‘The phone eminde is impo an ,
bu will o he s ge o know abou my
illness?’Pa ien pe cep ions o an
mHeal h an i e o i al ea men
suppo in e en ion in he HIVIND
ial in Sou h India
Rashmi Rod igues,
1,2
S Poongulali,
3
Ka i ha Balaji,
3
Salla A kins,
1
Pe Asho n,
4
Ayesha De Cos a
1
To ci e: Rod igues R,
Poongulali S, Balaji K, e al.
‘The phone eminde is
impo an , bu will o he s ge
o know abou my illness?’
Pa ien pe cep ions o an
mHeal h an i e o i al
ea men suppo
in e en ion in he HIVIND
ial in Sou h India. BMJ
Open 2015;5:e007574.
doi:10.1136/bmjopen-2015-
007574
▸P epublica ion his o y o
his pape is a ailable online.
To iew hese iles please
isi he jou nal online
(h p://dx.doi.o g/10.1136/
bmjopen-2015-007574).
Recei ed 2 Janua y 2015
Re ised 1 July 2015
Accep ed 18 Augus 2015
Fo numbe ed a ilia ions see
end o a icle.
Co espondence o
D Rashmi Rod igues;
[email p o ec ed]
ABSTRACT
Objec i es: The ecen explosion o mHeal h
applica ions in he a ea o HIV ca e has led o he
de elopmen o mHeal h in e en ions o suppo
an i e o i al ea men adhe ence. Se e al o hese
in e en ions ha e been es ed o e ec i eness, bu
ew s udies ha e explo ed pa ien pe spec i es o such
in e en ions. Explo ing pa ien pe spec i es enhances
he unde s anding o how an in e en ion wo ks o
why i does no . We he e o e s udied pe cep ions
ega ding an mHeal h adhe ence in e en ion wi hin he
HIVIND ial in Sou h India.
Me hods: The s udy was conduc ed a h ee clinics in
Sou h India. The in e en ion comp ised an au oma ed
in e ac i e oice esponse (IVR) call and a pic o ial
sho messaging se ice (SMS), each deli e ed
weekly. Six een pu posi ely selec ed pa icipan s om
he in e en ion a m in he HIVIND ial we e
in e iewed. All pa icipan s had comple ed a leas 84
weeks since en ollmen in he ial. Pe cep ions on he
use ulness and pe cei ed bene i s and isks o
ecei ing he in e en ion we e sough . The in e iews
we e ansc ibed and analysed using he amewo k
app oach o quali a i e da a analysis.
Resul s: Despi e a ying pe cep ions o he
in e en ion, mos pa icipan s ound i use ul. The
in e en ion was pe cei ed as a sign o ‘ca e’ om he
clinic. The IVR call was p e e ed o he SMS eminde .
Two-way communica ion was p e e ed o au oma ed
calls. Pa icipan s also pe cei ed a isk o unin en ional
disclosu e o hei HIV s a us and s igma he eo ia
he in e en ion and ook ini ia i es o mi iga e his
isk. Ta ge ing eminde s a hose wi h poo adhe ence
and hose in need o social suppo was sugges ed.
Conclusions: mHeal h adhe ence in e en ions go
beyond hei in ended ole o p o ide a sense o ca e
and suppo o he ecipien . Al hough au oma ed
in e en ions a e impe sonal, hey could be a solu ion
o scale up. In e en ions ha engage bo h he
ecipien and he heal hca e p o ide ha e g ea e
po en ial o success. Pe sonalising mHeal h
in e en ions could mi iga e he isk o s igma and
p omo e hei up ake.
T ial egis a ion numbe : ISRCTN79261738.
INTRODUCTION
The scope o mobile phones in suppo o
heal hca e (mHeal h) has g own in ecen
yea s as e idenced by he expanding body o
li e a u e in his field.
12
One o he popula
uses o mHeal h has been o suppo he
con inuum o HIV ca e and p e en ion.
34
The echnology has been used ex ensi ely o
sp ead awa eness ega ding HIV in ec ion
and i s p e en ion,
1
including he p e en ion
o mo he - o-child ansmission (PMTCT).
5
S eng hs and limi a ions o his s udy
▪This is he i s quali a i e s udy in he Indian
con ex designed wi hin a andomised con olled
ial ha in es iga es pa icipan pe cep ions
ega ding an mHeal h adhe ence suppo in e -
en ion o an i e o i al he apy.
▪Quali a i e esea ch alongside clinical ials con-
ex ualises in e en ions and acili a es he de el-
opmen o in e en ions ha a e e ec i e.
▪The amewo k app oach used in he analysis is
poised be ween induc i e and deduc i e
app oaches and encou ages he analysis o he
esponden s’pe cep ions, in ligh o he
esea che s’expe iences.
▪As he HIVIND ial was ongoing a he ime o
he in e iews, he adhe ence s a us o he pa i-
cipan s was unknown o he in e iewe . Hence,
we we e unable o ela e he expe iences o he
pa icipan s o hei adhe ence wi hin he ial.
Rod igues R, e al.BMJ Open 2015;5:e007574. doi:10.1136/bmjopen-2015-007574 1
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Mo eo e , mHeal h has been ound accep able o com-
munica ing labo a o y esul s o HIV-in ec ed indi i-
duals, despi e sensi i i y su ounding he disease.
6
I is
also being s udied o HIV counselling and e en ion
78
in ea men . Suppo ing adhe ence o an i e o i al
ea men (ART) has been one o he popula uses o
he echnology, wi h a numbe o s udies
49–12
showing
mixed esul s.
91013
Adhe ence o ea men is a complex
14
ye essen ial
phenomenon o posi i e heal h ou comes, i espec i e
o he disease. I is key o he success o ART, as op imal
adhe ence de e s ea men ailu e and dea h in
HIV-in ec ed indi iduals. One o he ba ie s o adhe -
ence is o ge ulness. Se e al adhe ence suppo in e -
en ions ha e been de eloped o a ge o ge ulness
such as pillboxes, elec onic eminde s
15 16
and mobile
phone eminde s. These in e en ions a e posi ed
wi hin he Beha io Lea ning Theo y (BLT) amewo k
whe e hey a e conside ed as ex e nal cues ha suppo
medica ion adhe ence.
16
The ecen ly concluded HIVIND andomised con-
olled ial (RCT) in Sou h India was he fi s RCT ha
explo ed he e ec o an mHeal h in e en ion on ART
adhe ence in he Indian con ex .
17
The in e en ion
es ed in he HIVIND ial comp ised an au oma ed
in e ac i e oice esponse (IVR) call and a neu al
pic u e sho messaging se ice (SMS).
Quali a i e s udies can aid he unde s anding o he
e ec s o an in e en ion and he possible pa hways
h ough which hese e ec s (o lack o ) may be
media ed. Such esea ch alongside RCTs can con ex ual-
ise in e en ions and acili a e he de elopmen o e ec -
i e in e en ions.
18 19
Howe e , quali a i e s udies
alongside RCTs, especially in HIV in ec ion, a e ew.
We explo ed pa icipan pe cep ions o he in e en-
ion, including conce ns abou s igma and in usion o
p i acy, and compa ed he IVR call wi h he SMS
eminde in he Indian con ex .
METHODS
S udy con ex
This was a quali a i e s udy wi hin he HIVIND ial.
The HIVIND ial was a pa allel g oup open-label ial
ha s udied he e ec o mobile phone eminde s on
adhe ence o ART and ime o fi s -line ART ailu e
in ea men naï e people li ing wi h HIV (PLHIV) in
Sou h India. The RCT had h ee ec ui men si es
in Sou h India, ha is, (1) S . John’s Medical College
Hospi al, Bangalo e, a p i a e e ia y-le el non-p ofi
heal hca e acili y, p o iding ca e and ea men o
app oxima ely 3000 PLHIV/AIDS h ough a public–
p i a e pa ne ship in Ka na aka S a e; (2) KR Hospi al,
Myso e, a public e ia y-le el eaching heal hca e acil-
i y, p o iding ca e and ea men o app oxima ely
10 000 PLHIV in Ka na aka S a e and (3) YRG Ca e,
Chennai, a p i a e heal hca e acili y, p o iding ca e
and ea men o app oxima ely 18 000 PLHIV in Tamil
Nadu S a e.
HIV ca e and ea men in India a e p o ided a no
cos o minimal cos o PLHIV h ough a ne wo k o
public, p i a e and public–p i a e heal hca e acili ies.
All PLHIV egis e ed wi hin his HIV ca e ne wo k
ecei e counselling suppo , basic in es iga ions such as
CD4 coun , ea men and mon hly ollow-up ca e.
T ea men is ini ia ed a CD4 coun s <350 cells/mm
3
.
Fu he , PLHIV ecei e adhe ence counselling a ea -
men ini ia ion, and a mon hly pill efill isi s. The ele-
men s o his counselling (figu e 1) a e in line wi h he
Social Cogni i e Theo y o beha iou change.
Acco ding o he exis ing sys em, counsello s assess
pa ien s’knowledge ega ding hei heal h and educa e
hem based on hei knowledge gap. Counselling os e s
sel -e ficacy by engende ing he belie ha one can inde-
penden ly add ess adhe ence- ela ed issues and help
iden i y ex e nal sys ems (an eceden s) sui able o
suppo adhe ence.
20
The HIVIND T ial
19
: The ial es ed an mHeal h ART
adhe ence suppo in e en ion in 631 ou pa ien s aged
18–60 yea s. Hal he pa icipan s in he ial (315)
ecei ed he in e en ion, while he o he hal ecei ed
s anda d ca e. All pa icipan s, i espec i e o ecei ing
he in e en ion, we e ollowed up qua e ly o 2 yea s
o un il ea men ailu e, whiche e was ea lie . O he
pa icipan s in he ial, 502 (79%) we e li e a e, 273
(43%) we e emale, 398 (63%) we e employed and 286
(45%) we e om a u al backg ound. The ecen ly
epo ed HIVIND ial esul s showed no e ec o he
in e en ion on adhe ence.
21
The mHeal h in e en ion (figu e 2): The ial in e en ion
was designed on he basis o pa ien p e e ences and
pilo ed p io o he ial.
22 23
The in e en ion was au o-
ma ed and comp ised an IVR call
24
and a pic o ial SMS
eminde , each sen once a week o he in e en ion
a m pa icipan s o 2 yea s. The IVR call said, “Hello,
his is you good iend calling you! I you ha e aken all
you medica ions yes e day please p ess ‘1’i no please
p ess ‘2’.”I he pa ien missed he fi s call, h ee add-
i ional calls we e a emp ed in he nex 24 h. The SMS
eminde was a neu al pic o ial SMS ha depic ed a
‘lamp’. The SMS eminde was sen o he pa ien 3 days
a e he IVR call. Pa icipan s could choose a day and
ime o ecei e he IVR call and SMS eminde .
Pa icipan s we e ained o ecei e and espond o he
oice calls and access he SMS eminde .
Da a collec ion
We conduc ed in-dep h in e iews wi h 16 pa icipan s
in he in e en ion a m o he ial (5 pa ien s each a
he Myso e and Bangalo e si es and 6 a he Chennai
si e). All pa icipan s had comple ed a leas 84 weeks
since en ollmen in he ial. We achie ed da a sa u -
a ion a ound he 16 h in e iew and he e o e decided
o s op he in e iews, as no new in o ma ion was o h-
coming. Pu posi e sampling included pa ien s om
2Rod igues R, e al.BMJ Open 2015;5:e007574. doi:10.1136/bmjopen-2015-007574
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di e en si es, sexes, occupa ions, and u al and u ban
backg ounds.
The fi s au ho , who wo ked wi h he HIVIND ial
and he in e en ion, bu no wi h ou ine pa ien ca e,
conduc ed he in-dep h in e iews. All in e iews we e
conduc ed in a quie oom a each o he s udy si es and
audio- eco ded wi h he pa icipan s’consen . Each
in e iew was conduc ed in he local language, ha is,
Kannada o Tamil, and ook app oxima ely 20 min. We
used an in e iew guide ha was de eloped and pilo
es ed o explo e pa icipan pe cep ions o he in e en-
ion unde specific domains, ha is, help ulness o he
in e en ion, equency, ease o use, disclosu e o HIV
s a us and s igma he eo , p e e ence be ween he IVR
call and he SMS eminde .
Da a analysis
A na i e local language expe , also p oficien in
English, ansc ibed and ansla ed he in e iews in o
English. The fi s au ho subsequen ly spo checked he
ansc ip ions o ensu e consis ency wi h he eco dings.
The hema ic ‘F amewo k App oach’
25
was used in he
analysis. Fo his, he fi s au ho amilia ised he sel
wi h he ansc ip s and iden ified codes. The codes
om di e en ansc ip s we e compa ed o simila i y
and g ouped unde a single ca ego y. Codes and
Figu e 1 Adhe ence counselling
o suppo an i e o i al ea men
p o ided o pa ien s in line wi h
Social Cogni i e Theo y.
Figu e 2 The in e en ion.
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ca ego ies o med he p elimina y amewo k o he
analysis (box 1). Discussions be ween he au ho s
enabled he eo ganisa ion o codes o ma ch he
amewo k.
The codes we e hen applied o he ansc ip s, ha is,
he ansc ip s we e indexed and he da a cha ed unde
he ele an codes in he amewo k. Addi ional codes
we e gene a ed as he analysis p og essed. Subsequen ly,
he da a we e summa ised and mapped o iden i y con-
nec ions be ween summa ies and o de i e sub hemes.
The sub hemes we e collapsed unde b oade hemes
desc ibing he da a ( able 1).
E hics s a emen
P io o en olmen , pa ien s ga e hei w i en consen
o pa icipa e. The consen was also ead o all pa ici-
pan s in he local language o ensu e ha hey unde -
s ood he pu pose o he s udy and he s udy p ocedu es
i espec i e o hei le el o li e acy.
FINDINGS
Pa icipan cha ac e is ics: Six een pa icipan s om he
in e en ion a m o he HIVIND ial pa icipa ed in
his s udy. They we e aged 25–56 yea s (median age:
38 yea s). O hese, se en we e women and nine we e
men. O he women, h ee had pa - ime employmen
ou side hei home. All he men we e employed. Six pa -
icipan s had a u al backg ound.
Themes: Th ee hemes eme ged om he in e iews.
These we e (1) a ying use ulness o he in e en ion,
(2) p e e ence o calls o e messages and (3) pe cei ed
isk o unin en ional disclosu e o HIV s a us.
Va ying use ulness o he in e en ion
Some pa icipan s ound ha he mobile phone emin-
de s aided es ablishmen o a ou ine o aking hei
medica ion while o he s did no , ci ing cu en ly
adequa e adhe ence ega dless o he in e en ion.
Despi e being au oma ed, he in e en ion was pe cei ed
o p o ide social suppo and eflec he conce n o he
heal hca e p o ide .
Di e en pe cep ions o help ulness as a eminde
One pa icipan epo ed ha he in e en ion se ed as
a eminde h oughou he day and week despi e i s
bi-weekly equency. O he s epo ed ha he calls mini-
mised o ge ulness, especially when hey we e busy wi h
wo k o we e away om home.
We will be busy wi h ou wo k. When we ge busy, I eel
ha he eminde is e y impo an o me o ake he
able s … o my heal h.
The phone calls p o ided a cue o ake medica ions
and helped some pa icipan s de elop a ou ine o
aking medicines. One pa ien epo ed ha he emba -
assmen o p o iding a nega i e esponse o he call
ensu ed he adhe ence.
In he beginning, I used o o ge . So, ini ially o se he
ime, his became a good me hod. I used o miss he
able s ini ially. Nowadays, I ake he able s a 10:30 in
he mo ning and 10:30 a nigh . To ge in o his ou ine,
his phone call has helped…
Pa icipan s who conside ed hemsel es adequa ely
adhe en o medica ion did no find he in e en ion
use ul. They we e awa e o he impo ance o adhe ence
o medica ion in o de o ensu e i al supp ession. They
also epo ed conce n o hei own heal h and a desi e
o be heal hy.
No, (i is no ) only because o phone call ( ha ) I emem-
be ed o ake able s. I is also because I wan o be
heal hy ha I ( ake) able s egula ly.
Pa icipan s sugges ed sending eminde s only o
poo ly adhe en pa ien s ha he heal hca e p o ide
iden ified a mon hly isi s when pill coun s we e done.
They also sugges ed ha he equency o he eminde s
could be based on he indi iduals’need.
Fo hose i egula wi h medica ions you should make
he calls e e y day, hose who a e egula weekly once is
enough.
Reminde s we e conside ed necessa y o hose esid-
ing in u al a eas, hose equi ing social suppo , hose
p eoccupied wi h wo k o hose wi h an illness ha
a ec ed memo y.
Box 1 Thema ic amewo k used in he s udy
1.1 Help ulness in e ac i e oice esponse (IVR)
1.2 Help ulness sho messaging se ice (SMS)
2. Pe cep ion o impo ance o he in e en ion
3. F equency o he in e en ion
4. Func ioning o he in e en ion
5. P i acy
6. In usion
7. S igma
7.1 S igma om in e en ion
7.2 Ways o a oid s igma
8. Discon inua ion o he in e en ion
9. Voice: Male/ emale p e e ences
10. Technical knowledge
11. P e e ence be ween IVR and SMS
12.1 Responding o he in e en ion
12.2 Reasons o non- esponse
12.3 Reasons o e o in esponse
13. Ba ie s o adhe ence
14. Communica ion
14.1 Two-way communica ion
14.2 Type o message
14.3 Sugges ions o deploymen
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Table 1 A b ie desc ip ion o he amewo k used in da a analysis
Thema ic amewo k componen s and
quo es Codes Summa y Ca ego ies Sub hemes Theme*
Help ulness o IVR Fo ge ulness due o wo k
— eminde s help
Phone calls minimised o ge ulness
and enabled de elopmen o a
medica ion ou ine, imp o ing
adhe ence. Conce n om heal hca e
p o ide pe cei ed
Imp o es
adhe ence
Di e en pe cep ions
ega ding he
help ulness as a
eminde
1
We will be busy wi h ou wo k, when we
ge busy, I eel ha he eminde is e y
impo an o me ake he able s
When I ge a call a 8:00, I eel happy ha
a call has come om hospi al. I eel
people om hospi al ha e called
Pe cei ed conce n o he
heal hca e p o ide along
wi h. Feels happy wi h he
calls
Heal hca e
p o ide s conce n
Di e en pe cep ions
ega ding he
help ulness as a
eminde
1
Help ulness o SMS SMS no liked, he
inconspicuous ale one
makes he pa ien miss he
SMS
A gene al dislike o SMS. The SMS is
missed on a i al because o i s
inconspicuous ing one. Unin ended
disclosu e o HIV s a us pe cei ed
SMS disliked Di e en pe cep ions
ega ding he
help ulness as a
eminde
1
I ne e liked SMS, I didn’ like i a all. I
would be busy du ing he day. I would
ne e hea i s sound a all…I ne e ge o
know when SMS comes…
I dele e i on he spo bu by chance i
someone sees i , “LM a ogyam”†, hey will
ques ion me
Pe cei e he disclosu e o
HIV s a us wi h he SMS
Fea o disclosu e
o HIV s a us
P e en ing unin ended
disclosu e o HIV
s a us
3
Pe cep ion o impo ance o he
in e en ion
In e en ion does no
ma e , pa ien adhe en
The necessi y o calls is no seen as
pa ien s claim o be adhe en wi hou
he calls. Ex e nal cues o suppo
adhe ence used
Pe cep ion o
being adhe en
Di e en pe cep ions
ega ding he
help ulness as a
eminde
1
Whe he I ge a phone call o SMS, i
doesn’ ma e , I ha e aken able s
egula ly. Tha is mo e impo an igh ?
By 9.00 sha p, a e ha ing my b eak as
and while aking he cash o my
expenses…I will also ake he medicines
Pa ien akes medicines
daily a e b eak as
Ex e nal cues o
adhe ence used
Di e en pe cep ions
ega ding he
help ulness as a
eminde
1
P e e ence be ween IVR and SMS Fea o disclosu e o HIV
s a us om he phone call
A p e e ence o phone calls in
compa ison o SMSs. Phone calls
hough o ha e he po en ial o
disclosu e o HIV s a us
Fea o disclosu e
o HIV s a us
P e en ing unin ended
disclosu e o HIV
s a us
3
Yes, she has ead he message and
asked who is he ‘a ogyam’, no one
knows, bu i you a e calling, whoe e is
a ending he call will come o know abou
he p oblem
The call is su icien , SMS is no
necessa y…in he phone call hey speak,
a leas o espec ( hem) we ake he
call…I we ake he call we ha e o
espond…We do no ha e o espond o
he SMS…
Calls a e conside ed
su icien as hey a e
in e ac i e, SMS
conside ed passi e
In e ac ion in he
call p e e ed o
passi i y o he
SMS
Engagemen : IVR s
SMS
2
*Themes: 1. Pe cep ions o a ying use ulness o he in e en ion, 2. p e e ence o calls o e messages and 3. pe cei ed isk o unin en ional disclosu e o HIV s a us.
†The name unde which he SMS is deli e ed, ‘a ogyam’means heal h.
IVR, in e ac i e oice esponse; SMS, sho messaging se ice; LM, p e ix o he alpha nume ic sende iden i ie ‘a ogyam’L- code o he se ice p o ide , M- code o he se ice a ea.
This p e ix ollows he egula ions o SMS sende iden i ica ion issued by he Telecom Regula o y Au ho i y o India on 10
h
Decembe 2008, h p://www. ai.go .in/W i eReadDa a/Di ec ion/
Documen /di ec ion10dec08.pd .
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Pe cei ed suppo : social suppo and conce n o he
heal hca e p o ide
The in e en ion made he pa icipan s eel he conce n
and suppo om he heal hca e p o ide as a esul o
he phone calls.
I eel happy ha hospi al people ca e o my heal h,
when I ecei e he call.
The calls we e pe cei ed as being om a iend and
no om a machine, despi e all pa icipan s being awa e
ha he calls we e au oma ed.
When I ge hese compu e ized phone calls asking me
how my heal h is?? I eel con en ed …E en i I am eady
o pay a hund ed housand upees, I don’ hink I will
ge a p i ilege like his…
P e e ence o calls o e messages
Despi e au oma ing bo h he IVR call and he SMS
eminde , he IVR call was p e e ed and conside ed
mo e use ul when compa ed wi h he SMS eminde .
Fu he , pa icipan s a ely iewed he SMS eminde .
Un amilia i y wi h he concep o SMS combined wi h i s
passi i y and he inconspicuous ale one led pa ien s o
igno e he SMS eminde .
Engagemen : IVR e sus SMS
The phone call a ac ed a en ion and was unlikely o
be missed because o he ‘noise’i made while he SMS
was easily missed as i made a so e ‘noise’.
Pa icipan s app ecia ed he in e ac i i y and echno-
logical simplici y o he au oma ed call in compa ison
o he SMS.
The call is su ficien , ( he) SMS is no necessa y. I you
compa e …in he phone call hey speak. A leas o
espec wha hey speak we pick he call, a leas once …
We do no ha e o espond o he SMSs, he SMS is no
necessa y.
Pa icipan s epo ed a desi e o speak o he pe son
calling hem. They also wished o discuss hei heal h
p oblems and sha e hei eelings, hei disease p og es-
sion, ad ice ega ding medica ion and i s side e ec s,
nu i ion, in e ac i e beha iou and any ecen ad ances
in HIV ea men and cu e wi h he calle i gi en an
oppo uni y
The p oblem wi h his phone call is ha you canno
speak any hing in o i . Only he pe son on he o he
side (speaks) …We canno cla i y any hing …I ha
op ion we e he e, i would be use ul …I would make
me eel elie ed…
I am a pa ien , I could ha e asked de ailed in o ma-
ion abou ha abou aking able s, abou ea ing ood,
how o mingle wi h e e yone, how o wo k …i may
help.
Only one pa icipan epo ed ha wo-way communi-
ca ion would be unaccep able, as he pe son calling
would know his disease s a us.
(A) compu e ised message is ( he) bes way. Why should
my in o ma ion be known o he pe son who is calling?
Un amilia i y wi h using SMS in he se ing
Many pa icipan s epo ed di ficul ies in accessing he
SMS despi e being augh . One pa icipan epo ed ha
nei he he no his s anda d 10 h educa ed spouse knew
how o iew o send an SMS.
Phone call is simple. The SMS is oo complica ed…I
don’ unde s and SMS well…
Pe cei ed isk o unin en ional disclosu e om he
in e en ion
Pa icipan s ound i impo an o p e en he disclosu e
o hei HIV s a us, and made e o s o conceal he
sou ce o he in e en ion (ie, he HIV clinic) om
o he s.
P e en ing unin ended disclosu e o HIV s a us
Fea ul o o he s a ending he IVR call, pa icipan s
a ely le he phone una ended on he day o he call.
Pe sonalising he ime and day o he call enabled pa i-
cipan s o choose imings ha a o ded some p i acy
and secu i y while answe ing he call.
No one has picked up he call. Wednesday (I ecei e) he
phone call and (on) Sunday he SMS. On hese wo days
I will ne e lea e he phone anywhe e. E en i he e is a
p oblem, he phone will be kep wi h me.
When iends and amily enqui ed abou he calls,
some pa icipan s made a emp s o conceal he sou ce
o he calls (ie, he HIV clinic).
(When) people a ound me wan ed o know whe e he
call comes om, I ell hem ha his call is om he
Ai cel/mobile company and y o escape ( he) si ua ion.
Pa icipan s conside ed ha equen calls migh
inc ease he isk o unin en ional disclosu e o hei
HIV s a us as he likelihood o someone else ecei ing
he call while he phone is una ended cumula es wi h
he numbe o calls ecei ed.
I I ge he call epea edly, I am sca ed o he s will ecei e
he call and will ge o know abou (my) illness.
Pa icipan s epo ed ha hey kep he phone o
‘ hei ea s only’when in he p esence o o he s. One
pa icipan epo ed going ou o he house o a end
he call, while ano he pe sonalised he call o ecei e i
a e he child en had le he house.
Pa icipan s dele ed he SMS eminde s om hei
phone inbox in an a emp o p e en o he s om
iewing hem. One pa icipan ea ed ha i any PLHIV
6Rod igues R, e al.BMJ Open 2015;5:e007574. doi:10.1136/bmjopen-2015-007574
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ecei ing he same SMS eminde iewed his SMSs, his
HIV s a us would be unin en ionally disclosed, as he
o he pa ien would ecognise he SMS.
Al hough in e en ion was no conside ed in usi e,
pa icipan s ei he silenced o swi ched o he phone o
p e en he calls om a ac ing a en ion in public
places.
DISCUSSION
The esul s o ou s udy indica e ha pa icipan s had
a ied iews o he in e en ion’s help ulness. Some pa -
icipan s pe cei ed he conce n o he heal hca e p o-
ide along wi h social and emo ional suppo . The IVR
call was p e e ed o e he SMS eminde , and pa ici-
pan s el hey needed a mo e engaging call.
Pa icipan s ea ed HIV- ela ed s igma, and he e o e
ook s eps o educe he isk o unin ended disclosu e o
hei HIV s a us, ia he in e en ion.
mHeal h in e en ions a e designed o imp o e adhe -
ence by a ge ing o ge ulness, a common ba ie o
ea men adhe ence.
26
Hence, ou in e en ion may
be placed wi hin he con ex o he beha iou lea ning
heo y (BLT) amewo k (figu e 3).
16
The pa icipan s
in ou s udy desi ed o s ay heal hy. This need, an
in e nal an eceden in he BLT amewo k, p obably
encou aged hem o ake medicines. Fu he , he emin-
de s p o ided ia mobile phones se ed as an ex e nal
an eceden . Howe e , s udies ha e shown ha ex e nal
eminde s used in isola ion may no be able o imp o e
adhe ence.
27 28
E ec i e adhe ence suppo in e en-
ions need amily o pee suppo , counselling and daily
ea men suppo eflec ing hei complexi y.
28
Pa icipan s also epo ed eeling he ‘conce n’o
hei heal hca e p o ide s owa ds hei heal h, mo e so
wi h he oice calls han wi h he SMSs. Repo s o
mHeal h in e en ions p o iding suppo and making
he ecipien eel alued we e also obse ed in
Kenya.
5929
These in e en ions, howe e , in ol ed a
componen o pe sonal in e ac ion ia he phone unlike
ou au oma ed in e en ion. A s udy om B i ish
Columbia ha used ex messages in a ube culosis clinic
epo ed ha pa icipan s el suppo ed and ca ed o
by hei heal hca e p o ide .
30
Ano he s udy om
Pe u- ela ed mobile phone eminde s o an ‘angel’and
a‘ iend’gi ing he in e en ion an an h opomo phic
cha ac e .
31
Simila epo s a e a ailable om an
mHeal h smoking cessa ion ial in he UK.
32
Despi e eeling he conce n o he heal hca e p o-
ide , he pa icipan s exp essed he need o wo-way
communica ion. Engaging beneficia ies in communica-
ion imp o es he e ficacy o mHeal h in e en ions.
33
Two-way communica ion in ol ing ex messages was
ound o open communica ion channels and add ess
unme needs o PLHIV in he Came oon Mobile Phone
SMS (CAMPS) ial. Exp essing g a i ude, eques ing
counselling, financial suppo and ad ice ega ding
medica ion side e ec s— easons o using wo-way com-
munica ion in he CAMPS ial—we e also mi o ed in
ou s udy.
34
Al hough he con en o communica ion
was iden ified du ing he design phase in h ee mHeal h
ials om sub-Saha an A ica (SSA), none explo ed he
need o in e ac ion.
91013
Fu he , hough he WelTel
and CAMPS ials p o ided an oppo uni y o pe sonal
in e ac ion wi h he heal hca e p o ide , only he WelTel
ial was success ul.
910
The o he Kenyan ial was suc-
cess ul e en hough he in e en ion was comple ely
au oma ed.
10
The lack o in e ac ion is he e o e
unlikely o be a majo eason o he nega i e ial
esul s in ou s udy.
Conside ing he p e alen li e acy le els in ou se ing,
we chose o inco po a e a neu al pic u e SMS in he
in e en ion. Elsewhe e, ex messages we e p e e ed o
o he o ms o communica ion as hey we e conside ed
o p o ide g ea e confiden iali y.
11 35
S udies om SSA
epo high accep abili y o ex messaging o adhe -
ence suppo , gene a ing awa eness ega ding HIV in ec-
ion and communica ing labo a o y esul s in
Figu e 3 The mHeal h
an i e o i al ea men (ART)
suppo in e en ion in he con ex
o he Beha io Lea ning Theo y.
Rod igues R, e al.BMJ Open 2015;5:e007574. doi:10.1136/bmjopen-2015-007574 7
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HIV-in ec ed indi iduals.
6913
None o hese s udies
compa ed he accep abili y o ex messages o oice
calls. Howe e , ano he s udy om Sou h A ica
epo ed nea ly equal p e e ence o oice calls and ex
messages as a mode o communica ion by a heal hca e
p o ide .
36
A s udy in ol ing PMTCT indica ed ha ex
messages we e p e e ed o b ie communica ions and
oice calls o longe , mo e in e ac i e con e sa ions.
5
The lowe English language li e acy in ou con ex in
compa ison o some o hese s udy con ex s could ha e
esul ed in he p e e ence o oice calls o e ex mes-
sages. I would be o alue o iden i y he p e e ed
mode o communica ion and inco po a e i in o he
in e en ion design. Ve bal communica ion has he
po en ial o o e come he li e acy ba ie o ex messa-
ging, and could be used in low-middle income con ex s
such as ou s. The combined e ec o educa ion and ex
messaging in imp o ing adhe ence, and he li e acy
ba ie o he use o ex messages, eflec he need o
al e na i es such as oice calls and pic u e messages o
adhe ence suppo .
37
The in e en ion in ou s udy was designed subse-
quen o a su ey ha used a semis uc u ed in e iew
schedule. One in h ee pa icipan s in he su ey indi-
ca ed a s ong p e e ence o oice calls. Howe e , he
su ey did no explo e he p e e ed con en o commu-
nica ion o he ex en o i s in e ac i eness. Quali a i e
explo a ion o pa icipan pe cep ions while pilo ing he
HIVIND ial in e en ion could ha e helped iden i y
and add ess issues be o e he ial commenced. Also,
hose who pa icipa ed in ou s udy we e exposed o he
in e en ion o app oxima ely 2 yea s. Fi s -hand expe i-
ence wi h he in e en ion p obably enabled pa icipan s
o iden i y mo e ‘nega i es’ ega ding he SMS eminde
han we e pe cei ed by po en ial ial pa icipan s.
A ea o s igma om an unin ended disclosu e o hei
HIV s a us om he in e en ion was el despi e he
in e en ion’s neu al con en , pe sonalised iming and
non- e bal in e ac i e communica ion. Non- e bal com-
munica ions wi hin he IVR call p obably engende ed
cu iosi y in hose wi nessing he call and a ea o HIV
s a us disclosu e in he pa icipan s. S igma has been
documen ed as a significan p oblem o pe sons li ing
wi h HIV in he Indian se ing.
38
This ea -induced pa i-
cipan s o keep hei phones wi h hem on he days ha
hey ecei ed he call. They also p e e ed he eminde s
weekly as hey could keep he phone wi h hemsel es o
he day. As in o he s udies, pa icipan s in ou s udy also
p e e ed no ecei ing he calls in public.
36
Li e a u e on s igma associa ed wi h mHeal h in e en-
ions in HIV in ec ion is la gely in he con ex o ex
messages. Reques s o code con en ha p e en ed dis-
closu e o HIV s a us and minimised s igma we e
obse ed in he de elopmen phase o he CAMPS in e -
en ion.
39
S igma as a ba ie o mHeal h adhe ence
suppo was iden ified in he design phase o he WelTel
ial.
40
In ou s udy, he ea o s igma was less p o-
nounced wi h he SMS eminde s han wi h he IVR
calls, p obably because he SMS eminde s we e less
popula and wen unno iced mo e o en. As in o he
s udies, pa icipan s in ou s udy also eso ed o dele -
ing o ex messages due o ea o unin ended disclos-
u e o HIV s a us.
6
The pe cei ed isk o unin ended
disclosu e o HIV s a us due o o he s iewing pa ici-
pan s’ ex messages was also epo ed om China, SSA
and Pe u.
13 29 31 36 41
Resea che s should weigh he ben-
efi s agains he isk o engende ing he ea o s igma
om mHeal h in e en ions in sensi i e heal h condi-
ions like HIV in ec ion. Educa ing pa ien s and
adequa e counselling suppo could o e come he
s igma associa ed wi h he in e en ion.
34
Conside a ions o he u u e design o mHeal h in e -
en ions: In e en ions pe sonalised o he beneficia ies’
need should be de eloped.
32
Mul icomponen in e en-
ions could be designed such ha wo-way communica-
ion wi h physicians/counsello s, along wi h in o ma ion
on nu i ion, medica ion side e ec s and ad ances in
HIV ca e, is inco po a ed. Al hough in e ac i e commu-
nica ion may engage pa ien s o longe du a ions, i
needs o be balanced agains he esou ces needed o
in e en ion scale up.
Sensi i i y o he disease and sociocul u al con ex s,
gi en he possibili y o s igma i sensi i e in o ma ion
we e in e cep ed, is needed. Ta ge ing hose wi h poo
adhe ence, as sugges ed by pa icipan s in ou s udy,
could imp o e he e ficacy o mHeal h in e en ions.
40
Fu he mo e, quali a i e assessmen s p io o and du ing
a ial can help de elop and con ex ualise such in e en-
ions
32
These conside a ions could be ex apola ed on o
ch onic non-communicable disease and ube culosis.
42
Me hodological issues: The s udy sample was pu posi e and
ep esen a i e o he pa icipan s in he HIVIND ial,
enabling he ans e abili y o esul s. Fu he , a hick
desc ip ion o he s udy con ex is p o ided in he
me hods sec ion o his manusc ip , enabling he eade
o judge he applicabili y o he esul s in hei se ing.
To ensu e c edibili y o he findings, he esea che s
discussed wi h each o he he in e iew guide, which was
pilo es ed and modified sui ably o ensu e ha i accu -
a ely assessed pa icipan pe cep ions. Simila ly, a con-
sensus was a i ed a ega ding he amewo k, codes,
hemes and sub hemes a e discussions wi h he coau-
ho s. Dependabili y was suppo ed by desc ibing all p o-
cedu es unde aken in de ail in he me hods sec ion o
his manusc ip .
Reflexi i y: The fi s au ho ’s unde s anding o he pos-
i ion as a physician, a public heal h pe son and a
esea che li ing and wo king in he se ing enabled he
o e ec i ely con ex ualise he esponses o he pa ici-
pan s. The mul idisciplina y esea ch eam in ol ed in
he s udy con ibu ed o a holis ic in e p e a ion o pa -
icipan pe cep ions ha we explo ed.
The amewo k app oach is ideal o analyse heal h
sys em ela ed da a as i d aws on many di e en adi-
ions o answe a specific esea ch ques ion. Poised
be ween he induc i e and deduc i e app oaches, i
8Rod igues R, e al.BMJ Open 2015;5:e007574. doi:10.1136/bmjopen-2015-007574
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encou ages he analysis o he esponden ’s in e p e -
a ion o issues, in he ligh o he esea che s’expe i-
ences, and suppo s he con ex ualisa ion o esea ch
findings.
25
As he HIVIND ial was ongoing a he ime o he
in e iews, he adhe ence s a us o he pa icipan s was
unknown o he in e iewe . Hence, we we e unable o
ela e he expe iences o he pa icipan s o hei adhe -
ence wi hin he ial.
CONCLUSION
mHeal h adhe ence in e en ions go beyond hei
in ended ole o p o ide a sense o ca e and suppo o
he ecipien . Al hough au oma ed in e en ions a e
impe sonal, hey could be he solu ion o scale up. The
u ili y o conse ing spa se heal hca e esou ces by au o-
ma ing in e en ions should be weighed agains he
e ec i eness o a mo e engaging in e en ion in ol ing
wo-way communica ion. Mul icomponen in e en ions
pe sonalised on he basis o iming, con en , du a ion
and adhe ence le els could be mo e engaging and
accep able o beneficia ies, and mi iga e he isk o
s igma. Mos o all, mHeal h in e en ions should be
de eloped h ough ex ensi e beha iou al esea ch and
es ed o e ec i eness p io o inco po a ing hem
wi hin heal hca e sys ems.
Au ho a ilia ions
1
Ka olinska Ins i u e , S ockholm, Sweden
2
Depa men o Communi y Heal h, S . John’s Medical College, Bangalo e,
Ka na aka, India
3
YRG Ca e Cen e , Chennai, Tamil Nadu, India
4
Depa men o In e na ional Heal h, Uni e si y o Tampe e School o
Medicine, Tampe e, Finland
Acknowledgemen s The au ho s would like o hank he medical o ice s and
s a a he h ee s udy si es and hei ART cen es, ha is, S . John’s Medical
College, Bangalo e; KR Hospi al, Myso e; YRG Ca e, Chennai o suppo . The
au ho s acknowledge he suppo om he p incipal in es iga o s o he
HIVIND ial, D Kuma asamy N, Chennai and D Ani a She , Bangalo e. They
also hank D Swa oop N, Senio esea ch o ice , HIVIND s udy a KR
Hospi al, Myso e o o ganising he da a collec ion a he Myso e si e. They
also acknowledge he con ibu ion o D BB Riwa i, D Sunil Kuma Dodde i
and D Su esh Shas h i, along wi h he Na ional AIDS Con ol O ganisa ion,
o enabling he es ablishmen o he s udy si e a Myso e and suppo ing he
s udy.
Con ibu o s RR pa icipa ed in concep , design, da a collec ion, analysis and
d a ing he manusc ip . SP and KB we e esponsible o da a collec ion,
analysis and c i ical e iew. SA was in ol ed in analysis and d a ing he
manusc ip . PA was esponsible o analysis and c i ical e iew. ADC was
in ol ed in concep , design, analysis and c i ical e iew.
Funding The unding suppo om he Eu opean Union 7 h F amewo k
Commission G an o he HIVIND ial 2009–2014, G an numbe 222946.
Compe ing in e es s None decla ed.
E hics app o al E hical clea ance o he s udy was ob ained om he
espec i e e hics commi ees a he h ee si es unde he HIVIND s udy: ((1)
S . John’s Medical College Hospi al, Bangalo e: IERB 1/369/08-92/2008; (2)
Myso e Medical College and Resea ch Ins i u e: NO/PS/173/2010; (3) YRG
Ca e Medical Cen e , Chennai: IRB Ap il18/2009).
P o enance and pee e iew No commissioned; ex e nally pee e iewed.
Da a sha ing s a emen No addi ional da a a e a ailable.
Open Access This is an Open Access a icle dis ibu ed in acco dance wi h
he e ms o he C ea i e Commons A ibu ion (CC BY 4.0) license, which
pe mi s o he s o dis ibu e, emix, adap and build upon his wo k, o
comme cial use, p o ided he o iginal wo k is p ope ly ci ed. See: h p://
c ea i ecommons.o g/licenses/by/4.0/
REFERENCES
1. Wo ld Heal h O ganiza ion. mHeal h: New ho izons o heal h
h ough mobile echnologies: second global su ey on eheal h.
Global Obse a o y o eHeal h se ies—Volume 3. 2011. WHO
P ess, Wo ld Heal h O ganiza ion, 20 A enue Appia, 1211 Gene a
27, Swi ze land ISBN 978 92 4 156425 0. h p://apps.who.in /i is/
bi s eam/10665/44607/1/9789241564250_eng.pd
2. F ee C, Phillips G, Galli L, e al. The e ec i eness o mobile-heal h
echnology-based heal h beha iou change o disease managemen
in e en ions o heal h ca e consume s: a sys ema ic e iew. PLoS
Med 2013;10:e1001362.
3. Muessig KE, Pike EC, Leg and S, e al. Mobile phone applica ions
o he ca e and p e en ion o HIV and o he sexually ansmi ed
diseases: a e iew. J Med In e ne Res 2013;15:e1.
4. Ho a h T, Azman H, Kennedy GE, e al. Mobile phone ex
messaging o p omo ing adhe ence o an i e o i al he apy in
pa ien s wi h HIV in ec ion. Coch ane Da abase Sys Re 2012;3:
CD009756.
5. Jennings L, Ong’ech J, Simiyu R, e al. Explo ing he use o mobile
phone echnology o he enhancemen o he p e en ion o
mo he - o-child ansmission o HIV p og am in Nyanza, Kenya:
a quali a i e s udy. BMC Public Heal h 2013;13:1131.
6. Siedne MJ, Habe e JE, Bwana MB, e al. High accep abili y o cell
phone ex messages o imp o e communica ion o labo a o y esul s
wi h HIV-in ec ed pa ien s in u al Uganda: a c oss-sec ional su ey
s udy. BMC Med In o m Decis Mak 2012;12:56.
7. Kalichman SC, Kalichman MO, Che y C, e al. B ie beha io al
sel - egula ion counseling o HIV ea men adhe ence deli e ed by
cell phone: an ini ial es o concep ial. AIDS Pa ien Ca e STDS
2011;25:303–10.
8. Smillie K, Van Bo ek N, Abaki J, e al. A quali a i e s udy
in es iga ing he use o a mobile phone sho message se ice
designed o imp o e hi adhe ence and e en ion in ca e in Canada
(WelTel BC1). J Assoc Nu ses AIDS Ca e 2014;25:614–25.
9. Les e RT, Ri o P, Mills EJ, e al. E ec s o a mobile phone sho
message se ice on an i e o i al ea men adhe ence in Kenya
(WelTel Kenya1): a andomised ial. Lance 2010;376:1838–45.
10. Pop-Eleches C, Thi umu hy H, Habya imana JP, e al. Mobile
phone echnologies imp o e adhe ence o an i e o i al ea men in
a esou ce-limi ed se ing: a andomized con olled ial o ex
message eminde s. AIDS 2011;25:825–34.
11. Mille CW, Himelhoch S. Accep abili y o mobile phone echnology
o medica ion adhe ence in e en ions among HIV-posi i e pa ien s
a an u ban clinic. AIDS Res T ea 2013;2013:670525.
12. Puccio JA, Belze M, Olson J, e al. The use o cell phone eminde
calls o assis ing HIV-in ec ed adolescen s and young adul s o
adhe e o highly ac i e an i e o i al he apy: a pilo s udy. AIDS
Pa ien Ca e STDS 2006;20:438–44.
13. Mbuagbaw L, Thabane L, Ongolo-Zogo P, e al. The Came oon
Mobile Phone SMS (CAMPS) ial: a andomized ial o ex
messaging e sus usual ca e o adhe ence o an i e o i al he apy.
PLoS ONE 2012;7:e46909.
14. Saba é E. WHO Adhe ence o Long Te m The apies P ojec , Global
Adhe ence In e disciplina y Ne wo k, and Wo ld Heal h
O ganiza ion. Dep . o Managemen o Noncommunicable Diseases,
Adhe ence o long- e m he apies: e idence o ac ion. Gene a:
Wo ld Heal h O ganiza ion, 2003:196.
15. Ve loe M, Linn AJ, an Wee JC, e al. The e ec i eness o
in e en ions using elec onic eminde s o imp o e adhe ence o
ch onic medica ion: a sys ema ic e iew o he li e a u e. J Am Med
In o m Assoc 2012;19:696–704.
16. Mun o S, Lewin S, Swa T, e al. A e iew o heal h beha iou
heo ies: how use ul a e hese o de eloping in e en ions o
p omo e long- e m medica ion adhe ence o TB and HIV/AIDS?
BMC Public Heal h 2007;7:104.
17. De Cos a A, She A, Kuma asamy N, e al. Design o a andomized
ial o e alua e he in luence o mobile phone eminde s on
adhe ence o i s line an i e o i al ea men in Sou h India— he
HIVIND s udy p o ocol. BMC Med Res Me hodol 2010;10:25.
Rod igues R, e al.BMJ Open 2015;5:e007574. doi:10.1136/bmjopen-2015-007574 9
Open Access
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