Developing a Pain Identification and Communication Toolkit for Family Caregivers of Persons With Dementia
Overview
- Phase
- Not Applicable
- Intervention
- Not specified
- Conditions
- Dementia
- Sponsor
- Weill Medical College of Cornell University
- Enrollment
- 85
- Locations
- 1
- Primary Endpoint
- Feasibility, as Measured by the Number of Participants in the Intervention Condition Who Completed All Sessions
- Status
- Terminated
- Last Updated
- 3 years ago
Overview
Brief Summary
The proposed research will develop, refine, and pilot test the Pain Identification and Communication Toolkit (PICT), an intervention to help family caregivers of community-dwelling persons with dementia identify pain symptoms and communicate those symptoms to health care providers. Informed by self-efficacy theory, PICT will include: a) training in administering an observational assessment tool to identify pain in persons with dementia, b) coaching in effective communication about the person with dementia's pain symptoms, c) future planning for steps to take when pain is detected, and d) updating caregivers' skills through routine practice with the pain assessment tool. All components will be vetted and iteratively field-tested with a sample of racially and ethnically diverse caregivers of community-dwelling persons with dementia and health care providers. A two-group pilot randomized trial will examine the acceptability, feasibility, and preliminary impact of PICT on caregivers' initiation of pain-related communication with health care providers.
Investigators
Eligibility Criteria
Inclusion Criteria
- •Family caregiver
- •Age 21 or older
- •English speaking
- •Cognitively intact
- •Provides at least 8 hours of care per week to a person with dementia and pain
- •Has provided care for at least 6 months
Exclusion Criteria
- •Paid caregiver
- •Age 20 or younger
- •Non-English speaking
- •Cognitively impaired
- •Does not provide at least 8 hours of care per week to a person with dementia who also has a pain diagnosis
- •Has not provided care for at least 6 months
- •Currently enrolled in hospice
- •The patient to whom the caregiver provides assistance is in enrolled in hospice
- •Care recipient does not have dementia diagnosis or pain diagnosis
- •For field test and interview phases:
Outcomes
Primary Outcomes
Feasibility, as Measured by the Number of Participants in the Intervention Condition Who Completed All Sessions
Time Frame: Post-intervention, 3 months
Feasibility, as Measured by the Number of Participants Recruited
Time Frame: Baseline
Acceptability, as Measured by the Number of Participants Who Report That the Intervention Was "Very Effective" or "Moderately Effective" in Helping Them Feel More Confident in Their Ability to Communicate Pain to Healthcare Providers
Time Frame: Post-intervention, 3 months
Secondary Outcomes
- Caregiver Initiated Pain-related Communication, as Measured by the Number of Caregivers Who Report Making Contact With Any of the Care Recipients' Health Care Providers to Discuss Pain-related Concerns(Baseline, Post-intervention-3 months)