Patients´ Perspective

Which CoHeReNt members are involved? 

Lucia Bosáková (lucia.bosakova@upjs.sk) 

Zuzana Dankulincová Veselská, Andrea Madarasová Gecková, Daniela Husárová, Jaroslava Kopčáková, Daniela Fiľakovská Bobáková, Ján Hlodák, Ľubica Pamulová 

What does the team do? 

Our research team investigates patient experiences within a framework established by the DIPEx International research network, based at the University of Oxford. We focus on generating culturally sensitive and practice-informed evidence regarding health experiences in Slovakia, as part of a global initiative encompassing 14 countries.  We provide insights that extend beyond academic circles to reach the general public through our dedicated website, https://rozhovoryozdravi.sk/. Our work includes creating a comprehensive database of health conditions and offering personal narratives that illustrate how individuals navigate their health challenges. This research aims to empower patients and enhance their understanding, benefiting not only them but also their families in understanding their loved ones’ experiences. Our findings also play a crucial role in training healthcare professionals and informing policymakers, contributing to efforts that address health disparities and improve care systems. We examine a range of medical topics, selecting them based on the expertise and experiences of our research team, national significance, and feedback from both professional and public inquiries.  

What methods does the team use? 

Our research team build up on previous research on quality of life in chronic patients as well as on health literacy of chronic patients. To capture people’s experiences with health problems, diseases, and the care provided, we conduct qualitative narrative interviews. Each collection of stories on our specialized website is referred to as a “module,” created from a series of in-depth qualitative interviews with individuals in Slovakia about their health experiences. 

Vacant PhD positions

System of care for adolescents with emotional and behavioural problems: parents´perspective – supervisor: assoc. prof. Lucia Bosáková, PhD

Aim: The aim of the thesis will be to map the Slovak system of care provided for adolescents with emotional and behavioural problems (EBP) and to assess its characteristics, potential barriers, and perceived suggestions for improvement to make the system more effective. 

Anotation: Emotional and behavioural problems of adolescents can be perceived as a state in which adolescents are fundamentally prevented from actively participating and handling aspects of life which are typical for their age group and thus fully realizing their potential. Relatively few is known about the specific content of the offered care and even less about its short-term and long-term consequences. Dissertation within the project Care4Youth sets as a goal to map the existing system of care for adolescents with emotional and behavioural problems and its characteristics and potential limits or deficiencies from the viewpoint of their parents/legal guardians. Everything should be done with the aim of facilitating the proposal of consensual improvements for the existing system of care from the viewpoint of all participating actors through direct participation of the target population itself that is those who are the subject of the research.

Ongoing PhD studies

Ľ. Pamulová: System of care for adolescents with emotional and behavioural problems: the view of adolescents – supervisor: assoc. prof. Zuzana Dankulincová, PhD

Aim: The aim of the thesis will be to map the Slovak system of care provided for adolescents with emotional and behavioural problems and to assess its characteristics, potential barriers, and perceived suggestions for improvement to make the system more effective.  

Anotation: Emotional and behavioural problems of adolescents can be perceived as a state in which adolescents are fundamentally prevented from actively participating and handling aspects of life which are typical for their age group and thus fully realizing their potential. Relatively few is known about the specific content of the offered care and even less about its short-term and long-term consequences. Dissertation within the project Care4Youth sets as a goal to map the existing system of care for adolescents with emotional and behavioural problems and its characteristics and potential limits or deficiencies from the viewpoint of adolescents with emotional and behavioural problems. Everything should be done with the aim of facilitating the proposal of consensual improvements for the existing system of care from the viewpoint of all participating actors through direct participation of the target population itself that is those who are the subject of the research. 

Since: September 2024 

J. Hlodák: Living with narcolepsy: A patients’ perspective – supervisor: Prof. Andrea Madarasová Gecková, PhD, co-supervisor: assoc. prof. Eva Feketeová, MD, PhD

Aim: The aim is to explore various aspects of narcolepsy and its burden on patients and to understand what it is like to live with narcolepsy. 

Anotation: Narcolepsy is a rarely occuring chronic sleep disorder that manifests itself in excessive daytime sleepiness, daytime microsleeps, cataplexy, disturbed nocturnal sleep, and parasomnias. The symptomatology of this disease significantly affects the daily life of patients, but the awareness of this disease and especially of its effects is very low among the lay and professional public. The aim of this work is to describe and better understand what it means for patients suffering from narcolepsy to live with this diagnosis. To accomplish this goal, we will use interviews with patients and a qualitative narrative research methodology.  

Since: September 2022 

K. Paclíková:  Barriers in the psychosocial care for adolescents: a mixed methods approach – supervisor: assoc. prof. Zuzana Dankulincová, PhD

Aim: The aim of the thesis is to map the system of care provided to adolescents with emotional and behavioral problems and to assess barriers and perceived suggestions for improving the system, with the aim of making it more effective. The thesis focuses on the perspectives of adolescents with problems, their parents and care providers, who are all part of the care system utilizing a mixed-methods research design. 

Anotation: Emotional and behavioural problems of adolescents can be perceived as a state in which adolescents are fundamentally prevented from actively participating and handling aspects of life which are typical for their age group and thus fully realizing their potential. Relatively few is known about the specific content of the offered care and even less about its short-term and long-term consequences. Dissertation within the project Care4Youth sets as a goal to map the existing system of care for adolescents with emotional and behavioural problems and its characteristics and potential limits or deficiencies from the viewpoint of adolescents with emotional and behavioural problems, their parents and providers of care utilizing the mixed-methods approach. Everything should be done with the aim of facilitating the proposal of consensual improvements for the existing system of care from the viewpoint of all participating actors through direct participation of the target population itself that is those who are the subject of the research. 

Since: September 2017

Completed PhD thesis

I. Skoumalová: Health literacy and health-related outcomes in dialysed patients, 2022

J. Macková: Families at risk and the role of the care system, 2022.

M. Lacková Rebičová: Adverse childhood experiences among adolescents with emotional and behavioural problems, 2021.

Show more 

M. Mrázová: Vplyv vybraných rizikových a protektívnych faktorov na zdravý vývin adolescentov s emocionálnymi a behaviorálnymi problémami [Influence of selected risk and protective factors for healthy development of adolescents with emotional and behavioral problems], 2018.  

E. Čepová: Konceptualizácia a meranie zdravotnej gramotnosti a jej využitie vo verejnom zdravotníctve [Concept of measurement of health literacy and its utilization in public health], 2018. 

M. Majerníková: Self-rated health and mortality after kidney transplantation, 2013, http://irs.ub.rug.nl/ppn/369598342 

J. Benka: Living with rheumatoid arthritis: do personal and social resources make a difference, 2012, http://irs.ub.rug.nl/ppn/354811118 

T. Dubayová: Parkinson’s disease – psychological determinants of quality of life, 2010, http://irs.ub.rug.nl/ppn/330630423 

M. Krokavcová: Perceived health status in multiple sclerosis patients, 2009, http://irs.ub.rug.nl/ppn/318259753 

E. Havlíková: Fatigue, mood disorders and sleep problems in patients with Parkinson’s disease, 2008, http://irs.ub.rug.nl/ppn/315252448 

Z. Škodová: Coronary heart disease from a psychosocial perspective: socioeconomic and ethnic inequalities among Slovak patients, 2008. 

J. Rosenberger: Perceived health status after kidney transplantation, 2002-2006, http://irs.ub.rug.nl/ppn/297874527 

I. Nagyová: Self-rated health and quality of life in Slovak rheumatoid arthritis patients, 1996-2005, http://irs.ub.rug.nl/ppn/274118556 

Ongoing projects

Adolescents with emotional and behavioral problems and their families in the system of care

Emotional and behavioural problems of adolescents can be perceived as a state in which adolescents are fundamentally prevented from actively participating and handling aspects of life which are typical for their age group and thus fully realizing their potential. Relatively few is known about the specific content of the offered care and even less about its short-term and long-term consequences. The project Care4Youth sets as a goal to map the existing system of care for adolescents with emotional and behavioural problems and its characteristics and potential limits or deficiencies from the viewpoint of adolescents with emotional and behavioural problems and their parents/legal guardians. Everything should be done with the aim of facilitating the proposal of consensual improvements for the existing system of care from the viewpoint of all participating actors through direct participation of the target population itself that is those who are the subject of the research. 

Funding: Research and Development Support Agency under Contract No. APVV-21-0079. 

Past projects

Psychosocial development of children with emotional and behavioural disorders in the system of care – longitudinal study. 

In close cooperation with experts from the field of psychiatry, psychology, and social work we will follow the trajectory of young clients with emotional and behavioural disorders through the system of preventive, social and health care. We would be interested in the extent to which clients enter and exit to and from the care or transition from one type of care to another within the system, taking into account their background. Lessons learned will allow us to evaluate the effectiveness of our system and the impact on life satisfaction and quality of life of clients. 

Funding: Research and Development Support Agency under Contract No. APVV-15-0012.

Utilization of the health literacy profile to improve the management of chronic diseases

Our research in this area focused on health literacy profiles typical for various chronic diseases and their association with functional health, quality of life, and mortality. We aimed to identify the key areas to target interventions that would increase patients’ health literacy and improve the responsiveness of the healthcare system to specific health literacy-related needs of patients with various health conditions.  In collaboration with the FMC dialysis services, we conducted the research focusing on the health literacy in dialyzed patients and on its association with adherence, psychological well-being, quality of life, functional health, and mortality.In collaboration with 1st Stomatology clinic (Faculty of Medicine, P.J. Safarik University) and the Department of Dental Hygiene (Faculty of Health Care, University of Presov) our team studied the effects of the individual level of health literacy on the oral health status of the patients from dental hygiene clinics around Slovakia. 

Funding: Research and Development Support Agency under Contract No. APVV-16-0490.