Development and evaluation of a healthcare decision-making intervention for African American parent-adult daughter dementia dyads: a mixed-methods study protocol.

Abstract

Introduction: There is a higher proportion of African American care partners due to African American older adults having more than twice the prevalence of Alzheimer's disease and related dementias (ADRD) compared with non-Hispanic white older adults in the USA. African American adult daughters are the largest group of care partners of African American persons living with ADRD. Within this role, they are faced with navigating multiple health-related decisions to optimise the quality of life of their parent with ADRD, which can negatively influence their own quality of life. This study is guided by three conceptual frameworks: National Institute on Aging's Health Disparities Research Framework, Black Family Socio-Ecological Context Model and Superwoman Schema. The purpose of this study was to develop a structured culturally responsive prototype intervention that will improve the healthcare decision-making self-efficacy and quality of life of African American parent-adult daughter dementia dyads. The prototype intervention will be piloted in a single-group clinical trial to evaluate feasibility, acceptability and preliminary efficacy.

Methods and analysis: This study will be conducted in two phases using an explanatory sequential mixed-methods design, wherein qualitative data collection follows quantitative data collection to explain the findings. In the first phase, the quantitative data collection will examine the behavioural, sociocultural and environmental lifecourse influences on healthcare decision-making self-efficacy and the quality of life of 70 African American parent-adult daughter dementia dyads (ie, persons living with ADRD and their adult daughter care partners). The qualitative data collection will consist of a nested sample of 15 dementia dyads and focus on the decision-making processes that affect current and future healthcare use for the parents living with ADRD. Further, this study will explore how these processes influence the quality of life of both members. In phase 2, integrated findings from phase 1 will provide the basis for the development of the prototype intervention using design thinking and intervention mapping with key informants and community advisory board oversight. Once the prototype intervention is developed, a clinical trial will be conducted. This trial will enrol a new sample of 20 African American parent-adult daughter dementia dyads using a pretest-post-test design.

Ethics and dissemination: The first phase of the study has been approved by the Emory University Institutional Review Board and is registered on ClinicalTrials.gov (NCT05139290). This study will contribute to the development of a structured culturally responsive prototype intervention for African American parent-adult daughter dementia dyads. The findings will determine whether a larger randomised controlled trial is warranted. Results of the research will be disseminated in both academic and community settings.

Trial registration number: NCT05139290.