A whole school approach to using ‘Quality of Life’ indicators for improving outcomes for students and their families.
There is an increasing body of international research focusing on the Quality of Life (QoL) of young people with Autism and that of their families. There is also a growing interest in what successful adulthood in autism looks like, and debate over the role of autistic young people and their families in determining preferred outcomes.
Sadly, there is a bleak landscape emerging from a number of research studies, which conclude with concerning statements such as: “Across the lifespan people with Autism experience a much lower Quality of Life compared to people without Autism” (Van Heijst and Geurts, 2015).
Moreover, a recent systematic review of family QoL in autism (Eapen 2016) found that “the available evidence overwhelmingly suggests that poorer parental QoL exists in parents of children with ASD when compared to parents of typically developing children and children with other disabilities”.
Students and families at Swalcliffe Park School
These findings resonate with and are backed up by many of our students who, when asked directly about their quality of their life describe negative experiences prior to joining our school. They recount persistent bullying, poor attendance, disengagement from learning and social isolation at school. They also tell us about tensions and disruptions in family relationships and events at home.
When asked about the impact of having a young person with Autism within the home, family members often report how they have had to deal with challenging behaviours, including violence and aggressions; the impact of low mood and self-esteem; as well as problems with basic daily life functioning such as eating, sleeping and personal care. In many cases, over time, these factors can combine to reach crisis point and lead to school exclusion, family breakdown, significant mental health problems and an unarguably poor QoL for families and the students themselves.
Rationale for a QoL approach
As far back as 2004, the prominent name in QoL research, Robert Schalock was advocating that an enriched QoL was a “realistic and obtainable goal for all persons” including those with developmental disabilities like Autism.
Later, the Autism Education Trust (2011), in examining outcomes for young people with autism, put forward the strong concluding view that “All individuals with Autism are entitled to a good education and a good quality of life.”
This optimistic stance is echoed in the view of Mark Lever, CEO of the National Autistic Society, at the time of publication of its School Report 2016, when he stated, “With the right education and support, children on the Autism Spectrum can achieve great things and their families can lead full and happy lives.”
We share this optimism and believe that it is fundamental for schools like ours to strive to enrich the QoL of our students. In addition, we agree with Gardiner and Iarocci (2015) and believe that we need to view our students as being “interconnected parts of a system that cannot be understood in isolation from one another but as embedded within their family.”
This is why we are committed, also, to enriching the QoL of the families of our students and endorse the National Autistic Society’s position that parents and young people need to be full participants in decision making and that we should be working together to support autistic young people to live the lives they want as they move towards adulthood.
Measuring Quality of Life
Issues in defining and measuring Quality of Life pose genuine challenges and consideration of the extensive literature covering these issues is beyond the scope of this introduction. You can access resources that tackle these issues elsewhere on this website.
Nevertheless, it is now widely agreed that Quality of Life needs to be conceptualised as being multi-dimensional. Schalock’s universal and widely accepted QoL model is based on three broad dimensions – Independence, Social Participation and Well-being with each divided into more specific sub domains such as personal development, interpersonal relationships, social inclusion, emotional well-being etc. (See xxx)
Schalock’s model holds particular appeal for a school such as ours because of the special emphasis we give to developing our autistic students’ attitudes, skills and knowledge in Communication, Self- Management, Independence and Achievements-four domains that fit well into this model.
Existing measures of QoL incorporate many of Schalock’s dimensions into rating scales or questionnaires. While many of these measurement tools exist for the general population as well as for specific medical conditions and disabilities, Tavernor’s 2013 systematic review found no condition-specific QoL measure for autism. Generic QoL measures had been used with autistic individuals and their families but it has been suggested that these generic measures may not be sufficiently sensitive to the unique challenges faced by autistic children and their parents (Payakachat et al 2012).
The Quality of Life in autism (QoLA) questionnaire
Against this background, Professor Valsa Eapen and her colleagues at the University of New South Wales was developing and trialling the Quality of Life in Autism Questionnaire (QoLA) to provide information on the QoL of the parents of preschool autistic children and how caring for an autistic child affected their family QoL.
We contacted Professor Eapen and were pleased to gain her support and permission to conduct a small-scale pilot study, using the QoLA with the parents of our older adolescent students. This led to our involvement in a larger-scale validation study of two versions of the QoLA – one for parents and another self-report version for students.
In addition to our partnership with Professor Eapen’s team, we went on to establish a link with the Centre for Research in Autism and Education (CRAE) at University College London (UCL) and a school for girls with autism (Limpsfield Grange) in order to increase the population size and diversity for the validation study of the two questionnaires.
The validation study involved repeated administrations of the QoLA (parent and student self-report versions), over time, at two specialist schools for students on the autism spectrum. Specific details on the findings from this validation study were presented at the Asia Pacific Autism Conference (APAC) in Sydney in September 2017. A copy of the poster can be found here.
The main conclusion of this validation study was that both the student self-report and parent-report QoLAs have strong psychometric properties and therefore should be used to measure QoL in the autistic population and their families.
Using ‘Quality of Life’ information at Swalcliffe Park School
In September 2017, we launched the full-scale implementation of our QoL approach based on three data collection points within the academic year, both for students and for their families. This has evolved dynamically over time to our current position, which is described below.
As a starting point, we use termly QoL surveys to capture those highly personal issues that individual students want to tell us about which are having an impact on their QoL. We use this information to set targets linking QoL issues to EHCP outcomes in order to give them more personal relevance and to guide how we support them on an individual basis. We also analyse the responses from the collective student group to inform how we work at a whole school level.
We also feel that it is essential to work with the students’ families in a similar way. So, we ask them to complete a family QoL survey at the same time as their sons. This enables us to capture the concerns that each individual family has as a result of their son’s autism.
Keyworkers use this information to follow up on issues within the scope of their role, to pass on information to other members of staff, to seek advice from specialists on the school team, and to contribute to the review of the individual student’s EHCP outcomes. We also analyse the collective family responses and use this to plan and deliver training sessions for families and to develop additional services to address their concerns.
This project has had significant implications for the school in the following ways:
The school is now fully committed to embedding Quality of Life principles and practice within our thinking and behaviour. We have set out the background and rationale for a QoL approach, some of the preliminary data trends we have collected, and our QoL framework in a poster format, which was presented at the 2018 NAS Professionals’ Conference. You can view this poster here.
As with all whole school initiatives there will be a number of benefits and consequences that we are able to predict and no doubt, some which will be unforeseen. We are reviewing all aspects of policy and practice as a natural part of our self-evaluation processes and using these findings to inform future school improvement.
We are also committed to sharing our practice and collaborating with other schools and organisations and this has led to the establishment of the QoL network for schools who are interested in finding out more about this approach.
If you would like any further information about our work with Quality of Life, please contact the Chief Executive Officer, Kiran Hingorani email:firstname.lastname@example.org