A recurring rollercoaster ride: a qualitative study of the emotional experiences of parents of children with juvenile idiopathic arthritis

We followed a four step qualitative analytical process [24, 25]. Analysis was done using word processors and spreadsheets, instead of software specially designed for qualitative research. Since the expression of emotions is highly dependent on the context, and emotions are often manifested by non-text cues such as pauses, changes in voice intonation, body language, crying, laughing, etc., we listened to the original audiotapes, and when necessary, relied on the accounts of people who were present during the original study sessions. Details of the four steps are described below.

First, OGR listened to the original focus group audio-recordings several times. She added to the existing verbatim transcripts extra annotations that could inform coding of emotions, such as pauses, utterances, changes in voice intonation and speed of speech, crying, laughs and background noises [26]. She had not been present during the original focus groups but when in doubt she consulted with MG and LT, who were present. Written reports of reciprocal interviews did not need further preparation as they had already been entered in spreadsheet files.

Second, two researchers (OGR, MG) carried out initial coding of emotions assisted by a bilingual list of 69 potential emotion labels derived from pertinent literature. The list was based primarily on the work of Plutchik [27] and Kübler-Ross [28]. A directed content analysis approach [29], was used to code every instance of emotional experience present in the datasets. Four researchers (OGR, MG, JGr, JGu) held weekly conference calls to provide feedback during coding, including refinements and additions to the initial list of emotion labels.

Third, two investigators (RB, RJ) carried out coding verification through independent assessment of the initial coded files. This internal review helped confirm that all emotional instances had been flagged and that the assigned emotion labels were accurate [30]. When in doubt about an emotion label, we based our final coding decision on audio cues, the reports prepared by the professional facilitators of the study sessions, and the interpretations of those in our research team (MG, LT) who had been present during the sessions.

Fourth, all investigators in this study examined and reflected on the coded files individually, and then discussed them collectively during conference calls. One conference call was devoted to each of the three sessions. During this reflection and discussion we asked what emotions were predominant at different stages of the disease, who or what were those emotions directed at, and how the background of participants shaped their emotional experiences. Background was broadly interpreted to include gender, language, length of experience with the disease, child’s JIA category, and previous experience with another rheumatic disease.

Parents recounted the period between symptom onset and diagnosis as a time of mounting anxiety, fear, and confusion. Similar emotions were reported by parents regardless of their specific circumstances and length of familiarity or experience with JIA. Many parents said they had initially thought their children merely had an injury. The intensity of their mixed feelings of anxiety, fear, and confusion was shaped by the relative ease or difficulty in arriving at a diagnosis. For some parents, this was also a time punctuated by frustration with the health care system as families experienced prolonged waits to be seen by a paediatric rheumatologist with ensuing delay in diagnosis. Other parents expressed indignation about having being ignored, belittled, or even suspected of child abuse due to their child’s unexplained joint swelling. This was perceived as further delaying referral to the specialist and arrival at the diagnosis. Table 2 shows illustrative quotes from parents.

Additionally, experienced parents often felt blindsided by the diagnosis of JIA, especially those who had previous personal or family history with rheumatic diseases. Their previous experience with arthritis did very little to help them suspect and accept this diagnosis in their child.

Parents expressed varying degrees of denial as they attempted to come to terms with the diagnosis. A few novice parents still doubted the diagnosis even though they had agreed to participate in a study session for parents of children with JIA. Both novice and experienced parents humorously recounted some illogical things they did or beliefs they had at the time, and blamed these on their denial.

Later in the disease course, particularly at times of good disease control, parents felt less overwhelmed and better equipped to process information regarding their child’s illness. The news that effective treatments were available came as a great relief. At times of relative disease quiescence, parents predominantly felt gratitude, sometimes towards health care providers, as well as hope that administered treatments would continue to be effective.

These periods, however, were sometimes mixed with fatigue and frustration about the continuing need for treatment, as well as with anxiety regarding potential treatment side-effects. Parents were often fearful about the possibility of flares.

During times of increasing or ongoing symptoms, many parents experienced a mix of admiration, sympathy, frustration, and sorrow. Parents felt admiration and sympathy towards their children for the way they courageously handled the disease and their efforts to carry on with their lives. Parents, however, simultaneously experienced sorrow and frustration about the disease making their child sit out of regular daily activities and feel pain.

During times of ongoing uncontrolled symptoms, some parents experienced frustration and indignation towards school teachers, their child’s peers, or family members, who doubted the veracity or extent of their child’s complaints and care needs. These feelings were sometimes also experienced towards individuals who did not seem to understand the demands of caring for a chronically-ill child, and the effects this had on parents’ careers. Parents were also frustrated about the need for increasing or changing treatments, with new potential side-effects.

Some emotions were not predominantly associated with specific disease periods, but rather formed a pervasive backdrop to the parental experience of caring for a child with JIA. These included an underlying anxiety and a sense of powerlessness, related to the long-term burden of managing an uncertain and time-consuming disease. Parents expressed a sense of strain through repeated phrases like: “lifelong,” “rest of your life,” “long road,” “long process,” “tiring,” “rollercoaster,” “ups and downs,” “life changing,” or “time consuming.” There was a sense that their lives and those of their children had been forever altered. On the positive side, parents expressed deep solidarity and companionship with their children. This was indicated by their speaking of their children’s experiences in plural expressions like: “when we were first diagnosed,” “we had a flare once,” or “that’s kind of how our diagnosis came about.”

The overarching metaphor of a rollercoaster ride was mentioned by parents themselves on several occasions (see Fig. 1). This metaphor and the time periods described in this study emerged from the data as pertinent to synthesize the parents’ affective journeys. In other words, parents’ affective journeys resembled rollercoaster rides made of recurring, intensely felt emotional ups and downs, shaped by the uncertainty, variability, and disabilities associated with JIA.

On the whole, the emotional fluctuations, or ups and downs of parents’ rollercoaster rides, did not have a clear final resolution and were constantly changing even years after the diagnosis. While novice parents reported intense fear and disbelief early on, experienced parents reported that they continued to feel those emotions at other points during the disease course. Likewise, experienced parents reported mixed feelings of sorrow and admiration for their children, as did novice parents. Overall, the emotional experiences of novice and experienced parents were similar. The primary difference was that experienced parents had progressed further along in the trajectory of the disease, being exposed to a wider array of disease-related issues.

Lastly, we did not find clear differences in the emotional experiences of parents according to their own gender or the gender of their child. While we carried out sessions in English and French, similar emotional journeys were related in both languages. There were no major differences between the emotional experiences of parents of children who received medical care in one city or the other.

The study sessions of this study were facilitated by non-medical professionals previously unknown to the parents. This enabled parents to feel more comfortable in sharing their stories candidly and freely. The reciprocal interviews allowed for one-to-one exchanges with other parents and provided parents with an opportunity for direct input to the information that was analysed. The interdisciplinary composition of our research team, with backgrounds in medicine, nursing, psychology and anthropology added depth to the analytical discussions during the study.

The main limitation of our study is that it is a secondary analysis of qualitative data collected for a different primary purpose. We could not schedule additional sessions or interviews to follow-up and confirm our findings and insights. We recruited parents in two Canadian cities, and even though the described emotions were similar, we cannot assume that parents’ affective journeys are equivalent in other cities or territories. It is possible that experienced parents reported a selective view of their earlier felt emotions filtered through the experiences they had had during the period between disease onset and this research’s study sessions. Nevertheless, the reports of their initial emotional experiences were strikingly similar to those of novice parents.

There is of course a subjective component in identifying emotions at second hand; in fact sometimes it can be difficult for a person to clearly identify their own emotions. For this reason, our coding of emotions cannot be considered absolute or incontestable, but rather a reasonable emotion label given after discussion by a group of researchers considering original recordings and contextual circumstances. Since fluency in English or French, and willingness to participate in a group interview were pre-requisites for parents’ participation in the study, it is possible that the emotional experiences of parents with less education and less mastering of language (e.g. recent immigrants) are under-represented in our study. Two other possible limitations relate to generalizability of our findings and social desirability bias. It is possible that emotional experiences are different in other countries or cultures. This may explain some of the differences between our study and the one by Pelaez-Ballestas et al.[41]. It is also possible that given our focus group methodology, parents curtailed some of their emotional expressions in consideration of the group, even if the one-on-one interviews helped establish an accepting environment.

We suggest that similar qualitative research should be conducted in other geographical locations, to confirm findings and better define the impact of sociocultural contextual factors on the emotional journeys of parents of children with JIA. Scholars applying a gender analysis to JIA [19, 40], and to other chronic illnesses [34, 42], have reported significant differences in the emotional responses of fathers and mothers. In future studies, gender differences could be addressed by holding separate sessions for mothers or fathers. Additionally, future projects could further explore the influence of the type of JIA on parents’ affective experiences. It would be important to focus more closely on the examination of parental emotional journeys in relation to JIA categories that present distinctive features, such as systemic JIA. Rheumatic autoimmune 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 emotional experiences [34]. It would also be important to examine the role of siblings, grandparents, and other family members in these affective journeys [42, 47]. In our study, similar emotions were reported by both experienced and novice parents. Future studies may assess in more detail how emotions change over time in order to confirm our findings and evaluate whether differences in reported emotions are merely a matter of degree. This could be done by carrying out a longitudinal qualitative study, following a cohort of parents over a period of time with repeated interviews or by asking them to keep a diary.

Although preliminary, our findings help delineate some basic suggestions for clinical practice. When preparing to meet parents during a clinic visit, care providers may pause and reflect on what point in their affective journey the parents may be, as this will aid them in tailoring their communications accordingly. Parents may benefit from being reassured during the initial visits that strong emotions that feel like fluctuating rollercoaster rides are expected and normal. Employing the metaphor of a recurring rollercoaster ride as a descriptive concept may be helpful in peer counselling or resource groups for parents. Health care providers in training may benefit from an overview of the recurring emotions experienced by parents and enumeration of the resources available to support parents through the ups and downs of the journey. Lastly, it would be important to reassure parents that strong emotions may be experienced even many years after diagnosis, and this does not mean that they are failing in adjusting to their child’s chronic disease.