Teisės į sveikatos priežiūrą paradoksas

LTMonografijos pavadinimas kreipia į sveikatos priežiūros sistemos situacijos analizę apskritai. Vis dėlto šiame darbe tyrimo laukas siejamas (nekeliant išankstinės mokslinės problemos) su žmonių, turinčių negalią, jų artimųjų ir specialistų patirtimis Lietuvos sveikatos priežiūros sistemoje, siekiant ne tik jas ištyrinėti, bet ir keisti esamą situaciją (žr. skyrių „Metodologinės žmonių, turinčių negalią, jų artimųjų ir specialistų patirčių sveikatos priežiūros sistemoje tyrimo prielaidos“). Manau, kad sveikatos priežiūros sistemos padėtis, kai įstatymus ir praktiką veikia įvairios aplinkos ir kontekstai, aktuali ne tik žmonėms, kurie vienaip ar kitaip susiję su negalia, bet ir visai visuomenei. Takoskyra tarp žmonių, turinčių negalią ir jos neturinčių, negalima. Čia galioja tie patys principai, kuriuos turime galvoje kalbėdami apie universalų dizainą – turi būti patogu visiems. Tik šį kartą tyrimo lauke – žmonių, turinčių negalią, patirtys. Monografijos pavadinime nusprendžiau to neakcentuoti, nes sveikatos priežiūros sistemos prieinamumas aktualus visuomenei apskritai – ji turi būti prieinama visiems. Tyrinėjama tematika aktuali daugeliui pasaulio šalių, bet šioje monografijoje dėl tyrimo apimties apsiribota tik situacijos Lietuvoje tyrimu. [Iš leidinio]

ENThe title of this monograph focuses on the analysis of the situation of the health care system in general. However, in the monograph, I associate the field of research (without forecasting a preliminary scientific problem) with the experiences of people with disabilities, their relatives, and professionals in the Lithuanian health care system, in order not only to investigate them, but also to change the situation. I think that the paradox of the health care system, when laws and practice are influenced by different environments and contexts, and therefore sometimes find themselves in different spaces, is relevant not only to people related to disability in one way or another, but to society as a whole. There must not and cannot be a dividing line between people with disabilities and those without. The same principles that we have in mind when it comes to universal design apply here as well. It should be good for everyone. Here, the research field includes the experiences of people with disabilities and their relatives, and professionals providing services to people with disabilities. However, I decided not to emphasise this in the title of the monograph, because the accessibility of the health care system is relevant to society in general. The health care system must be accessible to all. The research topic is relevant to many countries in the world, but due to the scope of the research, this monograph focuses on the situation in Lithuania.A study of scientific works reveals that the experiences of people with disabilities and their relatives, and professionals working with people with disabilities in the health care system, are very little explored, or only narrow aspects are explored. At first glance, there seems to be quite a lot of research work, but on closer inspection, it can be seen that only a few researchers work consistently and systematically on this topic. In analysing a ten-year period, I found only three monographs and several scientific studies that I could only relatively associate with the field of research. Out of the nine dissertations written over a decade, I have noticed continuity in the work of only one researcher. The range of research topics is wide, but it should be regarded as instantaneous, because the continuous and systematic work of only a few scientists is revealed quantitatively. The findings of the study reveal that researchers in the social sciences are more interested in this topic than those in the biomedical sciences. In most cases, the research is not characterised by inter-disciplinarity. Researchers in the social sciences usually explain the situation under investigation through the prism of the social model. The human rights model of disability, as a theoretical concept, emerges in the work of only a few researchers. Articles representing the field of biomedicine are sometimes based on a clinical model. It can be stated that, with the research presented in this monograph, I entered a field that is little researched in Lithuania.The project commitments (the research presented in the monograph is part of the scientific project ‘Researching Specialist Training to Provide Holistic Help to People with Disabilities in the Health Care System while Improving Researcher Competencies’ [Project code 09.3.3-LMT-K-712-01-0174] conducted by Klaipėda University) required the research question to be put: What experiences, needs and challenges of people with disabilities, their relatives and professionals providing services to people with disabilities are predominant in the Lithuanian health care system? This was the question that was dominant in the research data collection phaseHaving collected the research data, listened and read transcripts of conversations, by their abundance (I had to read and delve into thousands of pages), it was possible to understand what a rich and detailed experience by people with disabilities, their relatives and professionals, I had to deal with. The written text material, the thoughts expressed by the participants, included both recent experiences and events that had occurred many years ago, and were narrated in the contexts of different environments. Thinking about the data analysis, the formation of findings and the monograph, I had to look for a concrete conceptual basis with clear boundaries, which would not get lost in the experiences of the research participants, and which would help to understand not only the contours of the situation, but also give a glimpse of the essence. Therefore, in terms of data analysis, I chose the UN Convention on the Rights of Persons with Disabilities (the Convention on the Rights of Persons with Disabilities and its Optional Protocol, 2006) as a conceptual approach, and put the following research questions: What are the theoretical and practical approaches to the UN Convention on the Rights of Persons with Disabilities in Lithuania? [...]. [From the publication]

• Sociologija / Sociology
• Teisė / Law