La participación de los pacientes con diabetes en grupos de apoyo online: implicaciones físicas y emocionales e impacto en la comunicación doctor-paciente

IC – Re is a Cien í ica de In o mación y Comunicación 18 (2021) ∙ pp. 327-349 ∙ E-ISSN: 2173-1071 ∙ h ps://dx.doi.o g/10.12795/IC.2021.I18.16 IMÁGENES, IMAGINARIOS Y NUEVAS NARRATIVAS EN CONTEXTOS DE CRISIS Images, imagina ies and new na a i es in c isis con ex s La pa icipación de los pacien es con diabe es en g upos de apoyo online: implicaciones ísicas y emocionales e impac o en la comunicación doc o -pacien e THE PARTICIPATION OF PATIENTS WITH DIABETES IN ONLINE SUPPORT GROUPS: PHYSICAL AND EMOTIONAL IMPLICATIONS, AND IMPACT ON THE DOCTOR-PATIENT COMMUNICATION Noelia He e o Uni e si a Pompeu Fab a noelia.he e [email protected] .edu Resumen Los pacien es con diabe es sien en la necesidad de apoyo social, an o emocional como in o ma i o, que pueden encon a en edes sociales y g upos de apoyo online. Es e a ículo adop a un en oque comunica i o basado en una e isión de la li e a u a exis en e pa a a a de abo da los p oblemas que dicha pa icipación puede ocasiona en lo que espec a al bienes a ísico y emocional de las pe sonas que padecen diabe es. Palab as cla e Redes sociales en línea, apoyo social, g upos de au oayuda, comunicación social, edes sociales 328 Noelia He e o IC – Re is a Cien í ica de In o mación y Comunicación 18 (2021) ∙ pp. 327-349 ∙ E-ISSN: 2173-1071 ∙ h ps://dx.doi.o g/10.12795/IC.2021.I18.16 Abs ac Pa ien s wi h diabe es eel he need o social suppo , bo h emo ional and in o ma ional, which can be ound in social ne wo ks and online suppo g oups. This a icle akes a communica i e app oach based on a e iew o he exis ing li e a u e o y and add ess he p oblems ha said pa icipa ion can cause in ega ds o he physical and emo ional well-being o people su e ing om diabe es. Keywo ds Online social ne wo ks, Social suppo , Sel -help g oups, Social communica ion, Social media. Suma io / Summa y 1. In oducción / In oduc ion 2. Ma co eó ico / Theo e ical amewo k 3. Me odología / Me hodology 4. Resul ados / Resul s 4.1. Apoyo social pa a pacien es con diabe es / Social suppo o pa ien s wi h diabe es 4.2. La p oblemá ica del consumo de in o mación en g upos de apoyo online / The issues wi h in o ma ion consump ion in online suppo g oups 5. Discusión / Discussion 6. Conclusiones / Conclusions 1. In oduc ion Nowadays, people who su e om a ch onic illness (Fox, 2011) inc easingly pa i- cipa e in digi al communi ies (Be an, 2017)- which include online suppo g oups - in o de o sha e hei eelings, ge emo ional suppo and/o ob ain in o ma- ion abou hei disease. Managing ei he ype o diabe es equi es an unde s- anding o he disease, as well as emo ional and in o ma ional suppo . In he case o pa ien s wi h Type 1 Diabe es Melli us (DM1), as a new sou ce o lea ning; and o pa ien s wi h Type 2 Diabe es Melli us (DM2), as a sou ce o upda ing o elea ning in o ma ion al eady acqui ed. Online suppo g oups a e o ums whe- e pa icipan s eel suppo ed in cases o emo ional dis ess, which inc ease as a esul o he demanding sel -ca e egimens and medical complica ions o diabe- es melli us. The so-called “s ess-bu e ing model” explains how social suppo can p o ide he ools o manage disease sel -ca e and e en imp o e i s condi- ion (Ben-Si a, 1985; Pey o & McMu y, 1992). Acco ding o his model, pe cei ed social suppo weakens he nega i e pe cep ion o he s ess su e ed due o a ch onic pa hology and i s impac on he pa ien ’s heal h o quali y o li e. In he case o DM2, a s udy by Lee e al. showed he impo ance o in o mal heal h su- 329 La pa icipación de los pacien es con diabe es en g upos de apoyo online: … IC – Re is a Cien í ica de In o mación y Comunicación 18 (2021) ∙ pp. 327-349 ∙ E-ISSN: 2173-1071 ∙ h ps://dx.doi.o g/10.12795/IC.2021.I18.16 ppo e s ( amily, iends) in gi ing he pa ien he au onomy o cope wi h he daily ou ines in ol ed in disease managemen (Lee e al., 2018). This a icle is a heo e ical essay ha in ol es a e iew o he exis ing li e- a u e and aims o add ess, om a heo e ical poin o iew, he ela ionship be ween he in o ma ion ha an indi idual wi h diabe es can ind in an online suppo g oup, he possible consequences o consuming his in o ma ion, and he ole o he heal h p o essional wi hin said p ocess o in o ma ion consump- ion and disease managemen . The aim is o cla i y he e idence ound, since i has p o en o be o en sca ce and con adic o y. The p oposed app oach is based on he heo y o social ne wo ks and links, and applied o online en i- onmen s, wi h he aim o iden i ying he possible ad e se e ec s o commu- nica ing wi hin social ne wo ks wi h he pu pose o in o ma ion consump ion and wi hou any ype o media ion. Subsequen ly, concep ual and heo e ical ools a e p o ided om a communica i e pe spec i e o op imize he possible bene i s o doc o -pa ien communica ion and in e pe sonal communica ion wi hin social ne wo ks. 2. Theo e ical amewo k Humans ha e he need o belong o a communi y and o choose hei ne wo ks h ough sel -selec ion, e en hough he e a e o he psychological ac o s ha can in luence hei decisions (Ch is akis & Fowle , 2009). Tha is why hey o ga- nize hemsel es in o communi ies, which in u n lead o social ne wo ks. A social ne wo k is a ne wo k o in e ac ions be ween di e en nodes. The nodes ep esen he ac o s and he edges a e he ela ionships be ween hem (Agga wal, 2011). In online en i onmen s, he psychological and sociological o ces in ol ed in social ne wo ks c ea e in e dependence among use s and encou age he o ma- ion o online he ds, mainly due o ou e olu iona y biology (which awakens ou he ding ins inc s) and ou in e ac ing b ain sys ems (Baddeley, 2010). Facebook is cu en ly he online social ne wo k wi h he mos ac i e use s, and i connec s mo e han 3.5 billion people wo ldwide (Hoo sui e, 2019) who a e willing o c ea e con en , collabo a e and sha e hei knowledge. The key ac o s a ec ing he dissemina ion o a message in online social ne wo ks a e homophily and social in luence (Bakshy e al., 2012). Homophily is a psychogenic beha io based on simila i y: simila i y builds connec ion. The- e o e, indi iduals end o associa e wi h people who a e simila o hemsel es (McPhe son e al., 2001). On he o he hand, we de ine in luence as he powe ha someone o some hing has o a ec o change someone o some hing else in an 330 Noelia He e o IC – Re is a Cien í ica de In o mación y Comunicación 18 (2021) ∙ pp. 327-349 ∙ E-ISSN: 2173-1071 ∙ h ps://dx.doi.o g/10.12795/IC.2021.I18.16 indi ec bu impo an way, wi h he aim o achie e a g ea e good o he g oup, eam o o ganiza ion (Wilson e al., 2016). Because he e a e mul iple ac o s ha can a ec an indi idual, di e en ypes o in luence a e aken in o accoun (Schee & S e n, 1992); social in luence is he phenomenon ha occu s when an indi idual’s beha io is likely o become assimila ed in o ha o his o he social ci cle o e ime. The analysis o social in luence in social ne wo ks is impo an a bo h he social and beha io al le els, as i can help o explain people’s beha io and decision-making p ocess (Peng, Wang e al., 2017; Peng, Yang e al., 2017). Pa ien suppo g oups we e i s concei ed in he 1980s o imp o e he quali y o li e o women wi h me as a ic b eas cance h ough emo ional su- ppo (Spiegel e al., 1994). These g oups equi ed he p esence o a medical eam (physicians, he apis s, nu ses), so hey we e expensi e o implemen . Today, hese ypes o (o line) g oups a e no widesp ead, and a e missing in he case o diabe es ea men . Online suppo g oups, howe e , ha e been lou ishing in ecen yea s, as hey combine he concep o a suppo g oup wi h he unc ionali y o an online o um. Online o ums a e “g oups o people wi h common in e es s and p ac ices who communica e egula ly and o e a pe iod o ime in an o ganized manne on he In e ne wi h a common loca ion o mechanism” (Ridings e al., 2002). Online o ums a e cha ac e ized by 24/7 ubiqui ous a ailabili y, anonymi y, selec i e disclosu e, and social ne wo king (Whi e & Do man, 2001). Online social g oups unc ion in a e y pa icula way. Typically, a use ’s i s expe ience in discussing o con empla ing he communi y’s knowledge is o espond o o in e ac wi h ano he use ’s pos (Landq is , 2016). The e o e, he co e ac i i y o hese g oups e ol es a ound sha ing opinions and pe so- nal expe iences, as well as selec ing and dis ibu ing in o ma ion o mee he needs o each au ho . Discussion h eads in online o ums can be iewed as a o m o g oup communica ion, as hey ha e he same cha ac e is ics as o line ( ace- o- ace) suppo g oups: namely size, in e dependence, ask, iden i y, and no ms (G i senko, 2016). Some popula online si es such as Facebook o Twi e ha e become commu- ni y spaces whe e people wi h a ch onic disease, such as diabe es, can in e ac wi h each o he in a simila way as hey would in a o um (Zhu e al., 2015). Wi h an a e age o 1.59 billion daily use s (Facebook, 2019), Facebook (FB) is cu en ly one o he mos popula si es among he popula ion. FB allows o he quick and easy o ganiza ion and managemen o public, p i a e o sec e g oups. These e ol e a ound any opic ha he use s, who c ea ed hem in he i s place, may be in e es ed in, including diabe es. In o de o join a p i a e g oup, a use mus be in i ed by a cu en membe o he g oup (Facebook, 2021). 331 La pa icipación de los pacien es con diabe es en g upos de apoyo online: … IC – Re is a Cien í ica de In o mación y Comunicación 18 (2021) ∙ pp. 327-349 ∙ E-ISSN: 2173-1071 ∙ h ps://dx.doi.o g/10.12795/IC.2021.I18.16 Resea ch con i ms ha online o ums and FB g oups c ea ed o he pu po- se o discussing heal h- ela ed opics a e e y simila : hey allow pa icipan s o sha e hei ideas in a pos on which o he membe s a e able o espond, as i i we e a h ead in a o um. In addi ion, bo h FB and online o ums allow he exchange o p i a e messages be ween use s. In gene al, FB g oups and heal- h- ela ed online o ums a e h i ing and p o ide suppo o hei use s (Nieu- wboe e al., 2013). This suppo can be o di e en ypes, speci ically in e ms o con i ma ion, in o ma ion, ad ice, and empa hy (Ca lsson e al., 2016). In ge- ne al, heal h- ela ed online suppo g oups can be used o ul ill he need o in o ma ion - which is s ongly ela ed wi h being able o ask speci ic ques ions -, o o ob ain emo ional suppo - which consis s o sha ing opinions and p o- iding suppo o o he s (Rei ege s e e al., 2017; Rains & Kea ing, 2015; Howa d e al., 2001). The e o e, gi en ha people c ea e s onge bonds wi h indi iduals who a e simila o hem (Ch is akis & Fowle , 2009a), i is assumed, based on he exis ing li e a u e, ha he opinion o a use in an online diabe es suppo g oup could ha e a bea ing on he beha io o decision-making p ocess o o he use s expo- sed o hei message. This would mean ha he way one pe son iews a speci ic p oblem could al e he way ano he pe son does, a ec ing hei emo ional and/ o physical well-being. 3. Me hodology 3.1. Li e a u e sea ch A sea ch o he elec onic da abases Google Schola , MEDLINE and PubMed, was unde aken in No embe and Decembe 2020, using he sea ch e ms ‘‘social su- ppo ’’ AND ‘‘diabe es’’ in he i le and he abs ac , AND (‘‘suppo g oup’’ OR ‘‘in o - ma ional suppo ’’ OR ‘‘emo ional suppo ’’ OR ‘‘implica ions’’) in ull ex . 3.2. Inclusion c i e ia Ou inclusion c i e ion was a icles epo ing an app oach o he e ec o in- o ma ional and/o emo ional suppo in pa ien s wi h diabe es. Fo p ac ical easons, only a icles w i en in English we e e ained. No es ic ion was used conce ning he publica ion da e. Re e ences om ele an s udies we e also examined o ind addi ional i les. 332 Noelia He e o IC – Re is a Cien í ica de In o mación y Comunicación 18 (2021) ∙ pp. 327-349 ∙ E-ISSN: 2173-1071 ∙ h ps://dx.doi.o g/10.12795/IC.2021.I18.16 3.3. Exclusion c i e ia The exclusion c i e ia o his s udy we e: s udies in ol ing a popula ion unde 18 yea s o age, s udies no add essing suppo , s udies wi h animals, s udies no add essing ch onical diseases and s udies on sexually ansmi ed diseases. S udies o p o ocols ha did no p esen pa ial esul s o quali a i e esul s o epo ed in e en ions we e also excluded. When applying he abo e sea ch p ocedu e, and a e elimina ion o dupli- ca e a icles, a o al o 273 a icles we e iden i ied. 31 a icles me he inclusion c i e ia and we e selec ed o u he analysis. O hese, 16 we e excluded. Fina- lly, 14 s udies we e included in he quali a i e syn hesis. 7 we e li e a u e e iews o heo e ical a icles, and 7 conce ned empi ical s udies. The sea ch p ocess is summa ized in he low cha shown in Fig. 1. Figu a 1. PRISMA Flow Cha . 333 La pa icipación de los pacien es con diabe es en g upos de apoyo online: … IC – Re is a Cien í ica de In o mación y Comunicación 18 (2021) ∙ pp. 327-349 ∙ E-ISSN: 2173-1071 ∙ h ps://dx.doi.o g/10.12795/IC.2021.I18.16 4. Resul s 57% o he s udies (8/14) we e published om 2017. All he s udies we e publi- shed in English. This e iew includes 7 empi ical s udies (including one andomi- zed con olled clinical ial), and 7 heo e ical s udies. All pa ien s in he in e en ion g oups o he empi ical s udies we e adul s o e 18 yea s. All o hem excep he ones in he s udy by Jacks & Thon (2017) e- po ed o ha e been diagnosed wi h diabe es. Mos o he s udies did no speci y he ype o diabe es o he pa icipan s. The numbe o pa icipan s anged om 22 o 2419 pa icipan s. A wide a- ie y o echniques and ools we e used including: c oss-sec ional su eys and ques ionnai es, online expe imen s, online applica ions, pamphle s, pee su- ppo e s, in eg a i e g oup, analysis o labo a o y da a, posi i e ein o cemen , and ocus g oups. Due o he di e ences in hei me hodology and sample, i is di icul o com- pa e he indings o hese s udies and u he in es iga ions a e needed. Table 1 Shows he summa y o hese s udies, hei me hodology and sample, as well as he main indings ela ed o his s udy. Table 1. Summa y o s udies included in he sys ema ic e iew Au ho Yea Me hodology Sample Main  indings  ela ed o  he s udy Tho ne & Pa e son 2001 Quali a i e app oach and compa a i e me hods 22 Canadian adul s wi h T1D Medical suppo  is good because o medical knowledge, bu  also bad because i  can lead  o a  eeling o  con ol loss o e he coindi ion Gomes e  al 2017 Randomized con olled clinical ial 164 pa ien s wi h T2D and o e  40 yea s old Pa ien s imp o e when  amily membe s a e inco po a ed in o he ca e o   he pa ien Joensen e  al 2016 C oss-sec ional su ey 2419 Danish adul s wi h T1D People wi h diabe es who es ablish good social  ela ionships ha e  ewe  psychoso- cial p oblems 334 Noelia He e o IC – Re is a Cien í ica de In o mación y Comunicación 18 (2021) ∙ pp. 327-349 ∙ E-ISSN: 2173-1071 ∙ h ps://dx.doi.o g/10.12795/IC.2021.I18.16 Au ho Yea Me hodology Sample Main  indings  ela ed o  he s udy Fan e  al 2006 Ques ionnai e and labo a o y da a 1142 Ame ican adul s wi h diabe es Social suppo helps  educing  he pa ien ’s psychosocial p oblems Social and emo io- nal suppo  ha e a posi i e impac  on he blood glucose le els o  pa ien s wi h diabe es Pimougue  e  al 2011 Li e a u e  e iew 41  andomized con olled  ials in ol ing adul s wi h  ype 1 o  2 diabe es Cla k 2008 Li e a u e  e iew 11 sys ema ic e iews and app aisals He e o e  al 2019 C oss-sec ional su ey 307 Spanish adul s wi h any ype o  diabe es Belonging  o  hese suppo  g oups has a posi i e in luence on  he pe cei ed social suppo  and mo i a ion o  people wi h diabe es Jucks & Thon 2017 Online expe i- men 78 Ge man adul s The sou ce o in o ma ion lacks ex- pe ience bu  i  gains c edibili y  h ough social  alida ion, wi h a lack o  c i icism Wei zman e  al 2011 Obse a ional s udy 11 social ne- wo ks  ela ed o diabe es Mos  o   he in o ma- ion sha ed lacks me- dical accoun abili y Laze  e  al 2018 Li e a u e  e iew 15  ele an scien i ic sou ces and pape s In o ma ion sha ed in OSG is no  clinically p o en Campan e  al 2017 Li e a u e  e iew 24  ele an scien i ic sou ces and pape s In o ma ion sha ed in OSG can be  alse 335 La pa icipación de los pacien es con diabe es en g upos de apoyo online: … IC – Re is a Cien í ica de In o mación y Comunicación 18 (2021) ∙ pp. 327-349 ∙ E-ISSN: 2173-1071 ∙ h ps://dx.doi.o g/10.12795/IC.2021.I18.16 Au ho Yea Me hodology Sample Main  indings  ela ed o  he s udy Waszak e  al 2018 Social Media analysis 80 o   he mos equen ly sha ed pages we e  e-  iewed ( op 10 in each keywo d ca ego y) Fake news in digi al media may pose a po en ial  h ea   o public heal h Eysenbach & Jadad 2001 Li e a u e  e iew 45  ele an scien i ic sou ces and pape s No  all use s o  digi al media a e able  o unde s and wha   hey ead He e o e  al 2021 C oss-sec ional su ey 307 Spanish adul s wi h any ype o  diabe es Pa icipa ion in online suppo  g oups is co ela ed wi h poo e heal h and an inc ea- sed appea ance o complica ions a ising as a consequence o  su e ing  om diabe es 4.1. Social suppo o pa ien s wi h diabe es The diagnosis o diabe es in ol es a se ies o changes in he pa ien ’s habi s: die- a y es ic ions, daily in ake o new medica ion such as me o min, moni o ing o blood glucose le els, insulin injec ions, and e en he possible appea ance o complica ions (neph opa hy, e inopa hy, ca dio ascula p oblems, obesi y o ampu a ions) (Membe s e al., 2013). All o hese changes help o explain he onse o dis ess (Polonsky e al., 2005), which is also ela ed o poo diabe es sel -ma- nagemen egimens (Pin audi e al., 2015), and has an impac on he inc eased isk o complica ions in blood glucose le els, and on he mo ali y o he a ec ed indi idual (G igsby e al., 2002; Ande son e al., 2001; Nicolucci e al., 2013). When his occu s, people wi h diabe es need social suppo o eel be e . Al hough social suppo has di e en dimensions o i , he mos common o ms a e in o ma ional suppo and emo ional suppo (Ro eei e al., 2015; Loade e al., 2002; Eichho n, 2008). In o ma ional suppo e e s o he exchange o e- le an knowledge and in o ma ion, whe eas emo ional suppo is based on he conce n o o he s. Emo ional suppo can also ake place when use s pos hei 342 Noelia He e o IC – Re is a Cien í ica de In o mación y Comunicación 18 (2021) ∙ pp. 327-349 ∙ E-ISSN: 2173-1071 ∙ h ps://dx.doi.o g/10.12795/IC.2021.I18.16 The exis ing li e a u e shows ha new echnologies can imp o e he li es o people wi h diabe es and hei ela ionship wi h hei specialis . Howe e , mos s udies ocus on how o imp o e he ease o digi al communica ion be ween pa- ien and doc o (Weine , 2012), which can only occu i bo h he pa ien and he doc o ha e he knowledge, abili y and willingness o use hese channels - which a e usually used o mo e bu eauc a ic a ai s, such as eques ing an appoin - men o a p esc ip ion (Lo & Pa ham, 2010). Wi h he ad en o online social ne- wo ks, he e has been a shi om he adi ional, e ical doc o -pa ien com- munica ion model o a much mo e ho izon al one in which pa ien s a e agen s in he managemen o hei disease and a e empowe ed by he in o ma ion and ela ionships hey ind online. The ela ionship be ween pa ien s, digi al media and how a specialis can help hem consume he in o ma ion hey ind he e in an op imal way s ill equi es u he esea ch. I we wan people, and speci ically pa ien s wi h diabe es, o ha e access o ac ual and sa e heal h- ela ed in o ma ion, we should p omo e he use o digi al media and he pa icipa ion o medical p o essionals in he g oups in which hei pa ien s a e ac i e, wi h he aim o p e en ing possible nega i e consequences o hem. Concei ably, online o ums and suppo g oups should be managed and/o mode a ed by medical p o essionals who ensu e he we- ll-being o he communi y by gua an eeing he in o ma ion sha ed he ein is o g ea e quali y. Fu he mo e, pa ien s’ communica ion needs should be aken in o accoun in o de o manage he communica ion s a egy and he esou ces needed o implemen i e ec i ely and app op ia ely o each pa ien . This equi es aking in o accoun he pa ien ’s a i ude (including hei mo i a ion o need o in o - ma ional o emo ional suppo ), hei in ellec ual le el and hei di icul y in un- de s anding he in o ma ion con eyed (backing i up wi h b ochu es and guides), he olume o in o ma ion con eyed and he iming (a he ime o diagnosis, 6 mon hs la e , e c.), as well as he communica ion channel needed a each s ep along he way (di ec pe sonal communica ion, phone se ices, email ollow-up, o line/online suppo g oup mee ings, e c.). This s a egic managemen o doc- o -pa ien communica ion should be based on bo h exis ing e idence and u u- e esea ch. Fu u e analyses should s udy whe he he educa ion o people wi h diabe es in ega ds o he digi al en i onmen and he consump ion o in o ma ion should be in he hands o hei specialis (endoc inologis , nu i ionis , die ician, neu o- logis ...), digi al media and communica ion expe s, o a hei own isk. 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