Knowledge, Beliefs, and Experiences With Mental Health Services and Help-Seeking in People With Aphasia and Care Partners

Abstract

Purpose: Supporting psychological well-being in persons with aphasia (PWA) can improve social and health outcomes; however, PWA and their care partners (CPs) are often not receiving mental health support. Previous research explores this from the perspective of health care professionals. Aims: The aim of this study was to examine knowledge, beliefs, and experiences related to mental health services directly from PWA and CPs. Method: The study included 11 PWA and 11 CPs. Participants completed a guided survey (virtual) with opportunities for elaboration related to the knowledge, beliefs, and experiences of mental health. Results: There was variability in personal preferences for referrals, types of coping strategies, and confidants for general thoughts and feelings and those specific to aphasia. PWA identified health care professionals as people to share thoughts and feelings, whereas CPs chose family and friends more often. Both CPs and PWA reported communication difficulty and finding a counselor as “sometimes” preventing access to services but cited fear and trust as “always” preventing access. Conclusions: Knowledge, beliefs, and experience with help-seeking and mental health services are personal and variable. Assessing barriers unique to living with aphasia, such as communication challenges and locating a suitable counselor, must also be considered within more complex and personal barriers of fear and trust that are consistently reported in the general public. Health professionals across the continuum of aphasia care need to understand the communication challenges of living with aphasia in tandem with understanding individual differences to personalize approaches to mental health services and help-seeking.