Wisconsin Quality of Life Caregiver Questionnaire

Abstract

The Wisconsin Quality of Life Caregiver Questionnaire (WQOL-CQ) is a specialized psychological scale developed in 1996 by Marion A. Becker, Bret R. Shaw, and Lisa M. Reib. It is designed to measure the experiences, burden, and perceived Quality of Life (QoL) of informal caregivers who support individuals living with severe and persistent mental illness. The instrument is comprehensive, focusing not only on the objective support provided (e.g., assistance with daily tasks and behavior management) but also on the caregiver’s subjective satisfaction, interaction with mental health professionals, and assessment of the patient’s progress toward treatment goals. The WQOL-CQ is a critical tool for evaluating the collateral impact of chronic psychiatric conditions on family systems and for optimizing community support program delivery.

Keywords

Caregiver burden, Quality of Life (QoL), mental health services, severe mental illness, psychological assessment, family support, psychiatric rehabilitation, Wisconsin.

Authors

Marion A. Becker, Bret R. Shaw, Lisa M. Reib.

Purpose

The primary purpose of the WQOL-CQ is to provide a structured and detailed method for researchers and clinicians to assess the multi-faceted demands placed upon informal caregivers of individuals with severe mental illness. By quantifying the level of assistance required and the emotional response to providing that support, the questionnaire helps isolate specific areas of stress or burden that require intervention.

A secondary, but crucial, function of the instrument is the evaluation of the mental health delivery system from the caregiver’s perspective. The WQOL-CQ specifically probes the extent to which caregivers feel supported, informed, and involved by health care professionals. This feedback is essential for improving communication strategies and ensuring that family members are integrated as partners in the patient’s long-term recovery and treatment plan, particularly within Assertive Case Management models.

Construct

The WQOL-CQ measures the construct of Caregiver Experience and Burden in Serious Mental Illness, which is understood as a composite measure encompassing objective effort, subjective satisfaction, and system interaction. The questionnaire operationalizes this construct across several key domains:

• Background and Utilization: Demographic data, history of patient hospitalization, and types of community services received (e.g., Job/Vocational Training, Day Treatment).
• System Interaction: The caregiver’s comfort level and satisfaction with communicating with mental health professionals, including questions regarding information needs and shared decision-making power.
• Instrumental and Daily Living Support: The quantity of support or supervision provided for routine tasks such as preparing meals, managing money, and maintaining personal hygiene.
• Behavioral Management: The level of support required to control specific challenging behaviors, including socially embarrassing behavior, attention-seeking behavior, and threats of suicide or violence.
• Perceived Patient Quality of Life: The caregiver’s subjective rating of the patient’s overall QoL, functional abilities (Activity, Daily Living, Health, Support, Outlook), and achievement of personalized treatment goals.

Validity

While the provided source content is a sample and lacks specific psychometric tables, the instrument demonstrates strong face and content validity. The items comprehensively cover recognized stressors in caregiving for individuals with severe mental illness, including the often-overlooked difficulties of managing behavioral disturbances and navigating complex mental health systems. The structure aligns well with established theoretical models of caregiver burden, which typically distinguish between objective demands (time spent assisting) and subjective distress (feelings of satisfaction or dissatisfaction).

For rigorous academic use, researchers typically rely on validation studies referenced in subsequent publications by the authors, which would establish construct validity by correlating WQOL-CQ scores with other validated measures of family functioning, patient symptoms, and overall Quality of Life outcomes.

Reliability

Specific internal consistency coefficients (e.g., Cronbach’s Alpha) and test-retest reliability data are not present in the sample instrument text. However, the use of structured, multi-point Likert scales across key domains (e.g., Service Interaction, Family Assistance) suggests that the instrument was designed with the intention of achieving high reliability. For a scale intended for research on psychiatric populations, high internal consistency across related subscales is anticipated to ensure accurate measurement of nuanced caregiver experiences over time.

Factor Analysis

The organization of the questionnaire into distinct sections (Background, Services, Family Assistance, Life Activities and Goals) implies a strong hypothesized factor structure. A typical factor analysis of the WQOL-CQ would likely confirm distinct factors corresponding to:

1. Objective Burden (time/effort spent on tasks).
2. Subjective Strain/Satisfaction (emotional response to caregiving).
3. System Engagement (interaction and satisfaction with mental health professionals).
4. Patient QoL Proxy (caregiver perception of patient functioning).

Such analysis would be necessary to ensure that the instrument’s various sections are measuring separate, meaningful dimensions of the caregiving experience.

Instrument

Test Type: Informant-report measure / Self-administered questionnaire.

Format: Structured survey format combining closed-ended questions (checklists), Likert-type scales (5-point agreement scales, 4-point frequency scales), and 10-point visual analog scales (for QoL and goal achievement). Contains multiple open-ended qualitative sections.

Language Available: English (Original version).

Population Group: Informal caregivers (relatives, friends, neighbors) of individuals with severe and persistent mental illness, typically adults.

Age Group: Adults (Caregivers); Patient age is variable but generally focuses on adult patients receiving community services.

Population Details: Caregivers supporting individuals receiving psychiatric rehabilitation and community support services, often related to severe diagnoses such as schizophrenia or bipolar disorder.

Test Methodology: The questionnaire collects demographic data, service utilization history, detailed assessment of caregiving activities within the past four weeks, evaluation of interaction with health professionals, and subjective ratings of the patient’s quality of life and treatment progress.

Keywords

Caregiver QoL, mental health, community support, psychiatric services, family involvement, functional impairment, objective burden, subjective burden.

Authors

Author ORCID Identifier: Not provided in source.

Affiliation Email addresses: [email protected] (Marion A. Becker).

Correspondence Address: Marion Becker, Ph.D., University of South Florida, Department of Community Mental Health, 13301 Bruce B. Downs Blvd., MHC 1423, Tampa, Florida 33612-3899. Telephone: (813)974-7188 Fax: (813)974-6469.

Permissions & Fee and Test Year

The WQOL-CQ was first published in 1996. The instrument is part of the Wisconsin Quality of Life Initiative (WQLI) instruments. Users interested in utilizing the scale for research or clinical purposes should contact the corresponding author, Dr. Marion Becker, via the provided email or postal address to inquire about current usage permissions and any applicable licensing fees. The complete instrument can be accessed online.

Reference’s

Becker, M. A., Shaw, B. R., & Reib, L. M. (1996). Wisconsin Quality of Life Caregiver Questionnaire (WQOL-CQ). The original instrument is maintained by the Wisconsin Quality of Life Initiative (WQLI).

The instrument is available online at: http://wqli.fmhi.usf.edu/wqli-instruments/

Items of the Wisconsin Quality of Life Caregiver Questionnaire

IMPORTANT: The following scale items must be preserved in their original language and must not be changed in any way.

BACKGROUND INFORMATION (sample)

1. Please list members residing in your household: Name (First names only)‚ Relationship to client
2. Do you have a job at the present time? Yes No (if no‚ please skip to #5)
3. How many hours a week do you work or go to school? _____ hours per week
4. What is your occupation? _________________________
5. Who was your relative/friend/neighbor living with when he/she first became ill? (Check all that apply): alone‚ with parents‚ friend/roommate‚ with significant other/spouse‚ with children‚ other‚ please specify …
6. Where was you neighbor/relative friend living when he/she first became ill? (Check one)
7. How old was your relative/friend/neighbor when he/she first became ill? _______years
8. Who is your relative/friend/neighbor living with now? (Check one) …
9. Where is you relative/friend/neighbor living now? (Check one)
10. When was the last time the patient spent more than 7 consecutive overnights in your household?
11. In the time that you have been involved with the patient‚ how many times has he/she been hospitalized? None ______ # times
12. What services has the patient received during the past 6 months? Don’t know

Please check all that apply.

• Community Support Program/
• Assertive Case Management with Regular Community Outreach
• Job/Vocational Training
• Individual Psychiatrist Appointments
• Medication Group
• Case Management
• Individual Therapy other than Case Manager
• Groups including Living Skills‚ Social‚ Recreational‚ and Therapy groups
• Day Treatment
• General Medical Health
• Housing Support
• Any Other Services?
• Please Specify: _________________________________

SERVICES

11. People are often required to talk with mental health professionals in trying to help their relative/friend/neighbor with mental illness. To what extent do the following statements reflect experiences you have had in getting treatment for your relative/friend/neighbor?
    For each statement below‚ please tell us whether you strongly agree‚ agree‚ have no opinion‚ disagree‚ strongly disagree with it or don’t know. Under each statement please check the corresponding box that best reflects your feelings.
    1. The health care professionals that I have dealt with feel that I can play an important role in the treatment process. Strongly Know/ Agree Apply‚ Agree‚ No Opinion‚ Disagree‚ strongly Disagree‚ Don’t Doesn’t
    2. The health care professionals that I have dealt with have given me as much information as I have needed. Strongly Know/ Agree Apply‚ Agree‚ No Opinion‚ Disagree‚ strongly Disagree‚ Don’t Doesn’t
    3. I am comfortable questioning health care professionals about advice they give me. Most of Know/ the time Apply‚ Some of the time‚ No Opinion‚ Rarely‚ Never‚ Don’t Doesn’t
    4. I would like to have more say than I do now about the services and medication my relative/friend/neighbor receives. Strongly Know/ Agree Apply‚ Agree‚ No Opinion‚ Disagree‚ Strongly Disagree‚ Don’t Doesn’t
    5. Sometimes I feel that the health care professionals that I work with do not understand the problems people face in caring for a person with a mental illness. Strongly Know/ Agree Apply‚ Agree‚ No Opinion‚ Disagree‚ Strongly Disagree‚ Don’t Doesn’t
    6. I often wish that I knew more about mental illness when I talk with health care professionals. Strongly Know/ Agree Apply‚ Agree‚ No Opinion‚ Disagree‚ Strongly Disagree‚ Don’t Doesn’t
    7. I am comfortable in getting a second opinion when I have questions about advice I get from a health care professional. Strongly Know/ Agree Apply‚ Agree‚ No Opinion‚ Disagree‚ Strongly Disagree‚ Don’t Doesn’t
12. In general‚ how many contacts does your relative/friend/neighbor have with members of your household? Please fill in the blanks as appropriate.
    • Patient resides with you. Yes No; If Yes‚ patient has spent _____ overnights away.
    • I and other members of my household and the client have seen each other ___times in the past month
    • I and other members of my household and the client have talked on the telephone __times in the past month.
    • I and other members of my household and the client have corresponded in the past month. Yes No
    • No contact in the past two months Yes No
    • Other‚ please specify: _________________________________
13. In the past six months have you or any other member of your household had any meetings‚ any visits or phone calls to or from individuals who are treating the patient? (Doctors‚ Social workers‚ Psychologists‚ Counselors‚ Welfare workers).
    • If Yes‚ please complete the following information:

    Number‚ Agencies involved

    Personal Visits ______ _______________

    Phone Contacts ______ _______________

    Other: ______ _______________

    • Were any of these contacts of any help to you? Yes No‚ please specify why not: _________________________________________
    • If no‚ i.e.‚ you haven’t had contact‚ would you like to have had contact with any of these people? Yes No

FAMILY ASSISTANCE

14. Family and friends often take on responsibilities to provide care and support for a person with mental illness. During the past four weeks how much support or supervision did you give to your relative/friend/neighbor in dealing with these particular problems/difficulties shown below and how did you feel about giving this support?
    1. Maintaining personal hygiene. None ‚ Little‚ Some‚ Much
       How did you feel about giving such support? Satisfled‚ Accepted‚ Dissatisfied
    2. Taking prescribed medication. None ‚ Little‚ Some‚ Much
       How did you feel about giving such support? Satisfled‚ Accepted‚ Dissatisfied
    3. Preparing meals. None ‚ Little‚ Some‚ Much
       How did you feel about giving such support? Satisfled‚ Accepted‚ Dissatisfied
    4. Getting up and getting dressed. None ‚ Little‚ Some‚ Much
       How did you feel about giving such support? Satisfled‚ Accepted‚ Dissatisfied
    5. Doing household chores. None ‚ Little‚ Some‚ Much
       How did you feel about giving such support? Satisfled‚ Accepted‚ Dissatisfied
    6. Managing money. None ‚ Little‚ Some‚ Much
       How did you feel about giving such support? Satisfled‚ Accepted‚ Dissatisfied
    7. Shopping for food‚ clothing‚ etc. None ‚ Little‚ Some‚ Much
       How did you feel about giving such support? Satisfled‚ Accepted‚ Dissatisfied
    8. Making use of leisure time. None ‚ Little‚ Some‚ Much
       How did you feel about giving such support? Satisfled‚ Accepted‚ Dissatisfied
15. During the past four weeks‚ how much support or supervision did you give to help the patient control (overcome) the particular behaviors shown below?
    1. Socially embarrassing behavior None‚ Little‚ Some‚ Much
       How did you feel about giving such support? Satisfled‚ Accepted‚ Dissatisfied
    2. Attention-seeking behavior None‚ Little‚ Some‚ Much
       How did you feel about giving such support? Satisfled‚ Accepted‚ Dissatisfied
    3. Inappropriate sexual behavior None‚ Little‚ Some‚ Much
       How did you feel about giving such support? Satisfled‚ Accepted‚ Dissatisfied
    4. Threatening or violent behavior None‚ Little‚ Some‚ Much
       How did you feel about giving such support? Satisfled‚ Accepted‚ Dissatisfied
    5. Talk or threats of suicide None‚ Little‚ Some‚ Much
       How did you feel about giving such support? Satisfled‚ Accepted‚ Dissatisfied
    6. Disturbing behavior at night None‚ Little‚ Some‚ Much
       How did you feel about giving such support? Satisfled‚ Accepted‚ Dissatisfied
16. What is the hardest part in giving support to your relative/friend/neighbor? Please list the three hardest things to you‚ in order from most difficult to least difficult.
17. Are there things that you enjoy about supporting your relative/friend/neighbor? Please explain: ……………………………….

LIFE ACTIVITIES AND GOALS (sample)

Now we are interested in knowing about your relative/friend/neighbor’s abilities during the past four weeks.

18. ACTIVITY During the past four weeks‚ my relative/friend/neighbor has: (Check one)
19. DAILY LIVING During the past four weeks‚ my relative/friend/neighbor has: (Check one)
20. HEALTH During the past four weeks‚ my relative/friend/neighbor has: (Check one)
21. SUPPORT During the past four weeks‚ my relative/friend/neighbor has: (Check one)
22. OUTLOOK During the past four weeks‚ my relative/friend/neighbor has: (Check one)
23. From your perspective‚ what do you think are the important treatment goals for your relative/friend/neighbor?

    Goal 1: _________________________________

    • How important is this goal to your relative/friend/neighbor? Not at all important 1 2 3 4 5 6 7 8 9 10 Extremely Important
    • To what extent has your relative/friend/neighbor achieved this goal? Not at all achieved 1 2 3 4 5 6 7 8 9 10 Completely achieved

    Goal 2:__________________________________________

    • How important is this goal to your relative/friend/neighbor? Not at all important 1 2 3 4 5 6 7 8 9 10 Extremely Important
    • To what extent has your relative/friend/neighbor achieved this goal? Not at all achieved 1 2 3 4 5 6 7 8 9 10 Completely achieved

    Goal 3: ______________________________________

    • How important is this goal to your relative/friend/neighbor? Not at all important 1 2 3 4 5 6 7 8 9 10 Extremely Important
    • To what extent has your relative/friend/neighbor achieved this goal? Not at all achieved 1 2 3 4 5 6 7 8 9 10 Completely achieved
24. Please check a box below to indicate your rating of your relative/friend/neighbor’s quality of life during the past four weeks.

    Lowest quality means your relative/friend/neighbor’s life is as bad as it could be.

    Highest quality means your relative/friend/neighbor’s life is the best it could be.

    LOWEST QUALITY 1 2 3 4 5 6 7 8 9 10HIGHEST QUALITY

    • If your relative/friend/neighbor’s quality of life is less than he/she hoped for‚ how hopeful are you that he/she will eventually achieve his/her desired quality of life? (Check one)
    • How much control do you feel your relative/friend/neighbor has over the important areas of his/her life? (Check one)
25. How confident are you that your rating of your relative/friend/neighbor’s quality of life is accurate? Please check the appropriate box.
26. Which of the following factors do you think are most important in determining your relative/friend/neighbor’s quality of life?

    Not important‚ Slightly important‚ Mildly important‚ Moderately important‚ Extremely important

    • Work‚ school or other occupational activities
    • Your relative/friend/neighbor’s feelings about him/herself
    • Your relative/friend/neighbor’s physical health
    • Friends‚ family‚ people your relative/friend/neighbor spends time with
    • ha‎ving enough money
    • Your relative/friend/neighbor’s ability to take care of him/herself
    • Mental health
    • Other‚ please specify:
27. Have there been any important factors which would influence your relative/friend/neighbor’s quality of life (i.e.‚ deaths in the family‚ serious physical illness‚ accidents)? Please briefly explain.
28. Is there anything else you would like to tell us?
29. What is the most important thing that now needs to be done for your relative/friend/neighbor?