Developing a Pain Identification and Communication Toolkit

Not Applicable

Terminated

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.

Recruitment & Eligibility

Inclusion Criteria

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:

Healthcare professionals:

Currently providing clinical services to persons with dementia and/or chronic pain
Has provided these clinical services for at least 1 year

Arm && Interventions

Group	Intervention	Description
Information Pamphlet	Information Pamphlet	Informational pamphlet about pain in dementia and a link to the Alzheimer's Association website.
PICT Workbook	PICT Workbook	PICT Workbook components includes: a) training using an observational assessment tool to detect pain in PWD, b) coaching and feedback by a research nurse in effective strategies for communicating with providers about PWD's pain, c) future planning for what steps to take when a pain symptom is detected, and d) updating the caregiver's skill set through routine practice.

Primary Outcome Measures

Name	Time	Method
Feasibility, as Measured by the Number of Participants in the Intervention Condition Who Completed All Sessions	Post-intervention, 3 months
Feasibility, as Measured by the Number of Participants Recruited	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	Post-intervention, 3 months

Secondary Outcome Measures

Name	Time	Method
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