Usability, Acceptability, and Preliminary Effectiveness of a Peer-Delivered and Technology-Supported Mental Health Intervention for Family Caregivers of People With Dementia: Field Usability Study.

BACKGROUND: Family caregivers of people with dementia are critical to the quality of life of care recipients and the sustainability of health care systems but face an increased risk of emotional distress and negative physical and mental health outcomes. OBJECTIVE: The purpose of this study was to examine the usability, acceptability, and preliminary effectiveness of a technology-based and caregiver-delivered peer support program, the Caregiver Remote Education and Support (CARES) smartphone or tablet app. METHODS: A total of 9 adult family caregivers of people with dementia received the CARES intervention, and 3 former family caregivers of people with dementia were trained to deliver it. Quantitative data were collected at baseline and at the end of the 2-week field usability study. Qualitative data were also collected at the end of the 2-week field usability study. RESULTS: The field usability study demonstrated that a 2-week peer-delivered and technology-supported mental health intervention designed to improve burden, stress, and strain levels was experienced by former and current family caregivers of people with dementia as acceptable. Current family caregivers rated CARES as above average in usability, whereas the caregiver peer supporters rated CARES as marginally usable. CARES was associated with non-statistically significant improvements in burden, stress, and strain levels. CONCLUSIONS: This field usability study demonstrated that it is possible to train former family caregivers of people with dementia to use technology to deliver a mental health intervention to current family caregivers of people with dementia. Future studies would benefit from a longer trial; a larger sample size; a randomized controlled design; and a control of covariables such as stages of dementia, years providing care, and severity of dementia symptoms.

Lived Experience-Led Research Agenda to Address Early Death in People With a Diagnosis of a Serious Mental Illness: A Consensus Statement.

Importance: People with serious mental illness (SMI), defined as a diagnosis of schizophrenia spectrum disorder, bipolar disorder, or disabling major depressive disorder) die approximately 10 to 25 years earlier than the general population. Objective: To develop the first-ever lived experience-led research agenda to address early mortality in people with SMI. Evidence Review: A virtual 2-day roundtable comprising 40 individuals convened on May 24 and May 26, 2022, and used a virtual Delphi method to arrive at expert group consensus. Participants responded to 6 rounds of virtual Delphi discussion via email that prioritized research topics and agreement on recommendations. The roundtable was composed of individuals with lived experience of mental health and/or substance misuse, peer support specialists, recovery coaches, parents and caregivers of people with SMI, researchers and clinician-scientists with and without lived experience, policy makers, and patient-led organizations. Twenty-two of 28 (78.6%) of the authors who provided data represented people with lived experiences. Roundtable members were selected by reviewing the peer-reviewed and gray literature on early mortality and SMI, direct email, and snowball sampling. Findings: The following recommendations are presented in order of priority as identified by the roundtable participants: (1) improve the empirical understanding of the direct and indirect social and biological contributions of trauma on morbidity and early mortality; (2) advance the role of family, extended families, and informal supporters; (3) recognize the importance of co-occurring disorders and early mortality; (4) redefine clinical education to reduce stigma and support clinicians through technological advancements to improve diagnostic accuracy; (5) examine outcomes meaningful to people with an SMI diagnosis, such as loneliness and sense of belonging, and stigma and their complex relationship with early mortality; (6) advance the science of pharmaceuticals, drug discovery, and choice in medication use; (7) use precision medicine to inform treatment; and (8) redefine the terms system literacy and health literacy. Conclusions and Relevance: The recommendations of this roundtable are a starting point for changing practice and highlighting lived experience-led research priorities as an option to move the field forward.