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
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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-
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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
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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).
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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
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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
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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
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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
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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
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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.
This educa ion could lead o he de elopmen o c i ical hinking in pa ien s,
helping hem o consume in o ma ion online in a way ha is sa e o hei heal h
and emo ional well-being.

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