October 2018 Member Highlight: Jessica De Maeyer
Jessica De Maeyer, PhD
Coordinator of the centre of expertise on Quality of Life (E-QUAL), University College Ghent, Belgium
Coordinator of the academic workplace Community-based Care and Support Ghent, Belgium
Lecturer at the department of Social Educational Care Work, University College Ghent, Belgium
Describe your background, experience, and research as it relates to Quality-of-life studies.
My interest and passion for the concept of Quality of Life goes back to my time as a PhD student at Ghent University (Belgium). In 2010 I obtained my doctoral degree in Educational Sciences at the Department of Special Needs Education at Ghent University with a PhD study on the topic of Quality of Life of opiate-dependent individuals after starting methadone maintenance treatment. With this study I tried to develop a shift from rather objective outcome measures in the field of substance abuse research – often focusing on socially desirable outcomes (e.g. no drug use, no criminal involvement) – to more subjective, person-centred outcomes. In doing so, I aimed to shift the attention to the personal experiences of the people we work with, on life domains that are relevant to them. For me personally, the concept of Quality of Life reflected a framework to expand this unilateral view on objective outcomes, influenced by our rather alienating, modernist society to creating space and opportunities to another way of approaching people in socially vulnerable situations, starting from their own frame of reference and personal perspectives. Quality of life as such provides us with a framework to adjust our way of acting in order to fulfil the needs and interests of an individual and his or her position in society as a whole.
After finishing my PhD I started to work at the University College Ghent at the centre of expertise on Quality of Life (E-QUAL), established in 2010 by Prof. dr. Claudia Claes, an international expert on the topic of Quality of Life in the field of disabilities. During that time I got intrigued by the question whether Quality of Life could be a shared framework to support people living in socially vulnerable situations (e.g. people with disabilities, mental health problems, poverty,…). In this respect, vulnerability is not seen as a personal characteristic, but as a concept that takes shape in interaction between a person and his context (policy, organizations, community,…). It – social vulnerability – is a structural position, defined by a lack of connection with the broader society, resulting in social isolation and complex support needs in different life domains. The universal character of the concept of Quality of Life convinced me of the potential of the concept as a shared frame of reference to guide people in their daily life in the broad social field with a focus on strengths and capacities, rather
than a deficit-oriented individual approach. In 2013, the centre was transformed to an interdisciplinary centre at faculty level at the Faculty of Health, Education and Social Work, formed by different disciplines and departments. Since 2014, I am the coordinator of E-QUAL and together with an enthusiastic, interdisciplinary and international team, we set up different practice-based research projects to implement the concept of Quality of Life with different target groups and sectors as a shared frame of reference. We focus on research topics such as human rights, citizenship, capability approach, peer work and co-creation, assessment, resilience, support paradigm, evidence-based policy,…
What initially attracted you to the field of quality-of-life studies?
What attracted me most in the field of quality-of-life studies is that Quality of Life forces you to think differently about the work you are doing and the people you are working with. You start from their strengths, what’s important to the person, their goals and expectations for the future and the ability to fulfill them. It is a complete paradigm shift in how we look at citizenship and people in socially vulnerable situations in our society, that counterbalances the still dominant deficit-oriented approach. By starting from individuals’ own perspectives the framework of Quality of Life draws attention to the voices of those people who are seldom heard in society, not limiting their role to one of a client or patient in professional care, but approaching them as active citizens, instead of passive recipients of care. Another thing I find very appealing in the field of Quality of Life is the interdisciplinarity of this field of research, so philosophers, as well as economists, anthropologists and sociologists can inspire me in the work I am doing.
What are some areas of quality-of-life studies you feel are lacking attention? Any advice for future QoL researchers?
Many researchers, policy makers and professionals are convinced of the Quality of Life framework to contribute to human dignity and social justice, but I think we need more research on how to implement this framework in the daily practice and how we can align support needs of clients with different life domains. This should not only be done at the micro level, but also at the level of origanizations and at the level of policy. Research focusing on how Quality of Life can be implemented in at different policy levels (e.g. wellbeing, education, housing,…) based on specific Quality of Life indicators would be useful, as well as the question how Quality of Life can be a common framework to connect different policy domains by providing them a common outcome measure that starts from what is important to the citizens themselves. I also think that the concept of Quality of Life has an impact on the kind of research you are doing. Therefore, research should also focus on the societal structures (e.g. education, health care, justice,…) that (in)directly influence the Quality of Life of citizens and how policy can directly influence them. Many years of research with people in vulnerable situations taught me that aspects such as belonging and feeling connected to others, being able to have a meaningful life are central topics that should guide our daily research, taking into account the broader role of community and society as a whole to address structural barriers that negatively affect Quality of Life of those people. Besides that, I would be interested to see more research that starts from the principle of co-creation, involving evidence-based and practice-knowledge, including the knowledge of people with lived experiences themselves. We would be able to retrieve useful information on the concept of QoL by involving service users as co-actors and equal partners in shaping the process of care and support, including research. This would result in the contribution to the creation of an equivalent partnership between service users, professionals and researchers. One field of study that deserves our undivided attention, is that of our youngest citizens in society (i.e. children and adolescents).
How long have you been a member of ISQOLS? Why did you choose to be a member of ISQOLS? How has your involvement in ISQOLS impacted your career/research/advancement in your knowledge of QoL studies?
My first introduction to ISQOLS was at the ISQOLS conference of 2007 in San Diego, California, VS. I got the opportunity as a junior researcher to present my first qualitative research on drugs users’ perspectives on the concept Quality of Life. During that conference I got in contact with Prof. Laura Camfield (University of East Anglia, School of International Development, UK), who was chairing ‘my’ session on qualitative methods. As a result of that encounter, Laura became a great source of inspiration to me during my PhD and she introduced me in the inspiring world of ISQOLS. From that moment I attended the (two)yearly ISQOLS conferences, where I had the opportunity to present my work to an interdisciplinary and international audience. What I like the most about ISQOLS is the warm and open atmosphere, that contributes to a cross-fertilization of knowledge on a very low-threshold level, with respect for the diversity and complexity of the topic that connects us. Through ISQOLS, I further got in contact with Prof. Robert Cummins who gave us some useful advice and energy to further develop our own interdisciplinary research centre on Quality of Life (E-QUAL) at the university college Ghent and who gave us the chance to become actively involved in the international wellbeing group for Belgium. The ISQOLS-related scientific journals: Applied Research in Quality of Life, Journal of Happiness Studies and Social Indicators Research published some of our research projects, which highlights our academic output as a centre. We are currently involved in the third wave of the Children’s Worlds International Survey and this research on subjective wellbeing of children and adolescents always receives specific attention at the ISQOLS conferences, contributing to the valorisation of this study. During the last years we have been working on a closer collaboration between our own centre and ISQOLS, taking this as an important opportunity for us to set up an international network on Quality of Life, starting from an interdisciplinary perspective. The support we get through ISQOLS (e.g. promoting our summer school ‘Improving Quality of Life through Quality of Care) creates possibilities for sharing our work with a broader network of researchers, academics, professionals and peer workers involved in research, education and implementation of the Quality of Life concept on micro, meso and macro level. One of my aspirations as coordinator of E-QUAL is that one of the following years we will have the opportunity and privilege to host one of the upcoming ISQOLS conferences at our centre in Ghent, Belgium.