
TREATMENT
Masking
DOUBLE
Enrollment
40
COMPANION consists of online, self-paced educational modules with information on a range of topics such as providing medical care, applying for financial aid and home aid, working on the relationship with the care recipient, dealing with mental health issues, and learning life skills.
Family caregivers' subjective burden as assessed by the Zarit Burden Interview
The 12-item Zarit Burden Interview uses a 5-point scale to measure family caregivers' subjective burden by asking participants how often they experience certain feelings. Individual responses range from 0 (never) to 4 (nearly always) and are added to generate a total score. Total scores can range from a minimum of 0 to a maximum of 48. A total score ranging between 0-10 indicates no to mild burden, 10-20 indicates mild to moderate burden, and \>20 indicates high burden. The Zarit Burden Interview will be administered via survey at 3 timepoints.
Time frame: 0 months, 3 months, and 6 months
Participants' objective burden as assessed by the Dutch Objective Burden Inventory
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.
Time frame: 0 months, 3 months, and 6 months
Participants' distress as assessed by the Depression, Anxiety and Stress Scale
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.
Time frame: 0 months, 3 months, and 6 months
Participants' relationship quality satisfaction as assessed by the Dyadic Adjustment Scale
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.
Time frame: 0 months, 3 months, and 6 months
Participants' health-related quality of life as assessed by the Veterans RAND 12-item Health Survey
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.
Time frame: 0 months, 3 months, and 6 months
Caregiver competence as assessed by the Caregiving Competence Scale
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.
Time frame: 0 months, 3 months, and 6 months
Caregiver costs as assessed by the Caregiver Indirect and Informal Care Cost Assessment Questionnaire
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.
Time frame: 0 months, 3 months and 6 months
Participants' opinion regarding the usability of the implementation as assessed by the System Usability Scale
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.
Time frame: 3 months and 6 months
Participants' experience using the implementation as assessed by a qualitative interview
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.
Time frame: 6 months
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