For the short synopsis, click on the the title and name below.
Lucy Browe
Navigating the Hidden Burden of Treatment: An exploration of patients’ and families’ experiences of managing chronic illness, and the role of healthcare policy in identifying treatment burden in an Irish context
People living with long-term health conditions often experience considerable workload related to their illness(es) and associated treatment. Managing medications and side effects, attending appointments, and coping with symptoms can make it difficult to work, maintain relationships, care for children, and participate in social activities. Families and carers often bear significant burden too, yet these realities are frequently overlooked in academic literature or policy domains.
Treatment burden represents the healthcare workload patients engage in and its impact on individual functionality and wellbeing (Shippee et al. 2012; Eton et al. 2015). This includes the “biological, biographical and relational disruptions” (Demain et al. 2015) that treatment burden can cause. Burden of Treatment Theory (May et al. 2014) examines how healthcare demands and prevailing policies affect patients’ ability to manage their care.
Current Irish healthcare policy and guidelines emphasise patient involvement and self-management in chronic disease care, however there is little reference to treatment burden within existing policy. Irish social science research highlights the financial burdens associated with the management of long-term health conditions and its correlations with age. However, there exists limited research in the Irish context that comprehensively analyses families’ experiences of navigating this ongoing form of work that can shape lives, identities and opportunities.
This study employs a qualitative, multi-method, participatory design within a pragmatist framework to explore how people who live with chronic illness(es), and their families, experience treatment burden in Ireland. This study deepens our understanding of the social and relational impacts of treatment burden in an Irish context by grounding patients’ lived experiences within a critical analysis of policy and international literature and theory on the burden of treatment.
Public and Patient Involvement (PPI) contributors with lived experience of chronic illness will be recruited to enhance the relevance of this research through collaborative working with experts by experience (Dawson et al. 2020, Tomlinson et al. 2019).
Lucy holds a MA in Community Development and has extensive experience in the community and voluntary sector working with patient organisations to deliver services to people and families living with long-term health conditions.
Email: Delores Crerar – l.browe1@universityofgalway.ie
Delores Crerar
Navigating Complexity in Public Service Commissioning: Exploring the relationship between Family Resource Centres and Tusla, Child and Family Agency
This study investigates decision-making processes within public services, focusing on the dynamics between Family Resource Centres (FRCs) and commissioning agencies. Grounded in a critical realist ontology and epistemology, the research explores power distribution, autonomy, and collaboration across three layers of reality: stakeholders’ experiences, observable processes, and systemic mechanisms. Complexity theory is employed to conceptualise commissioning relationships as complex adaptive systems, characterised by interdependence, feedback loops, and emergent behaviours. Together, these frameworks provide a robust analytical lens for examining how structural constraints and adaptive processes shape decision-making, collaborative governance, and operational autonomy.
The research seeks to uncover the causal mechanisms influencing commissioning relationships, evaluate the systemic factors shaping FRCs' autonomy in service delivery and programme design, and bridge theoretical insights with actionable recommendations. It emphasises the pivotal role of third sector organisations (TSOs) in mediating between the state, market, and civic society, fostering active citizenship, and advancing equitable service provision. This integrated approach offers critical insights into the interplay of power, autonomy, and collaboration within public service delivery, addressing both theoretical and practical dimensions of governance and policy-making.
Email: Delores Crerar – d.crerar2@universityofgalway.ie
David Hession
Investigating the Effectiveness of a Structured Self-Reflection Intervention in Building Individual Leadership Character and Enabling Behavioural and Attitudinal Change
The concept of leadership is often framed in terms of external influence—how leaders influence others through their actions and decisions. However, emerging perspectives also highlight the importance of internal leadership, or self-influence, which refers to an individual's ability to regulate their own behaviors, attitudes, and decisions in alignment with their values and goals. This dual understanding of leadership, encompassing both self-influence and external influence, forms the foundation of this research and aligns with broader calls for leadership development approaches that integrate reflective awareness and self-regulation.
Self-awareness is considered a central element of characteristics such as self-control (Carver & Scheier, 1982), emotional and social intelligence (Goleman, 1995) and many others. In turn, structured self-reflection is increasingly recognised as a critical tool for leadership development, offering individuals an opportunity to evaluate their values, behaviours, and actions to promote alignment with intrinsic motivations. The LIFT (Leading Ireland's Future Together) intervention provides a unique approach to leadership development by fostering reflection on core themes such as empathy, respect, accountability, and competence. Participants engage in a process of examining their attitudes, recent behaviours, and future actions, with the goal of fostering leadership character and enabling positive behavioural and attitudinal change.
Research suggests that reflective practices enhance self-awareness and intrinsic motivation, which are critical for autonomous self-regulation (Ryan & Deci, 2000). Moreover, traits such as empathy and respect are well-supported as key drivers of influence and leadership effectiveness (Goleman, 1995; Bass, 1985). However, limited empirical work has examined how structured self-reflection interventions, like LIFT, promote these traits or how participants experience such interventions.
The primary aim of this research is to investigate the effectiveness of the LIFT intervention in fostering Dual Dimension Leadership—the ability to influence oneself and others—through increased reflective awareness and self-regulated behavior. This mixed-method study explores participants' experiences of the LIFT intervention, measures changes in leadership behaviors and attitudes, and examines differential effects across demographic groups to provide a comprehensive evaluation of its impact.
David has an MSc in Psychology (Mental Health & Wellbeing) and started out his working life as a solicitor.
Email: D.Hession6@universityofgalway.ie
Paula Jennings
A Sibling’s Perspective: An Exploration Of Barriers And Facilitators To Wellbeing For Young People Providing A Caring Or Supportive Role For A Sibling With A Disability In An Irish Context.
Sibling relationships are usually the longest lasting and most enduring of all intimate family based relationships (Meyer, 2009). The inter-relational bond between siblings typically develops from birth onwards and can extend across the life-course. Nevertheless, sibling relationship dynamics can be strongly impacted when a sibling has a disability (Strohm, 2014). Family dynamics and routines change within the family and relationships between siblings can become more complex. Family patterns may frequently change in response to the specific care needs of a child with a disability. In some instances, siblings may provide vital support or undertake caring activities alone or alongside a parent for their sibling with a disability in order to help fill a care demand in the home.
A vast majority of siblings will maintain a high level of involvement in the lives of their sibling(s) with a disability across the life-course, often exceeding that of parents or service providers (Meyer and Vadasy, 2014; Strohm, 2014). Existing research indicates that young people with caring responsibilities (young carers) fare worse in many areas of their lives than their non-carer peers (Becker & Becker, 2008; Arnold & Heller, 2018). Moreover, there is relatively little known about the direct and indirect challenges faced by a subgroup of sibling carers who provide care exclusively for their sibling(s) with a disability in Ireland, as research in this area is quite limited and underdeveloped.
The principal aim of the study is to explore sibling’s perspectives of their lived experience growing up alongside a brother or sister with a disability in an Irish context. As the study is interested in understanding sibling’s experiences from their own frame of reference, a qualitative research design was selected using a narrative approach in order to capture in-depth and detailed information in relation to the research topic under exploration and to address the current gap in Irish social scientific literature.
Paula holds a BA (Hons) in Psychology & Sociology, Psychology (H.Dip) and a MA in Health Sciences from the National University of Ireland. Paula has many years experience working alongside families of children with chronic illness, special health issues and disability. Paula also has a professional background working within the NGO and charitable sectors as a health promotion practitioner facilitating family, child and youth development programmes and initiatives in educational and community based settings.
E: Paula Jennings - p.jennings5@nuigalway.ie
Uchechukwu Helen Ogbu (Leave of Absence)
Who Am I? - Understanding the processes of identity development amongst African/Irish Youths
Adolescence is a difficult stage in the life of every youth because it is not only a time of extreme change and conflicts confronted with different lifestyles, ideologies, and values but also a transitional period between childhood and adulthood when they are clashing about their identity, asking ‘who am I’. Identity involves synthesizing the various parts of oneself i.e., goals, social roles, relationships into a coherent whole, so it is a period when youths begin to consolidate their self-perceptions into a coherent view of themselves. Marcia (2002) talks about the fourth personality structure of identity as the stage where teenagers face the psychosocial crisis of finding their identity. Child Migration Matters (2016) described identity as being a “massive issue” for young migrants as they struggle to find a sense of their own identity and who they are. My first-hand experience as a migrant parent of a child growing up in Ireland as well as being in supporting, mentoring, and coaching relationships with other African/Irish adolescents ignited my interest in this research. They have always presented the confusion around their identity and where they belong; they constantly express struggling with ‘fitting in’ here and this struggle has led to a lot of them emigrating from Ireland.
The purpose of my research is to explore the concept of ‘identity’ amongst African/Irish youths and to understand the processes they pass through in attaining their true identity. Researchers and theorists state that an individual's identity, especially adolescents’ identity is influenced by the people around them and the environment in which they live. This research will carry out a review of the theories and research within the identity/psychosocial development and bioecological approaches. Semi-structured interviews will be conducted amongst Africa/Irish youth to explore their experiences in identifying ‘who they are’ and their struggle in pursuit of ‘true identity’. It will also explore how the influence of family beliefs/ideologies/religion/customs, peer pressure, school and the environment affect their pursuit for true identity (Bronfenbrenner & Morris, 2006). The study will also explore experiences of practitioners and experts from around the world with regards to identity development among migrant youth to make recommendations for policy and practice in Ireland.
While my interests in migrant issues are vast, I have found special interests in migrant children and youths especially around ‘growing up’ as a minority group and their path to identifying and attaining their identity. I discovered that these issues, the theories, and concept satisfy my intellectual curiosity and provide a meaningful methodological foundation. Therefore, it is from this theoretical perspective and challenging background that I am carrying out my PhD in Child and Youth research at the Child and Family Research Centre, National University Ireland, Galway. One of the interesting aspects of this research and past ones is the ability to place the ideas in the background of current events and emerging issues such as identity clash, empathy, and migrant experience.
Dorothée Potter-Daniau
Could the Irish model of democratic school be a “real Utopia”?
There is a growing movement of “democratic” and self-directed schools in Ireland (and Europe), with four currently operational and several start-up projects (Democratic Education Ireland, 2022). These schools foster a complex community where every adult and child has a voice in making decisions about all aspects of life and activities within the school. However, no recent long-term research has analysed the local characteristics of these models within the Irish educational landscape.
In the literature, similar school models are sites of dilemmas and tensions: between individual and collective rights, protection and participation rights (Zac-Doron & Perry Hazan, 2023), exclusion and inclusion, micro-scale emancipation and aspirations for broader societal changes (Wilson, 2017, Starnawski & Gawlicz, 2021).
This PhD study is conducted through Youth Participatory Action Research (YPAR) in one of these schools, focusing on the balance between individual freedom, collective responsibility and inclusivity.
This project is funded by Research Ireland (Government of Ireland Postgraduate Scholarship).
Dorothée Potter-Daniau holds an MA in Classical Studies, an H. Dip in Education, and an MA in Online Course and E-training Design. She has extensive experience in teaching, training, facilitation, restorative practice, and monitoring and evaluation within the public and charity sectors.
Email: d.potter-daniau1@universityofgalway.ie
