Quality of life and coping strategiesamong immigrant women living withpain in Denmark: a qualitative study

Camilla Michaëlis,1 Maria Kristiansen,2,3 Marie Norredam1,3

To cite: Michaëlis C,Kristiansen M, Norredam M.Quality of life and copingstrategies among immigrantwomen living with pain inDenmark: a qualitative study.BMJ Open 2015;5:e008075.doi:10.1136/bmjopen-2015-008075

▸ Prepublication history forthis paper is available online.To view these files pleasevisit the journal online(http://dx.doi.org/10.1136/bmjopen-2015-008075).

Received 4 March 2015Revised 10 June 2015Accepted 22 June 2015

1Section of ImmigrantMedicine, Department ofInfectious Diseases,Copenhagen UniversityHospital, Hvidovre, Denmark2Department of Public Health,Center for Healthy Aging,University of Copenhagen,Copenhagen, Denmark3Department of Public Health,Danish Research Center forMigration, Ethnicity andHealth, University ofCopenhagen, Copenhagen,Denmark

Correspondence toCamilla Michaëlis;cgn966@alumni.ku.dk

ABSTRACTObjective: To examine quality of life and copingstrategies among immigrant women living with chronicpain.Design: Qualitative content analysis based on in-depthsemistructured interviews.Setting: A clinic specifically targeting immigrants at alarger university hospital in Copenhagen, Denmark.Participants: Non-western female immigrant patientssuffering from chronic pain (n=13).Main outcome measures: Experiences of theimpact of chronic pain on quality of life.Results: Chronic pain was perceived to have anextensive, adverse effect on all aspects of quality oflife, including physical health, mental well-being andsocial relations. This included the ability to maintainactivities of daily living and the ability to work. Chronicpain was further experienced as a cause of emotionaldistress, depression and altered personalities, which allhad great consequences on women’s socialinteractions, causing change and loss of socialrelations. A variety of coping strategies were used tocope with the pain, manage its consequences, andrestore a level of health that would enable women tofunction and fulfil social roles. Many participants copedwith the pain by altering everyday life, keeping dailyactivities to a minimum and taking pain-killing drugs,offering temporary relief. Seeking healthcare wasanother coping strategy used as an active means toassert agency and as a temporary distraction frompain. However, accessing healthcare also involved arisk of disagreement and disappointments.Conclusions: Chronic pain had a severe negativeimpact on quality of life and necessitated alterations ineveryday life and active health-seeking strategies.Implications for practice imply a need for a moreholistic approach to immigrant women with chronicpain, including a family-centred approach. Furtherresearch is needed to explore similarities or differencesin and between populations with diverse ethnic,socioeconomic and psychosocial backgrounds, and toassess how ethnicity and culture might influence theexperiences of chronic pain.

INTRODUCTIONChronic pain is defined as pain that haslasted longer than 3 months1 and it

constitutes a common health problem inmany European countries, includingDenmark.2 The prevalence of moderate tosevere pain is estimated to be 16–19%among the adult Danish population.2–5

Living with chronic pain is challenging, asit seriously affects quality of life and inter-feres with normal physical, social and physio-logical functions. Therefore, patients livingwith chronic pain are more likely to sufferfrom sleeplessness, depression, emotionaldistress, low self-esteem and anxiety.5–9 Thepain experience interferes with the ability towork, undertake household chores, exercise,attend social activities and maintain an inde-pendent lifestyle,5 7 and therefore also hasconsequences for relationships with familyand friends, etc.6 Chronic pain is considereda public health problem with evident conse-quences for the individual patient as well asfor family members, healthcare providersand society, overall.2

Chronic pain is reported to be morecommon among women,2 9 10 groups withlower educational levels and lower income,groups living in compromised housing areas,individuals with lack of personal support9

and among immigrants. The literature showsthat the prevalence of chronic pain is higheramong immigrants in Europe than among

Strengths and limitations of this study

▪ The in-depth, qualitative approach enabled us toidentify the experience of the influence of livingwith chronic pain on quality of life among immi-grant women.

▪ The study elucidates patient perspectives amonga patient group with complex needs and thuspoints to important ways of improving quality ofcare for them.

▪ The quality of data collation is likely impeded bylanguage barriers.

▪ The lack of longitudinal and multiperspectivedata is a further limitation of this study.

Michaëlis C, et al. BMJ Open 2015;5:e008075. doi:10.1136/bmjopen-2015-008075 1

Open Access Research

on October 31, 2020 by guest. P

rotected by copyright.http://bm

jopen.bmj.com

/B

MJ O

pen: first published as 10.1136/bmjopen-2015-008075 on 10 July 2015. D

ownloaded from

the native European population.3 8 10 11 A recent Danishstudy found that individuals with a non-western back-ground have a significantly higher risk of reportingchronic pain than those with a Danish background.3 Inaddition, quantitative research has found that wide-spread pain is more prevalent among individuals with anon-western background, who also reported higherlevels of pain intensity and increased disability associatedwith chronic pain, consistent with previous internationalfindings,3 11 especially among female immigrants.3 12

Chronic pain is a result of biological, physiologicaland social factors,9 and the interplay between the under-lying causes is complex, affected by characteristics suchas age, gender, culture and socioeconomic resources,13 14

as well as the migration processes, which are known toinclude a potential health risk affecting both physicaland mental health.13 This makes immigrants, especiallywomen, a particularly vulnerable group. However, thereis great diversity both within and between ethnic groups,and the varying exposures to these and other factors canlead to differences.15 In addition, pain perception takesplace in a context of an individual’s environment,including the physical, social and emotional context,16

and may therefore be perceived and coped with differ-ently by different ethnic groups.8 11 17 18 The resourcesof the individual, including characteristics such asgender, cultural background and socioeconomic factors,as well as the responses to ethnic diversity by healthcare,further affect coping strategies.8 15

Affiliation to an ethnic group or being an immigrantmay not necessarily be responsible for differences in theperception and experience of pain, as these variationsare affected and sometimes better explained by socio-economic status and level of education.15 However,immigrants make up a vulnerable group as they areaffected by a series of factors, also making the access tohealthcare services in the destination country difficult.Immigrants often struggle with language difficulties andhealth illiteracy,19 20 and, additionally, healthcare profes-sionals may experience challenges due to language andcultural differences in encounters, leading to misunder-standings and frustrations from the perspectives of thepatients as well as the healthcare providers, and resultingin poorer treatment and clinical mistakes at worst.13 21

A number of quantitative studies have illustrated thatchronic pain is a major health problem with significantadverse effects on many aspects of a patients’ life and,thus, reduced quality of life.2–5 7 Relatively fewer studieshave explored the experiences of living with chronic painand how it affects quality of live including physical, dailyand social activities, and mental well-being and knowledgeis scarce about lived experiences of and coping withchronic pain among immigrant patients. By this qualitativeperspective, we aim to provide in-depth, contextualisedinsight into the lived experiences of chronic pain andcoping strategies utilised to manage a life with chronicpain among immigrant patients. Elucidating patient per-ceptions is thus an important step in identifying unmet

needs and avenues for intervention to support this patientgroup. The overall aim of our study was, therefore, toexamine the experiences of immigrant women living andcoping with chronic pain. The knowledge is important toidentify the impact of pain on the patient, and the unmetneed for health and social care services.The following research questions were investigated:1. How is chronic pain perceived to be affecting the

quality of life among immigrant women?2. Which coping strategies do these women employ in

order to manage chronic pain?

METHODSSettingThe study was conducted at the Section of ImmigrantMedicine (SIM), Department of Infectious Diseases, at alarger hospital in the vicinity of Copenhagen, Denmark.SIM is a medical outpatient service for immigrants, spe-cifically dedicated to vulnerable immigrants of differentethnic, primarily non-western, backgrounds, who areexperiencing complex health problems. Patients at SIMconstitute a rather diverse group with complex psycho-social and medical challenges. However, the patientsshares a number of characteristics, in particular, relatedto socioeconomic background, migrant status andexperiences with long-term treatment trajectories. Manyof these patients are referred to physiotherapy and occu-pational therapy because of experiences with chronicpain, muscle tension and physical inactivity.Consequently, this was a relevant setting for our study aswe wished to explore the experience of living withchronic pain among immigrant women, in particularhow the pain was perceived to affect quality of life andthe coping strategies employed due to pain.

Inclusion criteria and data collectionPurposeful sampling was used in selecting participants.Inclusion criteria for participation in the study were asfollows: (1) all patients at SIM referred to physiotherapyand occupational therapy and rehabilitation because ofchronic pain, muscle tension, physical inactivity andphysical disabilities; (2) country of birth (including onlywomen born in non-western countries) and (3) an ageof 18 and older. Participants differed with regard to typeof health problems and length of treatment trajectory.The first author was affiliated with the clinic during a

6-month period, and a combination of recruitment, par-ticipant observation and semistructured interviews wascarried out. Participant observation took place over aperiod of 2 months during the physiotherapy sessions.Recruitment of patients took place during observations,when patients were introduced to the researcher andestablished a more trusting relationship with her. Onewoman refused to participate in the study due to lack oftime, and another woman did not complete the inter-view, as it was not a therapeutic or healthcare-relatedexamination.

2 Michaëlis C, et al. BMJ Open 2015;5:e008075. doi:10.1136/bmjopen-2015-008075

Open Access

on October 31, 2020 by guest. P

rotected by copyright.http://bm

jopen.bmj.com

/B

MJ O

pen: first published as 10.1136/bmjopen-2015-008075 on 10 July 2015. D

ownloaded from

Participant observation further functioned as a sourceof insight into pain experiences, coping strategies andencounters between patients and healthcare profes-sionals. This contextual information fed into the inter-view guide, and was included during interviews andanalysis. A total of 13 in-depth interviews were carriedout between October and November 2014 by the firstauthor. Interviews were semistructured and based on aninterview guide (see box 1 for topics discussed duringinterviews). To contextualise the experiences of chronicpain, questions regarding general health, socioeconomicstatus and social relations were asked. The interviewguide was pilot tested and minor adjustments were madeto lower the risk of misunderstandings arising out of lan-guage differences. One interview was conducted witheach interviewee at the clinic. Interviews lasted between17 and 90 min. All patients were offered professionalinterpreters to ensure inclusion of patients who spokelittle or no Danish. A total of four patients preferred aninterpreter, and, in these cases, an online video inter-preter was employed. The remaining interviews wereconducted in Danish since those patients were suffi-ciently fluent in Danish to ensure a meaningful conver-sation. During interviews, clarifying questions were usedto ensure that the questions were adequately understoodby the patients. Only the patient and the researcherwere present during the interview. Immediately after thesessions, notes related to immediate impressions weretaken and used in the subsequent analysis as contextualinformation. Initial analysis was conducted after eachinterview, and data collection was continued until a sat-uration point was achieved.

Data analysisData were analysed through content analysis focusing onexperiences and perceptions related to living withchronic pain. Interviews were fully transcribed and tran-scripts and reflection notes were both used. Data wereanalysed according to Malterud’s guidelines for qualita-tive analysis and systematic text condensation.22 First, thetranscribed interviews were read several times to obtainan impression of the text as a whole. Second, meaning-ful units were identified and categorised in all

interviews. Third, data were reduced to a decontextua-lised selection of meaningful units categorised as the-matic codes across the interviews. Finally, descriptionsand concepts were summarised into main findings.These were discussed within the research group andwith researchers from cross-disciplinary backgrounds. Inthe presented results, the grammatical structures of thequotations were slightly altered to make them morereadable. To ensure that no meanings were lost in theprocess, every transcribed quotation was analysed anddiscussed in-depth by the three authors.

EthicsPatients were introduced to the study by their physio-therapist. Subsequently, the women were approached inperson by the researcher who presented herself,explained the aim of the study, ensured their willingnessto participate and provided an information letter inDanish detailing the aims of the study, and researchethics, including anonymity, storage of data and theright to discontinue participation at any time. Some ofthe women received further oral explanation from theirphysiotherapist. A professional interpreter in their nativetongue was offered to all interviewees. Before the inter-views, the women were informed that the interviewswould be taped and it was ensured that participantsunderstood their rights and the purpose of the study. Allparticipants signed a declaration of informed consent inan appropriate language. They were also able to contactthe interviewer after the interview. It was further ethic-ally approved by the ethics board at the hospital wheredata collection took place. The study was conducted inaccordance with ethical principles for medical researchproclaimed by the Helsinki declaration.

RESULTSAll participants were non-western immigrant womenwho had migrated to Denmark from Turkey, Iraq,Afghanistan, Somalia, Pakistan, Jordan or Morocco.They represented some of the major immigrant groupsin Denmark23 and had arrived primarily as refugees orthrough family reunification. The women were betweenthe ages of 33 and 63 years, and had lived in Denmarkbetween 11 and 40 years. Eight women were married,five divorced and all but one had children. Most of thewomen had previously had regular work, but all wereexcluded from the labour market due to pain. Thewomen had suffered from chronic pain between 4 and23 years. While for some there was a diagnosed under-lying disease causing the pain, this was not the case formost of them. Chronic pain, in this study, refers to theexperiences of living with pain for more than 3 months,regardless of diagnosis. An overview of the informants ispresented in table 1.In the following, we will present the results divided

into two main themes: experiences of chronic pain andcoping with chronic pain. Categories extracted from the

Box 1 Topics of the semistructured interview guide

▸ Background information: country of birth, migration experienceand time spent in Denmark, social relations in Denmark,labour market attachment.

▸ The experience of pain: duration, perceptions of the pain andits causes, coping strategies.

▸ Everyday life: influence of pain on activities of daily living,quality of life, and social relations, roles and responsibilitieswithin families, social and practical support, and identity.

▸ Treatment and expectations for the future: expectations for thefuture with regard to the management of chronic pain andtreatment options.

Michaëlis C, et al. BMJ Open 2015;5:e008075. doi:10.1136/bmjopen-2015-008075 3

Open Access

on October 31, 2020 by guest. P

rotected by copyright.http://bm

jopen.bmj.com

/B

MJ O

pen: first published as 10.1136/bmjopen-2015-008075 on 10 July 2015. D

ownloaded from

experiences of chronic pain included altered mentalwell-being and strained social relations. Within thetheme of coping with chronic pain, altering everyday lifeand seeking healthcare is presented.

Experiences of chronic painLiving with chronic pain affected the women’s quality oflife in several ways (figure 1). In the following, the con-sequences for their ability to maintain activities of dailyliving, their mental well-being and interactions withtheir social relations will be described.

The negative impact on activities of daily livingThe experience of chronic pain had extensive conse-quences for women’s lives, and their ability to continuetheir usual activities of daily living was limited by thephysical impact of the pain. Some women describedimpaired everyday activities related to putting onclothes, taking a shower, lifting shopping bags, going fora walk, taking the children to school, doing paperworkor sleeping, as a challenge. The women described howdifficulties in sleeping, fatigue, limited energy and anincreased need for rest, kept them from fulfilling theirresponsibilities and duties, forcing them to prioritisetasks and keeping everyday life to a minimum.Interviewees all experienced great difficulties in man-aging household chores such as cooking, cleaning, hoo-vering and shopping; however, only one received homehelp. A woman said:

House cleaning I cannot do and my house is dirty, but Ihave to do without a lot of things because I cannot carryit off. I need help from others […] it is hell when I haveto cook. I have to lie down and adjust the cooking to mypace and cook the easiest way […]. When I have to washclothing, that day I do not cook, I simply cannot. (Pt 1)

The ability to undertake paid work was another areaaffected by the pain. Reduced physical capabilitiesrequired 10 of the women to retire from work, as theworking conditions became too onerous. The exclusionfrom the labour market further impacted on thewomen’s finances, forcing them into a poorer economicsituation. Lack of money hindered their possibilities forseeking treatment and technical aids and, therefore,also opportunities for improvements. Some of thewomen expressed a need for appliances such as a dish-washer or a washing machine to relieve the pain andease everyday life, but did not have the finances toacquire these. Others mentioned being unable to attendregular treatment without transportation grants from thehospital. Furthermore, poor financial resources made itdifficult to prioritise health.

Altered mental well-beingIn addition, the experiences of living with chronic painwere perceived to be related to emotional distressincluding sadness, depression and a sense of isolation.Feelings of anger, fatigue, impatience, confusion andbeing inadequate were also presented:

House cleaning I cannot do in my own home, I cannot goto work and you become dissatisfied with yourself.Imagine everything you do—you use your hands and yourarms and then imagine an adult with no arms and nohands—you feel powerless […]. [The pain] is not onlyphysical pain, it also affects me psychologically. You haveyour daily activities, you want to complete your work andwhen you have pain, you cannot get your work done, thenyou become dissatisfied with yourself and that affects yourmind. Some days when I get up, I can hardly put on myclothes and some days I am so sad, so sad, I just sit downand cry because of the pain and because I cannot evenget dressed. Sometimes you lose hope. (Pt 5)

Table 1 Characteristics of interviewees (n=13)

Participants Age Family situationNativecountry

Years inDenmark Pain location

Lengths of painexperiences, inyears

P1 30–40 Married, 2 children Pakistan 25–29 Generalised pain 11

P2 40–50 Divorced, 3 children Iraq 10–14 Neck, back, head 11

P3 50–60 Married, 5 children Jordan 25–29 Shoulders, arms,

generalised pain

4

P4 50–60 Married, 6 children Iraq 25–29 Generalised pain 4

P5 40–50 Married, 3 children Turkey 25–29 Shoulders, arms, feet 9

P6 30–40 Divorced, 2 children Afghanistan 20–24 Head, neck, shoulders,

arms

4

P7 50–60 Divorced, 3 children Morocco 40–44 Generalised pain 10

P8 30–40 Married, 5 children Afghanistan 15–19 Shoulders, back, neck,

head, legs

19

P9 30–40 Married, 3 children Turkey 15–19 Back, legs, kidney 3

P10 60–70 Married, 5 children Turkey 30–34 Back, legs, arms 14

P11 50–60 Married, 4 children Iraq 20–24 Knees, neck, back 15

P12 40–50 Divorced, 3 children Turkey 30–34 Back, feet, head 23

P13 50–60 Divorced, 0 children Somalia 15–19 Shoulders, arms, legs 5

4 Michaëlis C, et al. BMJ Open 2015;5:e008075. doi:10.1136/bmjopen-2015-008075

Open Access

on October 31, 2020 by guest. P

rotected by copyright.http://bm

jopen.bmj.com

/B

MJ O

pen: first published as 10.1136/bmjopen-2015-008075 on 10 July 2015. D

ownloaded from

A temporal dimension appeared, as these emotionaloutcomes contrasted with women’s perception of theirformer selves. Most women described themselves asonce being strong and independent in various ways—inrelation to children, husband, friends and work. Theyperceived themselves as having been physically and emo-tionally strong, healthy, having positive emotional atti-tudes, being resourceful and being conscientiousworkers, living up to responsibilities and duties. Theydescribed how the experience of pain had altered theirperception of themselves, and a number of womenfound it difficult to reconcile themselves with theirchanged identities:

Maybe I am done living […] I have never been like thisbefore. […] I was a strong woman, I was active, I washappy and I did many things myself. (Pt 13)

The women found pain and ailing to be a natural con-sequence of ageing. However, they experienced pain at ayoung age and the unexpected life situation was, formany of them, difficult to reconcile with. A womanexplained it as being a young woman trapped in an oldbody, with her future taken away. Additionally, somewomen stressed how the pain disrupted and spoiledfuture dreams:

Right now, I do not have so many thoughts about thefuture, because I am afraid every day, I am worried abouthow things are going to be in the future […]. I do nothave so many dreams, I do not have so many goals.I would like to set some goals, but it will not let me, mysituation, […], so right now it is just about every day, ininstalments. (Pt 6)

Interplay between several individual, social and struc-tural determinants emerged, constituting a complexinteraction that interfered with the experience of livingwith pain. One of the women described:

Firstly, I cannot work because of my pain, it affects myfinancial circumstances, and it affects me socially. It islike a line, you need to have all in succession, when youhave a good economic situation, then you will also have itwell socially. When you are healthy, then you are sociallywell too; it is a circle—when you are losing a ring, thenyou are losing it all. In my situation, many rings aremissing, both money- and health-wise. Then you just feelempty inside. (Pt 12)

Strained social relationsAll the women mentioned social relations as essential inrelation to their health, but experienced the pain asinterfering with the abilities to create and maintainsocial relations. Loss of social relations and being insocial isolation emerged as the pain and the physical

Figure 1 Variables influencing the experiences of chronic pain.

Michaëlis C, et al. BMJ Open 2015;5:e008075. doi:10.1136/bmjopen-2015-008075 5

Open Access

on October 31, 2020 by guest. P

rotected by copyright.http://bm

jopen.bmj.com

/B

MJ O

pen: first published as 10.1136/bmjopen-2015-008075 on 10 July 2015. D

ownloaded from

disability restricted mobility, and rendered the womenunable to maintain leisure-time activities, invite friendsand family to dinner or to engage in other social activ-ities. Two women described how their inability to workresulted in a loss of social relations and valued collea-gues, which further interfered with the experiences ofpain:

When you work, then you are at least active socially, inmany ways, but now I’m just at home. If I should describeit in numbers, if I was once at ten socially, now I’m just atone. I’m doing nothing, almost nothing. Also, financially,there are many reasons for it [social isolation]. Now Ionly receive cash welfare benefit; you cannot call a friendand go to a cafe and have a cup of coffee […]. There aremany reasons for this, both the pain and financial, so itis not only because of the pain. (Pt 12)

For some of the women, social isolation was perceivedto be self-imposed. The fear of inappropriate appear-ance due to the unpredictable and uncontrollable painresulted in them staying at home and avoiding socialgatherings.Also, the remaining social relations were reported to

undergo changes with time, and most women describedhow previous roles, as parent, caregiver, friend and wife,were restricted due to the pain. Role reversals weredescribed as an occurrence within most families andwere perceived to have profound consequences for thefamily, in particular the children. The women struggledwith maintaining motherhood roles and responsibilitiesdespite the experience of chronic pain. Some describedthemselves as inadequate and stressed how they were nolonger able to meet the needs of their children. Theextensive effect on the children caused great distress:

It affects me a lot. For example, I would like to do allkinds of different cooking [for my children], but I haveto figure out whether I can manage it or not, […] chan-ging the bed linen is so difficult for me; even thoughI do not wish the children to change their linen them-selves, even though I wish to do it, I simply cannot.There are so many things I do not want my children todo, I want to do it myself, but I just cannot because ofthe pain. (Pt 12)

Nevertheless, the children and husband were per-ceived as the most important sources of practical helpfor maintaining everyday life. By providing socialcompany, showing attention and being supportive inboth emotional and practical ways, social relations, par-ticular family and friends, could offer improved well-being for some of the women. Providing practical helpenabled the women to avoid performing tasks causingpain and exhaustion, and helped them gain a sense ofcontrol over the pain. Some women explained howsocial relations could distract attention away from thepain for short periods of time. However, negative influ-ences in social relationships also occurred, includingunsupportive attitudes and behaviours, which, in

addition, challenged the experiences and appearance ofpain. Obtaining social support was an ongoing processinvolving a negotiation of the existence of the pain, con-vincing others about their credibility and a struggle foracceptance and legitimacy:

Before I was healthy and served him [husband] in everypossible way and had children, he knows […] I went towork, I came home and washed clothes, cleaned, did theironing, all kind of things. Now I am ill, I cannot do that,he knows that I’m sick. (Pt 10)

Some experienced being met with scepticism and dis-trust, and found it difficult to justify the pain and its lim-itations. A woman further described how, restricted byher pain, she became unable to carry out her formerduties resulting in distrustful and sceptical responsesfrom her mother-in-law. Similar narratives occurredamong other interviewees. Mostly, the women experi-enced that their husbands were dissatisfied and onewoman explained how that ultimately led to divorce:

My husband, he has not [accepted my pain] […]. Wewere happy with each other when I was young andhealthy; then I could do all the things at home, all sortsof things, cleaning, taking care of the children and workand so on. When I was not able to do it any more, hestarted saying many things, and therefore I divorced myhusband. (Pt 12)

Coping with chronic painThe women described using a variety of strategies tomanage the pain, even though it often seemed uncon-trollable. Strategies were used to manage the conse-quences of the pain, maintain their everyday life and torestore a level of health that would enable them to func-tion and complete their social roles.

Altering everyday lifeAll the women reported having personal coping strat-egies for easing and controlling the pain, and alteringeveryday lives in order to deal with the pain was acommon strategy. Keeping daily activities to a minimum,limiting physical activities, taking pain-killing drugs,resting, keeping warm, using technical aids and gettinghelp from others, were the most common coping strat-egies used to ease the pain and to some extent maintaineveryday life. They mentioned the use of pain-killingdrugs as a more direct means with which to control thepain even though it only provided temporary or norelief. Keeping occupied and diverting attention fromthe pain offered some women temporary relief.However, the longstanding pain controlled the

women, forcing them to adjust their lives:

It [the pain] affects me in an absolutely terrible way. Ialways have to be careful […], when I am doing some-thing […]. The next day, I become completely ill, so thatis why I have to consider before I start doing something

6 Michaëlis C, et al. BMJ Open 2015;5:e008075. doi:10.1136/bmjopen-2015-008075

Open Access

on October 31, 2020 by guest. P

rotected by copyright.http://bm

jopen.bmj.com

/B

MJ O

pen: first published as 10.1136/bmjopen-2015-008075 on 10 July 2015. D

ownloaded from

—tomorrow, how do I endure it, that is why I am onlydoing half or just avoid doing something altogether (Pt.12)

Despite several coping strategies and efforts to easethe suffering, the pain was a recurrent problem that con-tinually interfered with everyday life and caused a senseof powerlessness.

Seeking healthcareThe women articulated how chronic pain became thefocus of their lives as longstanding periods of discom-fort, numerous medical appointments and examinationsand the search for a successful treatment structured andfilled their time. An active use of healthcare servicesappeared as a way of attempting to manage the situation,thus trying to assert agency in coping with the pain.Seeking healthcare in this manner appeared as a supple-mentary means of coping with the pain, as it gave rise toa sense of agency, offering a way to manage an otherwiseuncontrollable situation. Attending treatment andphysiotherapy were furthermore mentioned as a tempor-ary distraction from pain.However, the women had suffered from chronic pain

for several years with no actual improvement in theircondition, and only a few mentioned trust in how theyhad been examined or diagnosed. Although most of thewomen had braced themselves for future pain, they didnot want to reconcile themselves to that and all of themcontinued to seek healthcare in the search for a cureand, thereby, to control their pain. Although the womenin general seemed to have a positive attitude towardshealthcare, some voiced negative experiences such asdissatisfaction and disagreement. Contradictory beliefsabout the origin of pain were reported often to appearin encounters with the healthcare profession; thewomen considered their pain to be a physical problem,while the physician explained it as a psychologicalproblem due to depression and physiological distress asillustrated:

The doctor does not understand what is wrong with me.They only understand that I have depression and becauseof the depression I have this pain. I tell them: “No, Ihave not got depression, it is because of the pain I amdepressed—because I am always in pain. I cannot cookor anything in the home or be responsible for my chil-dren as before. (Pt 4)

Dissimilar perceptions of the origin of pain were asso-ciated with feelings such as frustration and disorienta-tion, making it difficult to identify appropriate copingstrategies.The women also described unsatisfactory care epi-

sodes with lack of accurate examinations or diagnosis,ineffective treatment, not being listened to or taken ser-iously. Constantly being referred for different examina-tions, and meeting new doctors and repeating theirstories were described by some women as an unending

stressful and uncertain situation, in which the pain andlack of appropriate examination and treatment limitedtheir possibilities for regaining a sense of control intheir lives.

DISCUSSIONThis study contributes to the literature by showing thatthe experiences of chronic pain influenced broadaspects of the lives of female immigrant patients andhad an extensive impact on their overall health-relatedquality of life. The pain reduced their ability to maintaintheir usual daily activities and to work. In addition, itinvolved emotional distress, depression and altered per-sonalities with great consequences for the women’ssocial interactions, including change in and loss of socialrelations. Therefore, a variety of strategies were drawnon to cope with the pain, manage the consequences,and to enable the women to function and completesocial roles to some extent.The physical disabilities from pain led to extensive

restrictions, including persistent suffering, fatigue andlimited endurance, preventing the women from living aspreviously. Everyday life was kept to a minimum, as theywere no longer able to carry out daily activities, responsi-bilities and duties, and excluded from the labourmarket. Consequently, their poor economic statusaffected potential improvement by restricting the possi-bilities for direct and indirect health promotion behav-iour, including the ability to attend regular treatment,the acquisition of technical aids, exercising, having abalanced diet24 and participating in social relations.Financial resources became a mediating resource, inwhich a lack of money became an additional stressor inthe experiences of living with pain.The pain furthermore interfered with the mental well-

being of the women. Similar to other chronic painstudies among ethnic majority populations, severalwomen experienced mental problems, such as depres-sion, that they related to long-term pain experi-ences.5 9 25–27 The longstanding suffering, therestrictions and the dependency on others, caused dis-tress and a sense of inadequacy. The experiences ofliving with chronic pain and the extensive consequenceson all aspects of life interfered with the women’s self-images. The perception of no longer being independentor having positive emotional attitudes as before led to abreakdown of self-image, thus changing the personalitiesof the women. However, they pointed out that the painwas not caused by individual weakness or personality orused as an excuse to avoid work. Experiences of break-down of former self-images and the struggle for self-esteem were also identified as important in anotherstudy among women with chronic pain.27 These womencontinuously made efforts to maintain a positive andstrong self-image in an attempt to convince others aboutthe credibility of their version of their illness. As withthis study’s findings, the women distanced themselves

Michaëlis C, et al. BMJ Open 2015;5:e008075. doi:10.1136/bmjopen-2015-008075 7

Open Access

on October 31, 2020 by guest. P

rotected by copyright.http://bm

jopen.bmj.com

/B

MJ O

pen: first published as 10.1136/bmjopen-2015-008075 on 10 July 2015. D

ownloaded from

from other women with similar pain to themselves,which might be an implicit approach to reject stereo-typed medical accounts, and to avoid medical discoursesabout unexplained pain or cultural marginalisation andthe perceptions of being a lazy, weak and illness-fixatedfemale patient.27

Within the literature, the concept of ‘ethnic pain’assumes immigrants to have different pain perceptionsand behaviour than natives. However, the present find-ings concur with previous studies indicating that theexperiences of living with chronic pain are not uniquefor immigrants. The interplay between the underlyingcauses of chronic pain are complex psychological andsocial factors determining the experiences of painincluding levels of anxiety, depression, social supportand coping strategies.16 Affiliation to an ethnic group orbeing an immigrant may not necessarily be responsiblefor differences in the perception and experience ofpain, as these variations are affected and sometimesbetter explained by lack of socioeconomic resources anda low level of education.15 28

Social relations emerged as an important factor in theexperiences of living with chronic pain, affecting experi-ences in both positive and negative ways. The import-ance of supportive relations was clearly expressed by allthe women in relation to managing everyday life andhandling the pain,13 and also in alleviating some of itsconsequences.14 29 30 However, the pain restricted theability to maintain and establish social relations and alsoaffected inclusion in the labour market. Therefore,immigrant women may constitute a particularly vulner-able group among chronic pain patients due to themigration process, which often entails changes and lossof social relations.14 29

Even though social relations were physically available,they did not necessarily entail practical or emotionalsupport. The women’s stories illustrated that acknow-ledgment of the pain was of great importance, but notalways achieved. Possessing a sick role, including a set ofrights, privileges and temporal exemption from fulfillingnormal social obligations, is a process that requiressocial validation26 31 whereby the reactions of others andthe cultural context lived in play an important role inthe experience of chronic pain.27 32 Sceptics and unsup-portive reactions challenged the possibilities of obtain-ing support and became additional stressors in theexperiences of living with chronic pain. Additionally,Werner et al27 found women struggling to be taken ser-iously, and struggling to be believed and understood inmedical encounters and in social relations, when experi-encing chronic but invisible pain.However, the consequences of the chronic pain did

not only exert an impact on the women; they alsoaffected social relations, particularly the family, whichunderwent changes, with a role reversal occurringwithin most of them. This occurrence corresponds withprevious studies of patients with chronic pain and theirroles within their families in other countries, settings

and populations.6 13 Furthermore, Zander et al13

explained that the combination of forced resettlementand unpredictable pain results in a sense of loss ofcontrol and a dependency on society as well as on socialrelations, creating feelings of not being free. Moreover,our study also identified the distress of suddenly beingdependent on and a burden to others, especially chil-dren. The women did not wish to encumber their chil-dren, even though most of them experienced doing so.In that way, pain led to a vicious circle, including differ-ent negative emotional feelings that might have resultedin a reduced pain threshold.8 9

As the present study illustrates, pain had become thefocus of the women’s lives and they had developed avariety of coping strategies. These were used to managethe consequences of the pain, maintain their everydaylife and to restore a level of health that would enablethem to function and complete their social roles.Altering daily lives by keeping daily activities to aminimum and taking pain-killing drugs offered a tem-porary relief, and were the most common ways of con-trolling the pain. Consistent with this research, otherstudies have found that diverting thoughts from thepain by keeping occupied could offer distraction andthereby ease the suffering.13 However, the women’s situ-ation was characterised by uncertainty, as they hadstruggled with pain for several years with no actualimprovement. Without being able to find adequatestrategies to cope with the pain, they had becomedependent on healthcare professionals. Seeking health-care entailed a number of potential options to over-come the pain and was perceived as an active means bywhich to control and cope with the pain, and a way oftaking responsibility for their own health. Healthcarebecame an important source of hope, and expectationof forthcoming examinations enabled the women toenvisage a better future, providing them with motiv-ation and guidance for action.13 33 However, numerousunsuccessful attempts at finding a cure or successfultreatment consequently led to disappointments, mistrustand frustration, and an additional sense of lack ofcontrol.13 Knowing the origin of pain was perceived tobe important, since it could lead to explanations anddiagnosis, and help in choosing an appropriate treat-ment or action.26 34 Therefore, dissimilar perceptionsof the origin of pain caused great frustration and afeeling that the healthcare professional was discreditingthe reality of the pain. In accordance, Newton et al25

found that the absence of physical pathology, adoptinga psychological framework to understand the pain andits impact often occur, but such explanations given bythe healthcare professionals are closely related to theexperience of stigmatisation and discredit, whichfurther threatens the identity of the individuals. Lack ofappropriate examination and treatment also hinderedthe ability to regain a sense of control in their lives,and the ability to act towards or even envisage a futurewith no pain.

8 Michaëlis C, et al. BMJ Open 2015;5:e008075. doi:10.1136/bmjopen-2015-008075

Open Access

on October 31, 2020 by guest. P

rotected by copyright.http://bm

jopen.bmj.com

/B

MJ O

pen: first published as 10.1136/bmjopen-2015-008075 on 10 July 2015. D

ownloaded from

Many of the findings in the present study are consist-ent with previous studies among the population ofmajorities, emphasising that the experiences and conse-quences due to chronic pain concern not only immi-grant women, but chronic pain patients in general.5–7 9

METHODOLOGICAL CONSIDERATIONSA limitation of the study was due to language. Offeringinterpreters during the interviews made it possible toinclude women who spoke little or no Danish, and fourof the interviews were carried out with an interpreter.Conducting interviews with interpreters may affect thedepth as well as the interpretation of the responses,either supporting or limiting the communication. Also,the use of online video interpretation may create a differ-ent interview context than 1:1 interviews, particularly dueto the influence on the ability to create good interper-sonal relationships shaped by trust and confidence.However, the interpreters were all trained in interpret-ation techniques and ethics, and some of the patientswere familiar with the interpreters, which may have con-tributed to higher degree of informality and mutual trustin the interview situation. Furthermore, by using profes-sional interpreters from the same area as the participants,an effort was made to diminish communication barriers/difficulties. Additionally, we sought to ensure appropriateunderstanding between patients and interviewer byincorporating follow-up questions and rephrasing wordsduring interviews, and by summarising our immediateunderstandings of patients’ accounts during interviews.Chronic pain is a term with a wide range of conditions,

and the experience of living with it is shaped by healthand living conditions in general. The subjective, dynamicnature of the pain experience causes a range of differentsituations facing the women who participated in the study.Despite this diversity, commonalities in experiences of theconsequences of pain on quality of life and in coping strat-egies undertaken to manage pain emerged during ana-lysis. We have sought to include both these sharedexperiences while acknowledging the particular situationsand perceptions of individual women when relevant. Thestudy population makes up a diversified group of patientswith complex psychosocial and medical challenges, andmight therefore constitute a particularly vulnerable popu-lation. Furthermore, this study consists of a relatively smallsample size, including 13 in-depth interviews covering adiverse group of immigrants, and the heterogeneity mustbe taken into account when reviewing the findings inorder to avoid broad generalisations.Nevertheless, findings from the present study can be

used to guide further research efforts. In order tounderstand the needs of populations with diverse ethnicand social backgrounds and to detect developments orchanges in the experiences of pain, longitudinal qualita-tive studies among larger groups of immigrant womenare needed. Future research among more homogeneousstudy populations, for example, patients sharing type

and severity of disease, marriage status and country ofbirth or self-identified ethnicity, would be useful, as suchstudies might enable a deeper understanding of theinfluences of disease trajectory, social network and cul-tural factors on the experiences of living with chronicpain. Also, there is a need for studies exploring theexperiences and coping strategies among migrant popu-lations with less complex medical and psychosocialcharacteristics. Inclusion of perspectives of relatives andhealthcare providers will further add to a more contex-tualised understanding of pain and coping. The similar-ities with populations of majorities points to the needfor future comparative study, exploring similarities ordifferences in and between populations with diverseethnic and social backgrounds. Having this insightwould help to identify the needs of care, and to under-stand how to adjust care to meet the specific needsamong immigrant women living with chronic pain,thereby improving healthcare.

IMPLICATIONS FOR PRACTICEThe results from this in-depth qualitative study add tothe existing, mostly quantitative, literature by emphasis-ing the extensive and adverse effect of chronic pain onall aspects of the women’s lives. It further elucidates howtheir experiences of living with chronic pain were influ-enced by a range of individual, social and environmentalfactors, implying that healthcare professionals shouldtake a holistic approach when supporting chronic painpatients.To reduce the physical disabilities and the extensive

consequences connected to social relations, physical andphysiological health, early detection and examinationare warranted. The women particularly grieved for theirprofoundly altered parenting role and the childrenappeared to bear a heavy responsibility. Enabling thewomen to manage and facilitate the well-being of thefamily despite the pain might, to some extent, alleviatethe social and physiological consequences of pain.Consequently, healthcare professionals should take thefamily context into account, not only focusing on theindividual, but facilitating a family-centred approach,also supporting children and other close familymembers. Finally, the restricted possibilities for regain-ing a sense of control over the pain and over their situ-ation point to the importance of clinical encounters toentail clarification related to prognosis and treatments,and what to expect for future pain, as well as to avoidmisunderstandings and stigmatisation.

Acknowledgements The authors would like to thank the participants forsharing their stories, and the staff members at SIM, and at the physio andoccupational unit, who helped with the recruitment. Furthermore, we wouldlike to thank Lisa Duus for her contribution to the study.

Contributors CM and MN conceived the study and all the authors developedthe design. CM collected the data. The paper was drafted by CM, and revisedand edited by all the authors. CM and MN are the guarantors.

Competing interests None declared.

Michaëlis C, et al. BMJ Open 2015;5:e008075. doi:10.1136/bmjopen-2015-008075 9

Open Access

on October 31, 2020 by guest. P

rotected by copyright.http://bm

jopen.bmj.com

/B

MJ O

pen: first published as 10.1136/bmjopen-2015-008075 on 10 July 2015. D

ownloaded from

Funding Publication fees were provided by Section of Immigrant Medicine,Department of Infectious Diseases, Copenhagen University Hospital, Hvidovre,Denmark.

Ethics approval The study was approved by the Danish Data ProtectionAgency, I-Suite-nr 03233 and ID-nr AHH-2014-030.

Provenance and peer review Not commissioned; externally peer reviewed.

Data sharing statement No additional data are available.

Open Access This is an Open Access article distributed in accordance withthe Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license,which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, providedthe original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

REFERENCES1. Merskey H, Bond MR, Bonica JJ, et al. Classification of chronic pain:

descriptions of chronic pain syndromes and definitions of pain terms.Http://Www.Iasp-Pain.Org/Files/Content/Contentfolders/Publications2/Freebooks/Classification-Of-Chronic-Pain.Pdf (accessed 5 Nov 2014).

2. Harker J, Reid KJ, Bekkering GE, et al. Epidemiology of chronic painin Denmark and Sweden. Pain Res Treat 2012;2012:1–30.

3. Kurita GP, Sjøgren P, Juel K, et al. The burden of chronic pain:a cross-sectional survey focussing on diseases, immigration, andopioid use. Pain 2012;153:2332–8.

4. Sjøgren P, Ekholm O, Peuckmann V, et al. Epidemiology of chronicpain in Denmark: an update. Eur J Pain 2009;13:287–92.

5. Breivik H, Collett B, Ventafridda V, et al. Survey of chronic pain inEurope: prevalence, impact on daily life, and treatment. Eur J Pain2006;10:287–333.

6. West C, Usher K, Foster K, et al. Chronic pain and the family: theexperience of the partners of people living with chronic pain. J ClinNurs 2012;21:3352–60.

7. O’brien T, Breivik H. The impact of chronic pain—European patients’perspective over 12 months. Scand J Pain 2011;3:23–9.

8. Mullersdorf M, Zander V, Eriksson H. The magnitude of reciprocity inchronic pain management: experiences of dispersed ethnicpopulations of Muslim women. Scand J Caring Sci 2011;25:637–45.

9. Jensen NH. Den Kroniske Smertepatient. In: Jensen TS, Dahl JB,Arendt-Nielsen L, eds. Smerter—Baggrund, Evidens, Behandling.3rd edn. København: FADL’s Forlag, 2013:359–72.

10. Bergman S. Psychosocial aspects of chronic widespread pain andfibromyalgia. Disabil Rehabil 2005;27:675–83.

11. Sleptsova M, WoSsmer B, Grossman P, et al. Culturally sensitive grouptherapy for Turkish patients suffering from chronic pain: a randomisedcontrolled intervention trial. Swiss Med Wkly 2013;143:w13875.

12. Taloyan M, Löfvander M. Depression and gender differences amongyounger immigrant patients on sick leave due to chronic back pain:a primary care study. Prim Health Care Res Dev 2014;15:5–14.

13. Zander V, MuLlersdorf M, Christensson K, et al. Struggling for senseof control: everyday life with chronic pain for women of the Iraqidiaspora in Sweden. Scand J Public Health 2013;41:799–807.

14. Meadows LM, Thurston WE, Melton C. Immigrant women’s health.Soc Sci Med 2001;52:1451–8.

15. Bhopal RS. Migration, ethnicity, race, and health in multiculturalsocieties. Oxford University Press, 2007.

16. Jones LE, O’shaughnessy DFP. The pain and movement reasoningmodel: introduction to a simple tool for integrated pain assessment.Man Ther 2014;19:270–6.

17. Cano A, Mayo A, Ventimiglia M. Coping, pain severity, interference,and disability: the potential mediating and moderating roles of raceand education. J Pain 2006;7:459–68.

18. Löfvander MB, Furhoff AK. Pain behaviour in young immigrantshaving chronic pain: an exploratory study in primary care. Eur J Pain2002;6:123–32.

19. Norredam M. Migrants’ access to healthcare. Dan Med J 2011;58:B4339.

20. Boateng L, Nicolaou M, Dijkshoorn H, et al. An exploration of theenablers and barriers in access to the Dutch healthcare systemamong Ghanaians in Amsterdam. BMC Health Serv Res2012;12:75.

21. Jensen NK, Nielsen SS, Krasnik A. Expert opinion on “bestpractices” in the delivery of health care services to immigrants inDenmark. Dan Med J 2010;57:A4170.

22. Malterud K. Systematic text condensation: a strategy for qualitativeanalysis. Scand J Public Health 2012;40:795–805.

23. Klintefelt T, Laursen L, Larsen D, et al. Indvandrere I Danmark 2013.Danmarks Statistik, 2013.

24. Diderichsen F, Andersen I, Manuel C. Ulighed I Sundhed—ÅrsagerOg Indsatser. København: Sundhedsstyrelsen, 2011.

25. Newton BJ, Southall JL, Raphael JH, et al. A narrative review of theimpact of disbelief in chronic pain. Pain Manag Nurs2013;14:161–71.

26. Glenton C. Chronic back pain sufferers—striving for the sick role.Soc Sci Med 2003;57:2243–52.

27. Werner A, Isaksen LW, Malterud K. ‘I am not the kind of woman whocomplains of everything’: illness stories on self and shame in womenwith chronic pain. Soc Sci Med 2004;59:1035–45.

28. Ernst G. The myth of the ‘Mediterranean syndrome’: do immigrantsfeel different pain? Ethn Health 2000;5:121–6.

29. Kristiansen M, Tjørnhøj-Thomsen T, Krasnik A. “Sometimes you justhave to walk alone”—meanings of emotional support amongDanish-born and migrant cancer patients. J Psychosoc Oncol2010;28:699–717.

30. Taylor B, Carswell K, Williams AC. The interaction of persistent painand post-traumatic re-experiencing: a qualitative study in torturesurvivors. J Pain Symptom Manage 2013;46:546–55.

31. Nettleton S. Chronic illness and disabilities the sociology of healthand illness. 2nd edn. Polity, 2006:71–103.

32. Charmaz K. Loss of self: a fundamental form of suffering in thechronically ill. Sociol Health Illn 1983;5:168–95.

33. Kristiansen M, Irshad T, Worth A, et al. The practice of hope:a longitudinal, multi-perspective qualitative study among South AsianSikhs and Muslims with life-limiting illness in Scotland. Ethn Health2013;19:1–19.

34. Jackson J. Chronic pain and the tension between the body assubject and object. In: Csordas TJ, ed. Embodiment andexperience: the existential ground of culture and self. CambridgeUniversity Press, 1994:201–227.

10 Michaëlis C, et al. BMJ Open 2015;5:e008075. doi:10.1136/bmjopen-2015-008075

Open Access

on October 31, 2020 by guest. P

rotected by copyright.http://bm

jopen.bmj.com

/B

MJ O

pen: first published as 10.1136/bmjopen-2015-008075 on 10 July 2015. D

ownloaded from