Recei ed: 26 May 2022
|
Re ised: 24 Oc obe 2022
|
Accep ed: 8 No embe 2022
DOI: 10.1111/hex.13671
ORIGINAL ARTICLE
Becoming a seconda y ac o o one's own li e: A quali a i e
s udy o he expe iences o in o mal ca egi e s in he ca e
o people wi h ch onic pain
Helena De Sola PhD, Assis an Lec u e
1,2,3
|Inmaculada Failde PhD, P o esso
1,2,3
|
I zia Es alella PhD, Senio Lec u e
4
|Amaia Maquiba PhD, Lec u e
4
1
The Obse a o y o Pain, Uni e si y o Cádiz,
Cádiz, Spain
2
Biomedical Resea ch and Inno a ion Ins i u e
o Cádiz (INiBICA) Resea ch Uni , Pue a del
Ma Uni e si y Hospi al, Uni e si y o Cádiz,
Cádiz, Spain
3
P e en i e Medicine and Public Heal h A ea,
Uni e si y o Cádiz, Cádiz, Spain
4
Depa men o Nu sing I, Facul y o Medicine
and Nu sing, Uni e si y o he Basque
Coun y UPV/EHU, Bizkaia, Leioa, Spain
Co espondence
Helena De Sola, P e en i e Medicine and
Public Heal h A ea, Uni e si y o Cádiz, A d.
Ana de Viya 52, Cádiz 11009, Spain.
Email: [email p o ec ed]
Funding in o ma ion
Fundación Española del Dolo
Abs ac
In oduc ion: The physical limi a ions expe ienced by people wi h ch onic pain (CP)
p oduce a g ea e need o ca e and assis ance, mos o which is p o ided by an
in o mal ca egi e (IC). Despi e he key ole ICs play in he e e yday li es o
indi iduals li ing wi h CP, knowledge abou hei expe iences and needs is limi ed.
We aimed o add ess his limi a ion by explo ing he expe iences o IC o people
wi h CP.
Me hods: This is a quali a i e desc ip i e s udy using semis uc u ed in e iews.
Pa icipan s we e 12 ICs pu posi ely chosen om he Uni o Pain a he Uni e si y
Hospi al in Cádiz. Indi idual in e iews we e eco ded, ansc ibed e ba im and
analysed ollowing hema ic analysis.
Resul s: We de eloped one o e a ching heme ‘Becoming a seconda y ac o o one's
own li e’and h ee hemes: 1. Key elemen s ha shape a ca egi e 's expe iences; 2.
I 's he hand ha li e deal me; 3. The bu den o being a ca egi e and coping
s a egies.
Conclusions: This s udy's indings highligh how he CP impac s IC li es. Being an IC
o a ela i e wi h CP became he mos impo an ole in he IC's li e, o he poin o
cas ing a shadow o e hei own needs. Besides, pa icipan s el no ha ing o he
op ions bu o keep going wi h ha ole. Ye , he con ex was essen ial in shaping
he expe iences as ca egi e s and he bu den de i ed om ca egi ing. In his line,
di e ences ela ed o gende oles we e ound in he na a i es o pa icipan
women and men.
Pa ien o Public Con ibu ion: Pa icipan s we e pu posi ely chosen om he Uni
o Pain a he Uni e si y Hospi al ‘Pue a del Ma ’who a ended he consul a ion
accompanying hei ela i es. All he eligible pa icipan s we e app oached by he
clinician. A e his ini ial app oach by he clinician, one o he esea che s me he
po en ial pa icipan and hey wen o a quie e place in a clinical se ing o
he in e iew, be o e which he pa icipan was shown a le e wi h mo e
Heal h Expec a ions. 2023;26:409–418. wileyonlinelib a y.com/jou nal/hex
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409
This is an open access a icle unde he e ms o he C ea i e Commons A ibu ion License, which pe mi s use, dis ibu ion and ep oduc ion in any medium,
p o ided he o iginal wo k is p ope ly ci ed.
© 2022 The Au ho s. Heal h Expec a ions published by John Wiley & Sons L d.
13697625, 2023, 1, Downloaded om h ps://onlinelib a y.wiley.com/doi/10.1111/hex.13671 by Uni e sidad Del Pais Vasco, Wiley Online Lib a y on [15/03/2023]. See he Te ms and Condi ions (h ps://onlinelib a y.wiley.com/ e ms-and-condi ions) on Wiley Online Lib a y o ules o use; OA a icles a e go e ned by he applicable C ea i e Commons License
comp ehensi e in o ma ion abou he s udy and i s aim. The pa icipan s we e le
alone o ead and hink ca e ully be o e gi ing hei w i en in o med consen .
Pa icipa ion was olun a y and he subjec s ecei ed no inancial con ibu ion o
hei ime.
KEYWORDS
bu den, ch onic pain, expe iences, in o mal ca egi e s
1|INTRODUCTION
Ch onic pain (CP) is an impo an public heal h p oblem ha a ec s
be ween 10% and 30% o he adul popula ion in Eu ope, and 17% o
he gene al Spanish popula ion.
1
Addi ionally, his p e alence is
expec ed o inc ease in coming yea s, due o he ageing o he global
popula ion and p olonged exposu e o isk ac o s such as obesi y o
occupa ional ac o s.
2–4
The mean du a ion o CP in Spain is 10
yea s,
5
wi h he majo i y o he su e e s epo ing mode a e o
se e e pain.
5–7
The physical limi a ions expe ienced by people wi h
CP p oduce a g ea e need o ca e and assis ance, mos o which is
p o ided by an in o mal ca egi e (IC), ha is, an unpaid amily
membe o iend who p o ides assis ance wi h e e yday ac i i ies.
8
In his ein, he IC makes an impo an con ibu ion o he o mal
heal h sys em. The mean leng h o CP men ioned abo e, sugges s
ha he ICs ha e o accompany hei ela i e o a p olonged pe iod
o ime.
The ole played by ICs is no unique o CP pa ien s, as hey play
an essen ial ole in many diseases. The e o e, he needs, expe iences
and consequences o being an IC ha e been widely s udied, especially
in he case o IC o he elde ly, cance pa ien s, men al heal h and in
pallia i e ca e. In he case o ICs o cance pa ien s, a s udy ound
ha he new ole and asks pe o med can be emo ionally, physically,
socially and inancially demanding.
9
Simila ly, ICs o indi iduals wi h
men al illness we e ound o ha e limi ed social and ec ea ional
ac i i ies as a esul o hei dedica ion o he pa ien .
10
Addi ionally,
inancial s ess, de i ed om being esponsible o con inuous ca e
and main aining he amily income, was iden i ied as one o he mos
c ucial challenges in daily li ing, con ibu ing o men al illnesses
among ICs.
11,12
Mo e limi ed knowledge is a ailable abou he expe iences o ICs
o indi iduals li ing wi h CP pa ien s.
13
S udies ha e ound he e a e
some commonali ies wi h IC o o he diseases and some speci ici ies
ela ed o he cha ac e is ics o CP. Simila ly o wha happens in
o he diseases, he IC has o pe o m new asks ela ed o he ole,
such as adminis e ing medica ions, dealing wi h he possible side
e ec s o ea men and managing medical appoin men s. Some
s udies ha e shown
14,15
how ICs sha e he emo ional expe iences o
people in pain, including s ess, dis ess and insomnia which
signi ican ly educes hei own well‐being. Being he e e yday
‘wi ness o pain’obliges IC o ac as he epo e and de ende o
he pain o hose who may ques ion he since i y o he pain
13
due o
i s ‘in isibili y’,
16
o example by explaining o he physician he
cha ac e is ics o he pain o hei amily membe .
13
The he e oge-
nei y in indi idual's pain pe cep ions, and he biological, psychological
and social na u e o pain, equi es no only a clinical app oach bu
also ul illing he social expec ancies and esponsibili ies o o e
in o mal ca e.
13
Addi ionally, CP is equen ly associa ed wi h o he
pa hologies, making he ole o he IC mo e challenging and complex.
Expe iences o IC ha e been ound, as wi h o he diseases, o
a y in ela ion o sex and gende . Due o adi ional gende oles,
women, who a e he as majo i y o IC,
17
equen ly assume he
g ea es sha e o esponsibili ies o main aining he amily's
o ganiza ion and p o iding nu u ance o amily membe s.
17
This
gende gap is especially isible in ma u e‐age ca egi e s, ha is, hose
be ween 40 and 64 yea s,
18
who ha e been desc ibed in p e ious
s udies as he ‘sandwich gene a ion’.
19
These women ind hemsel es
in a si ua ion o ca ing o elde ly pa en s, ha ing dependen
child en and emaining ac i e in he labou ma ke .
8
Consequen ly,
women may expe ience losses o iden i y, p i acy and ime o
hemsel es and a e a g ea e isk o poo e heal h han hei male
coun e pa s.
20
Taking in o accoun ha CP p e alence is al eady signi ican and
is expec ed o inc ease in coming yea s,
4
leading o an inc ease in he
numbe o ICs o indi iduals li ing wi h CP, and ha p e ious s udies
ha e ound some speci ici ies ela ed o he cha ac e is ics o CP, his
s udy aimed o explo e he expe iences o ICs o people wi h CP o
be e unde s and and espond o hei needs. Likewise, hese
expe iences we e analysed om a gende pe spec i e.
2|METHODS
2.1 |S udy design
This is a quali a i e desc ip i e s udy
21
in which da a we e collec ed
h ough semis uc u ed in e iews o explo e he expe iences o ICs
o CP pa ien s.
2.2 |Se ing and pa icipan s
The pa icipan s we e he main IC o a pa ien wi h CP,
unde s anding IC as he pe son esponsible o he help needed
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by he pa ien o pe o m basic daily ac i i ies du ing he
main pa o he day wi hou ecei ing a sala y o p o iding his
help.
The inclusion c i e ia o he pa icipan s we e adul s who
accompanied hei ela i e wi h CP o he consul a ion o he Pain
Clinic o he Pue a del Ma Uni e si y Hospi al and
conside hemsel es o be him/he main ca egi e . A e an
analysis o he medical eco d and a physical e alua ion o he CP
pa ien , he clinician asked he pe son who accompanied him o
he i hey we e he main IC o he CP pa ien . In case
him/he esponded a i ma i ely, he clinician explained o hem
he aim o he s udy. All he po en ial pa icipan s answe ed
a i ma i ely o he ques ion and ag eed o pa icipa e. A e his
ini ial app oach by he clinician, he in e iewe me he
pa icipan and hey wen o a quie e place in a clinical se ing
o he in e iew.
2.3 |Da a collec ion
Da a collec ion ook place be ween May and Oc obe 2021. Twel e
ICs ag eed o pa icipa e in he in e iews (Table 1), which we e
conduc ed by HDS. Indi idual, semis uc u ed, quali a i e in e iews
ollowing a guide we e conduc ed in Spanish. The guide was based on
open‐ended ques ions de eloped wi h guidance om he li e a u e
ega ding CP and IC expe iences (Table 2). In e iews we e audio‐
eco ded, ansc ibed e ba im and anonymized. All names used he e
a e pseudonyms. We conduc ed in e iews un il e y simila
expe iences we e desc ibed in he las in e iews as he p e ious
in e iews.
2.4 |Da a analysis
We analysed all he in e iew ansc ip s ollowing hema ic analysis
as desc ibed by B aun and Cla ke in hei six‐s ep me hodological
guide.
22
The da a analysis was induc i e, hus hema ic cons uc ion
was da a‐d i en; no ini ial hypo hesis guided he p elimina y coding
and subsequen de elopmen o hemes.
Th ee in es iga o s pe o med an ini ial line‐by‐line coding o he
in e iew ansc ip s, ensu ing each in e iew had been coded by a leas
wo o hem independen ly o de elop a obus and consis en code se .
All he codes we e hen discussed and e ined be ween he same h ee
esea che s. The esul ing codes we e hen so ed in o po en ial hemes.
The elabo a ed hemes we e e ined using he h ee s ages
p oposed by B aun and Cla ke o his pa o he analysis, wi h he
pa icipa ion o all he au ho s. Fi s , all he coded ex ac s o each heme
we e ead ho oughly o check cohe ence in he pa e n ha led o ha
heme de ini ion. Once necessa y adjus men s had been made, he
p elimina y hemes we e con as ed wi h he whole da a se o e ine
hem. Finally, a de ailed analysis o each heme, including he meaning
and scope, as well as i s ela ionship wi h he o he hemes, was
conduc ed and w i en based on he da a ex ac s coded in each one.
3|RESULTS
Twel e people aged om 34 o 77 we e in e iewed (8 women and 4
men). Two o hem had a decla a ion o o al disabili y o wo k, and
i e we e e i ed o unemployed. The majo i y o hem (n= 8) we e
he in ima e pa ne , and ou pa icipan s we e daugh e s o he CP
pa ien (Table 2).
TABLE 1 Cha ac e is ics o he sample
Gende Age Income/occupa ion Rela ionship
Time dedica ed
o ca e Task pe o med
Na alia Female 44 To al pe manen disabili y Wi e Since 2016 24 h assis ance
Juan Male 72 Re i ed (b icklaye ) Husband Since 2012 24 h assis ance
Ma co Male 77 To al pe manen disabili y
(ca pen e )
Husband Since 2017 24 h assis ance
Pablo Male 73 Re i ed (Wai e ) Husband ‐Shopping and accompany o doc o
Rocío Female 34 Teache Wi e Since 2019 Housewo k and asks in ol ing
ca ying weigh
Celia Female 46 Adminis a i e assis an Daugh e Since 2020 Company and supe ision o all
mo he 's ac i i ies
Ma a Female 47 Unemployed Daugh e Since 2012 Housewo k and company
Elena Female 51 Teache Daugh e Since 2016 Company and supe ision
Ana Female 70 Unemployed Wi e ‘a lo o yea s’Housewo k, company and
supe ision
Ja ie Male 68 Re i ed (Sailo ) Pa ne Since 2015 Some housewo k, company and
supe ision
Mi iam Female 66 Businesswoman Wi e Since 2010 24 h assis ance
Milag os Female 45 Medical assis an Daugh e Since 2013 Company and Supe ision
DE SOLA ET AL.
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13697625, 2023, 1, Downloaded om h ps://onlinelib a y.wiley.com/doi/10.1111/hex.13671 by Uni e sidad Del Pais Vasco, Wiley Online Lib a y on [15/03/2023]. See he Te ms and Condi ions (h ps://onlinelib a y.wiley.com/ e ms-and-condi ions) on Wiley Online Lib a y o ules o use; OA a icles a e go e ned by he applicable C ea i e Commons License
Du ing da a analysis, one o e a ching heme—‘Becoming a
seconda y ac o o one's own li e’—and h ee hemes we e
elabo a ed: ‘Key elemen s ha shape his expe ience’;‘I 's he hand
ha li e deal me’and ‘The bu den o being a ca egi e ’.
The o e a ching heme cap u es an idea ha unde pins he o he
h ee hemes, while he combina ion o he hemes ‘Key elemen s
ha shape his expe ience’and ‘I 's he hand ha li e deal me’lead o
he hi d heme named ‘The bu den o being a ca egi e ’.
3.1 |Becoming a seconda y ac o o one's own li e
This o e a ching heme is abou how ca ing o hei ela i e wi h CP,
ega dless o he ela ionship, was a cen al pa o he li es o all he
pa icipan s in he s udy, o he poin o cas ing a shadow o e hei
own li es and expe iences. This shadow was exp essed on he one
hand by explici s a emen s abou he ull‐ ime dedica ion o he ca e,
and by na a i es abou how hey ha e minimized he impo ance o
hei own heal h issues and needs on behal o hose o hei
ela i es, as he ollowing quo e exempli ies:
I ha e been aging wi h pain o 10 yea s, bu as my
husband was in pain I did no pay a en ion o mine
and when I wen o he doc o , he old me I no longe
had a hip, i had comple ely wo n ou . I didn' pay
a en ion o my pain because I was aking ca e o him.
(Mi iam, 66 yea s old, ca egi e o he husband
24 hou s pe day)
On he o he , his loss o ele ance esul ing om ca ing o he
o he pe son was e lec ed in he way pa icipan s answe ed he open
ques ions. Al hough mos o he ques ions we e ocused on hei
expe iences as ca egi e s, all he in e iews we e ull o de ailed and ich
in o ma ion abou he heal h issues, men al heal h s a us, ea s, hopes,
di icul ies and so on o he pe sons hey we e aking ca e o , while hei s
we e desc ibed mo e succinc ly o minimized (Table 3). In his same ein,
hey used ‘we’ o desc ibe p oblems o issues ha we e in ac hei
ela i e's,asi isshownin heAnaquo e(Table3). Addi ionally, he IC has
o de end he c edibili y o hei ela i e in ela ion o he pain
expe ienced agains hose who ques ion he se e i y o e en he
exis ence o pain, as Na alia exempli ied (Table 3).
3.2 |Key elemen s ha shape his expe ience
This heme englobes he codes ha desc ibe all he con ex ual
elemen s beyond he indi idual cha ac e is ics o he ca egi e and
he pe son wi h CP ha we e essen ial in shaping he expe iences as
ca egi e s. The elemen s men ioned by he pa icipan s in his s udy
included: he ad anced age o bo h he ca egi e and hei pa ien ,
he ca egi e 's heal h s a us, he socioeconomic s a us, he COVID
ou b eak and he (mainly) lack o social/ amily suppo . In ela ion o
age and he heal h s a us o he ca egi e , some o he pa icipan s
we e hemsel es acing heal h issues ela ed o ageing while
simul aneously p o iding ca e o hei ela i es.
The ele ance o economic s a us was epea edly men ioned by
pa icipan s in hei discou se, especially when hey we e acing
economic di icul ies. Di icul inancial ci cums ances we e o en
ela ed o a basic educa ional le el and a li e o unskilled wo k in
p eca ious condi ions. Li ing on a limi ed budge was desc ibed by
in e iewees as a sou ce o wo y and a limi a ion o he ca e hey
could p o ide, om he ood hey could buy o making he home
accessible, and he possibili y o employing someone o help hem
wi h he housewo k o he leisu e ac i i ies hey could plan. As Juan
said: ‘My p oblems … he eal p oblem I ha e is inancial, mo e han
he heal h. Well, he heal h is e y impo an , bu i we didn' ha e
money p oblems, we migh li e much be e ’.
TABLE 2 In e iew guide used o he semis uc u ed in e iews
B1. Sociodemog aphic da a
Age/Educa ion le el/Employmen s a us/Ma i al s a us
B2. O igin o he si ua ion
How a e you ela ed o he pe son ha you look a e ? (mo he /
a he , son/daugh e , b o he /sis e , husband/wi e…)
Wha illness/es does you ela i e su e om? How does he illness
a ec hei physical and/o men al capaci ies?
How long ha e you been looking a e hem? How did his si ua ion
come abou ?
B3. In o ma ion ecei ed
Ha e you ecei ed any in o ma ion abou how o ake ca e o you
ela i e? How we e you gi en his in o ma ion?
In he e en o ha ing o make decisions abou heal hca e, ea men ,
looking a e you ela i e, who makes he decisions? How do you
decide?
B4. Daily li e, ca e expe ience and pe cep ion o you heal h
How many hou s pe day do you dedica e o p o iding ca e? Wha
kind o ca e does you ela i e need?
Wha is a no mal day like o you?
How do you hink aking ca e o you ela i e a ec s you heal h?
Wha abou you emo ional/psychological well‐being? Wha
changes ha e you no iced in you emo ional/psychological
well‐being?
B5. Family, social and wo king li e
How has aking ca e o you ela i e a ec ed you social li e?
How do you disconnec om you obliga ions?
How is you ela ionship wi h he es o you amily? Has his
ela ionship changed since you s a ed aking ca e o you
ela i e? Do o he membe s o you amily help you?
How has aking ca e o you ela i e a ec ed you wo king li e?
B6. Final ques ions
How would you desc ibe you expe ience as a ca egi e ?
Is he e any hing else you would like o add?
412
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TABLE 3 Quo a ions illus a ing ca ego ies and heme.
O e a ching heme: ‘Becoming a seconda y ac o o one's own li e’
Na alia, 44 yea s old, ca egi e o he husband: ‘I' e al eady come o
e ms wi h wha my daily li e is like and i doesn' bo he me and
i i should bo he me, I don' mind …because he's he e o me
and I'm he e o him. I'm no going o pu ha ing no lymph nodes
in my b eas be o e saying o him, “gi e me you hand, I'll help
you ge up,”I don' mind. I 's no ouble’.
Ana, 70 yea s old, ca egi e o he husband: ‘I was ecen ly admi ed
o he hospi al he e o my p os a e. And now on he 25 h we'll
be hospi alized again.
‐You will be hospi alized?
‐Him, him. I'll be admi ed wi h him. Who akes ca e o him? Me, so I
ha e o be in hospi al wi h him 24 hou s a day’.
Ana, 70 yea s old, ca egi e o he husband: ‘He had an ope a ion on
his knee and I always keep an eye on him and make su e he akes
his medicine. His illness doesn' hinde me a all. The hing is
he e's jus he wo o us and i 's no mal, I cook o bo h o us,
I go shopping o him, go o he chemis 's, go o he doc o o
him …Ve y o en he doesn' e en go o see he amily doc o ,
I ell he doc o whe e i hu s, “Look, he's no ge ing any be e ,
his leg hu s oday”(as i speaking o he doc o )’.
Na alia, 44 yea s old, ca egi e o he husband: ‘We ound people
who hink you' e aking i . Le 's see, I'm elling you ha his, his
and his happens o him, hey say: “i 's ha you …don' go e e y
ime wi h he c u ches.”When you see him wi h he c u ches, i 's
because he can' s and i mo e’.
Mi iam 66 yea s old, ca egi e o he husband: ‘I he calls me 20
imes, I go 20 imes …Ha ing o look a e him doesn' bo he me
a all, hank God. Ti edness is he only hing and when he nigh
inishes you end up eally i ed because o he “b ing me his, gi e
me ha ”…you know. Fo his showe he si s in a chai and I
showe him because he can' s ay s anding up …anyway’.
Ma co 77 yea s old, ca egi e o his wi e: ‘Iha emypains oo.Fo
example, I some imes ge sha p pains om my hip o my cal and I
ha e o s op and squeeze my leg and ha …I ha e p oblems wi h my
neck and shoulde s and I ge dizzy, bu no p oblem, I y o igno e i ’.
Ca ego y: ‘Key elemen s ha shape his expe ience’
Pablo, 74 yea s old, ca egi e o his wi e: ‘I am e i ed, I ha e a ai ly
decen pension. The hing is, I li e in a en ed house. So, hal o
my pension goes on en , elec ici y, wa e …Fo example, his
mon h I'm ha ing p oblems making ends mee ’.
Juan, 72 yea s old, ca egi e o his wi e: ‘Well, I could ake he ou
o b eak as e e y day, o example, which she likes. We'd go by
ca , I'd ake he o he shopping cen e, ake he in o own o
ha e a co ee, bu I can' do ha e e y day. I can' spend 4 o 5
eu os e e y day. I do i om ime o ime’.
Ma co, 77 yea s old, ca egi e o his wi e: ‘We eques ed he help o
a p o essional ca egi e om he Jun a de Andalucía ( egional
go e nmen ), and a e a while hey eplied ha I'm a G ade 1
dependency ca e case. We hink G ade 1 is oo li le, so we
appealed o be conside ed G ade 2. Tha was wo yea s ago, i 'll
be wo yea s soon, and s ill hey ha en' eplied’.
Na alia, 44 yea s old, ca egi e o he husband: ‘My husband is a builde .
He can' wo k and he has a 55% disabili y. When he medical boa d
called him and saw him, hey said, “you can' wo k as a builde , bu
you can do o he wo k”—“Wha o he wo k? I can' s and up, I can'
si down and I can' spend a long ime in he same posi ion”’.
(Con inues)
TABLE 3 (Con inued)
Rocío, 34 yea s old, ca egi e o he husband: ‘The doc o s ad ised
my husband no o go up and down s ai s and we li e on he
ou h loo wi h no li . So, i 's a nigh ma e e e y ime he goes up
o down he s ai s’.
Pablo, 73 yea s old, ca egi e o his wi e: ‘My child en only help i
I'm a bi o e whelmed. I do ell hem ha hey ha e o ake hei
mo he o ce ain places, bu no e y o en, e y a ely because
i 's no necessa y i I'm al igh … he e's no need o me o gi e
hem wo k o do’.
Ca ego y: ‘I 's he hand ha li e deal me’
Milag os, 45 yea s old, ca egi e o he mo he : ‘Iwan he obe
happy o he ime she is wi h …while she is ali e. And ha
she is as com o able as possible, as happy as possible and ha
she eels lo ed and close, know wha I mean? Tha 's my aim,
mo hing else’.
Mi iam 66 yea s old, ca egi e o he husband: ‘I'm al igh o now. I
hope I can ake ca e o him like his o a long ime. And ha God
gi es me good heal h. Tha 's wha I ask o . And ha God gi es
him good heal h so I can ake ca e o him o a long ime. Yes.
Because he's such a good man and he's been so good o me.
Seeing him like his…’.
Ma a, 47 yea s old, ca egi e o he mo he : ‘They a e all my amily.
I like he mo he hen and he o he s a e my chicks. You know
wha I mean? So, I ha e ne e hough abou li ing in any
o he way’.
Celia, 46 yea s old, ca egi e o he mo he : ‘My b o he is no as
compe en as me, do you unde s and? I'm much be e a hese
hings. When my mo he was in hospi al o he hip, I was he one
ha help he ha e a showe , I was he one …you know? I'm mo e
compe en . Fo coming wi h he o he hospi al, he's no use, and
well I'm a bi be e a i (she laughs)’.
Rocío, 34 yea s old, ca egi e o he husband: ‘I ha e expe ience as a
ca egi e o my mo he , who passed away 7 yea s ago, a e a
long cance . So, a home we a e expe s a handling and managing
si ua ions ha a e a bi di icul , and ca ying on wi h li e despi e
illness. Bu i 's pu ely down o expe ience and o he slaps
in he ace ha li e b ings. No because anyone has old us how
o do i ’.
Ca ego y: ‘The bu den o being a ca egi e ’
Rocío, 34 yea s old, ca egi e o he husband: ‘Imuchmo e
i ed han I should be. Tha 's simple and ob ious. My back
hu s because I some imes do mo e han I should. I a ec s
me, o cou se i does. A lo . As a as ca e goes, he e a e no
limi s’.
Elena, 51 yea s old, ca egi e o he mo he : ‘I he illness ge s mo e
complica ed in he u u e, we'll see wha I do. Do you
unde s and? So, now is when I s a ge ing wo ied, bu i 's
al igh o now. Like I say, I wan o be posi i e and any hing I can
do o he now …so ha she ge s be e …well. Bu i a ec s me,
o cou se i does, i 's no mal, isn' i ?’
Celia, 46 yea s old, ca egi e o he mo he : ‘I ha en' been ou o a
long ime, and ha en' wan ed o ei he because I won' eel a
ease knowing ha my mo he is alone’.
Na alia, 44 yea s old, ca egi e o he husband: ‘Well, we ha dly
ha e a social li e, we don' ha e a social li e. I migh see one o my
iends, bu we don' usually go ou ’.
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All he ca egi e asks we e pe o med wi h no speci ic suppo
om he heal hca e se ices and wi h li le suppo om social
se ices, which we e desc ibed as insu icien and slow o espond, as
he Ma co and Na alia quo es show (Table 3).
As his s udy was conduc ed in 2021, he COVID ou b eak was
men ioned by pa icipan s as a ele an e en in hei expe iences.
The mos ex eme impac was he loss o amily membe s due o
COVID, his being he case o wo o he pa icipan s. In he
emaining cases, he impac was ela ed o he lockdown measu es
and he es ic ions imposed by he go e nmen ega ding leisu e and
public spaces, and whe he hey we e a aid o going ou due o he
isk o in ec ion. As Juan s a ed: ‘My wi e isn' e y inclined o go ou
and wi h his pandemic e en less so; she's e y sca ed’. In addi ion,
he lockdown also had an impac on he physical and men al sphe e,
as Ana s a ed: ‘The lockdown has been absolu ely aw ul o my
husband because he has ha dly mo ed o 3 mon hs …bu a leas we
had he eadmill’.
Ye he co ne s one o all hese elemen s was he wide amily/
social suppo o he lack o i . The pa icipan s' expe iences a ied
in his sense and anged om e y good emo ional suppo o he
eeling o being o ally alone. In any case, he suppo ecei ed
was s ongly in e wined wi h all he elemen s desc ibed abo e, as
he suppo he o he amily membe s could o e depended o a
la ge ex en on amily membe s' age, socioeconomic s a us o
employmen s a us. Thus, in some o he na a i es, pa icipan s
explained o jus i ied he lack o suppo om hei ela i es by
explaining he economic o heal h s uggles hose ela i es we e
dealing wi h.
My husband's sis e s' ha e se led li es, so hey don'
ha e much con ac . I we won he lo e y, hey'd all
come ound, bu nobody comes o deal wi h he
pain. (Na alia, 44 yea s old, ca egi e o he husband)
3.3 |I 's he hand ha li e deal me
Al hough i was no a ques ion included in he in e iew guide,
pa icipan s explained o somehow jus i ied why hey we e in ha
ole. The di e se easons gi en we e unde pinned o di e en
ex en s by s a emen s abou ha ing no o he op ion bu o emain in
he ole wi h a sense o esigna ion. This lack o al e na i es was
s ongly linked o he p e ious ca ego y, whe e many pa icipan s
desc ibed he lack o wide suppo . All hese di e en posi ions we e
sus ained by eelings o esponsibili y and obliga ion because o lo e
o in he case o daugh e s wi h pa en s, he eeling o ha ing o
epay he ca e hei pa en s had gi en hem, as Milag os explained:
I ook on he esponsibili y mysel because, in u h,
i 's wha my pa en s ha e always done o me. I'm he
eldes , I was gi en he esponsibili y and ha 's how i
has s ayed. I' e ne e wan ed o s op …no because I
wouldn' like o bu because I'd eel bad, like sel ish, i I
did, you know wha I mean? (Milag os, 45 yea s old,
ca egi e o he mo he )
Thei ca egi e ole implied a long lis o asks. Pa icipan s
desc ibed how hey we e in cha ge o medical appoin men s, dealing
wi h medica ion, managing medical in o ma ion, making decisions,
keeping hei ela i e company, doing he housewo k, ying o chee
up hei ela i es o e en assuming he cos o mo ing house, while a
he same ime ha ing o cope wi h hei own wo ies and anxie y
abou he u u e.
Well, you see, my husband needs me o pu his socks
on because he can' due o he pain. I ha e o showe
him …he walks wi h he walking ame, wi h a walking
s ick, bu when I come o he hospi al I b ing him wi h
he wheelchai because he can' walk o mo e han
10 minu es. So, excep o eeding him, I ha e o do
nea ly e e y hing o him. (Mi iam, 66 yea s old,
ca egi e o he husband)
In he desc ip ion o wha aking ca e in ol ed, i is o no e
how he na a i es o he women di e ed om hose o he men.
When desc ibing he ac i i ies, hey did as pa o he ca e, men
men ioned explici ly doing he housewo k while women did no .
Mo eo e , men e e ed o he asks hey did as p o iding ‘help’ o
hei pa ne and no one o hei esponsibili ies in he house.
As Juan said:
I help he , she p ac ically …I e en help he make he
lunch, some hing I didn' know how o do be o e, bu
he e's no al e na i e bu o lea n. I clean o he , make
he beds o he , go shopping o he …. (Juan 72 yea s
old, ca egi e o his wi e)
In some cases, hey desc ibed how despi e li ing wi h CP hei
wi es s ill did mos o he housewo k. Pablo s a ed ha : ‘my wi e is a
housewi e and, no ma e how much I wan o, she says she p e e s
o do he cleaning he sel . She does e e y hing o be hones ; she's a
adi ional woman and ha 's al igh . She doesn' s op om he
momen she ge s up. Ou daugh e s ha e le home so he only
esponsibili y she has, you could say, is me’.
In his sense, women pa icipan s el be e equipped o assume
he ca egi e ole as mos o hem had p e ious expe ience o aking
ca e o someone else (Table 3), while o he men who ook pa in
his s udy, his was hei i s expe ience in his ole.
I' e always been someone ha …I' e aken ca e o my
a he , I was wi h my b o he when he was ill, when
my sis e had a b eas emo ed oo …So, I'm someone
ha can adap o any si ua ion and i doesn' a ec
me, hank God. I mean, losing a lo ed one a ec s me.
Tha ge s you down, bu hen you say ‘Well, i ha 's
he way i is…’ I God mean i o be like his …i 's he
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hand ha li e deal me. (Mi iam, 66 yea s old,
ca egi e o he husband)
In ac , o some women pa icipan s aking ca e o hei ela i e
wi h CP was simul aneous o aking ca e o hei child en o
g andchild en, despi e he ex a esponsibili y and ime i implies.
As Elena, who akes ca e o he mo he , said:
I'm also a an age whe e, i 's no ha I'm e y old, bu
you know, I do he housewo k, ake he gi ls o school,
come back o look a e my mo he ; I go wi h he , up,
down, unning a ound …s ess, lo s o s ess. And
hen my back and neck eel he e ec s and i a ec s
me. I ha e con ac u es, I ge dizzy and I ha e o ake
Enan ium and Diazepam all he ime. I a ec s me a
lo . (Elena, 51 yea s old, ca egi e o he mo he )
3.4 |The bu den o being a ca egi e and coping
s a egies
The combina ion o he di e en componen s desc ibed in he
p e ious wo hemes leads o a wide ange o pe cei ed bu dens
esul ing om he ca egi e 's ole. The na a i es o hose pa ici-
pan s who we e weal hie and had good amily o social suppo
exp essed ewe consequences o hei physical and men al heal h
han o he pa icipan s who we e s uggling wi h o he issues such as
limi ed economic esou ces.
Howe e , i is impo an o no e ha unde his heme and wi hin
each in e iew he e we e inconsis encies, in he sense o pa ici-
pan s saying he e we e no consequences and la e desc ibing some,
such as a e y limi ed social li e, abandoning hobbies o ake ca e o
hei ela i e, physical issues, anxie y, ea o he u u e, emo ional
exhaus ion o physical consequences o ci e some examples (Table 3).
I ake pills and I ha e been o many psychologis s and
hey all say he same: ‘i 's you mo he …You a e you
mo he 's mo he and, in he end, ha muddles
e e y hing’. (Ma a, 47 yea s old, ca egi e o he
mo he )
A he same ime, s a emen s showing esilience, hope and a
posi i e a i ude we e commonplace. In line wi h hem, pa icipan s
desc ibed hei coping s a egies and how hey we e making an e o
o ha e hei own space o , in some cases, a e ealizing hey we e
somehow losing hei li e, making a conscious e o o egain i .
U …i you don' wan o bang you head agains he
wall along he way, i isn' a physical jou ney, i 's a
men al one. I 's men al. How you a e in luenced …by
ce ain emo ions and you don' unde s and …you
ha e o unde s and ha , despi e he pain, li e goes
on. (Rocío, 34 yea s old, ca egi e o he husband)
4|DISCUSSION
The indings o his s udy show ha being an IC o a ela i e wi h CP
became he mos impo an ole in he IC's li e, o he poin o cas ing a
shadow o e he p io i ies o hei own li es. The expe iences also
a ied depending on he con ex s and key elemen s such as
socioeconomic le el o amily suppo . Likewise, independen ly o he
con ex , he ICs had he eeling o being he only pe son esponsible and
able o pe o m he ca e, ega dless o he consequences.
A signi ican esul o his s udy was ha he ICs in e iewed
neglec ed o li e hei own li es o ca e o hei ela i e wi h CP. I is
ema kable how he ICs e e ed o hei ela i e's illness as i i we e
hei own and o he pain p ocess as a sha ed expe ience. These indings
a e in line wi h s udies conduc ed o assess he needs o ICs o
indi iduals wi h o he pa hologies, whe e pa icipan s lacked ime o ca e
o hemsel es and add ess hei own heal h conce ns,
23
in some cases
wi h se e e de imen al consequences o hei heal h. I has been
shown how CP becomes he ocus o pa ien s' li es, and hey ha e o
bo h ede ine hei iden i y and adjus o he new cons ain s and
physical limi a ions o hei bodies.
24
In his line, and in he con ex o ou
indings, ICs change hei daily li es acco ding o ea men egimes,
helping o manage pain and side e ec s, a ending medical appoin men s
and esol ing e e yday p oblems.
9,25
Thus, he leng h o ime spen on
ca e is no he only impo an p edic o o he o e all bu den on ICs.
8,26
The e is also he ime los o hemsel es, he lack o p i acy and he
de elopmen o a new iden i y as a ca egi e .
27
The eno mous impac
he CP had on he li es o he IC ound in his s udy sugges s he
concep o ‘we‐disease’can be applied o he desc ibed expe iences. This
concep , de eloped ini ially by he pa icipan s o a s udy abou s ess
and coping s a egies among b eas cance pa ien s and hei pa ne s,
e lec s how b eas cance impac s no only he pa ien bu hei in ima e
pa ne s as well and, u he mo e, how he coping s a egies wi h he
s ess o each o he membe s o he couple a e in e ela ed.
28,29
Fu u e
esea ch on he expe iences o IC could u he explo e he applicabili y
o he ‘we‐disease’concep o IC and en ich knowledge abou hei
expe iences by adding his in e ela ional dimension.
Social and s uc u al de e minan s o heal h ela ed o he bu den
o people su e ing om CP ha e been widely s udied.
30,31
Ou s udy
enhances his knowledge by highligh ing how social de e minan s o
heal h a e also a key elemen in he bu den o being an IC. The limi ed
budge was desc ibed by in e iewees as a sou ce o wo y and a
limi a ion o he ca e hey could p o ide, and hus con ibu ed o he
pe cei ed bu den. Mo eo e , economic di icul ies agg a a ed he
dec ease in he ime ha bo h he IC and he CP pa ien had o
leisu e and social ac i i ies. This inding is ele an in ligh o he esul s
om Mille e al.,
11
who ound he inabili y o di icul y o pay o basic
needs and no ha ing a social li e we e ela ed o a high p e alence o
dep ession among ICs. I has been a gued ha no o he heal h p oblem
causes as much disabili y as CP.
32
In his line, he lack o economic
esou ces o make he pa ien 's home accessible p e en ed bo h he
pa ien and hei amily membe om spending mo e ime ou side o
hei home. P io s udies
33
ha e shown housing as an impo an ac o
d i ing heal h inequali ies, wi h long‐ e m isola ion p oducing ad e se
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e ec s on men al well‐being. Va ious s udies sugges ha among he
a iables ha ha e con ibu ed o he cu en c isis in CP ca e a e
policies ha in luence he socioeconomic clima e o he heal hca e
sys em.
34
In his line, ou esul s indica e ICs expe ience a eeling o
helplessness due o a lack o esou ces p o ided by public heal h o
social se ices, such as inancial suppo o o mal ca egi e s. The e o e,
add essing social inequali ies associa ed wi h CP is an essen ial ini ial
s ep in imp o ing his heal h p oblem, using collabo a i e app oaches
basedon hech onicca emodel,whichwouldop imizeno only he
pa ien s' quali y o li e bu also educe he bu den on ca egi e s.
35
This s udy was conduc ed in he con ex o he COVID‐19
pandemic. The ea o con ac ing COVID‐19, along wi h public
heal h measu es such as home con inemen , inc eased exponen ially
he ime spen a home. Recen li e a u e
36
has emphasized ha one
o he mos impo an consequences o he lockdown was i s impac
on men al heal h, pa icula ly ea , anxie y and nega i e hough s
abou onesel and he u u e.
37,38
In his espec , he lockdown
oge he wi h a combina ion o he di e en ac o s esul ing in a
limi ed social li e— aking ca e o hei ela i e, physical issues,
emo ional exhaus ion o physical consequences—lead o an inc ease
in he bu den pe cei ed by he ca egi e . Fu u e public heal h
measu es like hose implemen ed du ing his pandemic should ake
in o conside a ion he impac hey ha e on ulne able popula ions o
minimize heal h inequi ies ins ead o inc easing hem.
Howe e , he ca egi e bu den is no a uni e sal expe ience.
27
Some
indi iduals a e able o adap easily o he esponsibili y and demands o
ca egi ing, whe eas o he s epo signi ican s ain and dis ess.
39
In line
wi h p e ious esea ch, he s udy showed in e g oup di e ences in
gende , depending on he ela ionship wi h he amily, sou ces o suppo ,
du a ion o ca e and s age o he disease. The indings sugges ha
gende and he ype o ela ionship a e impo an concep s in unde -
s anding he ca egi ing p ocess and ha hey a e o en in e wo en. In
hecaseo hewomen, he ewe edi e encesin ecognizing hemasa
ca egi e since hey assume he ole mo i a ed by lo e and he desi e o
e u n he lo e ecei ed by hei ela i es. In ac , some o hem had
played o we e playing his ole wi h a ious membe s o hei amilies
simul aneously, accep ing ha hey had no choice. This inding is in
consonance wi h p e ious esea ch on he ‘sandwich gene a ion’.
19
Men
and women ha e been shown o cope di e en ly wi h ca egi ing
si ua ions.
40
Women a e mo e conce ned wi h he enhancemen o
o he s' emo ional well‐being and wi h he p o ision o emo ional suppo .
They a e mo e emo ionally in ol ed in he ca egi ing, while a he same
ime being la gely esponsible o doing he housewo k. Men ha e a mo e
ask‐o ien ed app oach o ca egi ing. Thissugges s ha bo h hele el
and impac o he bu den de elop di e en ly o e ime o men and
women, as o he a icles ha e shown.
41
5|STRENGTHS AND LIMITATIONS
As p e iously desc ibed, se e al s eps we e aken o s eng hen he
us wo hiness o he indings. They do, howe e , need o be
in e p e ed wi h some limi a ions in mind. Conce ning ans e abili y,
i is impo an o conside he con ex in which his s udy was
conduc ed: a g oup o indi iduals who accompanied hei ela i es o
a pain clinic in he Spanish heal hca e sys em. Wi h his in mind, he
esul s om his s udy could be ele an o unde s anding he
expe iences o ICs o a ela i e diagnosed wi h CP in o he coun ies
wi h a simila sociocul u al backg ound and heal hca e sys ems since
he consequences hey ace and conce ns hey ha e may be simila .
Rega ding c edibili y, pa icipan s wi h di e en sex/gende , ages
and expe iences we e chosen o inc ease he likelihood o shedding
ligh on he esea ch ques ion. Howe e , he as majo i y o people
in e iewed we e women. None heless, as discussed in his s udy,
his is in line wi h he pe cen age o women who end o be
ca egi e s since hey assume he ole mo i a ed by lo e, while also
accep ing ha hey ha e no choice.
Ano he limi a ion o his s udy is ha , al hough o ake pa in
his s udy he pa icipan s had o conside hemsel es o be he main
ca egi e , he esul s sugges ed gende di e ences in he way he
idea o ca e is concei ed and unde s ood. Howe e , he da a we e
no ich enough o suppo a deep analysis and he elabo a ion o
conclusions abou he social cons uc ion o he e m. Fu he
esea ch wi h his aim is equi ed.
6|CONCLUSION
This s udy's indings highligh how he CP impac s IC li es. Being an
IC o a ela i e wi h CP became he mos impo an ole in he IC's
li e, o he poin o cas ing a shadow o e hei own needs. Besides,
pa icipan s el no ha ing o he op ions bu o keep going wi h ha
ole. Ye , he con ex was essen ial in shaping he expe iences as
ca egi e s and he bu den de i ed om ca egi ing. In his line,
di e ences ela ed o gende oles we e ound in he na a i es o
pa icipan women and men.
6.1 |P ac ice implica ion
The numbe o people su e ing om CP is expec ed o con inue
ising, and consequen ly so will he numbe o IC. This s udy shows
ha ICs o indi iduals wi h CP ha e speci ic needs simila o he IC o
indi iduals wi h o he ch onic condi ions bu wi h ce ain speci ici-
ies. The lack o a o mal ca egi e p o ided by he s a e and delays in
inancial help lead o he amily membe eeling mo e and mo e
isola ed wi h g ea e esponsibili y and a bigge bu den, leading o
physical and men al p oblems. This should be aken in o accoun in
he implemen a ion o policies and heal hca e p og ams aimed a he
a en ion o indi iduals li ing wi h CP.
Finally, IC should be conside ed an in eg a ed pa o he CP
illness p ocess by heal hca e p o ide s. In his enhanced pe son‐
cen ed ca e, o mee bo h pa ien and IC's needs, social de e mi-
nan s o heal h and social suppo should be assessed in each
indi idual case om a gende pe spec i e o implemen e idence‐
based measu es ha p e en nega i e consequences o IC.
416
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DE SOLA ET AL.
13697625, 2023, 1, Downloaded om h ps://onlinelib a y.wiley.com/doi/10.1111/hex.13671 by Uni e sidad Del Pais Vasco, Wiley Online Lib a y on [15/03/2023]. See he Te ms and Condi ions (h ps://onlinelib a y.wiley.com/ e ms-and-condi ions) on Wiley Online Lib a y o ules o use; OA a icles a e go e ned by he applicable C ea i e Commons License
ACKNOWLEDGEMENTS
We would like o hank he pa icipan s o his s udy o gene ously
sha ing hei expe iences. We would also wan o hank he
physicians and nu ses om he Uni o Pain in he Uni e si y
Hospi al ‘Pue a del Ma ’ o le ing us be pa o hei eam o a
pe iod o ime, especially D . C is ina Delgado Na ei o. Helena De
Sola has disclosed ha she has ecei ed a g an o esea ch in he
ield o Pain om Fundación Española del Dolo .
CONFLICT OF INTEREST
The au ho s decla e no con lic o in e es .
DATA AVAILABILITY STATEMENT
The da a ha suppo he indings o his s udy a e a ailable on
eques om he co esponding au ho . The da a a e no publicly
a ailable due o p i acy o e hical es ic ions.
ETHICS STATEMENT
The s udy p o ocol was app o ed by he Clinical Resea ch E hics
Commi ee (Re e ence Numbe o he s udy: EXPCUI2020), ensu ing
compliance wi h he s anda ds o good clinical p ac ice. All
in o man s ga e hei consen o pa icipa e a e hey had ecei ed
indi idualized and su icien in o ma ion. This also included he
possibili y o aking back he consen o pa icipa e.
ORCID
Helena De Sola h p://o cid.o g/0000-0003-0196-4875
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