Patients' experiential knowledge recognition - a state of the art
Résumé
Alongside the movement of patients' participation within the health system, the knowledge drawn from the experience of illness has also changed the patients' roles in many aspects. The importance of chronic illness has stimulated the development of patients' education about their illness in order to support them in their symptoms management and to improve their life quality. Several ideal typical roles of patients are nowadays in relation with health professionals: those who consider that their illness brought them experiential knowledge that could be useful to the health system and the society. They are acting with their peers (peer-support), in educational settings (user-trainers, user-researchers), in hospitals (peer-educators). Meanwhile, several organizations lead by ill people and their relatives, have also experienced new relationship with knowledge production, particularly in the case of not academically well known syndromes. This new kind of empowerment of patients as medical knowledge producers can be compared to other new situations in which non-scientists are involved in research processes, such as popular epidemiology or scientific leisure club. All those situations transgress the division of people into those able or unable to deal with scientific issues. Besides, those situations offer an opportunity to try to clarify the idea of "lay scientific" knowledge, which is a main question for "science and citizens" programmes.
Poleg gibanja za participacijo bolnikov in bolnic v zdravstvenem sistemu je bolnikovo vlogo v marsikaterem pogledu spremenilo tudi znanje, ki izhaja iz izkušnje z boleznijo. Pomen kronične bolezni je spodbudil tudi razvijanje izobraževanja bolnikov in bolnic o njihovi bolezni, da bi jih podprli pri spopadanju s simptomi in izboljšali kakovost njihovega življenja. Danes v odnos s strokovnjaki na področju zdravja vstopa več profilov pacientov in pacientk, ki menijo, da jim je bolezen dala izkustveno znanje, ki bi lahko koristilo zdravstvenemu sistemu in družbi. Delujejo z vrstniki (vrstniška podpora), v izobraževalnih okoljih (uporabniki, ki usposabljajo druge uporabnike, uporabniki-raziskovalci), v bolnišnicah (osebe, ki izobražujejo vrstniške podpornike). Številne organizacije, ki jih vodijo bolniki in bolnice ter njihovi bližnji, vzpostavljajo nove odnose do ustvarjanja znanja, zlasti na področju tistih sindromov, ki so z akademskega vidika slabo raziskani. Takšno krepitev moči pacientov kot oseb, ki razvijajo znanje, lahko primerjamo z drugimi situacijami, v katerih so osebe, ki niso znanstveniki, vključeni v raziskovalne procese, denimo v civilno pobudo na področju epidemiologije ali v društvih ljubiteljev znanosti. Vse te situacije pravzaprav kršijo kategorizacijo na področju izobraževanja, saj ta določa, kdo se je sposoben ukvarjati z znanstvenimi vprašanji, hkrati pa ponujajo možnost, da jasno opredelimo "znanstveno znanje laikov", ki je poglavitno vprašanje programov o "znanosti in državljanih".
Loading...