‘It might hurt,but you have to push through the pain’

Abstract

Our primary objective was to gather perspectives of children diagnosed with juvenile idiopathic arthritis (JIA) and their parents as they relate to physical activity (PA) participation. To do so, we conducted a study on 23 children diagnosed with JIA and their parents (N = 29). We used convenience sampling to recruit participants and qualitative method- logies (one-on-one semi-structured interviews). We adopted a five-step framework analysis to categorize data into themes. Children and their parents described factors that act to facilitate or hinder PA participation. Pain was the most commonly highlighted PA barrier described by children and their parents. However, children who were newly diagnosed with JIA and their parents were more likely to highlight pain as a barrier than were child/parent dyads where children had been previously diagnosed.

Keywords

Barriers and facilitators health promotion juvenile idiopathic arthritis physical activity qualitative approaches

Introduction

There is clear evidence that all children benefit from physical activity (PA) (Janssen and LeBlanc, 2010; Tan et al., 2014). This is also true for children diagnosed with chronic diseases such as asthma, hemophilia, cystic fibrosis, and juvenile idiopathic arthritis (JIA) (Philpott et al., 2010). JIA is the most common pediatric rheumatic disease (Sacks et al., 2007). Despite a preponderance of research that clearly espouses benefits of regular PA for the health and development of children (Janssen and LeBlanc, 2010; Tan et al., 2014), children with JIA are less active (Lelieveld et al., 2008; Limenis et al., 2014), have poorer cardiovascular fitness (Lelieveld et al., 2008; Singh-Grewal et al., 2007; van Pelt et al., 2012), reduced muscular endurance (Klepper et al., 1992), and decreased bone density (Burnham et al., 2008) compared to children without JIA. They are also more likely to experience a number of psychological and social impairments as a result of their disease and/or lack of PA such as stress, anxiety, low self-esteem, depression, frustration, and difficulty making friends (Bomba et al., 2013; Mullick et al., 2005; Shaw et al., 2006). Long-term follow-up of children diagnosed with JIA showed that many negative outcomes persisted well into adulthood (Packham et al., 2002; Peterson et al., 1997). Together these factors highlight the need for early and effective PA interventions.

Many PA interventions in children with JIA demonstrated positive outcomes and suggest that, at least in the short term, PA may be an effective means to minimize some negative health outcomes associated with JIA. Controlled trials reported improved aerobic fitness (Apti et al., 2014), physical function (Sandstedt et al., 2013; Singh-Grewal et al., 2007; Tarakci et al., 2012), and quality of life (Apti et al., 2014; Singh-Grewal et al., 2007; Tarakci et al., 2012). Importantly, these studies also demonstrated that participation in PA rarely exacerbated JIA symptoms (the exception was Taracki et al., 2012, who reported one dropout).

We perceived a need to complement the abundant empirical evidence highlighting the negative health effects associated with JIA and the potential role of PA in negating these effects. Few studies attempted to explore barriers and facilitators to PA participation from the perspective of children with JIA and their parents. Previous studies focused on barriers and facilitators to participation in specific prescription exercise (Britton and Moore, 2002; De Monte et al., 2009). However, they were not designed to specifically identify barriers and facilitators to participation in habitual and community-based PA. Hackett (2003) explored children’s perceptions of play and leisure time and identified barriers but not facilitators. Firsthand knowledge about PA experiences of children with JIA and their parents may provide insight for members of the health-care team who aim to encourage children’s adherence to healthy behaviors, including exercise. Therefore, we use qualitative methods to examine perspectives of children who have JIA and their parents to identify potential barriers and facilitators to children’s participation in PA.

Patients and methods

Sample

We recruited a subset of children (n = 23) enrolled in a Canadian multicenter prospective longitudinal cohort study, known as the Linking Exercise, Activity and Pathophysiology (LEAP) in JIA study. LEAP aims to evaluate (1) determinants of PA in children with JIA and (2) how PA influences clinical outcomes, inflammation, and the development of muscle and bone in children with JIA. Children were recruited from 12 pediatric rheumatology centers across Canada and were invited to participate if they fulfilled the following criteria: (1) diagnosed with JIA by a pediatric rheumatologist, (2) between the ages of ≥8 years and <16 years (up until the day of their 16th birthday) at the time of enrollment, and (3) both child and a parent were fluent in either English or French. Children were classified as either newly diagnosed with JIA (JIA for ≤6 months at the time of enrollment) or previously diagnosed (JIA >6 months at the time of enrollment).

For the purpose of our sub-study, we recruited English-speaking LEAP children and their parent(s) who attended LEAP clinic visits in Vancouver to participate in one-to-one interviews. During the LEAP assessment, the interviewer (DLR) explained the sub-study to the child and parent(s). Both child and parent(s) were asked to thoroughly read and sign separate consent forms. If they consented, DLR conducted an interview with a parent. The child was interviewed after completing his/her LEAP assessment. Participants were recruited until data saturation was achieved. Data saturation was determined based on the ongoing data analysis by DLR throughout the study. Once DLR felt that no new themes were emerging (data saturation) an additional six interviews were conducted as a mechanism for member checking and to ensure saturation. Twenty-three children (8 boys and 15 girls; aged 8.3–16.3 years; mean age = 11.9 years, SD = 2.6 years) and 29 parents (8 fathers and 21 mothers) were interviewed. DLR attempted to recruit 29 eligible child/parent dyads; however, there were four children who were not approached because of time considerations (e.g. DLR had other obligations or parent was in a hurry to leave). Additionally, one child/parent dyad did not want to participate, one parent did not want his/her child to participate, and one interview was conducted with the mother and father together. Ethical approval for this study was granted from both the University and Health Authority Clinical Research Ethics Boards.

Procedure

Interviews

Interviews were conducted and recorded by DLR in Vancouver between June 2012 and April 2013. A semi-structured interview guide was developed to allow the moderator to probe and encourage children and parents to elaborate on their experiences. The interview guide was constructed based on themes identified in the literature and early pilot interviews (August and December 2011) with children and their parents. Interviews with children lasted 7 minutes and 45 seconds and parent interviews lasted 14 minutes and 43 seconds, on average.

Method of data analysis

All interview recordings were transcribed verbatim. We uploaded data into the qualitative analysis program NVivo 10.0 (QSR International, Melbourne, Australia). DLR analyzed transcripts using framework analysis that included five stages: familiarization, identification, indexing, charting, and interpretation (Ritchie and Spencer, 1994). Child and parent data were analyzed separately. Within these data sets, newly versus previously diagnosed children/parents, boys versus girls, and younger versus older children were subjected to sub-analyses. Sub-analyses involved comparing and contrasting the emergent themes between groups.

Peer debriefing and member checking were used to enhance the credibility of results (Merriam, 2009). DLR met with one coinvestigator (JSG) on three occasions to validate the results that arose from the preliminary thematic framework. Both DLR and JSG thoroughly read the transcripts. Prior to determining data saturation, the final six interviews (two child/parent dyads, one parent only, and one child/parent combined interview) were used to confirm that the emergent themes from data analysis were an accurate representation of children with JIA and their parents’ experiences. The questions used during the interviews were derived from the results of the preceding interviews and were designed to act as a form of member checking. To ensure anonymity, we used pseudonyms to identify all participants.

Results

We present our findings as two topic areas: (1) barriers to PA participation and (2) facilitators for PA participation. Three main themes emerged under barriers: symptoms of JIA, self-imposed, and parent-imposed, and four main themes emerged under facilitators: symptom relief, enjoyment, pain management strategies (subthemes: pushing through discomfort, taking short breaks, and switching activities), and support. Topic areas, main themes, and subthemes are explored in detail below. We compared and contrasted the perceptions of children to parents, newly diagnosed children/parents to previously diagnosed children/parents, boys to girls and younger children (<13 years) to older children (≥13 years).We highlight similarities and differences in perceptions and experiences with quotes from the interviewees. No apparent distinctions were found between boys and girls and older and younger children.

Barriers to PA participation

Symptoms of JIA

Pain was highlighted by most children and parents as the major barrier to PA. Children who were newly diagnosed and their parents more often highlighted pain as a barrier to PA compared with previously diagnosed children and parents.

Some days it’s just, like, my knees would just not be able to run … so I just kind of had to stop running. (Kaylee, age 15)

Other symptoms of JIA were also highlighted as barriers to PA, but mostly by parents. These symptoms include joint swelling, joint and muscle stiffness, muscular weakness, fatigue, weight gain, rashes, and more severe symptoms such as limb deformity. Parents felt that these symptoms limited their child’s functional abilities during daily living routines and leisure time PA.

Walking through the mall, he would need to rest at benches, you know, at least twice during a walk through a mall. (Sandra, parent)

Self-imposed barriers

Children and parents described ways that children imposed barriers on themselves. Limitations were self-imposed as a result of the child feeling a level of pain/discomfort that they no longer found tolerable. The child chose to either quit an activity or stop for an extended period of time rather than employ strategies (e.g. pacing and pushing through) that would allow them to continue.

Two or three years ago it was pretty painful … I stopped playing hockey for a bit and then stopped doing lots of stuff like rugby. (Mason, age 16)

A few parents indicated that their children were more self-conscious as a result of the side effects of JIA (e.g. using crutches and weight gain from medication). These children restricted their involvement in PA, so that they wouldn’t be noticed by their peers.

Maybe he doesn’t want to go in there ‘cause of his weight gain, and, you know, the whole class is doing something, a group activity, and maybe they’ll stare at him. (Sandra, parent)

Parent-imposed barriers

Parent-imposed barriers commonly emerged as influential during discussions with parents. A number of parents stated that they did not want their children participating in certain activities, as they were concerned about causing further harm or exacerbating symptoms. This protective behavior limited children’s freedom to choose activities, which may have impacted their overall participation in PA.

I’m always worried about permanent damage. I know that they say a lot of things won’t damage him, but I just—kicking a soccer ball with your ankle that has arthritis just sort of doesn’t sit well with me. (Kimberly, parent)

Facilitators to PA participation

Symptom relief

Symptom relief emerged from our interviews with children and parents as a facilitator to PA. Children and parents stated that PA could relieve symptoms of JIA, most notably pain and stiffness. They described symptom relief as something that could occur almost immediately upon engaging in an activity or as a benefit that might come from continued participation. Participation in activities that produce low levels of stress on the joints and muscles, such as walking, biking, and swimming, often resulted in relief.

I had, like, a lot of pain in the morning, and then after, like, a lot of walking in the morning it sort of went away. (Emily, age 14)

Enjoyment

Enjoyment was highlighted as a motivator for participation in PA by almost all parents and children. Enjoyment motivated them to continue participating despite their disease. The enjoyment message was directly stated or strongly implied, especially by children. Both children and parents used words such as: ‘fun’, ‘like’, ‘enjoy’, and ‘love’ to describe their sentiments toward sports and PA.

I just love the game. I don’t have any words for it. I just, like, love it. (Liam, age 13)

Pain management strategies

Children developed strategies to manage pain experienced before, during, or after PA. Children and parents highlighted three pain management strategies that children used often: (i) pushing through discomfort, (ii) taking short breaks, and (iii) switching activities.

Pushing through discomfort. Children and parents perceived pushing through pain and discomfort rather than stopping as important. Reasons for pushing through varied from hiding arthritis from peers, enjoyment of the game/activity, or acknowledging the long-term benefits.

It might hurt a bit, but you have to push through the pain ‘cause it helps you a lot. (Sophia, age 12)

Taking short breaks during lengthy periods of PA was another common strategy that helped many children participate, despite discomfort. This pacing strategy was used often during physical education class.

I would be running and then my ankles or my knees would, like, kind of hurt and then I would have to sit down. I would probably take a rest for about two, three minutes and I would get back. (Liam, age 13)

Switching activities allowed for continued participation in PA, rather than quitting. A few previously diagnosed children and their parents described situations where children were unable to partake in activities because of discomfort. In such cases, children often switched to new activities, which caused less discomfort.

We switched from cross-country skiing to downhill skiing, because Noah can get into a downhill ski boot. (Jennifer, parent)

Support

Support was the major social facilitator for PA participation and, interestingly, was mostly highlighted by parents. Support was provided by parents, friends, teachers, and health-care providers. Many parents highlighted themselves as key supporters of their child’s PA. Parents provided support through encouragement, financing sports participation, modifying family PA to be more inclusive, and by communicating their children’s disease status to teachers to facilitate support within the school.

We want to encourage him to become a bit more athletic or physical because we’ve noticed with him that he’s less inclined to do anything and I don’t want this to be his sort of excuse or crutch. (Kimberly, parent)

Teachers, friends, and health-care providers were also described as supportive. Teachers modified lessons to be more inclusive and allowed the children to take breaks as needed. Friends were described as providing support by understanding limitations and modifying their activities. Health-care providers supported children and parents by providing them with information and by encouraging children to remain active.

They [health care providers] were very good at giving us handouts and information sheets about what to do and what not to push, when to stop and things like that. They encouraged us, you know, to do the activity. (Wendy, parent)

Discussion

We present factors that together act to facilitate or hinder children with JIA participating in PA. To our knowledge, this is the first study to highlight barriers and facilitators to habitual and community-based PA participation as perceived by children diagnosed with JIA and their parents.

Several recommendations emerge from our findings; these may serve to increase PA participation among children diagnosed with JIA. First, children should be taught strategies to manage their pain while maintaining PA levels. Symptoms of JIA and pain in particular were emphasized by children and their parents. Pain was the main physical barrier to PA, and relief of symptoms was reported as a potential facilitator of PA participation. Children and parents described a number of supportive strategies to manage pain. Should children avoid being physically active based on unwarranted fears, this could prove more detrimental to their health (Asmundson et al., 2012). An adapted exercise program with rest intervals would be most beneficial. Children with JIA previously demonstrated a desire for more knowledge and skills so that they could self-manage their disease (Stinson et al., 2008, 2012). Teaching children short-term pain management strategies effectively reduced daily pain experiences (Rosenzweig and Nabors, 2013). Both of these strategies may effectively support children’s participation in PA.

Second, researchers and health-care providers should consult with children and parents when designing PA programs. The need for activities to be enjoyable emerged as a strong facilitator of PA. A number of qualitative studies evaluated the influence of prescribed exercise programs on children with JIA and found boredom to be a major barrier to adherence (Britton and Moore, 2002; De Monte et al., 2009; Jones et al., 2009). Therefore, it is important that programs include activities that children enjoy.

Third, parents should be consulted and thoroughly informed in order to foster their full support. Parents were found to act as both facilitators and barriers to their child’s PA. Parental support has been found to be strongly associated with children’s PA levels (Edwardson and Gorely, 2010; Trost et al., 2003). Many parents of chronically ill children perceived their children as being more vulnerable, which affects parental behaviors, attitudes, and beliefs regarding their child (Hullmann et al., 2010). As a result, parents may impose barriers that limit their child’s PA choices. Thus establishing strong parental support is important for children with JIA and for community partners and caregivers who facilitate children’s exercise.

In qualitative methodology, prolonged engagement is recommended to establish rapport with participants (Creswell and Miller, 2000). However, our interviews with the children and their parents were relatively short. This brief engagement may have affected the willingness of some participants to share and discuss more sensitive issues. Although engagement during the interview was brief, the interviewer was involved in the clinical assessments with the children prior to interviewing them. During this time (30 minutes), the interviewer attempted to establish positive rapport.

Generalizations from the results of this study to a wider population need to be made with caution. This research recruited participants from the larger LEAP study—a study about PA. Therefore, it is possible that this sample may be biased toward PA compared with those children/parent dyads who are not in LEAP. In addition, the sample size for this study was relatively small. However, the sample size is comparable with other qualitative studies of children with JIA and/or their parents (Britton and Moore, 2002; De Monte et al., 2009; Hackett, 2003; Jones et al., 2009). While it is inevitable to avoid some degree of bias, our results reaffirm the findings from the current literature and contribute to the knowledge regarding children with JIA and their parents perceived barriers and facilitators to PA.

Although the results of our study may not be generalizable, we are able to provide perspectives of children and their parents as together they influence child behaviors toward PA. The known benefits of PA far outweigh the perceived cost. Thus, it seems imperative that health-care providers develop effective strategies to encourage children with JIA to participate in PA.

Footnotes

Acknowledgments

The authors would like to sincerely thank all the children and parents for understanding the importance of our research and for sharing their individual experiences with juvenile idiopathic arthritis.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Funding for this study was provided by the Canadian Institutes of Health Research (CIHR)—PAF-107535.

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