Creating a Dementia Caregiver Assessment Tool for Home Health: User-Centered Development,Refinement,and Content Validity Testing

Abstract

In the United States, home health care (HH) provides skilled nursing, therapy, and aide services delivered in patients’ homes. One-third of HH patients have diagnosed dementia and these individuals rely heavily on support from family and unpaid caregivers during HH care. Yet, caregiving context is not systematically assessed in HH, presenting a barrier to high-quality care for patients with dementia. Partnering with a major HH agency, we developed a dementia caregiver assessment tool designed to fit within existing HH clinical workflows. We engaged HH administrators, frontline clinicians, and caregivers of HH patients with dementia in a participatory, user-centered approach to intervention development. This process included 3 stages leading to the final assessment instrument: (1) development, (2) refinement, and (3) content validity testing. Research activities included structured focus groups with HH clinicians (n = 18), recurring co-design workgroup with administrators and clinicians (n = 19), and cognitive interviews with clinicians (n = 10) and caregivers (n = 11). The final assessment tool includes 10 items across three domains: (1) “who” is helping the patient and “when” they are in the home (caregiver identity and availability), (2) “what” types of help they are providing (caregiving tasks), and (3) “how” they are coping (caregiver burden). The final assessment received a Scale-Content Validity Index score of 0.96 from clinicians and caregivers, indicating excellent content validity. This assessment instrument is now poised for evaluation within a “real-world” HH clinical context to assess its impact on care delivery and caregiver experiences.