Table 3.
Measures used across twenty-eight studies to assess caregiver burden and psychological functioning
| Name of measure | How construct is defined | How construct is assessed by measure | Studies used in |
|---|---|---|---|
| Burden | |||
| Involvement Evaluation Questionnaire (IEQ [80];) | Stress-appraisal-coping model | 29-items across four factors: tension, supervision, worrying and urging. A total score represents overall burden. | 1, 9, 10 |
| Burden Assessment Schedule (BAS [81];) | Objective and subjective burden | 40-items across nine factors: spouse (caregiver related), physical & mental health of caregivers, external support, caregiver’s routine, support of individual, taking responsibility, other relations, individual’s behaviour, and caregiver strategy. A total score represents overall burden. | 2, 3, 19 |
| Caregiving Burden Inventory (CBI [82];) | Burden defined through the five factors assessed | 24-items across five factors: time-dependent; developmental; physical; social and emotional. | 5 |
| Family Burden Interview Schedule (FBIS [83];) | Objective burden with a subjective burden question included. |
24-items across six factors: financial burden, disruption of family routine, disruption of family leisure, disruption of family interactions, effect on physical health and mental health of relatives. One additional item assessing subjective burden. Two total scores representing objective and subjective burden. Clinician-rated. |
6, 9, 10, 13, 16, 18, 25, 28 |
| Subjective Well-being Inventory (SUBI [84];) | Subjective burden | Two sets of items assessing positive and negative assessments of well-being and subjective burden. Two total scores for positive and negative sets. | 16 |
| Zarit Burden Interview (ZBI [85];) | Subjective burden | 12-items assessing caregiver’s state of health, psychological and financial wellbeing, social life, and relationship with the individual. A total score represents overall subjective burden. | 7, 12, 26, 27 |
| Modified Caregiver Strain Index (MCSI [86];) | Caregiver strain | 13-items across six factors: social, psychological, physical, time, financial and employment. Higher scores indicate greater caregiver strain. | 15, 17 |
| Experience of Caregiving Inventory (ECI [87];) | Stress-appraisal-coping model | 66-items across ten factors: eight negative aspects of caregiving (difficult behaviours, negative symptoms, stigma, problems with services, effects on family, need for back-up, dependency, and loss) and two positive aspects of caregiving (positive personal experience and good aspects of relationship). Three total scores represent overall negative score, overall positive score, and global score. | 8 |
| Family Burden Schedule (adaptation of the Spanish adaptation of the Social Behaviour Assessment Schedule) (FBS [88];) | Objective burden, attribution level and subjective burden. | Number of items not specified. Assesses burden across three factors: objective burden evaluates change in daily functioning; level of attribution evaluates whether caregivers consider their problems related to the individual; subjective burden evaluates perception of stress related to subject’s behaviour. | 14 |
| Significant Other Scale (based on subscale of Family Evaluation Form) [89] | Objective burden | 37-item measure, with the study using a 13-item subscale described by the original measure authors as assessing objective burden. One total score representing overall burden. | 20 |
| Name of measure | How construct is defined | How construct is assessed by measure | Studies used in |
| Family Experience Inventory Schedule (FEIS [90];) | Family burden + Depression and anxiety | 28-items across five factors: violent behaviour, depression and anxiety symptoms and social isolation of the caregiver, disruption of caregiver routines, individual suicidality, and satisfaction with the quality-of-service provision. | 22 |
| Psychological Functioning | |||
| Distressing Symptom Rating Scale (DSRS [55];) | Caregiver distress | 44-items across 16 factors: depressive/negative, manic, socially disruptive, somatic, delusions/odd beliefs, hallucinations, cognitive, aggression, work, self-care, dependence, compliance, side effects, substance abuse, insight, poor rapport, and other. | 4 |
| Taiwanese Depression Questionnaire (TDQ [91];) | Presence and severity of depression | 18-items evaluating depressive symptoms over past week, calculated to obtain total depression score. | 5 |
| Beck Anxiety Inventory (BAI [92];) | Presence and severity of anxiety | 21-items summed to obtain total anxiety score. | 5, 17 |
| General Health Questionnaire (GHQ [93];) | Psychological morbidity/distress | 12-items summed up obtain total score assessing psychological distress/morbidity. | 8, 11, 26 |
| Center for Epidemiological Studies – Depression Scale (CES-D [94];) | Possibility of depression | 20-items with one total score representing overall depression. | 15 |
| Beck Depression Inventory (BDI [95];) | Presence and severity of depression | 21-items with one total score representing depression. | 17, 24 |
| National Center for Health Statistics General Wellbeing-Schedule (from the Medical History Questionnaire) [96] | Wellbeing | 22-items across six factors of caregiver wellbeing: anxiety, depression, general health, positive wellbeing, vitality, self-control. | 20 |
| Family Experience Inventory Schedule (FEIS [90];) | Family burden + Depression and anxiety | 28-items across five factors: violent behaviour, depression/anxiety symptoms and social isolation of the caregiver, disruption of caregiver routines, individual suicidality, and satisfaction with the quality-of-service provision. | 22 |
| Self-Reported Questionnaire-20 (SRQ-20 [97];) | Presence of common mental disorders (anxiety and depression) | 20-item screening tool with one total score designed to assess the presence of symptoms of common mental disorders, such as anxiety and depression. | 23 |
| Short Form-36 (SF-36 [98];) | Quality of life (including mental health outcomes) | 36-items across eight factors: physical functioning, social functioning, role-physical problems, role-emotional problems, mental health, vitality, bodily pain, and general health. Two component summary scores representing physical and mental overall score. | 21, 24 |
|
World Health Organization Quality of Life Instrument – BREF (WHOQOL-BREF [99];) |
Quality of life (including psychological outcomes domain) | 26-items divided into four domains: physical, psychological, social relationships and environment, along with two general questions of quality of life. Total scores range from 0 to 100 and the higher the value of scores, the higher quality of life. | 24, 25 |
| Hospital Anxiety and Depression Inventory (HADS [100];) | Anxiety and depression | 14-item measure of anxiety and depressive symptom severity. One total score is calculated with higher scores representing greater symptom severity. | 25 |
| Depression, Anxiety and Stress Scale (DASS [101];) | Depression, anxiety, and stress | 42-item measure of three 14-item subscales of depression, anxiety, and stress. Three total scores representing each domain are calculated measured from mild to severe severity. | 27 |