Participatory Action research: Parent Caregivers’ Experiences During Intake Sessions for Children with Neuropsychiatric Disorders

Introduction: Primary caregivers play a crucial role in their mentally ill children’s recovery. Professionals often meet them during intake sessions in various settings (hospital, clinic, community service). These sessions aim to gather patient information for diagnosis, assess their condition, and define a treatment plan. Caregivers attend intakes to secure suitable support and treatments. This study aimed to explore caregivers’ intake experiences for their mentally ill children.

Methods: We used participatory action research (PAR) which views research participants as subjects with a voice and knowledge, contributing to the research process. Here we conducted 3 focus groups of 21 primary caregivers, while 32 social work students filled-in reflection-diaries about the impact of the research process on their perceptions. The data was analyzed in thematic analysis and then introduced to the students, the caregivers and other SWs eliciting discussion and cross-validation of the findings.

Findings: The analyses revealed a host of challenges in intake experiences of primary caregivers. These included mainly negative experiences, ranging from mild distress to highly hurtful and rejecting traumatic events. The main findings include feeling disorientated; feeling ignored or blamed by professionals and more. Some parents also described positive intake experiences and suggested solutions and ways of getting supports. Social work students were highly impacted by involvement in the research processes. They reported novel awareness to this issue, developing sensitivity to the negative experiences of primary caregivers. 

Conclusions:

Intakes serve as the gateway to diagnosis, treatment and rehabilitation for often challenging mental health conditions with a lengthy non-linear process of illness episodes. The study findings reveal negative experiences of primary caregivers. The PAR enabled caregivers to be heard as their knowledge affected future social workers in their awareness and ability to address caregivers. This study reveals how conducting PAR leads to co-creating new knowledge for improved recovery-oriented intake.