Affect, Social Support, Ventilators, Mechanical
Conditions
Brief summary
Ventilator assisted individuals (VAIs) living at home are frail and generally cannot perform most daily activities. Although these individuals prefer to live at home, the family members who care for them often experience stress and poor health. Peer support can mitigate health declines by decreasing caregivers' isolation/stress and increasing their sense of control. However, no peer support programs are designed to meet these caregivers' complex and unique needs. Online support delivery is especially beneficial for caregivers given the geographic and time limitations they face. The proposed research aims to develop and conduct an RCT of online peer support program for VAI caregivers. A group of caregivers will be trained to act as peer mentors. This training program will be evaluated for its impact on caregivers' mentoring abilities. At the end of the 12-week program, caregiving participants will be asked about the online delivery of the program, how helpful/satisfactory it was, and if it affected their health and well-being. The health outcomes of the control and intervention group will be compared. This peer support program can improve the well-being of caregivers and allow them to better care for their family members.
Interventions
BEHAVIORALOnline Peer Support Program
The online peer support program will entail: 1) Informational links; 2) A discussion forum (open to all participants and allowing for asynchronous contact between caregivers & peer mentors); 3) A weekly live chat; 4) Private messaging (audio, video, and text options); and 5) Ask-a-mentor (A short video/blurb profiling each caregiving mentor will be posted including details such as gender, age, duration of care, relationship to care-recipient, and illness that care-recipient suffers from). Caregiving participants can then self-match to a peer mentor they feel is best-positioned to address their support needs.
Sponsors
University of Toronto
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
1\) age = 18 years; 2) primary family caregiver for a VAI living in the community; 3) able to speak and read English; and 4) access to a computer and a reliable internet connection.
Exclusion criteria
1\) currently experiencing severe depression as indicated by a score of 40 or higher on the Centre for epidemiological studies short depression scale (CES-D 10).
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Change in Positive and Negative Affect | Change from baseline at 12 weeks | Positive & Negative Affect Scale (PANAS): 10 items \[Score: 10-50\]; higher scores indicate more psychological wellbeing |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Feasibility: Participation frequency | 12 weeks | Number of times that mentors and caregiving participants contribute to weekly chat and discussion forums over the course of 12 weeks. ). |
| Feasibility: Recruitment rates | Through study completion, an average of 1 year | Consent rate for participation (i.e. proportion of individuals approached who consent to participate) |
| Feasibility: Attrition | 12 weeks | Attrition rates (i.e. number of mentors and caregiving participants who participate in entire peer support program and complete required study questionnaires). |
| Change in Coping | Change from baseline at 12 weeks | Brief Coping Orientations to Problems Experienced (COPE) Inventory: 28 items representing problem and emotion-based coping. Higher scores on either subscale represent greater use of that coping style |
| Feasibility: Participation rate | 12 weeks | Proportion of mentors and caregiving participants who contribute to weekly chats and discussion forums for all 12 weeks of the program |
| Change in Caregiving Impact | Change from baseline at 12 weeks | Caregiving Impact Scale: 14 items \[Score: 0-84\]; higher scores suggest providing care interferes with caregivers' abilities to maintain participation in valued activities |
| Change in Mastery | Change from baseline at 12 weeks | Pearlin Mastery Scale: 7 items \[Score: 7-28\]; higher scores indicate a greater sense of control over life |
| Change in Personal Gain | Change from baseline at 12 weeks | Personal Gain Scale: 4 items \[Score: 4-16\]; higher scores indicate caregiver discovery of inner strengths due to providing care |
| Change in Depression | Change from baseline at 12 weeks | ) Centre for Epidemiological Studies Short Depression Scale (CES-D 10): 10 items \[Score: 0-30\]; higher scores sores indicate depression severity |
Countries
Canada
Contacts
Primary ContactMarina B Wasilewski, PhD
Backup ContactLouise Rose, PhD
Outcome results
None listed