Chronically Ill and Online Peer-to-Peer Support

Tässä tutkielmassa tutustuttiin kroonisesti sairaiden vertaistukiyhteisöihin verkossa ja siihen, kuinka potilaat käyttävät niitä ja miten ne vaikuttavat heidän hyvinvointiinsa. Lisäksi tutkittiin, onko verkon vertaistukiyhteisöjen käyttö ja vaikutukset samankaltaisia suomalaisten narkolepsiapotilaid...

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Bibliografiset tiedot
Päätekijä: Nousiainen, Suvi
Muut tekijät: Informaatioteknologian tiedekunta, Faculty of Information Technology, Informaatioteknologia, Information Technology, Jyväskylän yliopisto, University of Jyväskylä
Aineistotyyppi: Pro gradu
Kieli:eng
Julkaistu: 2020
Aiheet:
Linkit: https://jyx.jyu.fi/handle/123456789/69931
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author Nousiainen, Suvi
author2 Informaatioteknologian tiedekunta Faculty of Information Technology Informaatioteknologia Information Technology Jyväskylän yliopisto University of Jyväskylä
author_facet Nousiainen, Suvi Informaatioteknologian tiedekunta Faculty of Information Technology Informaatioteknologia Information Technology Jyväskylän yliopisto University of Jyväskylä Nousiainen, Suvi Informaatioteknologian tiedekunta Faculty of Information Technology Informaatioteknologia Information Technology Jyväskylän yliopisto University of Jyväskylä
author_sort Nousiainen, Suvi
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description Tässä tutkielmassa tutustuttiin kroonisesti sairaiden vertaistukiyhteisöihin verkossa ja siihen, kuinka potilaat käyttävät niitä ja miten ne vaikuttavat heidän hyvinvointiinsa. Lisäksi tutkittiin, onko verkon vertaistukiyhteisöjen käyttö ja vaikutukset samankaltaisia suomalaisten narkolepsiapotilaiden joukossa. Krooniset sairaudet hankaloittavat elämää monin tavoin. Vertaistuki auttaa potilaita ymmärtämään sairautta paremmin ja tuntemaan itsensä normaaliksi sairaudesta huolimatta. Kroonisesti sairaiden määrä on ollut kasvussa ympäri maailman, joten myös vertaistuen tarve kasvaa. Internet tarjoaa uudenlaisia tapoja toteuttaa vertaistukea. Nettiyhteisöt ja sosiaalinen media mahdollistavat potilaiden yhteydenpidon riippumatta heidän fyysisistä sijainneistaan. Aihetta tutkittiin kirjallisuuskatsauksen ja haastatteluiden avulla. Aluksi tutustuttiin aiempiin tutkimuksiin kroonisesti sairaiden verkossa tapahtuvasta vertaistuesta ja terveysviestinnästä. Sen jälkeen suomalaisille narkolepsiapotilaille järjestettiin puolistrukturoituja haastatteluja. Haastattelut analysoitiin teemoittelemalla. Suomalaiset narkolepsiapotilaat ja muut kroonisesti sairaat käyttävät verkon vertaistukiyhteisöjä pääasiassa keskustellakseen kokemuksistaan ja jakaakseen tietoa taudista. Verkossa tapahtuvalla vertaistuella on monia hyötyjä: se luo tunteen yhteydestä sekä auttaa potilaita tuntemaan itsensä vähemmän eristyneiksi ja löytämään uutta tietoa. Vertaisten kanssa juttelu auttaa hyväksymään taudin normaalina osana elämää. Suomalaiset narkolepsiapotilaat olivat huomanneet samanlaisia hyötyjä. Verkossa tapahtuva vertaistuki saattaa asettaa potilaalle liian korkeita odotuksia tai saada hänet ottavaan muiden negatiiviset kokemukset henkilökohtaisesti. Jotkut saattavat luottaa vertaisiinsa liikaa ja noudattaa heiltä saamiaan huonoja neuvoja. Suomalaiset narkolepsiapotilaat eivät olleet huomanneet tämän kaltaisia huonoja vaikutuksia. This master’s thesis explored online peer-to-peer communities for chronically ill, how patients use them and how they affect their well-being. In addition to that, it was researched if the usage and effects are similar amongst Finnish narco-lepsy patients. Chronic diseases complicate life in many ways. Peer-to-peer support helps patients to understand their disease better and to feel more normal despite the disease. The amount of chronically ill patients has been increasing globally which means that there is an increasing need for peer-to-peer support. The internet offers new ways to conduct peer-to-peer support. Online communities and social media allow patients to interact with each other re-gardless of their physical location. The topic was researched with a literature review and interviews. At first, earlier studies about chronically ill and online peer-to-peer support or online health-communication were explored. After that, semi-structured interviews were conducted with Finnish narcolepsy patients. Interviews were analyzed with thematic analysis. Finnish narcolepsy patients as well as other chronically ill use online peer-to-peer support communities mainly to discuss their own experiences and share information about their disease. Online peer-to-peer support has many benefits: it gives a sense of connec-tion, and helps to feel less isolated and to find new information. Chatting with peers helps to accept the disease as a normal part of one’s life. Finnish narco-lepsy patients had experienced similar benefits. Online peer-to-peer support might set up too high expectations or make one take his peers’ negative experiences too personally. Some patients might trust their peers too much and take poor advice from them. Finnish narcolepsy patients had not experienced these negative effects.
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spellingShingle Nousiainen, Suvi Chronically Ill and Online Peer-to-Peer Support Tietojärjestelmätiede Information Systems Science 601 kroonikot sosiaalinen media verkkoyhteisöt vertaistuki kokemukset sosiaaliset verkostot krooniset taudit vuorovaikutus Internet chronics (patients) social media online communities peer support experiences (knowledge) social networks chronic diseases interaction
title Chronically Ill and Online Peer-to-Peer Support
title_full Chronically Ill and Online Peer-to-Peer Support
title_fullStr Chronically Ill and Online Peer-to-Peer Support Chronically Ill and Online Peer-to-Peer Support
title_full_unstemmed Chronically Ill and Online Peer-to-Peer Support Chronically Ill and Online Peer-to-Peer Support
title_short Chronically Ill and Online Peer-to-Peer Support
title_sort chronically ill and online peer to peer support
title_txtP Chronically Ill and Online Peer-to-Peer Support
topic Tietojärjestelmätiede Information Systems Science 601 kroonikot sosiaalinen media verkkoyhteisöt vertaistuki kokemukset sosiaaliset verkostot krooniset taudit vuorovaikutus Internet chronics (patients) social media online communities peer support experiences (knowledge) social networks chronic diseases interaction
topic_facet 601 Information Systems Science Internet Tietojärjestelmätiede chronic diseases chronics (patients) experiences (knowledge) interaction kokemukset kroonikot krooniset taudit online communities peer support social media social networks sosiaalinen media sosiaaliset verkostot verkkoyhteisöt vertaistuki vuorovaikutus
url https://jyx.jyu.fi/handle/123456789/69931 http://www.urn.fi/URN:NBN:fi:jyu-202006154175
work_keys_str_mv AT nousiainensuvi chronicallyillandonlinepeertopeersupport