The Caregiver Strain Questionnaire

Abstract

The impact on the family of having a family member with serious emotional problems has been an area of concern as deinstitutionalization and managed care have shifted treatment to the community and primary caregiving to the family. Measures are needed to assess caregiver strain in a way that can lead to a better understanding of the phenomena, improve clinical interventions, and examine the outcomes of new treatment modalities on the client's family. In order to study the effects of this treatment shift, the Caregiver Strain Questionnaire (formerly the Burden of Care Questionnaire) was developed for use with families of children and adolescents with emotional and behavioral disorders. Findings from exploratory and confirmatory factor analyses support the existence of three related but unique dimensions of strain experienced by parents of this population. This study adds to the current body of knowledge by suggesting that subjective caregiver strain has two components, and not the single form claimed in previous research. The results also indicate that the Caregiver Strain Questionnaire is a reliable and valid scale for the measurement of caregiver strain among families of children with emotional or behavioral disorders. T HE EXPERIENCES OF PARENTS ORother caregivers of individuals with mental or physical health problems have been recognized increasingly as critical factors for influencing both the ability of those individuals to live successfully in the community and their utilization of community-based services. The mental health reform efforts of the past several decades, and the more recent move toward managed care, have shifted treatment of individuals who would previously have been cared for in hospital settings to the community. As a result, today's mental health systems rely increasingly on families. The impact has been recognized as stressful for families of both adults and children with serious mental or physical health problems, including (a) adults with schizophrenia and other severe and persistent mental disorders (Carpentier,

A Survey of Parents with Children on the Autism Spectrum: Experience with Services and Treatments

“…Topics covered by the 231-question survey included the child's ASD diagnosis, parent satisfaction with care provided during the previous year, services and treatments received during the child's lifetime and the prior 3 months, the Caregiver Strain Questionnaire, 18 the Pediatric Quality of Life Inventory, 19 the effect of the child's ASD on parents' employment, demographic information, educational resources of interest to the family, and willingness to participate in future research (Figure 1). Among the services and treatments received, we also explored complementary and alternative medicine services including chiropractic care, traditional Chinese medicine, equine therapy, and energy therapy such as Reiki, for which descriptive results are available in a separate manuscript.…”

“…Two standardized questionnaires were included in the survey: the Caregiver Strain Questionnaire 18 and the Pediatric Quality of Life Inventory. 19 The Caregiver Strain Questionnaire 18 explores problems caregivers may experience regarding time; disruption of family routines; deprivation; and trouble with neighbors, school, or the law because of a child's emotional problems.…”

“…19 The Caregiver Strain Questionnaire 18 explores problems caregivers may experience regarding time; disruption of family routines; deprivation; and trouble with neighbors, school, or the law because of a child's emotional problems. The questionnaire also addresses feelings of isolation and embarrassment, worries about the family's future, guilt, tiredness, and ASD's effect on the parents' work.…”

“…Results from the Caregiver Strain Questionnaire 18 show that parents experience disruption of personal time (42%), family social activities (33%), and family routines (32%) as a result of their child's problem behaviors ( Figure 2). Parents identified most often with feelings of worry about their child's future (67%) but felt they related well with their child (63%, Figure 3).…”

Outcomes for Youth with Severe Emotional Disturbance: A Repeated Measures Longitudinal Study of a Wraparound Approach of Service Delivery in Systems of Care

“…The CGSQ measures caregiver strain across 3 subscales: Objective Strain (e.g., Lost Work Time, Financial Hardship), Subjective Externalizing Strain (e.g., Anger, Resentment, Embarrassment), and Subjective Internalizing Strain (e.g., Worry, Guilt, Fatigue) (Brannan et al 1997). Each domain is assigned a score from 1 to 5, with higher scores indicating greater strain.…”