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International Family Quality of Life Project

The International Family Quality of Life Project examines the quality of life of families who have one or more members with an intellectual or developmental disability.

The project was initiated in 1997 by researchers from Australia, Canada, and Israel. The organization of the project is led by researchers in Canada at Surrey Place Centre, MukiBaum Treatment Centres, and faculty from the University of Toronto and University of Victoria.

Currently, researchers in the following 20 countries are participating:

Australia
Austria
Bosnia
Belgium
Canada
Croatia
India
Iran
Ireland
Israel
Italy
Japan
Malaysia
Mexico
Netherlands
Poland
Slovenia
Taiwan
United Arab Emerates
United States

Family Quality of Life (FQOL) Surveys Available

The FQOL Survey is available in two versions: Main caregivers of people with intellectual or developmental disabilities and General version (non-disability). These have been translated into a number of different languages.

Supporting Materials Available

The FQOL Surveys are also available with variable names inserted for use by researchers who will be entering data into SPSS.

An SPSS Datafile is provided with all variables defined. The document FQOL Variable Descriptions and Instructions for Scoring is included separately as an additional support for researchers.

FQOL Survey ID DD With Variable Names May 08.doc
FQOL Survey General Version With Variable Names May 08.rtf
FQOL Variable Descriptions and Instructions for Scoring.doc
FQOL SPSS Datafile this is a portable SPSS file and will not open on the website.

Download Instructions for SPSS datafile (Windows Users): Double click on filename and do the following:

The usual dialogue box with “open” and “save” options will open
Choose “save”
The “Save As” dialogue box will open
In the “Save in” box specify the folder in which you would like to save the file
In the “File name” box delete the “1” and type FQOL SPSS datafile.sav (or any other name you wish just make sure to include “.sav” as the file extension)
In “Save as type” box choose “All Files”
Click “Save”
Click “Close”
Go the folder you saved the file in and open it (it will only open if you have SPSS on your computer)

Contact Us

If you encounter any difficulties downloading any of the above materials, please contact:

Barry Isaacs
Surrey Place Centre
Toronto, Ontario, Canada
barry.isaacs@surreyplace.on.ca

Additional Information About The Family Quality of Life Project and Materials

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.

Translations

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 at the address above.

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Developed by John White and Second Foundation Intelligence for Surrey Place Centre 2009