About the Project
The FQOL Project was initiated by an international team of researchers as a method of focusing on the quality of life of families who have one or more members with an intellectual or developmental disability. It is a way to address the degree to which family quality of life is enjoyable, meaningful, and supported by the types of resources that are important to family members, as well as the struggles faced by families.
Keeping in mind the diverse nature of families throughout the world, the survey examines the degree to which family quality of life is enjoyable, meaningful, and supported by resources that are important to all family members. Assessing and measuring quality of life issues provides a better understanding of the challenges that families face and helps to identify supports needed to improve people’s lives.
The FQOL project is growing and is now being carried out in several countries around the world. Not only has the survey been translated into several languages, we have also developed a General Version for families without a family member with disabilities. This General Version may also be used for control groups.
About the FQOL Survey
Domains of the FQOL Survey:
The heart of the project is the FQOL Survey. Families of children or adults living with disabilities are asked about the importance to their lives, opportunities, initiative, attainment, stability, and satisfaction in nine key areas:
- Health of the family
- Financial well-being
- Family relationships
- Support from other people
- Support from disability related services
- Influence of values
- Careers and preparing for careers
- Leisure and recreation
- Community interaction
Structure of the FQOL Survey
There are many ways to look at family quality of life. The FQOL Survey looks at aspects of family life that we consider critical based on previous research and practice.
The FQOL Survey has several parts:
- The first part, About Your Family, introduces your family members
- The following 9 parts address specific areas of family life: health, financial well-being, family relationships, support from others, support from services, influence of values, careers, leisure and recreation, and community integration. Each of these 9 parts has 2 sections. Section A contains questions that gather some general information and provide context. Section B contains questions related to 6 key concepts: importance, opportunities, initiative, attainment, stability, and satisfaction. These questions may seem somewhat repetitive. They are meant to be that way, because they ask the same question about each of the 9 different areas of life
- The final short part of the FQOL Survey asks for overall impressions of family quality of life
How should the FQOL Surveys be administered?
The FQOL Surveys may be completed by the main caregiver (self-administration), or completed by a researcher or practitioner with the main caregiver (face-to-face administration). When self-administered, a way should be provided for the main caregivers who have questions to contact someone with knowledge of the survey.
In all cases, respondents should be encouraged to tell or write down additional thoughts and examples from their own families. Researchers may find it useful to augment the information gathered from the survey with a more in-depth personal interview.
Informed consent should always be obtained in writing from the person responding to the survey.
How should the FQOL Survey be used?
For research and evaluation purposes, a wide sampling of surveys can be used to describe and measure family quality of life across cultures, countries or age groups. The FQOL Survey is a method of collecting both qualitative and quantitative information about the quality of life of families.
The survey can be used by an individual family and its service practitioners to assess support needs and help with program design. In addition, the survey provides solid baseline data for further research into how the needs of families are being met through policy and services.
Survey findings and additional research can be used by government departments and ministries, policymakers and community agencies to develop programs, tools and supports to improve families’ quality of life.
Confidentiality and Ethical Considerations
The completed FQOL Survey contains confidential information. When it is used by service organizations for assessment of support needs and program design, established policies and guidelines followed for all confidential information should be used.
When the FQOL Survey is used for research or evaluation purposes, all personal information of families and individuals with intellectual disabilities should be concealed and only aggregate data or anonymous case examples should be reported. Those using this survey should comply with the ethical requirements of their universities, organizations, or relevant governing bodies.
Reliability and Validity
The FQOL Survey was initially developed in Australia, Canada, and Israel in 2000, and underwent extensive field testing in Australia, Canada, Israel, South Korea, and Taiwan that resulted in the revised 2006 forms.
Reliability and validity information will be available on this website in the near future, and will be updated as further analyses are completed.
The FQOL materials were developed in English and have been translated to some other languages, available on our website. If you would like to translate the Survey to your language for use in your country, we would be pleased to have you contact us so that we can work together to make it available.
Family Quality of Life Survey: Main caregivers of people with intellectual disabilities
© 2006. Ivan Brown, Roy I. Brown, Nehama T. Baum, Barry J. Isaacs, Ted Myerscough,
Shimshon Neikrug, Dana Roth, Jo Shearer and Mian Wang.
The Family Quality of Life Survey: Main caregivers of people with intellectual disabilities is intended for international use and may be reprinted or copied for educational, service or research purposes without consent from the authors. However, the authors appreciate and strongly encourage educators and researchers to inform them of the uses to which the Family Quality of Life Survey: Main caregivers of people with intellectual disabilities is put, and invite them to share data and data analyses. All other uses or adaptations of the survey require written permission from Barry J. Isaacs. Please see contact below:
Toronto, Ontario, Canada