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A recurring rollercoaster ride: a qualitative study of the emotional experiences of parents of children… Gómez-Ramírez, Oralia; Gibbon, Michele; Berard, Roberta; Jurencak, Roman; Green, Jayne; Tucker, Lori; Shiff, Natalie; Guzman, Jaime Mar 9, 2016

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RESEARCH ARTICLE Open AccessA recurring rollercoaster ride: a qualitativestudy of the emotional experiences ofparents of children with juvenile idiopathicarthritisOralia Gómez-Ramírez1, Michele Gibbon2, Roberta Berard3, Roman Jurencak4, Jayne Green5, Lori Tucker6,Natalie Shiff7 and Jaime Guzman6*AbstractBackground: Despite the wealth of clinical research carried out in children with juvenile idiopathic arthritis (JIA),little is known about the emotional experiences of their parents. This article describes the predominant emotionalexperiences reported by parents of children with JIA in two Canadian cities.Methods: Research participants included 15 experienced parents and 8 novice parents (<6 months since children’sJIA diagnosis). Their children were 2 to 16 years old with various JIA categories. A qualitative dataset includingaudio recordings and verbatim transcripts of three focus groups, and written reports of 59 reciprocal interviews(parents interviewing each other) were examined by a multidisciplinary research team following a four-stepqualitative analytical process.Results: Parents of children with JIA experienced recurrent mixed negative and positive emotions that varied overtime. Between disease onset and diagnosis, mounting anxiety, fear and confusion were the predominant emotions.Shortly after diagnosis there were shock, disbelief, and fear, with a sense of having being blindsided by the disease.At times of disease quiescence there was hope and gratitude, but also fatigue and frustration with ongoingtreatment and fear of flares. During periods of increasing or ongoing symptoms there was admiration andsympathy for the courageous way children coped with JIA, as well as sorrow and frustration for ongoing pain andlimitations. There were at times, frustration and indignation with peers and teachers unable to understand thechild’s fluctuations in physical activity and schoolwork. Throughout the disease, parents felt an underlying anxietyand powerlessness.Conclusions: Parents of children with JIA described complex emotional journeys akin to the recurring ups anddowns of rollercoaster rides, instead of ordered emotional phases ending in resolution. This has implications forhealthcare providers who need to be aware of the complexity of these emotional journeys to support parentsmore effectively, thereby helping improve patient outcomes.Keywords: Juvenile arthritis, Emotions, Parents, Canada, Qualitative research, Secondary analysis* Correspondence: jguzman@cw.bc.ca6Department of Pediatrics, University of British Columbia and BritishColumbia Children’s Hospital, 4480 Oak Street, Vancouver, British ColumbiaV6H 3V4, CanadaFull list of author information is available at the end of the article© 2016 Gómez-Ramírez et al. Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, andreproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link tothe Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.Gómez-Ramírez et al. Pediatric Rheumatology  (2016) 14:13 DOI 10.1186/s12969-016-0073-9BackgroundThe diagnosis of a chronic illness in a child is one ofthe most emotionally difficult situations a parent mayface [1, 2]. Despite the wealth of clinical research car-ried out in children with JIA [3–7], little is knownabout the emotional experiences of their parents. Pub-lished research reports strong correlations between par-ental experiences and perceptions and juvenile arthritisoutcomes [8, 9]. Research in other childhood conditionssupports a connection between parents’ illness-relatedbeliefs and the fostering or hampering of children’shealth practices [10–12]. A link between parental emo-tional experiences and clinical outcomes has been sug-gested in research in children with anorexia, cleftpalate, autism, and cancer [13–16]. Since parental experi-ences in a number of chronic health conditions seem tobe connected to disease outcomes, understanding parentalexperiences in JIA may be illuminating for care providersinterested in optimizing clinical outcomes for childrenwith this disease, and ultimately all rheumatic diseases.During a previous qualitative study we conducted toidentify clinical features of the disease that were mostimportant for patients, parents and clinicians in thecourse of JIA [17], we were confronted with parents’ in-tense emotional experiences about the disease. Qualita-tive research emphasizes being willing to listen and payattention to what research participants identify as im-portant, even when it departs from the original researchaims [18]. Upon consideration of these parental emo-tions, we felt that a focused description of these emo-tional experiences was owed to study participants whowanted their stories heard; and that such descriptionwould be instructive to health care providers caring forchildren with JIA and their families. We thus decided topursue a secondary analysis of the qualitative data setcollected in our previous study to address two new re-search questions: (1) What are the predominant emo-tional experiences of parents caring for a child with JIA?(2) How are these parental emotions associated with dif-ferent phases or events during the disease?McNeill has described the emotional challenges fathersof children with JIA face in dealing with their child’s pain,variability in the severity of the condition, adherence tothe treatment regime, and uncertain prognosis [19]. Thepresent study adds to McNeill’s findings by showing thatthe emotional experiences of mothers and fathers of chil-dren with JIA vary throughout the course of the illness incomplex emotional journeys akin to the ups and downs ofrollercoaster rides, related to the social and medical chal-lenges of managing a child with the disease.MethodsThis study presents secondary analysis of an existingqualitative dataset [20, 21]. Our original project soughtto prioritize clinical features of the disease course of JIAaccording to patients, parents and clinicians through sixstudy sessions [17]. Here we report on the three studysessions that included parents of children with JIA. Eachof these three sessions included a focus group and aseries of reciprocal interviews (participants intervieweach other) [22]. The sessions were carried out in twoCanadian cities between July and November of 2012with participation of 23 parents. The first study sessionwas held in English with 10 experienced parents; thesecond session was held in French with 5 experiencedparents; and the third session was held in English with 8novice parents (<6 months since diagnosis). The datasetcomprised audio-recordings and verbatim transcripts ofthe three focus groups, as well as structured hand-written reports provided by the parents after 59 recipro-cal interviews.Recruitment occurred during routine clinic visits intwo Canadian academic pediatric hospitals. Fathers andmothers were approached for participation, and coupleswere welcomed to participate. We purposefully includedparents of children with different JIA categories, variouslengths of experience in dealing with the disease, andEnglish or French cultural/linguistic backgrounds (Canada’sofficial languages). Our goal was to have representa-tion of a wide range of disease experiences, but wedid not aim for proportional representation of thegeneral population of children with JIA. Our originaldesign called for recruitment of experienced parents(>2 years since diagnosis) and novice parents(<6 months since diagnosis), but when a parent with9 months of experience volunteered to participate inthe study s/he was included with the experiencedgroup. During analysis for this study (see below),other background characteristics such as the genderof the parent, age of the child and previous familyexperience with arthritis were considered for theirrelation to expressed emotions.Focus groups started with a round of introductionswhere each parent shared the salient aspects of theirexperience regarding their child’s JIA, before movingonto prioritization of features of the disease course.Each parent participated in 2-to-3 reciprocal interviews(as time allowed), taking the dual roles of intervieweeand interviewer. We believe this opportunity for one-on-one exchanges with other parents helped create anenvironment more conducive to the expression of emo-tions, and that the written reports provided a chancefor reflection and expression of what they had heard intheir own words [22, 23].We obtained ethics approval for both the primary andsecondary studies from the research ethics boards atBritish Columbia Children’s Hospital and the Children’sHospital of Eastern Ontario.Gómez-Ramírez et al. Pediatric Rheumatology  (2016) 14:13 Page 2 of 11AnalysisWe followed a four step qualitative analytical process[24, 25]. Analysis was done using word processors andspreadsheets, instead of software specially designed forqualitative research. Since the expression of emotions ishighly dependent on the context, and emotions are oftenmanifested by non-text cues such as pauses, changes invoice intonation, body language, crying, laughing, etc.,we listened to the original audiotapes, and when neces-sary, relied on the accounts of people who were presentduring the original study sessions. Details of the foursteps are described below.First, OGR listened to the original focus group audio-recordings several times. She added to the existing ver-batim transcripts extra annotations that could informcoding of emotions, such as pauses, utterances, changesin voice intonation and speed of speech, crying, laughsand background noises [26]. She had not been presentduring the original focus groups but when in doubt sheconsulted with MG and LT, who were present. Writtenreports of reciprocal interviews did not need furtherpreparation as they had already been entered in spread-sheet files.Second, two researchers (OGR, MG) carried out initialcoding of emotions assisted by a bilingual list of 69 po-tential emotion labels derived from pertinent literature.The list was based primarily on the work of Plutchik[27] and Kübler-Ross [28]. A directed content analysisapproach [29], was used to code every instance of emo-tional experience present in the datasets. Four re-searchers (OGR, MG, JGr, JGu) held weekly conferencecalls to provide feedback during coding, including re-finements and additions to the initial list of emotionlabels.Third, two investigators (RB, RJ) carried out codingverification through independent assessment of the ini-tial coded files. This internal review helped confirm thatall emotional instances had been flagged and that theassigned emotion labels were accurate [30]. When indoubt about an emotion label, we based our final codingdecision on audio cues, the reports prepared by the pro-fessional facilitators of the study sessions, and the inter-pretations of those in our research team (MG, LT) whohad been present during the sessions.Fourth, all investigators in this study examined andreflected on the coded files individually, and then dis-cussed them collectively during conference calls. Oneconference call was devoted to each of the three ses-sions. During this reflection and discussion we askedwhat emotions were predominant at different stages ofthe disease, who or what were those emotions directedat, and how the background of participants shaped theiremotional experiences. Background was broadly inter-preted to include gender, language, length of experiencewith the disease, child’s JIA category, and previous ex-perience with another rheumatic disease.ResultsTable 1 shows the characteristics of the 23 study partici-pants. Participants represented a wide range of parentallength of experience with the disease: 15 were experi-enced parents with 9 months to 14 years of experiencecaring for a child with JIA, and 8 were novice parentswithin 6 months of the diagnosis of JIA. Their childrenwere 2 to 16 years of age and had a variety of JIA cat-egories and disease severity.Period leading up to diagnosisParents recounted the period between symptom onsetand diagnosis as a time of mounting anxiety, fear, andconfusion. Similar emotions were reported by parentsregardless of their specific circumstances and length offamiliarity or experience with JIA. Many parents saidthey had initially thought their children merely had aninjury. The intensity of their mixed feelings of anxiety,fear, and confusion was shaped by the relative ease ordifficulty in arriving at a diagnosis. For some parents,this was also a time punctuated by frustration with thehealth care system as families experienced prolongedwaits to be seen by a paediatric rheumatologist with en-suing delay in diagnosis. Other parents expressed indig-nation about having being ignored, belittled, or evenTable 1 Characteristics of study participantsParticipants CharacteristicsExperiencedParents15 parents (8 mothers, 7 fathers, including 3 couples).Their 12 children (9 girls, 3 boys) were 4 to 15 yearsold.Children had been diagnosed with JIA 9 monthsto 14 years prior to the session.8 children had oligoarthritis, and 1 each hadenthesitis-related arthritis, psoriatic arthritis,polyarthritis, or undifferentiated arthritis.One parent had JIA as a child, another had psoriasis,and one more had ankylosing spondylitis. A parent’sspouse (not in attendance in the session) had JIAas a child requiring two hip replacements.Novice Parents 8 parents (5 mothers, 3 fathers, including one couple).Their 7 children (4 girls, 3 boys) were 2 to 16 years old.Children had been diagnosed with JIA 2 to 6 monthsprior to the session.2 children had oligoarthritis, 2 had undifferentiatedarthritis, and 1 each had systemic arthritis,enthesitis-related arthritis, or psoriatic arthritis.One parent had another child with Crohn’s-relatedarthritis. A parent’s spouse (not in attendance in thesession) dealt with osteoarthritis and two kneereplacement surgeries.JIA juvenile idiopathic arthritisGómez-Ramírez et al. Pediatric Rheumatology  (2016) 14:13 Page 3 of 11suspected of child abuse due to their child’s unexplainedjoint swelling. This was perceived as further delaying re-ferral to the specialist and arrival at the diagnosis. Table 2shows illustrative quotes from parents.At and shortly after diagnosisParents recalled the time of diagnosis as a shattering ex-perience with strong feelings of shock, disbelief, and fear.Among novice parents these feelings were very strong,but these feelings were also vividly recalled by parentseven more than a decade after diagnosis. Some parentsstrongly associated arthritis with the elderly, adding totheir disbelief about their child’s diagnosis. Despite thepotential of reaching longstanding remission in sometypes of JIA, parents expressed deep fears regarding theincurable or chronic nature of the disease, which wascompounded by their limited knowledge about JIA atthe time and the uncertainty about what to expect. Attimes, the fear was partially fuelled by their perceptionsof arthritic physical deformity. They expressed fear andsorrow, but also tried to be hopeful about how theirlives and children’s futures would be affected by thedisease.Additionally, experienced parents often felt blindsidedby the diagnosis of JIA, especially those who had previ-ous personal or family history with rheumatic diseases.Their previous experience with arthritis did very little tohelp them suspect and accept this diagnosis in theirchild.Parents expressed varying degrees of denial as theyattempted to come to terms with the diagnosis. A fewnovice parents still doubted the diagnosis even thoughthey had agreed to participate in a study session for par-ents of children with JIA. Both novice and experiencedparents humorously recounted some illogical things theydid or beliefs they had at the time, and blamed these ontheir denial.During times of disease controlLater in the disease course, particularly at times of gooddisease control, parents felt less overwhelmed and betterequipped to process information regarding their child’sillness. The news that effective treatments were availablecame as a great relief. At times of relative disease quies-cence, parents predominantly felt gratitude, sometimestowards health care providers, as well as hope that ad-ministered treatments would continue to be effective.These periods, however, were sometimes mixed withfatigue and frustration about the continuing need fortreatment, as well as with anxiety regarding potentialtreatment side-effects. Parents were often fearful aboutthe possibility of flares.At times of increasing or ongoing symptomsDuring times of increasing or ongoing symptoms, manyparents experienced a mix of admiration, sympathy,frustration, and sorrow. Parents felt admiration andsympathy towards their children for the way theycourageously handled the disease and their efforts tocarry on with their lives. Parents, however, simultan-eously experienced sorrow and frustration about thedisease making their child sit out of regular daily ac-tivities and feel pain.During times of ongoing uncontrolled symptoms,some parents experienced frustration and indignationtowards school teachers, their child’s peers, or familymembers, who doubted the veracity or extent of theirchild’s complaints and care needs. These feelings weresometimes also experienced towards individuals who didnot seem to understand the demands of caring for achronically-ill child, and the effects this had on parents’careers. Parents were also frustrated about the need forincreasing or changing treatments, with new potentialside-effects.Throughout the course of the illnessSome emotions were not predominantly associated withspecific disease periods, but rather formed a pervasivebackdrop to the parental experience of caring for a childwith JIA. These included an underlying anxiety and asense of powerlessness, related to the long-term burdenof managing an uncertain and time-consuming disease.Parents expressed a sense of strain through repeatedphrases like: “lifelong,” “rest of your life,” “long road,”“long process,” “tiring,” “rollercoaster,” “ups and downs,”“life changing,” or “time consuming.” There was a sensethat their lives and those of their children had been for-ever altered. On the positive side, parents expresseddeep solidarity and companionship with their children.This was indicated by their speaking of their children’sexperiences in plural expressions like: “when we werefirst diagnosed,” “we had a flare once,” or “that’s kind ofhow our diagnosis came about.”A recurring rollercoaster rideThe overarching metaphor of a rollercoaster ride wasmentioned by parents themselves on several occasions(see Fig. 1). This metaphor and the time periods de-scribed in this study emerged from the data as pertinentto synthesize the parents’ affective journeys. In otherwords, parents’ affective journeys resembled rollercoas-ter rides made of recurring, intensely felt emotional upsand downs, shaped by the uncertainty, variability, anddisabilities associated with JIA.On the whole, the emotional fluctuations, or ups anddowns of parents’ rollercoaster rides, did not have aclear final resolution and were constantly changing evenGómez-Ramírez et al. Pediatric Rheumatology  (2016) 14:13 Page 4 of 11Table 2 Quotes from parents that illustrate the emotions experienced at different stages of the diseaseDisease stage & predominantemotionsIllustrative quotesPeriod Leading Up to Diagnosisconfusion, anxietyAnd now all of a sudden he started complaining about his hip, and you know, he could have been… He’s a boy, soI was hoping that it was just that. But he had some inflammation, and he complained, so I was concerned. (EF)frustrationIn my case, she [daughter] had a streptococcal throat infection, which was treated with antibiotics, and then itstarted to swell, and then she started… She started limping. I went to the doctor two more times, and I said, “Listen,something’s not right. When she wakes up, when I go to get her from her crib, it’s still swollen, and her knee is bent,and she can’t straighten her leg for a good two hours.” … I wasn’t getting any response from my family doctor…[so] I went to [hospital name] and insisted on an appointment with a rheumatologist, and that she [daughter] beseen within three days. (EM)indignation, fearIt’s rather interesting, right from the get go: “You’re going to have to bring the child into emergency.” Okay…I flewin from [another city] and met my wife. Off to the hospital we went… And this was after my wife was interrogatedthe evening before, wondering if she was beating the child or what the case may be, because her ankle was justswollen out like a… like a baseball. And for a two-year-old child that’s quite traumatic, quite frankly. (EF)Upon and Shortly After Diagnosisshock, disbelief, fearNo, no signs, no instances. It’s funny, I’m getting emotional, the first time talking about it. (broken voice, brief pause)So we didn’t have… We didn’t actually get any documentation or introduction to the fact that it might be juvenilearthritis. We thought it was an injury. So we had done peripheral research, (broken voice) but didn’t really know…Sorry, I need to back away for a second. (silence) (EF)shock, disbelief, surpriseJust (brief pause) shocked I guess when I heard that she had arthritis, simply because I’d never heard of a child witharthritis before… And then coming here and realizing that it’s more common than people are [aware of] or than it’sknown to be to people, I guess. (NF)fear, sorrow“Oh my God, what’s going to happen to our life now? This is crazy.” Everything just sort of falls apart and you focuson that child, because they’re really sick and it’s scary. (EM)fear, hope[My wife] met a woman who was 40 years old who had the disease since she was six. … that person’s disease hadprogressed actually quite a bit more than what we would ever hope that it progresses in our children, because ofthe lack of effective treatments. [Alluded wife exclaims: “Yeah. Huge.”], and the woman had a lot of crippling sideeffects at age 40. [Alluded wife confirms: “Oh yeah, unbelievable.”] However… Please finish the story. (NF)[Alludedwife continues:] Well, [this woman] she’s under, yeah, a lot of deformities, she’s going through a lot of surgeries –shoulder, wrist, finger, knees, ankles. It’s just, it’s an ongoing life… [of] treatment for her. Treatment for her life isgoing to be ongoing. …So I was so upset, I got my sister to phone the nurse here, to [hospital name], to find outthe extent of what this looks like and where this could go, if this is a possibility for our children. And she said withinher 20 years of working here and being the nurse on staff in this department, she has not seen… like maybe onecase, maybe two, that severe, that severe [cases]. It’s very, very rare right now. (NM)regret, shock, fearWe thought it was an ankle injury, and we did months and months with orthotics and everything else. And we havearthritis that runs in our extended family, and we never even thought of that [nervous laughs]. Oh, I’m gettingemotional, but anyway, that’s exactly… So we weren’t prepared thinking it was arthritis. (EM)But now that I look back, I should have put two and two together because my husband does have arthritis. Notsince he was a child, but my husband has had two hip replacements and he is in his 30s. (EM)No, I was just going to say, when my son started showing signs, I was praying, you know, “No, please no.” I knew.(EF)denialSo we’re still not… We don’t have a genetic marker, so we still don’t have a proper diagnosis exactly, but he’s beentold at least that it’s just pain management at the moment, he’s not damaging his joints. (NM)I’m still in denial about it though quite a bit… I mean I’m here and I want to be here for the knowledge for mydaughter and for ourselves to apply to my daughter, but I am in very deep denial about her having arthritis. (NF)Gómez-Ramírez et al. Pediatric Rheumatology  (2016) 14:13 Page 5 of 11Table 2 Quotes from parents that illustrate the emotions experienced at different stages of the disease (Continued)anxiety, fearEven my wife asked, “Well, like what if we come here this day and then like a week later, she has symptoms butwe’re not coming back to you for two months and the damage [due to unnoticed inflammation of the eyes] isalready done?” So basically [this] is what you do, get in a dark room or whatever and get a flashlight and just aslong as their pupils dilate like they should… (laughs) [Another father adds: “It’s the proper medical way to do it.”]Yeah. And that I can take care of it in the basement with a flashlight. (everyone laughs) But that’s just if you’re reallyworried about it in the three months or whatever. I’ll trust the doctor for that. I’m just kidding. (laughs) It feeds intomy denial though. “Yeah, you’re okay.” (everyone laughs) “Forget about it. I’m not worried about it.” (NF)During Times of Disease Controlfear, hopeYeah. It’s a scary diagnosis to have, but there is hope with the treatment. (NF)hope, gratitude, relief[Daughter] got diagnosed when she was two. She’s almost seven… and, I don’t know, she… It works for her. Themethotrexate is the best thing that came along for her, out of everything we have tried, and she’s been on it forthree years … (EM)fear, anxiety, frustration, fatigueWell, it’s so overwhelming. It’s so overwhelming… You know, their immune suppressants are serious drugs, youknow? What’s going to happen to my child if I put her on methotrexate for seven years? (change in voiceintonation) What’s going to happen? You know, what’s the future going to look like for her? So it can havedevastating consequences, the medications. And plus, the eye drops sometimes… We were on eye drops for sevenyears, every single day, sometimes every hour. (change in voice intonation) That’s a lot to take on. (EM)anxiety, fearI always worry about her being around sick people. She’s immune suppressed. I’m like, “Okay, has anyone in yourhouse had a cold? Do you have ear infections?” Anything. I don’t want my daughter around sick people. When shegoes to ballet and I see a kid, they’re coughing, I’m like, “Really? You’re sending your kid here sick? Thanks.” So I getreally upset and emotionally charged when I see sick people. “You should be home. You’re going to make my kidsick. I could end up in emerg[encies], in the hospital for a month. It’s happened. (EM)At Times of Increasing or Ongoing Symptomssorrow, admiration, sympathyIt’s just tough for these kids. You know, it’s like he says like, “Why me?” you know? (crying) So it’s just… (gasp) Ah! Itis what it is, but you know in some ways (gasp) – it’s interesting – it’s made him a stronger person. He’s really takingresponsibility for his own health. And you know it’s early for a kid to do that. Like he’s growing up fast. And he’s…He’s meditating now. He’s probably the most popular kid in the school because he genuinely connects with peoplein a meaningful way. So he’s… (brief pause) It’s probably tougher on me right now than it is on him. (gasp) (NF)sorrow, sympathyShe goes to bed on her own, you know, I don’t have to ask her; she just goes to the couch. …. Yesterday, we wentboating. We were inner tubing, and she said, “Okay, I’ve had enough,” then she went to sleep in the boat. Or, in themiddle of the afternoon, “Mommy, I’m going to go lie down.” But for a three or four-year-old to say, “Mommy, I’mgoing to go lie down,” to me, that’s a sign. You know, I… It’s just not normal for a child, three or four years old, ortwo, to put herself down for a nap. That’s a [sign], to me, that’s a sign that, hmmm… She doesn’t say that anything’swrong, but it’s not normal for a child. (sigh) (EM)frustration, indignationBecause one time at the nursery, my daughter was having a flare-up, and they called me urgently, “Come pick upyour daughter, she’s being a princess, she’s throwing a… temper tantrum.” Seriously, my daughter is throwing atemper tantrum? That’s not like her. “Okay, fine.” She got home, she went to bed. That’s not normal. I went to [hospital’sname], and tests confirmed that she was having a flare-up. “Keep her at home; we’ll provide treatment.” And when Ispoke with the director again, she told me, “No, I mean, that may have been part of it, but she was also having a bit of aprincess tantrum.” Okay, fine, “If that’s your mentality, I’m certainly not going to argue about it with you.” I’m not goingto argue; it’s not worth it. When people close the door, it’s just not worth it anymore. It doesn’t really matter what youhave to say; their minds are made up and that’s that. (EF)Human beings are like that. We see someone who has no hair because of chemo treatments, and we’resympathetic. But you know, I have an aunt with fibromyalgia, and that’s what she said too, at work. She stoppedworking, but chronic diseases, where there’s nothing [visible]. It’s like having an extreme backache, … and you tellyour partner, “I can’t do it anymore, my back!” But it’s invisible. It’s the same thing with our children, without[outwardly visible illness signs] (EM)frustration, sorrowIt’s huge. It affects my career. I have to take so much time off. Or they’re like, “Really? At [hospital name]?” … Wewere living here for six weeks one time. I’m like, I can’t go to work. There’s nothing I can do. Nobody reallyGómez-Ramírez et al. Pediatric Rheumatology  (2016) 14:13 Page 6 of 11years after the diagnosis. While novice parents reportedintense fear and disbelief early on, experienced parentsreported that they continued to feel those emotions atother points during the disease course. Likewise, experi-enced parents reported mixed feelings of sorrow and ad-miration for their children, as did novice parents.Overall, the emotional experiences of novice and experi-enced parents were similar. The primary difference wasthat experienced parents had progressed further along inthe trajectory of the disease, being exposed to a widerarray of disease-related issues.Lastly, we did not find clear differences in the emo-tional experiences of parents according to their owngender or the gender of their child. While we carriedout sessions in English and French, similar emotionaljourneys were related in both languages. There were nomajor differences between the emotional experiences ofparents of children who received medical care in onecity or the other.DiscussionIn this article we analyzed focus group audio-recordings,verbatim transcripts, and reciprocal interview reportsfrom 23 parents of Canadian children with JIA. Wefound that mothers and fathers experienced complexmixed emotions that made the course of their children’sdisease feel like a recurring emotional rollercoaster ride:a long-term, persisting affective journey of ups anddowns associated with the unpredictable nature of thedisease and the episodic physical and social disabilitiesassociated with JIA. Emotions were not simple and se-quential, but rather complex and overlapping. Unlikeexisting models suggesting discrete emotional stages andclear-cut emotional resolution reached once and for allTable 2 Quotes from parents that illustrate the emotions experienced at different stages of the disease (Continued)understands [at work]. You know, your boss, your peers, they’re sort of like, “Okay.” But really going through it, it’sterrible. (EM)FrustrationBecause I also had something to do [to convince child of taking medication]. We started with methotrexate in pillform, until her body realized it, and then just drinking her medication made her vomit. So we had to change toinjections. But she’s had blood taken so often that she’s developed a phobia of needles. (EF)Throughout the Course of the Illnesspowerlessness, anxietyYou don’t know what’s going to happen. It’s sort of living through the course of the disease that you sort of findyour path and get comfortable within the system and all the health care providers that you deal with. I think overtime, I’ve become more comfortable. (speed emphasis) Not really, because… (laughs) You can digest it, you researchit, you read about it. You have all the information, but it’s still a rollercoaster ride for like eight years now. (EM)JIA juvenile idiopathic arthritis, EM experienced mother, EF experienced father, NM novice mother, NF novice fatherFig. 1 The affective journeys of parents of children with JIA may be described as recurring rollercoaster rides made of ups and downs with mixednegative and positive emotionsGómez-Ramírez et al. Pediatric Rheumatology  (2016) 14:13 Page 7 of 11[28], the parents of children with JIA in our study expe-rienced sinuous emotional journeys of repeated ups anddowns throughout their children’s disease..Qualitative studies on parental emotional experienceshave focused primarily on childhood cancer [16, 31, 32],with some studies devoted to asthma [33], cystic fibrosis[34], diabetes [35],congenital heart disease [36], anorexia[13], cleft palate [14], or autism [15]. Clinical quantitativeresearch, mostly in the form of surveys, has reportedthe experiences [37], views [38], and preferences [39]of parents of children affected with JIA. However,little qualitative research has addressed their emo-tional experiences. Two significant exceptions arethe studies of McNeill [19, 40] and Pelaez-Ballestasand colleagues [41].McNeill explored the emotional experiences and gen-der identity constructions of fathers of children with JIAin Toronto, Canada. He found that despite prevailing as-sumptions of fathers’ lack of involvement in diseasemanagement, they were deeply affected emotionally bytheir child’s disease, and that JIA became a catalyst formeaningful, loving, and caring involvement with theirchild. Our findings confirm that fathers, and we addmothers, are profoundly emotionally affected by theirchild’s disease. McNeill found that fathers experiencedsome positive emotions, including maintaining an opti-mistic outlook of the disease, and being grateful for theopportunity that JIA had given them to be closer to theirchildren. In our study, we also found positive emotions,including being grateful that effective JIA treatmentsexisted, trusting they would work well on their child andadmiration towards their child’s coping with the disease.Pelaez-Ballestas and co-authors interviewed parentsof children with JIA in Mexico City, Mexico. Similarlyto our findings, they found that parents expressedstrong mixed emotions, including concern about phys-ical disabilities, inability to accept the diagnosis, guiltand despair, belittlement from doctors and/or spouses,and lingering denial. Pelaez-Ballestas et al. proposedthe metaphor of a parental pilgrimage (emerging fromtheir data) to convey parents’ descriptions of long,never-ending trajectories of intense suffering that re-sembled religious journeys, as they sought to come toterms with their children’s disease and get proper med-ical care. The notion of a pilgrimage has similaritiesand differences with our secular metaphor of a recur-ring rollercoaster ride. While a religious pilgrimage em-phasizes the difficulties and sufferings parents face andtheir need to have faith, a rollercoaster ride accentuatesthe ups and downs, and the need to be prepared for theemotional curve or loop that comes next. Both meta-phors, however, convey well the lengthy, sinuous, andtextured affective journeys of mothers and fathers asthey deal with their children’s JIA.The emotional journeys parents recounted in thepresent study cannot easily fit into distinct or exclusiveemotional categories. Their journeys have many “ins andouts,” as one father in our study put it, during whichthey are confronted with multiple and often contrastingemotions. Bowes and co-authors [35], have advanced asimilar argument in the context of parenting a child withdiabetes. Similarly, complex nuanced emotional experi-ences have been documented among parents of childrenwith congenital heart defects, who remain hopeful asthey struggle to understand and prepare for their child’scondition [36]. Parents of children with cleft palate alsoreported a mixture of delight, confusion, and distressduring diagnosis and treatment [14]. Ambivalent – thisis both positive and negative – emotional experienceshave also been reported by parents of children with can-cer, who welcome their children’s early hospital dis-charge after diagnosis with concern as well as with joy[31], or who experience confusion, relief, and fear afterthe end of treatment [32].Our study and the studies cited above suggest thatmodels of neatly ordered, initially negative emotionalphases ending in positive resolution, likely inspired byKübler-Ross’s five-stage model of loss and grief [28], donot convey the multifaceted emotional journeys experi-enced by parents of children with chronic illnesses. Par-ents in the present study described complex affectivejourneys with no clear resolution that could not be fullyanticipated, and were akin to the ups, downs, and turnsof a rollercoaster ride.Correlations between patient outcomes and parentalexperiences have been demonstrated for JIA [8, 9] andother childhood chronic diseases [13–16, 42]. Althoughit seems logical that improving emotional support forparents may improve clinical and psychosocial outcomesfor children, definitive proof in randomized trials of psy-chological interventions for parents reminds elusive [43].Two cohort studies, using surveys of children with JIAand their parents, have shown an impact of parental dis-tress on the child’s quality of life [44, 45] and one ofthem also showed an impact of social support on thechild’s quality of life [45]. Awareness of the complexemotional journeys of parents of children with JIA mayguide healthcare providers in offering better support forparents, and this in turn may result in better patientoutcomes.Strengths and limitationsThe study sessions of this study were facilitated by non-medical professionals previously unknown to the par-ents. This enabled parents to feel more comfortable insharing their stories candidly and freely. The reciprocalinterviews allowed for one-to-one exchanges with otherparents and provided parents with an opportunity forGómez-Ramírez et al. Pediatric Rheumatology  (2016) 14:13 Page 8 of 11direct input to the information that was analysed. Theinterdisciplinary composition of our research team, withbackgrounds in medicine, nursing, psychology and an-thropology added depth to the analytical discussionsduring the study.The main limitation of our study is that it is a second-ary analysis of qualitative data collected for a differentprimary purpose. We could not schedule additional ses-sions or interviews to follow-up and confirm our find-ings and insights. We recruited parents in two Canadiancities, and even though the described emotions weresimilar, we cannot assume that parents’ affective jour-neys are equivalent in other cities or territories. It is pos-sible that experienced parents reported a selective viewof their earlier felt emotions filtered through the experi-ences they had had during the period between diseaseonset and this research’s study sessions. Nevertheless,the reports of their initial emotional experiences werestrikingly similar to those of novice parents.There is of course a subjective component in identify-ing emotions at second hand; in fact sometimes it canbe difficult for a person to clearly identify their ownemotions. For this reason, our coding of emotions can-not be considered absolute or incontestable, but rather areasonable emotion label given after discussion by agroup of researchers considering original recordings andcontextual circumstances. Since fluency in English orFrench, and willingness to participate in a group inter-view were pre-requisites for parents’ participation in thestudy, it is possible that the emotional experiences ofparents with less education and less mastering of lan-guage (e.g. recent immigrants) are under-represented inour study. Two other possible limitations relate togeneralizability of our findings and social desirabilitybias. It is possible that emotional experiences are differ-ent in other countries or cultures. This may explainsome of the differences between our study and the oneby Pelaez-Ballestas et al.[41]. It is also possible that givenour focus group methodology, parents curtailed some oftheir emotional expressions in consideration of thegroup, even if the one-on-one interviews helped estab-lish an accepting environment.Implications for research and clinical practiceWe suggest that similar qualitative research should beconducted in other geographical locations, to confirmfindings and better define the impact of socioculturalcontextual factors on the emotional journeys of parentsof children with JIA. Scholars applying a gender analysisto JIA [19, 40], and to other chronic illnesses [34, 42],have reported significant differences in the emotional re-sponses of fathers and mothers. In future studies, genderdifferences could be addressed by holding separate ses-sions for mothers or fathers. Additionally, future projectscould further explore the influence of the type of JIA onparents’ affective experiences. It would be important tofocus more closely on the examination of parental emo-tional journeys in relation to JIA categories that presentdistinctive features, such as systemic JIA. Rheumaticautoimmune diseases affect mainly girls and women[46], and another area of scrutiny is the role of the ill-child’s age and gender in mediating parental emotionalexperiences [34]. It would also be important to examinethe role of siblings, grandparents, and other familymembers in these affective journeys [42, 47]. In ourstudy, similar emotions were reported by both experi-enced and novice parents. Future studies may assess inmore detail how emotions change over time in order toconfirm our findings and evaluate whether differences inreported emotions are merely a matter of degree. Thiscould be done by carrying out a longitudinal qualitativestudy, following a cohort of parents over a period oftime with repeated interviews or by asking them to keepa diary.Although preliminary, our findings help delineate somebasic suggestions for clinical practice. When preparing tomeet parents during a clinic visit, care providers maypause and reflect on what point in their affective journeythe parents may be, as this will aid them in tailoring theircommunications accordingly. Parents may benefit frombeing reassured during the initial visits that strong emo-tions that feel like fluctuating rollercoaster rides areexpected and normal. Employing the metaphor of a recur-ring rollercoaster ride as a descriptive concept may behelpful in peer counselling or resource groups for parents.Health care providers in training may benefit from anoverview of the recurring emotions experienced by par-ents and enumeration of the resources available to supportparents through the ups and downs of the journey. Lastly,it would be important to reassure parents that strongemotions may be experienced even many years after diag-nosis, and this does not mean that they are failing inadjusting to their child’s chronic disease.ConclusionsThe parents of children with JIA included in this studyreported complex mixed positive and negative emotionswith ups and downs that felt like a recurring rollercoas-ter ride. Healthcare providers caring for children withJIA should be aware of these complex emotional experi-ences in order to better support parents and helpinprove JIA outcomes.AbbreviationsEF: experienced father; EM: experienced mother; JIA: juvenile idiopathicarthritis; NF: novice father; NM: novice mother.Competing interestsThe authors declare that they have no competing interests.Gómez-Ramírez et al. Pediatric Rheumatology  (2016) 14:13 Page 9 of 11Authors’ contributionsOGR carried out qualitative analysis, drafted, and revised the manuscript. MGparticipated in data collection, contributed to qualitative analysis, and revisedmanuscript. RB participated in analysis verification and provided feedback onmanuscript. RJ participated in analysis verification and provided feedback onmanuscript. JGr participated in ongoing collective analysis and providedfeedback on manuscript. LT participated in data collection and providedfeedback on manuscript. NS participated in final analysis and providedfeedback on manuscript. JGu conceived and designed the primary study,contributed to qualitative analysis, and revised the manuscript. All authorsread and approved the final manuscript.Authors’ informationO. Gómez-Ramírez, MA, PhD Candidate, Department of Anthropology,University of British Columbia, Vancouver, Canada; M. Gibbon, BA Psychology,Research Coordinator, Division of Rheumatology, Children’s Hospital ofEastern Ontario, Ottawa, Canada; R. Berard, MD, FRCPC, MSc, AssistantProfessor of Pediatrics, Western University & Pediatric Rheumatologist,Children’s Hospital, London Health Sciences Centre, London, Canada; R.Jurencak, MD, Assistant Professor, University of Ottawa & PediatricRheumatologist, Children’s Hospital of Eastern Ontario, Ottawa, Canada; J.Green, BSN, RN, Clinical Resource Nurse, Rheumatology Clinic, Children’s andWomen’s Health Centre of British Columbia, Vancouver, Canada; L. Tucker,MD, FAAP, Clinical Associate Professor of Pediatrics, University of BritishColumbia & Pediatric Rheumatologist, British Columbia Children’s Hospital,Vancouver, Canada; N. Shiff, MD, MHSc, Clinical Associate Professor inthe Division of Immunology and Rheumatology, Department of Paediatrics,University of Florida, and Adjunct Professor, Department of CommunityHealth and Epidemiology, University of Saskatchewan; J. Guzman, MD,FRCPC, MSc, Clinical Associate Professor, University of British Columbia &Pediatric Rheumatologist, British Columbia Children’s Hospital, Vancouver,Canada.AcknowledgementsThis project was funded by a research grant from the CanadianRheumatology Association under the Canadian Initiative for Outcomes inRheumatology Care/Initiative Canadienne pour des resultats ensoinsrhumatologiques (CIORA/ICORA) program. Preliminary results of this studywere presented at the American College of Rheumatology’s PediatricRheumatology Symposium (PRSYM), April 5, 2014, in Orlando, Florida. Weacknowledge Susanne Benseler, Rolin Brant, Ciaran Duffy, Kiem Oen, andRoss Petty, who were co-investigators in the original project that providedthe data for this study. We thank Angelyne Sarmiento, Kevin Huang, EmmaHitchcock, Stephanie Wong, Solen Roth, Lynn Skotnitsky, and Isabelle Eaton,who assisted with participant screening and recruitment, study session logisticsand facilitation, data entry, and/or translation. We are especially grateful to themothers and fathers who generously took the time to participate in the study.Author details1Department of Anthropology, University of British Columbia, 6303 NWMarine Drive, Vancouver, British Columbia V6T 1Z1, Canada. 2Division ofRheumatology, Children’s Hospital of Eastern Ontario, 401 Smyth Road,Ottawa, Ontario K1H 8 L1, Canada. 3Department of Pediatrics, WesternUniversity and Children’s Hospital, London Health Sciences Centre, 800Commissioners Road East, London, Ontario N6A 5 W9, Canada. 4Departmentof Pediatrics, University of Ottawa and Children’s Hospital of Eastern Ontario,401 Smyth Road, Ottawa, Ontario K1H 8 L1, Canada. 5British ColumbiaChildren’s Hospital, Room K4-116, 4480 Oak Street, Vancouver, BritishColumbia V6H 3V4, Canada. 6Department of Pediatrics, University of BritishColumbia and British Columbia Children’s Hospital, 4480 Oak Street,Vancouver, British Columbia V6H 3V4, Canada. 7Department of Pediatrics,University of Florida, and Department of Community Health andEpidemiology, University of Saskatchewan, 1600 Archer Road, Gainesville,Florida, USA.Received: 4 January 2016 Accepted: 2 March 2016References1. 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