Understanding what is important to the life quality of youth with chronic health conditions.
A resource for youth, families, service providers, researchers, and decision makers
About the Quality of Life Webpage
The information and materials available from this “Quality of Life” (QOL) webpage are offered so that youth, families, service providers, researchers, and decision-makers may better understand what QOL means to youth with chronic health conditions and what is important to youth for their QOL to be at its best. Our hope and goal is that this information will draw attention to important issues, leading to improvement in services and societal changes that can truly make a positive difference in youths’ lives.
The focus of the webpage is a longitudinal study about QOL that included over 400 youth and their families who were receiving services from children’s treatment centres across Ontario. The study was funded by the Canadian Institutes of Health Research and many collaborators.
Perspectives of youth about QOL that emerged from the study can be found on this webpage. Resources that were developed by researchers and clinicians about youths’ QOL, and study findings are also available here. In addition, links are provided to QOL measures and other websites that offer additional information for anyone interested in knowing more about what makes life good for youth with chronic conditions and all people in general.
About Quality of Life
What is “quality of life”? Of course, everyone has heard this term used many times, but what exactly does it mean?
The term quality of life (QOL) has been given many meanings. In fact there are over a hundred definitions1, and the number is increasing! Often, QOL is equated with objective aspects of life, such as a person’s health condition or socio-economic status.
The World Health Organization (WHO) emphasizes subjective well-being and defines QOL as: “individuals’ perceptions of their position in life in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards, and concerns.2 ”
Increasingly, countries, governments, and institutions are coming to believe that collecting information about individuals’ perceptions of their subjective well-being (e.g., life satisfaction, happiness) is equally as important for assessing QOL as collecting information about their objective well-being3. It is now recommended by the WHO4 that countries include a measure of general life satisfaction in their national surveys. This indicates the WHO’s support for overall life satisfaction as being relevant to people’s QOL and as important for policymaking and societal improvement.
Investigators of this study and decision makers who collaborated on the longitudinal study agreed on the importantance of assessing the QOL of children and youth who receive rehabilitation services in terms of their life satisfaction or overall perceived life quality, and then to examine and identify the key personal (e.g., emotional and physical well-being), interpersonal (e.g., social support, community participation), and environmental factors (e.g., community attitudes, physical environment) that are influencing it.
Asking people if they are satisfied with the quality of their lives and collecting information about subjective and objective factors that may be related to that satisfaction, can reveal hidden issues and underlying strengths about individuals and the society they live in3. It can suggest the need for change3, such as the need for new or different types of supports, services, or attitudes.
Positive change to make children’s and youths’ lives better is what we aim to achieve by sharing information about our study as well as other resources about QOL through this webpage!
- Cummins, R. (1995). Assessing quality of life, in R.I. Brown (Ed.) Quality of Life for handicapped people. London: Chapman & Hall.
- World Health Organization Quality of Life Group. (1998). The World Health Organization Quality of Life Assessment (WHO-QOL): Development and general psychometric qualities. Social Science and Medicine, 46, 1569-1585.
- Helliwell, J., Layard, R., & Sachs, J. (2011). World Happiness Report. Columbia University: The Earth Institute.
- World Health Organization Regional Office of Europe. (2013). Joint meeting of experts on targets and indicators for health and well-being in Health 2020. Copenhagen, Denmark: World Health Organization Regional Office of Europe
“Quality of Life” Study
The primary aim of this study was to undertake a comprehensive examination of overall perceived quality of life (QOL) for school-aged youth who have chronic health conditions.
There were two parts to this study: 1) a quantitative survey-based part; and 2) a qualitative part where 18 youth participated in semi-structured interviews and a focus group. Please see the webpage section, “Hearing from Youth” for a brief summary of qualitative findings. Complete articles containing qualitative results can be found in the "Journal Publications" section of the webpage.
The quantitative part was a five-year, multi-centre, longitudinal study examining two unexplored research areas: 1) the changing nature of perceived QOL for youth with chronic conditions ; and 2) the factors (e.g., physical and cognitive functioning, activities of daily living, emotional/behavioural functioning, educational functioning, self-determination, spirituality, social support, family functioning, social participation, family empowerment for accessing services, and supportive home, school, and community environments) hypothesized to predict change in perceived QOL for youth over time.
In order to obtain a comprehensive picture of youths’ perceived QOL, both youth and parent reports were obtained. Youth and one of their parents (or primary caregiver) each completed a brief survey at four data collection time points over a three-year period. Four hundred and thirty-nine youth, age 11 to 17 years that received services from eight children’s rehabilitation centres in Ontario participated. Individuals in this age span were expected to encounter a number of key life transitions during the course of the three-year follow-up period (e.g., changes in school, changes in expectations regarding independence, changes in role within the family and in the community).
Knowledge of the key factors impacting youth QOL can help inform policy decisions about how and where to allocate funds, and is vital for ensuring the provision of suitably targeted and effective rehabilitation and allied services (intervention and support) for youth with chronic conditions. Final longitudinal results of the study can be found in the "Journal Publications" section of the webpage.
Hearing from Youth
What Quality of Life Means to Youth
An important goal of the “Quality of Life” study was to determine: a) what quality of life (QOL) means to youth from their perspective; and b) what youth feel is important to their QOL. We interviewed 18 youth and held a focus group to allow youth to answer these questions in their own words.
In terms of the meaning of QOL, a recurring theme was that it was a sense of subjective or personal well-being. Here is what some of the participants had to say:
Quality of Life means….
- “How enriched and fulfilling your life is.”
- “How you enjoy life and get the best out of life.”
- “That you live life to the fullest and you never give up.”
- “How satisfied you are with living.”
- “Be a useful person and be happy.”
- “How good your life is for you.”
- “Making sure everyone has a good life.”
- “Being as independent as possible and relying on others but not being completely reliant on others.”
- “Having a sense of purpose.”
- “Having fun.”
- “Doing the best you can with your circumstances and abilities.”
- “To be alive.”
Below are the factors that youth most frequently identified as being important to their quality of life…
- Family: “My parents help give me a good life and I feel like I'm always grateful to them and I always want to make sure that I can return everything that they've given me in life.”
- Friends: “My friends help make my life more worthwhile.”
- Being Independent: “If you have a sense of accomplishment that you’ve done things yourself, your quality of life is a lot better.”
- Support: “Having a good support team, having a lot of people there that support my goals and my vision of what I want to happen in my life [makes a big difference].”
- Participation in leisure and recreation: “Sledge hockey for instance, I can do because of my disability and I wouldn’t have been able to do it if I didn’t have [a disability].”
- School: “If I’m doing well in school, then I sort of know that in a sense I’m doing something right and… I don’t know, it’s sort of proof on paper that I’m doing well in life.”
- Knowledge/learning: “Knowledge has always been a way of challenging me to try to be more than I already am.”
- Attitude/beliefs: “If you don't feel good about yourself then you're probably going to think your quality of life is lower than it may actually be, or you perceive it to be.”
- Having a job: “It made me feel really good that I was hired for a job… [it was] a chance to meet different people...and give back.”
- Accessibility/mobility: “Having more wheelchair accessible places makes things better.”
- Helping others: “I don’t think it’s enough to just be happy as a person until you’ve done something for someone else. I couldn’t be happy without knowing that I’ve made others happy as well.”
- Social interaction: “Everybody needs social interaction with other people.”
- Health: “My health is important to me because I want to live a good long life and maybe raise a family.”
- Safety: “Feeling safe makes me happy.”
- Basic Needs: “If you don’t have food or water, you can’t really survive.”
For published results, see McDougall et al. (2016) and Baldwin et al. (2015) under "Journal Publications".
Longitudinal findings from the ‘Quality of Life’ Study were presented at the 15thAnnual Conference for the International Society for Quality of Life Studies in Innsbruck, Austria!
To view the Conference program and the study abstract on page 19: http://www.isqols2017.org/wp-content/uploads/2017/09/ISQOLS_Abstracts_26-9-17_Online-.pdf>
The Canadian Association of Paediatric Health Centres (CAPMC) presents:
"Quality of Life for Youth with Chronic Health Conditions: Learning from Youths' and Parents' Perspectives."
This webinar includes baseline study results and qualitative findings - Click here for the webinar
Quality of Life Study Reports
Quality of Life Study Baseline Report
Facts to Go
“Facts to Go” are easy-to-read summaries published by TVCC that provide information about a research study or other rehabilitation-related information of interest to clinicians, researchers, and families. Below is a list of Facts to Go related to children’s and youths’ QOL.
- What Contributes to Multidimensional Life Satisfaction for Youth with Chronic Health Conditions?
TVCC Facts to Go: Multidimensional Life Satisfaction
- How can perceived quality of life be optimized for youth with chronic health conditions throughout adolescence?
TVCC Facts to Go: Quality of life for youth over time
- Quality of Life, Self-Determination, and Spirituality: What Youth with Chronic Conditions Have to Say
TVCC Facts to Go: Learning from Youth
- Implications of substance use for young people living with developmental disabilities
TVCC Facts to Go - Substance use
- Learning about quality of life for young people with severe or profound disabilities
TVCC Facts To Go - Severe Disabilities
- What is “Quality of Life”?
TVCC Facts To Go - Quality of Life
- A “positive” focus for service delivery and research in pediatric rehabilitation
TVCC Facts To Go - Service Delivery and Research
- Understanding the mental health needs of children and youth with chronic conditions
TVCC Facts To Go - Mental Health
- Enhancing social support for children and youth with chronic physical health conditions
TVCC Facts To Go - Social Support
- “Self-Determination”: Why is it important to youth and young adults with disabilities?
TVCC Facts To Go - Self Determination
The following articles that have arisen out of our QOL study or are focused on QOL are available by clicking on the links below.
McDougall, J. (2020). An assessment approach for use in counselling to promote young people’s quality of life. International Journal for the Advancement of Counselling, 42(4), 445-467.
Baron, H., Hawrylyshyn, N., Hunt, S., & McDougall, J. (2019). Understanding quality of life within occupational therapy intervention research: A scoping review. Australian Occupational Therapy Journal. 66(4), 417-427.
McDougall. J., & Wright, V. (2018). Domain-based and overall life satisfaction for youth with chronic conditions: The role of personal, interpersonal, and environmental factors over a one-year period. Applied Research in Quality of Life., 13(4), 1097-1115. A complete version of this article is also available to read online.
McDougall, J., DeWit, D., Nichols, M., Miller, L., & Wright. V. (2016). Three-year trajectories of global perceived quality of life for youth with chronic health conditions. Quality of Life Research, 25(12), 3157-3171.
McDougall, J., Baldwin, P., Evans, J., Nichols, M., Etherington, N., & Wright, V. (2016). Quality of life and self-determination: Youth with chronic health conditions make the connection. Applied Research in Quality of Life. 11(2), 571-599.
Bedell, G., & McDougall, J. (2015). The Child and Adolescent Scale of Environment (CASE): Further validation with youth who have chronic conditions. Developmental Neurorehabilitation, 18(6) 375-382.
Etherington, N., McDougall, J., DeWit, D., & Wright. V. (2015). Maternal factors and the emotional and behavioural functioning of adolescents with chronic health conditions. Disability and Rehabilitation, 38(14), 1359-1369.
Baldwin, P.J., Evans, J., Etherington, N., Nichols, M., Wright, V., & McDougall, J. (2015). Youth with disabilities talk about spirituality: A qualitative descriptive study. The Qualitative Report, 20 (7), 941-958.
McDougall, J., Wright, V., DeWit, D., & Miller, L. (2014). ICF-based functional components and contextual factors as correlates of perceived quality of life for youth with chronic conditions. Disability and Rehabilitation, 36 (25), 2143-2151.
McDougall, J., Bedell, G., & Wright, V. (2013). The youth report version of the Child and Adolescent Scale of Participation (CASP): Assessment of psychometric properties and comparison with parent report. Child: Care, Health, & Development, 39(4), 512-522.
McDougall, J., Wright, V., Nichols, M., & Miller, L. (2013). Assessing the Psychometric Properties of both a Global and a Domain-Specific Perceived Quality of Life Measure when used with Youth who have Chronic Conditions. Social Indicators Research, 114(3), 1243-1257.
Tsonis, M., McDougall, J., Mandich, A., & Irwin, J. (2012). Interrelated processes toward quality of life in survivors of childhood cancer: A grounded theory. The Qualitative Report, 17, 1-18.
McDougall, J., Wright, V., Schmidt, J., Miller, L., & Lowry, K. (2011). Applying the ICF Framework to study changes in quality of life for youth with chronic conditions. Developmental Neurorehabilitation,14(1), 41-53.
McDougall, J., Wright, V., & Rosenbaum, P. (2010). The ICF Model of Functioning and Disability: Incorporating quality of life and human development. Developmental Neurorehabilitation, 13(3), 204-211.
McDougall, J., Evans, J., & Baldwin, P. (2010). The importance of self-determination to perceived quality of life for youth and young adults with chronic conditions and disabilities. Remedial and Special Education, 31(4), 252-260.
McDougall, J., & Tsonis, T. (2009). Quality of life in survivors of childhood cancer: A systematic review of the literature (2001-2008). Supportive Care in Cancer, 17(10), 1231-1246.
Below are links to measures of perceived quality of life/life satisfaction, impairments, activities/participation, and the environment used in our QOL study, as well as to a patient-reported outcomes and quality of life instruments database.
The websites below provide additional information for anyone interested in knowing more about quality of life research and what makes life better for youth with chronic conditions and all people in general.