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Stakeholder Perspectives on Sustaining Involvement in Schizophrenia Care
Ellen P. Fischer, PhD MPA BA
Central Arkansas Veterans Healthcare System Eugene J. Towbin Healthcare Center, Little Rock, AR
No. Little Rock, AR
Funding Period: September 2001 - June 2005
The effectiveness of treatments for schizophrenia depends on ongoing involvement in care. The field still knows relatively little about how to motivate individuals with schizophrenia to remain in care over time under usual outpatient-care conditions.
Specific aims were to: (1) identify predictors and correlates of long-term consumer involvement in care through quantitative analysis of an existing longitudinal database, (2) identify additional factors consumers considered important in determining long-term involvement through naturalistic qualitative interviews, (3) expand understanding of the family's role in sustaining long-term consumer involvement in care through qualitative interviews, and (4) compare predictors and correlates of long-term consumer involvement in care in VA and non-VA facilities.
We used polychotomous logistic regression to analyze an existing longitudinal database for 258 individuals with schizophrenia to identify modifiable characteristics that differentiated consumers regularly involved in care from those who cycle in-and-out of care or are in care only infrequently. The dataset was also used to identify potential consumer participants for the study's qualitative component. In depth interviews were conducted with 32 consumers (16 VA) and 27 consumer-designated family members to elicit their views on factors affecting long-term involvement. Qualitative data were analyzed using content analysis and constant comparison. The influence of identified themes was explored via analysis of the existing longitudinal dataset.
In qualitative interviews, veterans most frequently mentioned a strong, positive relationship with a provider (90%), instrumental support from programs, family and friends (82%), and their own behaviors and attitudes (69%) as facilitating factors. They most often cited their own behaviors and attitudes (94%), lack of access and instrumental support (75%/56%), and problematic relationships with providers (56%) as barriers. While veterans most often attributed attrition from care to their own behaviors, including substance abuse, they most often credited retention in care to positive provider relationships and behaviors. In quantitative analyses of data from the larger sample of 258 individuals with schizophrenia, after adjusting for insight, cognitive performance, residence (rural/urban) and gender, comorbid substance abuse and the interaction between substance abuse and family support were significantly (p<0.05) associated with longitudinal patterns of service use. Comborbid substance abuse predicted less desirable utilization patterns. Stratified analyses indicated that weekly family support substantially reduced the adverse effect of substance abuse on consumers' patterns of service use, especially for consumers living in rural areas.
Our findings reinforce the importance of the recovery-oriented transformation in VA mental health care. Veterans' emphasis on being listened to and respected as experts on their own illness is consistent with the recovery principle of consumer-driven shared decision-making. The moderating effect of family support on the adverse impact of substance abuse on consumers' involvement in care supports VA efforts both to increase services for families and to increase their involvement in the treatment process.
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DRA: Mental, Cognitive and Behavioral Disorders, Health Systems
DRE: Treatment - Observational
Keywords: Behavior (patient), Caregivers – not professionals, Schizophrenia
MeSH Terms: Caregivers, Schizophrenia, Behavior