PPI – Ideas in ALL

30/05/202328/11/2023

Tuesday May 30th: World MS Day

Lived Experiences

Author Bio: Dr Rebecca Maguire is an Associate Professor in the Department of Psychology at Maynooth University. Her research interests include health and wellbeing in chronic illness, caregiver burden, health-related expectations, qualify of life and psycho-oncology. In addition, Rebecca has been living with multiple sclerosis for a number of years, which has influenced her research agenda. She is also a board member of MS Ireland.

Dr Rebecca Maguire

Tuesday 30^th May marks World MS Day – an occasion celebrated by the global MS community with the aim of raising awareness of the condition known as multiple sclerosis (MS). In Ireland, it is estimated that approximately 9,000 people live with MS, however this number could be higher, with one study suggesting that around 300 people are diagnosed in the country every year. Internationally, almost three million people live with the condition, with rates twice as high in women than in men.

Simply put, MS is a chronic, often progressive, neurological condition in which the body’s immune system attacks the central nervous system, resulting in damage to myelin, thereby disrupting signals to and from the brain (see definition from the US National MS Society). Anecdotally, almost all people will have heard of MS, with many having a family member, friend or colleague living with the condition. However, few people will truly understand what MS is, unless, of course, they live with it themselves. To a certain extent I am privileged in this respect, having lived with MS for a number of years now, although my experience has also made me very aware that no two people with MS are the same. The disease can have wide-ranging, fluctuating and variable impacts for those affected, potentially leading to high levels of disability for some, while having minimal effects on the lives of others. Similarly, although some people with MS may require the support of caregivers, many others continue to live independently, holding down demanding jobs, juggling caring responsibilities and whatever else live entails. However, for almost all affected, MS and its management brings additional physical and psychological burdens which can, at times, be difficult to navigate.

12/05/202328/11/2023

Nothing Without Us: Considering Public Patient Involvement in Research

Social Technologies

Author: Joan Alaboson is a Doctoral Researcher in the Department of Psychology, Maynooth University. She has a background in medicine and an MSc in Public Health with broad research interests in non-communicable diseases, particularly mental health, social determinants of health and quality of life.

‘What can be done to make settling into the PhD, better?’ asked Dirk, the Director of the Science Foundation Ireland’s Centre for Research Training in Advance Networks for Sustainable Societies (ADVANCE CRT) at a meeting with funded PhD students. Being the only one in the room that had recently commenced my studies, at that moment I felt there was a deep sense of concern for my well-being by ‘management’. It was the first of such fora I’d attended, and I left with a lasting impression of being in relatable company during my studies.

True inclusion, however, could often be elusive, despite best efforts. There is hardly any organization, entity or group that does not seek to represent the interests of those concerned. It may be expressed in a vision, mission, goals, or activities. Yet, many can be left out. Sometimes, it is a fault inherent in group development, when diverse people are not present to consciously bring unique perspectives to the fore. Similarly, it may result from work protocols or culture that fail to recognize and may neglect, systematically, the views and or needs of diverse people.

30/04/202117/10/2022

Digital Visual Arts and Cognitive Neuroscience: Keeping the “me” in memory research

Social Technologies

Author: Dr Richard Roche, Dept of Psychology

Maynooth Illuminations exhibition space - Maynooth University — Maynooth Illuminations exhibition space – Maynooth University

Memory is arguably the most important cognitive function we possess, and its loss leaves a profound gap in many aspects of life. The progressive deterioration of brain structures responsible for memory – so common in old age, and even more so in degenerative conditions – robs people of so much: their most treasured moments, their ability to recognise friends and family, their independence, their confidence, their very sense of self. While pharmaceutical remedies for memory decline remain unsuccessful, research with lifestyle-based, non-pharmacological interventions may offer promising avenues for the future. Among these approaches in Reminiscence Therapy, whereby older people – often in group settings – meet regularly to actively recall and share memories from earlier life epochs, with the process often steered by a moderator. At one time, older adults reminiscing was considered a worrying sign, suggesting some form of regression, but since Butler’s seminal paper in 1961, the benefits of reminiscence – resolving affairs, giving meaning to life – have been well studied, leading to the adoption of Reminiscence Therapy in many care homes and hospitals.

15/03/202117/10/2022

Including Patients and the Public in Research

Stories/Lived Experience

Author: Jamie Howell; PhD researcher, Department of Psychology, Maynooth University

Animation, 6 people on a blue background 3 healthcare practitioners 2 elderly people 1 person in a wheelchair and a female. — BioMed Central-

In recent years, health researchers have begun to embrace the concept of patient and public involvement (PPI). Rather than conducting research on or for various populations, we have begun to move towards working with patients and the public by prioritizing their needs and concerns. This allows researchers to learn from those who have lived experience and can help them design research projects which are more beneficial to the population being researched.

I first heard of PPI during my MSc, when my supervisor, Dr Rebecca Maguire encouraged me to include aspects of PPI in my research. Dr Maguire has worked as both a researcher and as a patient advocate, and her expertise has been invaluable to my own research.

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