Date of Award
2024
Degree Type
Dissertation
Degree Name
Doctor of Philosophy in Nursing
Department
Nursing
First Advisor
Dahianna López
Second Advisor
Kimberly Arcoleo
Abstract
Schizophrenia ranks among the most debilitating psychiatric disorders across the lifespan, leading to poor recovery outcomes, high mortality rates, and a surge in comorbid health conditions (Charlson et al., 2018). When psychotic illness strikes before age 18, it follows a more complex clinical course, presents with more severe negative psychotic symptoms, and carries a greater genetic vulnerability (Armando et al., 2018; Lin et al, 2016). Children categorized with “clinical high risk for psychosis” (CHR-P), a term used to describe a prodromal phase characterized by a gradual onset and presentation of sub-threshold psychotic symptoms, experience high rates of suicidal behavior and psychiatric comorbidities (Fusar-Poli et al., 2018; Sinclair-McBride et al., 2018). There is extensive research that documents the heavy burden family caregivers experience caring for adults with psychotic illness (Caqueo-Urízar et al., 2014; Karambelas et al., 2022; Peng et al., 2022). However, less is known about the experiences of caregivers who care for youth with psychosis.
While some evidence suggests caregivers of youth with CHR-P and diagnosed with psychotic disorders (PD) experience high levels of burden in their lives as they navigate the diagnosis and treatment process with their loved ones, this research is still in its infancy and has significant limitations. To our knowledge, one study investigated the burden on caregivers of children with CHR-P, but it had limitations in scope and sample size (Carroll et al., 2022). The research on burden among caregivers of children with psychosis is primarily qualitative (Bai et al., 2020; Knock et al., 2011), includes adolescents only (McKenna et al., 2022), or has cultural differences hindering extrapolation to U.S. populations (Bai et al., 2020; Koren & Kupriyanova, 2013; Wang et al., 2020; Zhang et al., 2020).
This dissertation addresses a critical gap in understanding the experiences of caregivers supporting youth with CHR-P and PD. While research on caregiver burden for adults with psychotic illnesses is abundant, studies focusing on the unique challenges faced by caregivers of children and adolescents with these conditions are scarce. This dissertation conducted a comprehensive examination of caregiver burden through a scoping review to map the existing evidence, developing a predictive model to identify potential risk factors, and investigating the association between caregiver burden and youth suicidal behavior.
Using data from a cross-sectional study evaluating caregiving experiences in children with CHR-P and PD, we explored two aims, which resulted in three manuscripts. The first manuscript is a scoping review aimed to map the range, extent, and nature of the evidence available on caregiver burden among carers of youth with CHR-P and PD. The second manuscript aimed to construct and test an explanatory model for identifying potential predictors of caregiver burden based on an adaptation of the caregiving stress model, and the third manuscript investigates the relationship between the burden experienced by caregivers of children with psychotic symptomatology and suicidal behavior in children.
The first manuscript, a scoping review of the literature, revealed significant burden among caregivers of children with CHR-P and PD and highlighted the emotional costs of caring for these children. Three prominent themes emerged in the text reviewed: 1) characteristics of caregiver burden (types of burden, child/caregiver characteristics, group comparisons), 2) possible predictors of caregiver burden (child vs. caregiver factors), and 3) potential opportunities for intervention. In our second manuscript, we found preliminary evidence to suggest the importance of perceived social support, parenting confidence, and caregiver-child communication as targets for intervention to reduce burden and improve caregiving experiences. Furthermore, our findings suggest that despite stressors, such as suicidal behavior and psychiatric hospitalizations, modifiable factors exist to serve as protective buffers against caregiver burden. In our third manuscript, we found that nearly 75% of the youth endorsed suicidal ideation, and 32% reported having plans to take their own life, but there were no significant differences in suicidal behavior between CHR-P and PD groups. Suicidal behavior in youth did not significantly predict caregiver burden adjusting for known covariates, but caregiver relational frustration emerged as a significant potential predictor in the population. Our findings demonstrate the high level of burden experienced by caregivers of youth with CHR-P and PD and offer compelling evidence to suggest several key targets for intervention, including perceived social support, parenting confidence, caregiver-child communication, and relational frustration.
Recommended Citation
Carroll, Devon, "BURDEN AMONG CAREGIVERS OF YOUTH WITH PSYCHOTIC DISORDERS AND CLINICAL HIGH RISK FOR PSYCHOSIS" (2024). Open Access Dissertations. Paper 1719.
https://digitalcommons.uri.edu/oa_diss/1719
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