Pilot - Measuring QoL for people with disabilities in Norway
From Arbeid & Inkludering i NHO Service (Work & Inclusion)
1. What is the name of this service/practice/project or what name would you give it?
Pilot project on measuring QoL for people with disabilities.
We are a company in Norway employing people with different disabilities. We are organized in the Norwegian branch organization Work & Inclusion.
11 of our employees with different disabilities have participated in the pilot.
We are Equass certified and this work is part of improving our concept for QoL.
2. To which dimension of QoL does the practice contribute?
Self- determination, rights, emotional wellbeing, social inclusion, personal development, interpersonal relationships, material well-being and physical well being
3. Would you considering the example as ‘an innovative way of working’? If so, why?
This project goal is to gain new perspectives on QoL for our co-workers with different disabilities and to try different tools for measuring QoL. If we succeed, we will have a more detailed knowledge on our co-workers QoL and therefore a better possibility for fine-tuned interventions for a better QoL. Our co-workers have a wide variety of health and social challenges and we are trying to find ways to contribute to QoL for all of them. Maybe in the long run we will get a better cooperation with other relevant service providers to maximize the true potential of QoL intervention
4. In what way does the practice lead to ‘inclusion of service users with a profound disability’? Please explain how you have understood and defined ‘inclusion’ in this context.
We employ people with different disabilities like Downs syndrome, Cerebral palsy, cognitive disorders, developmental disorders and psychiatric disorders. All have government provided disability benefit as their main income, but they are also paid by our company for working with us. For us inclusion means the right to work, to have a say in how your workday is organized and to be treated with respect. We customize work environment to fit employee needs. We also strongly believe that work is a major contributor to QoL
Out rights manifest is:
- The right to be treated with dignity
- The right to free choice
- The right to one’s personal information an that the information is handled in compliance with GDPR
- Religious freedom
- Freedom of speech
- The right to choose work
- Protection against discrimination
- The right to equality
- Rights given under the Norwegian law of work environment
5. What would be, in your opinion, the opportunities and challenges to transfer the practice to the partner organizations?
The opportunities lie in the understanding of what affects the QoL in people’s whole life. We organize our co-workers workday, other service providers organize other parts of their lives. All areas can have a positive or negative impact on QoL. A better understanding of the whole may give us a better understanding of which QoL interventions to use.
There are some ethical challenges in how much of our employee’s private life we should interfere with, and there are some challenges with sharing information due to privacy regulations. We believe new regulations through GDPR and how different organizations understand them may weaken our possibility to have good cooperation with other service providers. Talking to other health- and service providers is considered as data collection which is regulated by law and the Norwegian government have tightened our possibilities to do so.
6. Have you evidence (proof) that the practice increased the satisfaction of the service users? If so, please show how satisfaction is measured and the increased satisfaction score.
This is a pilot. We have tested INICO-FEAPS and San Martin Scale by Prof. Verdugo and Prof. Shalock. We found the scales to be the most detailed to measure QoL that we have seen so far, but to answer all the questions we had to cooperate with many other service providers and persons. Our leaders meant they could only answer 37% of the questions in the INICO-FEAPS Scale. As for now we think that those scales are too comprehensive to use and they are not suited for all of our employees.
We have had some cooperation with the Norwegian University of Science and Technology and we are trying to develop this cooperation further to look in to how we can use the 8 domains to measure QoL.
The participants in the pilot with INICO-FEAPS and San Martin Scale where mostly positive to the use of the scales. Some did not see why we should have so much detailed and private information registered about them.
7. Have you evidence (proof) that the practice increased the satisfaction of the Family members? If so, please show how satisfaction is measured and the increased satisfaction score.
8. Have you evidence (proof) about tangible results of improving Quality of Life of persons with a profound disability? If so, please show how this is determined?
We do not have comparable results yet as we are just getting started. But our understanding of QoL have improved through Verdugo and Shalock’s 8 domains on QoL and we believe that it will improve our QoL interventions in the future.
We have QoL graphs over the 8 domains produced in INOCO-FEAPS and San Martin.
9. Have you evidence (proof) about tangible results of meeting expectations of service users with a profound disability? If so, please show how this is determined?
We only have feedback from some of the participants that they are grateful for the work that has been done in the pilot and believe that this work will benefit them in the future.