Assessing the Impact of Caring for a Person with Schizophrenia: Development of the Schizophrenia Caregiver Questionnaire

Abstract

BackgroundThe responsibilities of caring for a person with schizophrenia may significantly impact informal caregivers’ lives. The Zarit Burden Interview (ZBI) was originally developed to assess burden among caregivers of people with Alzheimer’s disease.ObjectiveThis research was conducted to inform the development of a revised version of the ZBI, relevant to caregivers of people with schizophrenia.MethodsBased on published qualitative research, the questionnaire was reviewed and modified in accordance with industry-standard guidelines. The resulting questionnaire [the Schizophrenia Caregiver Questionnaire (SCQ)] was then completed by 19 caregivers during cognitive debriefing interviews to assess understanding, relevance and comprehensiveness.ResultsReview of the ZBI resulted in a number of operational changes to improve face validity and potential sensitivity. Further questions were added based on key concepts identified in existing literature and minor phrasing alterations were made to improve content validity. Findings from caregiver interviews supported the content validity of the SCQ.ConclusionThe SCQ provides a comprehensive view of caregivers’ subjective experiences of caregiving and demonstrated strong face and content validity. The questionnaire will be important in both clinical assessment and evaluating the efficacy of interventions designed to reduce or alleviate caregiver burden. Future research will seek to establish the psychometric validity of the questionnaire.

Assessment of the consequences of caregiving in psychosis: a psychometric comparison of the Zarit Burden Interview (ZBI) and the Involvement Evaluation Questionnaire (IEQ)

“…At time of writing of our study, an adaptation of the original ZBI to specifically evaluate caregiver burden in psychoses was published [15]. This revised version (the SCQ) modifies some expressions, introduces a recall period, and incorporates new items about aspects related with caregiver burden.…”

“…This revised version (the SCQ) modifies some expressions, introduces a recall period, and incorporates new items about aspects related with caregiver burden. It presents face and content validity [15], and is now beginning to be tested in multicentre studies with promising results [28]. We acknowledge this step forward regarding the evaluation of specific caregiving consequences in schizophrenia.…”

“…It has been extensively validated in caregivers of frail old people with neuropsychiatric disorders [14], having become a gold-standard in this field. Being arguably the most widely used measure of caregiver burden [15], it has also been used in schizophrenia research to describe the experiences of caregivers [16, 17] and to assess the efficacy of family psychosocial interventions [18–21]. However, most research with the ZBI in schizophrenia has been conducted in the Hispanic or non-Western world [17–26] and the validity and reliability of the ZBI in schizophrenia remains to be established [15, 27].…”

“…Being arguably the most widely used measure of caregiver burden [15], it has also been used in schizophrenia research to describe the experiences of caregivers [16, 17] and to assess the efficacy of family psychosocial interventions [18–21]. However, most research with the ZBI in schizophrenia has been conducted in the Hispanic or non-Western world [17–26] and the validity and reliability of the ZBI in schizophrenia remains to be established [15, 27]. This led to the recent issue of the Schizophrenia Caregiver Questionnaire (SCQ), adapting the ZBI to this specific clinical context [15] and in different cultures [28, 29].…”

“…However, most research with the ZBI in schizophrenia has been conducted in the Hispanic or non-Western world [17–26] and the validity and reliability of the ZBI in schizophrenia remains to be established [15, 27]. This led to the recent issue of the Schizophrenia Caregiver Questionnaire (SCQ), adapting the ZBI to this specific clinical context [15] and in different cultures [28, 29]. Overall, given its widespread - albeit sometimes unspecific - use across health conditions, the original ZBI has been considered a generic measure of burden [29–31].…”