There are no direct benefits to participants from taking part in this study. However, participants may value the opportunity to share their experiences with caregiving and mental health. More broadly, a better understanding of these experiences may help service providers and policymakers develop policies that expand disabled adults’ choice and control over their caregivers, strengthen confidential options for reporting mistreatment, and improve access to backup care and emergency attendant services.

The study is expected to involve minimal risk. The primary foreseeable risk is emotional discomfort when answering questions about sensitive topics, including caregiver mistreatment, depression, anxiety, and suicidal thoughts. Participants may skip questions they do not wish to answer and may stop participating at any time.

There is also a potential risk to privacy or confidentiality if study data are accessed without authorization. To reduce this risk, data will be stored in a secure Oregon State University Google Drive folder accessible only to the study’s principal investigators. The folder will be maintained in accordance with Oregon State University’s Data Security Level 2 requirements. In addition, participants’ responses will be anonymized so that they are not linked to identifying information. Findings from the anonymized data may be included in a research paper submitted for publication in a social or health psychology journal.