Health enSuite Caregivers: an App-based Treatment for Distressed Caregivers of Persons With Moderate Dementia
- Conditions
- Caregiver Burnout
- Registration Number
- NCT04944420
- Lead Sponsor
- IWK Health Centre
- Brief Summary
Health enSuite Caregivers is an e-health program designed to meet some of the most common needs of caregivers of persons with dementia, including information about dementia and dementia care, caregivers' emotional health, formal or informal help received from others (6). It also recommends specific strategies to promote wellbeing and provides tools to help caregivers implement these strategies in their everyday lives. Health enSuite Caregivers is available online and as a smartphone app. Its development was informed by reviews of caregivers' needs and existing commercially available apps (6,7). A systematic search of commercially available smartphone applications for caregivers found that many apps did not consider each caregiver's unique needs, and were limited to psychoeducational content (no tools for self-management)(7). Furthermore, most existing programs have not been rigorously tested or lack evidence to support their effectiveness.
- Detailed Description
As the Canadian population ages, the demand for informal caregivers is expected to increase. Currently, an estimated 8 million Canadians provide unpaid assistance and ongoing care to family members and friends in need of support due to physical, cognitive, or mental health conditions (1). Challenges associated with being an informal caregiver vary based on a number of factors including how much time is involved, the health of the person being cared for, and the care needs. Although all caregivers may experience distress, caregivers of people with dementia are at especially high risk for psychological distress and poor health outcomes (2). Nearly half of the individuals who are providing care for someone with dementia experience symptoms of distress (3).
It is important to provide caregivers with information and support so that they can manage these demands without compromising their own wellbeing. However, existing programs for caregivers are relatively limited (4). Primary care providers play an important role in supporting caregivers of people with dementia (5); however, there is a lack of effective, easily accessible programs for primary healthcare providers to recommend to a distressed caregiver of someone with dementia. We developed Health enSuite Caregivers as a potential solution to this problem.
Recruitment & Eligibility
- Status
- NOT_YET_RECRUITING
- Sex
- All
- Target Recruitment
- 400
Not provided
Not provided
Study & Design
- Study Type
- INTERVENTIONAL
- Study Design
- PARALLEL
- Primary Outcome Measures
Name Time Method Carer wellbeing Baseline assessment, 2 months post randomization, 5 months post randomization Carer wellbeing in terms of emotional health and interpersonal relationships will be assessed as the primary outcome measure in this study using the Carer Wellbeing and Support Scales (CWS(9). It is recommended as the most appropriate instrument for the assessment of quality of life in informal carers of people with dementia (10). The CWS evaluates the multiple facets of well-being of people caring for someone with dementia. The aggregate of the responses to the questions under "your role as a carer", "your relationship with the person you care for", "your relationship with family and friends" and "your emotional well-being" will be used as the primary outcome in this RCT as these are the forms of wellbeing Health enSuite Caregivers is hypothesized to effect most strongly.
- Secondary Outcome Measures
Name Time Method Overall carer wellbeing and specific facets of carer welling Baseline assessment, 2 months post randomization, 5 months post randomization Responses on the CWS will be used to compute several secondary outcomes that may be affected by Health enSuite Caregivers.
* Total carer wellbeing (sum of all 33 items)
* Your role as a carer (items 1-5)
* Relationship with the PWD (items 6-11)
* Relationships with friends and family (items 12-15)
* Emotional wellbeing (items 21-26)
* Financial wellbeing (items 16-18)
* Physical health (items 19-20)
* Stigma and discrimination (item 27)
* Personal safety (item 28-29)
* Safety of PWD (items 30-32)Self-efficacy Baseline assessment, 2 months post randomization, 5 months post randomization Caregiver self-efficacy will be measured using the family caregivers' self-efficacy for managing dementia scale (11). It measures the degree of confidence caregivers have about their ability to complete necessary caregiving tasks. It includes 10 items and is scored based on a 10-point Likert scale from 1 ("not at all certain") to 10 ("very certain"). This scale has been widely used in studies of caregivers of people with dementia and has been found to have good internal consistency (11-13).
Psychological distress Baseline assessment, 2 months post randomization, 5 months post randomization The Distress Questionnaire-5 (DQ-5) (18) will be used to assess psychological distress among caregivers. This 5-item measure captures general emotional distress and has demonstrated strong psychometric properties. We hypothesize that participants assigned to the intervention group will report lower levels of psychological distress at both 2- and 5-months post-randomization compared to participants in the control group. Specifically, DQ-5 scores are expected to decrease from baseline to follow-up in the intervention group, reflecting a reduction in emotional distress over time.