Research

Living with juvenile idiopathic arthritis: parents’ experiences of treatment regimens and home exercise programmes Fiona Jones,1 Sylvia Rodger, 2 Sarah Broderick 3 and Rachel De Monte 1 Key words: Juvenile idiopathic arthritis, home programmes, parent involvement, exercises.

The parents of children with juvenile idiopathic arthritis have been identified as pivotal facilitators of children’s involvement in treatment regimens, including home exercise programmes. As such, parents’ perspectives regarding the factors that influence participation in their children’s treatment regimens, and in particular home exercise programmes, are addressed in this study. In depth, semi-structured interviews were conducted with 16 families. Rigour was ensured through a rich description of participants, peer and member checking, field journals and audit trails. Four key topics related to the process – the experience of the child’s diagnosis, community access and participation, treatment regimens and the impact of these regimens on the parent’s roles and relationships – and were addressed. Seven key themes emerged, namely the difficult process of diagnosis, the emotional toll, medications, exercises, life revolves around arthritis, parents’ relationship with their child and other family members, and parents and paid work. The implications for clinical practice and future research are discussed.

Introduction

1 Formerly

Occupational Therapy (Honours) student, The University of Queensland, Brisbane, Queensland, Australia. 2 The University of Queensland, Brisbane, Queensland, Australia. 3 Montrose Access, Corinda, Australia. Corresponding author: Dr Sylvia Rodger, Associate Professor and Head, Division of Occupational Therapy, School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Queensland 4072, Australia. Email: [email protected] Reference: Jones F, Rodger S, Broderick S, De Monte R (2009) Living with juvenile idiopathic arthritis: parents’ experiences of treatment regimens and home exercise programmes. British Journal of Occupational Therapy, 72(6), 249-258. © The College of Occupational Therapists Ltd. Submitted: 20 March 2008. Accepted: 24 April 2009.

Juvenile idiopathic arthritis (JIA) comprises a group of chronic inflammatory arthropathies characterised by the onset of nonspecific inflammation of the peripheral joints before 16 years of age (Reed 2001, Hofer and Southwood 2002, Cush et al 2005). JIA is an unpredictable and fluctuating disease that may affect every aspect of an individual’s life (Schanberg et al 2003, Rogers 2005). The initial treatment principles for JIA involve control of the inflammatory process through chemotherapy, pain management, maintenance of joint position and function, maintenance of age-appropriate psychosocial-educational development and close monitoring and management of complications (Britton and Moore 2002, Singh-Grewal et al 2006, Ehrmann Feldman et al 2007). New pharmacological interventions have been shown to improve physical impairment in children with JIA; however, these improvements do not necessarily translate to functional and quality of life outcomes (Takken et al 2001, Ehrmann Feldman et al 2007, Solari et al 2008). This suggests the need for additional interventions in the management of JIA (Solari et al 2008). These treatment aims are pursued primarily in the home environment through a daily exercise, splinting and complex chemotherapy regimen (Frank et al 1998, Britton and Moore 2002). Therapeutic exercise is the mainstay of treatment for children with JIA (Akikusa and Allen 2002, Cakmak and Bolukbas 2005). Rest is necessary to relieve pain during periods of acute inflammation, in combination with gentle passive movement to maintain the full range of joint movement. As reduction of the inflammation occurs and the pain is tolerable, an active exercise programme is introduced to improve joint movement further and to strengthen the surrounding muscles (Roberton and Robinson 2003,

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Cakmak and Bolukbas 2005, Cush et al 2005). Home exercise programmes are therefore considered important components of management for children with physical disabilities (Gajdosik and Campbell 1991, Klepper et al 1992, Rone-Adams et al 2004). It is not sufficient to implement a prescribed medical or exercise regimen without consideration of the behavioural and psychosocial factors that may impede the therapy process (Varni and Wallander 1984). Adherence to treatment in JIA requires the collaboration of the parents and the child owing to the complexity of management (April et al 2006a). Parents are responsible for the supervision of medication, exercise and splinting, and attendance at medical and therapy appointments (Barlow et al 1998, April et al 2006b). Issues related to long-term adherence with therapeutic regimens, parent-child relationships, peers, siblings and interactions with health care professionals become increasingly relevant in the face of complex and long-term interventions (Varni and Wallander 1984). Studies have demonstrated mixed findings for child-parent agreement pertaining to adolescents with JIA. The general conclusion is that parents and children tend to agree about easily observable behaviours, such as participation in splinting or medication programmes, in comparison to those that are less overt, such as adherence to exercise programmes (Ravelli et al 2001, Sawyer et al 2004, Shaw et al 2006). Extensive variation between the reports of parents and adolescents has been found, particularly for those with higher disease activity, several limited joints, pain, functional disability and reduced health-related quality of life (Sawyer et al 2004, Shaw et al 2006). However, the experiences of parents and younger children have not been explored in relation to their treatment regimens. Family-centred practice is highly regarded in paediatric occupational therapy, recognises family expertise and focuses on enhancing caregiver competency to allow the health and development of the child to be managed effectively within daily life and meaningful family goals (Novak and Cusick 2006). As parents have been shown to play a crucial role in participation in home exercise programmes, it is necessary to consider the parents’ perceptions of adherence with home exercise programmes and, in particular, the factors that parents feel impede their child’s participation in home exercise programmes. This paper aims to address the perceptions of parents regarding living with JIA and, specifically, the factors that influence their child’s treatment regimen, including participation in home exercise programmes. The perspectives of children about living with JIA and home exercise programmes were sought simultaneously and these are reported by De Monte et al (2009). This paper aims to assist occupational therapists and other health care professionals to facilitate children’s ability to live with JIA and participate optimally in home exercise programmes. The research questions addressed in this study were:

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1. How does JIA impact upon family life? 2. How do families participate in their child’s treatment regimens and, in particular, home exercise programme?

Method Research design A qualitative research design was adopted in order to understand the experience of parents who have a child with JIA (Krefting 1991, Cook 2001, Avis 2005). Qualitative studies aim to understand the perspectives and lived experience of individuals through their own descriptions (Krefting 1991, Todres 2005). In-depth, semi-structured, open-ended interview questions were utilised to appreciate the lived experience of parents of a child with JIA regarding the treatment regimens required by their children.

Participants Purposive sampling was used based on a database of clients of Montrose Access. Montrose Access is an organisation providing support services to children with physical disabilities in Queensland, Australia. Occupational therapists from Montrose Access recruited the parents of children who met the inclusion criteria, namely that they had a child who was aged between 8 and 18 years and had JIA affecting four or more joints. Thirty-two families were identified as meeting the inclusion criteria, from which 23 families were approached by occupational therapists who had appointments with these families between December 2006 and June 2007. Nineteen families (83%) agreed to participate in the study. Three families later withdrew for logistical or family reasons. Two fathers and 15 mothers from 16 families participated in the study. Twelve sets of parents were married, with one couple separated and three divorced. The majority of parents fell between the ages 30-50 years; however, one parent was over 55 years of age. All fathers for whom information was available were involved in full-time employment, with the exception of one father who had retired. Four mothers worked full time and nine were employed in a part-time capacity. The remaining two mothers were full-time carers who did not work outside the home.

Interview protocol The interview protocol was developed in conjunction with occupational therapists and physiotherapists at Montrose Access who had extensive clinical experience with children with JIA and using relevant literature. An in-depth, semistructured interview format was developed to facilitate appropriate discussion with parents. The interview covered topics related to the process of diagnosis, experience of health care services, exercise programmes, medications, splints, school, the impact on relationships and daily living. The interview protocol was not piloted; however, discussions with experts in JIA led to minor refinement and rewording

Fiona Jones, Sylvia Rodger, Sarah Broderick and Rachel De Monte

of questions following the initial interviews. A shortened version of the interview protocol is provided in Table 1, with all supporting questions and alternatives removed for the purpose of this publication. The semi-structured nature of these interviews allowed further investigation of the topics introduced by the participants and a slight deviation from the interview protocol described. Table 1. Parent interview protocol 1. If another parent asks you about JIA, how do you explain the condition to them? 2. Can you please describe your child’s health and condition over the past 6 months? What has their pain and stiffness been like? Have they had any flare-ups? 3. How often do you and your child attend health care appointments, such as occupational therapy or medical appointments? 4. Do you have any particular things to do at home in between appointments? Can you please describe these? (For example, medication, exercises or splints.)

Data analysis The coding of the full transcripts was performed independently by two authors (FJ and RdM). Thematic content analysis (Patton 2002) was used during data analysis. The process of thematic data analysis used in this paper is best depicted by the method algorithm outlined by Hackett (2003), based on Smith (1995) and Taylor and Bogdan (1998), and shown in Fig. 1. The recoding of clean transcripts after 2 weeks ensured coding consistency over time, in addition to peer examination by the study supervisor (SR) and another honours student (RdM). This led to agreement regarding the emerging themes. Using consensus discussions, consistency of themes was reached where there was any disagreement between peer coders. Fig. 1. Data analysis method algorithm (Smith 1995, Taylor and Bogdan 1998, Hackett 2003).*

5. How important do you feel in the management of your child’s condition? Do you feel that you have control over your child’s treatment? 6. Does your child have any exercises they need to do? 7. How did you decide not to have an exercise programme? Who was responsible for the decision? [Asked only if the parent indicated that a home exercise programme had been discontinued.] 8. Has your child taken up any sports, etc. since the diagnosis? 9. Do you think the diagnosis of JIA has changed your family’s lifestyle? How? (For example, financially, socially, leisure or career.) 10. How did it feel when your child was first diagnosed? 11. What concerns you most about your child’s condition? 12. What would you do or change about the management of your child’s condition? (For example, services, supports, or availability and approachability of therapists, availability of information.)

Procedure Ethics approval was granted by one of the University of Queensland Ethics Committees and gatekeeper clearance was obtained from Montrose Access. Informed written consent was obtained from parents prior to interview. Occupational therapists from Montrose Access provided participant information sheets and consent forms to the families who met the inclusion criteria and were directly involved with the therapists between December 2006 and June 2007. The signed consent forms were then collected by the interviewers (FJ and RdM), who contacted the families to arrange an interview at a mutually agreeable time and place. Both the parents and the children with JIA were interviewed. Interviews with one or both parents were conducted in the family home. The child was interviewed concurrently in another room, using an alternative interview protocol (see De Monte et al 2009). The parent interviews lasted approximately one hour on average and ranged from 40 to 90 minutes. The interviews were audiotaped and transcribed verbatim in a de-identified manner.

*Source: Based on: Hackett J (2003) Perceptions of play and leisure in junior school aged children with juvenile idiopathic arthritis: what are the implications for occupational therapy? British Journal of Occupational Therapy, 66(7), 303-10.

Rigour In qualitative research, the researchers’ stance is declared to ensure that any researcher bias is transparent (Krefting 1991, Cook 2001, Patton 2002, Avis 2005). The third author only had previous knowledge of the participants as their occupational therapist and hence was not involved in data collection or analysis. Both FJ and RdM, honours

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students, conducted the research interviews. As project supervisor and experienced occupational therapy researcher, SR supervised the project and undertook peer checking of the analysis. Rigour was facilitated during data collection and analysis using a number of standard qualitative strategies (refer Table 2, Krefting 1991). First, detailed information about the participants is presented to facilitate readers’ ability to make decisions about the relevance to their client groups. Secondly, a field diary was kept throughout to enable the interviewers to reflect upon the primary observations of each participant. An audit journal was kept to document decisions made during the analysis phase. Thirdly, member checking was performed in two stages. A summary of the transcribed interview was mailed to each participant to enable verification of factual accuracy. Five (39%) signed summaries were returned, with none reporting discrepancies. During the second stage, an overall interpretative summary was posted or emailed to participants once the authors felt that they had captured the key themes from the transcripts to verify the authors’ interpretations of the emerging themes. No signed interpretation summaries were returned. A follow-up telephone call to approximately half of the families who did not return any summaries suggested that failure to return the summaries was unrelated to disagreement with the themes presented. Table 2. Strategies utilised to establish rigour (Krefting 1991) Strategy Criteria Data Data collection analysis Credibility...........Reflexivity (field journal).....................✓...............✓ ....... Triangulation with child data..............× ...............✓ ....... Member checking ..............................✓...............✓ ....... Peer examination ...............................× ...............✓ ....... Interview technique ...........................✓..............n/a ...... Transferability .....Thick description of sample ................✓..............n/a ...... Dense description of research methods ............................................✓...............✓ ....... Triangulation .....................................× ..............✓1 ...... Peer examination ...............................× ...............✓ ....... Code-recode procedure.....................n/a..............✓ ....... Confirmability.....Confirmability audit/ field diary ..........✓...............✓ ....... Triangulation ....................................× ...............✓ ....... Reflexivity .........................................✓...............✓ ....... Peer checking ...................................n/a..............✓ ....... n/a = Not applicable. 1Triangulation with parent and child data (see De Monte et al 2009).

Findings Four key topics were addressed in the parent interviews. First, all parents described the difficult process of learning about the child’s diagnosis. Second, the parents described the implications for community access and participation. Third, the parents described their child’s treatment regimens and, lastly, they discussed the impact of these regimens on their

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roles and relationships. Seven key themes transpired, labelled the difficult process of pursuing a diagnosis, the emotional toll, lack of community awareness, medications, exercises, life revolves around arthritis, parents’ relationship with their child and other family members, and parents and work. Despite the importance of recognising the implications of these themes in the lives of the participants, the purpose of this paper is to focus on the barriers and facilitators to participation in home exercise programmes. Participant quotes have been included to illustrate various themes and all participants were given pseudonyms.

Pursuing a diagnosis The diagnosis – the long haul Many parents indicated that it was a long and tortuous process for their child to be diagnosed with JIA, with one family reporting a protracted period of 7 years before a definitive diagnosis was achieved. This was found to have a significant impact on the child’s therapy needs and access to the required treatment. For example: … So in the end we demanded a referral to [large children’s hospital] because we said she hasn’t been walking for six months and when you’ve got such an active child who isn’t walking. After a bit of an argument we got the referral … they wrote a letter to the specialist to say another 6 months and this child would have not been walking permanently. (Sabrina.)

Emotional response to diagnosis Initially, the majority of the families indicated that they felt ‘devastated’, ‘disbelieving’, ‘helpless’, ‘out of control’ and ‘overwhelmed’ when their child was diagnosed. Comments such as ‘Why us?’ and ‘Did I do something wrong?’ featured predominantly. Some parents indicated that it was difficult for them to absorb what was required from them to care for their child as a result of being so overwhelmed. This was described well by Petra: Less information at once … I was finding it was information overload, and every time a therapist came there was not just one thing to do, or think about, there was between 10 and 20 new things to think about … we lost that information you know, just didn’t take it all in. And in a house where huge changes need to be made, we’ve gone from me working full time to me not working at all, and we had to buy [her] new beds and everything … I understand that they were being professional and want to make sure you’re informed, but in that 6 months I was still just trawling through the fact that my daughter had arthritis and she was really sick, and coping with the fact that she was going to be on medication long term.

Community access and participation Lack of community awareness All parents commented on the lack of knowledge in the community regarding JIA. At times, this created difficulties

Fiona Jones, Sylvia Rodger, Sarah Broderick and Rachel De Monte

for families in accessing the treatment, resources and facilities required to participate effectively in home exercise programmes, including hydrotherapy: When she was diagnosed, the doctor. said to us, ‘take her to the pool, in [regional city], because it’s heated’ … So we said we want to take [her] to the pool, but she said ‘oh no, we don’t have kids. They don’t have arthritis. Kids are not allowed to.’ (Ray.)

Life revolves around arthritis Many parents felt that their home life revolved around managing the arthritis in order to lead a ‘normal’ life outside the home. In order for the child to engage in activities outside the home, there was a need for planning and organisation by the parents to enable things to run smoothly and for the arthritis-related treatments to be confined to the home environment. For example: It dominates our life. But to have a normal life where we can socialise and when [she] leaves the house she can be like a child that’s not affected so much with the arthritis, if you know what I mean, it means that almost every minute at home we’re looking after her arthritis, so when she goes out the door she can do stuff her peers do. (Petra.)

Treatment regimens Two key treatment components of medications and exercises were addressed. All the children were on a range of medications and had been prescribed exercise programmes. Further details regarding specific treatment regimens are reported in De Monte et al (2009).

Medications and splints In many cases, it took a long time to sort out the most appropriate type and dosage of medication for the child’s arthritis. Significant side effects and poorly managed pain were noted in some circumstances, which affected the child’s ability to participate fully in other treatment activities (for example, exercises) and daily life. The parents reported that older children (children over 12 years) often adapted their medication and splint use according to the fluctuations experienced. Day splints were more likely to be worn while many parents indicated that night splints affected their child’s sleep because the child was uncomfortable and hot. These were common issues with the Queensland climate. The functional limitations imposed by the wearing of splints were also raised as a barrier to the use of splints, particularly those worn at night: … if he wants to wake up and go to the toilet, instead of being able to just go to the toilet himself, he usually has to come and wake us up. And you know yourself, if you wake up, you leave it to the last minute and so it’s ‘Quick! Quick! Get going!’ Trying when you’re half asleep yourself, trying to undo his splints. (Bridgette.)

Exercises Occupational therapists and physiotherapists prescribed exercise programmes. These varied considerably from suggestions ‘to keep moving’ to specific written sets of exercises with diagrams. These often involved upper limb exercises for all joints and may have taken from 15 minutes to 2 hours to complete. The latter were not ever undertaken by the children. Those lasting under half an hour were more readily completed. Parents identified both facilitating and limiting factors to exercise completion. The factors that facilitated children’s participation in prescribed exercises included the whole family doing the exercises together, doing the exercises when it was convenient (such as when watching the television), breaking the exercises into smaller periods of time, incorporating the exercises into everyday tasks, the child doing the exercises at school with the whole class and varying the exercises regularly. One parent advocated for weekly therapy home visits over 3 weeks to oversee the new exercise programme whenever a new set of exercises was prescribed. Obvious improvements in physical ability and fitness were found to be a significant encouraging factor, for example: I think it was because she found … she actually improved. She could see a big difference to her life. (Tegan.)

Viewing the exercises as part of the child’s daily routine was found by many families to assist in ensuring that the exercises were completed. Petra reported: Well they don’t fit into our routine now, they are part of our routine. So I guess they’re easier because they’re just part of life, like having a shower, it’s just something that’s not negotiable.

Learning the value of exercising from previous experience and assisting the child to understand the rationale behind the programme also had an impact on the parents’ ability to encourage their chid to participate. Some illustrative quotes include: … the exercise programmes are really important. You know the difference between when they’re doing them to when they’re not doing them, you really do notice a difference. She knows herself when she’s not doing them and she’s really sore. (Sabrina.) We had a period where [she] refused to exercise every day, and she knows from experience now how much that it does help, particularly her neck exercises. So we just talk about that when she’s doing them, that this is a pain, this hurts, and this is uncomfortable and yes, she’d prefer to be sitting in front of the TV right now, but if she doesn’t do this then she won’t be able to sit up tomorrow and hold her head up, so you know, it’s just I guess, it’s just talking about the realities of why we do it. (Petra.)

The limiting factors included the child’s experience of pain, the child not wanting to be different, lack of time, parent

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or child fatigue, no immediate or visible improvements, the exercises being boring, feeling as though siblings are being neglected and difficulty accessing services (such as hydrotherapy): I think just that there are so many other things that a kid would rather do than have to stand still or line up with a sibling and her mother to do exercises for something that drives her nuts anyway and she hates to pieces you know … Anything that tends to be this is for you because you’ve got arthritis, she jams up with it. It just doesn’t seem fun. It seems like work, because she hates to do it you know. Even this [holding theraputty], if this was a ball of clay in a glitter egg shaped container, she’d have it out every other day. As it is, it sits in her drawer like that. (Jasmine.)

For exercises that were not part of a lifestyle change, such as going to the gym, it became difficult for the parent and child to maintain an interest in participation. A preference for everyday activities was found to be both a facilitating and a limiting factor, determined by the type of exercise given. Several parents also found that their child would avoid physical activities that he or she could not do as well as his or her peers. At times, this led to reduced opportunities for joint movement and physical exercise. He won’t swim because he’s slow … His body just didn’t go that way. And that was the last time he did it … But he does love to ride his bike. A lot of freedom, headspace, and to be with his mates, and he’s just as good. (Hayley.)

Impact of treatment regimens on parents’ roles and relationships Parents’ relationship with their child The increased involvement in their child’s life, through taking on responsibility for medication, exercises, splinting, teaching and transporting their child to appointments appeared to lead to conflicting roles that had an impact on the parents’ relationship with their child. Nicole summed this up; So I have found that very taxing throughout the years, because I mean I’m mum, nurse, doctor, psychiatrist trying to deal with her emotions, physically and emotionally and all that kind of stuff …

The parents were divided as to whether they felt that they had a closer relationship with their child or that they had lost part of that bond as they were no longer just a parent. Either way, the presence of JIA had an impact on their relationships with their children. Katherine indicated, ‘I was a lot closer to [her] before whereas now I’m a nurse figure rather than a mother figure.’ Some parents described increased dependency between child and parent: I think it’s brought us closer together and I have to be careful because she can get quite dependent on me. When we first came out of hospital, when she first got sick, you know, she

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wanted to sleep in bed with me, she wouldn’t leave my side, and we actually ended up having to go and see, we had to get her some counselling to work through that. So it has brought us closer together, but I have to be careful not to get too close. (Jodie.)

A number of parents noted that their relationship with their child varied due to the emotions involved with their child’s care, particularly when they felt they were ‘inflicting pain’ during treatment: I mean, the emotions are once again varying, because you know you can feel angry because you think, I’m only trying to help you so just have it or whatever. Then you think ‘oh you poor darling’, because your average 9 year old doesn’t have to go through all of this that you’re going through. (Nicole.)

Parents’ relationship with other children and spouse Although this was not the central focus of the interviews, the impact on siblings was raised by a number of parents, particularly related to parental feelings of neglect: We had a little bit where I don’t know, I think they thought I was spoiling her or something. And I did feel that I was neglecting the other kids, because I did spend a lot of time with [her] in the beginning. (Jodie.)

The relationship between the parents of a child with JIA was affected at times, particularly in relation to difficult treatment choices or regimens that caused distress to the child. Several parents mentioned: We took it out on each other really. Whenever he was having a really bad time, we found we took it out on each other. (John.) I think mainly my hardest times have been where I’ve needed to administer the medication to [her] and hubby gets so emotional and he thinks it’s not fair that I’ve got to force her to have it. (Nicole.)

Parents and paid work The majority of parents who worked part time or had regular access to family support found that they were able to continue to work. Many parents reported difficulties in continuing work or accessing the type of position preferred due to the necessity for flexible work hours and carer’s leave to attend to the child’s health issues, such as weekly hydrotherapy appointments. I’ve probably found it quite hard because I’d wanted to go back to work and honestly it’s hard to find a job when I don’t know you know, she’s still sometimes has days off school if she’s feeling sore throughout … (Jodie.)

The unpredictable nature of JIA created difficulties in planning alternative arrangements to care for their child or to pick them up early from school. This influenced the ability of parents to maintain their current employment and social lives:

Fiona Jones, Sylvia Rodger, Sarah Broderick and Rachel De Monte

We went from me working full time to part time, then I started working relief and then, because [she] was having so many days off school and it was so unpredictable you can’t tell tonight whether she’s going to be ok tomorrow or not. And because I’m not working, that’s impacted on our budget, and how much adult interaction I have. I think that’s the biggest impact but I feel some weeks that my whole life revolves around [her] arthritis. (Petra.)

The majority of parents commented on the financial burden associated with JIA, particularly in relation to purchasing medication and equipment for their child’s exercises. Access to a health care card, carer’s payment or government-funded medication appeared to reduce the financial stresses, whereas difficulty with work arrangements and Australian residency was a limiting factor for several parents.

Discussion The purpose of this research was to describe parents’ perspectives regarding living with a child with JIA and, in particular, their children’s participation in prescribed treatment regimens, such as home exercise programmes. Consistent with previous literature, it was evident that the additional responsibility and demands on parents who have a child with JIA affected parents’ participation in a range of activities, particularly paid work. These findings are consistent with Barlow et al (1998), who noted that on a daily basis, the parents of children with JIA may be obligated to manage the complex physical, psychological and social needs of their children, commit time to health regimens, constantly monitor their child’s condition, take their child for treatments and tests that the child might find distressing, and tolerate the child’s frustration and anger. This often leads to changes in occupational roles, levels of emotional strain, practicalities of managing current occupational roles and fatigue, as supported by Barlow et al (1998). In the present study, the difficult process of obtaining a diagnosis and the related emotional toll had an impact upon parents’ ability to access the necessary information, services and supports for their child in a timely manner. These pharmacological and exercise regimens are considered to have an impact on parents’ roles and relationships both with their child and significant others, as well as these regimens being influenced by parents. Schanberg et al (2003) suggested that the predictors of reduced participation by children in JIA treatment regimens include parental health beliefs, parent and child coping, parents’ emotional state, children’s stressful events, child’s mood and parent and child demographic variables (Varni and Wallander 1984, Jerrett 1994, Williamson et al 2002, April et al 2006a, 2006b). Side effects, poorly managed pain, altered sleep patterns and decreased ability to participate in daily activities for the child were found to impact

significantly on the ability of the parents to work and maintain positive relationships with their family and friends. Family support is regarded as a crucial factor in participation in health care programmes for children with JIA. Families who experience optimal levels of cohesion and demonstrate good adaptive functioning and coping skills have been found to have increased compliance with these regimens (Varni and Wallander 1984, Kyngäs 2000, Rone-Adams et al 2004). The parents’ altered perception of their roles and the difficulties in adjusting to life changes once a child is diagnosed with a chronic disease have been well documented (Timko et al 1993, Jerrett 1994). These findings are congruent with the perceptions of parents interviewed in this study. The presence of JIA was found to have an impact upon parents’ relationships with their children in one of two ways. The parents either felt that they had a closer relationship with their child or, alternatively, felt that the additional roles they undertook as a result of the child’s arthritis intruded on this relationship. The issue of child dependency on the parent was also reported by Barlow et al (1998). They noted reduced opportunities for peer involvement due to compliance with health regimens, which may impede normal development of autonomy and independence, thereby having an impact on the relationship of the parent with the child. It has been suggested that the relationship between the parents and the child with JIA has a greater impact on determining outcome than the disease status itself (Frank et al 1998). Parents must balance family and work commitments and ensure financial stability to meet the costs incurred during the care of a child with a chronic illness (Barlow et al 1998). Difficulty in continuing work, planning alternative care arrangements and accessing preferred levels of employment were noted in the current study, which may also have corresponding effects on the financial stability of the family. A summary of the factors that facilitated participation in exercise programmes from the parents’ perspectives and barriers to overcome these are presented in Table 3. These are discussed further in the clinical implications section.

Clinical implications The following clinical recommendations to improve participation in home exercise programmes for children with JIA are proposed based on the present findings. First, encouraging engagement in everyday, peer-accepted physical activities, such as gym programmes, riding a bike or swimming, is recommended. These physical activities enable social and physical interaction in a noncompetitive manner and may assist the lifestyle change required to engage in exercises appropriate to the condition for a prolonged period. Ehrmann Feldman et al (2007) noted that moderate to high adherence to exercise was associated with improved parental perception of improvement, and better functional status and pain rating. Second, if arthritis-specific exercises are recommended,

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Table 3. Facilitators and barriers: parents’ perspectives Facilitator ■ Programme lasting less than 30 minutes Exercise-specific factors ■ Whole family doing the exercises together ■ Breaking the exercises into smaller chunks ■ Incorporating the exercises into everyday tasks ■ Doing the exercises at school with the whole class ■ Varying the exercises regularly ■ Viewing exercises as part of the child’s daily routine ■ Associated with lifestyle (for example, gym) Family-centred practice

■ ■ ■

Factors influencing the ability of parents to encourage participation

■ ■

■ ■ ■ ■

Assisting parents to identify improvements in their child’s physical ability and fitness Regular follow-up with parents Assisting parents to explain confidently the rationale behind the exercises to their child

■

Access to social supports Family-friendly employers

■

■

■ ■ ■ ■ ■

such as active or passive ranging or strengthening of specific joints and associated muscle groups, less than 30 minutes for each session is suggested based on parents’ comments regarding the willingness and ability of the family and child to incorporate such exercises into their daily routine. Third, developing parents’ and children’s knowledge about JIA and the rationale for exercises is likely to be important to equip parents to adapt their child’s exercise programme to accommodate fluctuations in disease severity and pain. Improved knowledge would also enable parents to vary the exercises or select other appropriate everyday activities. This may be more engaging and empowering for the parents than traditionally prescribed exercise regimens, and further enhance collaborative relationships with treating therapists. Novak and Cusick (2006) suggested that home programmes are more comprehensive than ‘home visits’, ‘home treatment programmes’ and ‘therapy in the home setting’. Rather, they are interventions specifically created for implementation in the home and context of family life. Home programmes are considered an essential technique in family-centred practice to facilitate the ability of the family to achieve the desired outcomes for their child. In family-centred practice, home programmes are directed and evaluated by parents who have developed the necessary competencies through interaction with therapists and other service providers (Novak and Cusick 2006). Therefore, home programmes can become a tool that reflects a shift from traditional parent-therapist relationships towards an interaction in which the therapist contributes expert knowledge to enhance caregiver competency in collaboration with parent expertise regarding their child and

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Barrier Child’s experience of pain Child not wanting to be different Exercises viewed as boring No immediate or visible improvements

Difficult for parent and child to maintain interest in participation if exercises not part of lifestyle Rationale poorly understood

Lack of time Parent or child fatigue Feeling as though other children are being neglected Difficulty accessing services (for example, hydrotherapy) Lack of community knowledge (including among general practitioners) Financial stressors and work obligations

family circumstances (Novak and Cusick 2006, Rodger 2006). The education /information needs of the family, therefore, must be addressed to facilitate optimal management of JIA within the home context. Group education sessions may be beneficial to develop parent knowledge and skills through sharing relationships and exchange of parental expertise (Rodger 2006). Fourth, the implementation of family-centred home programmes may also be enabled through setting up more frequent appointments initially, each for a shorter period of time with paced information provision, to assist parents in understanding the rationale behind the exercises and the manner in which they are to be performed. Fifth, regular home visits may be a useful tool in providing information that is contextually relevant to the home environment and appropriate within the family resources. Finally, a need for the early identification of JIA was noted to facilitate access to appropriate services. As such, increased awareness of JIA within the community and among general practitioners and other health professionals is required.

Limitations and future research The limitations of this study must be acknowledged. Single, in-depth interviews were used to determine the experience of parents who have children with JIA. Although two stages of member checking were employed, prolonged engagement with the participants may have facilitated a deeper appreciation of the parents’ experiences. While comparable to other qualitative studies of parents with JIA with sample sizes ranging from 13 to 50 (Barlow et al 1998, April et al 2006a, 2006b), the relatively small sample size indicates a need to draw conclusions cautiously.

Fiona Jones, Sylvia Rodger, Sarah Broderick and Rachel De Monte

The low participation rate of fathers in this study may not accurately reflect the views and influence of JIA on fathers and the implications for their children. Timko et al (1993) demonstrated that fathers’ risk factors contributed to the outcomes of the child independently from those of the child’s mother. Future research related to the participation in and efficacy of engaging in everyday physical activities managed by families (such as attending the gym, walking, swimming and hydrotherapy) as opposed to prescriptive exercise routines would also be valuable. The value of exercise programmes modified in accordance with the findings of this study and the corresponding impact upon participation also warrants investigation. Finally, the long-term impact of engaging in home exercises on children with JIA in terms of joint range, muscle strength, contracture prevention, pain, fatigue and general mobility is not known and warrants investigation using longitudinal designs.

Conclusion Home exercise programmes are considered essential in the management of JIA and are congruent with familycentred practice. The importance of understanding the factors influencing parents’ ability to facilitate their child’s participation in home exercise programmes cannot be overestimated. From the results of this study, it is noted that a shift from ‘traditional’ home exercise programmes is required to align with family-centred practice guidelines and encourage the integration of exercises into daily activities and family routines. While recommendations for increasing the clinical utility of home exercise programmes have been proposed, further research is required to determine the efficacy of these in practice. The challenge for the future is to develop empirically based clinical guidelines for occupational therapy home programmes for children with JIA that support family-centred practice. Acknowledgements The authors wish to thank the occupational therapists at Montrose Access for their support. Sincere thanks are also extended to the parents who so willingly participated in the study and shared their experiences with us. References Akikusa JD, Allen RC (2002) Reducing the impact of rheumatic diseases in childhood. Best Practice and Research Clinical Rheumatology, 16(3), 333-45. April KT, Feldman DE, Platt RW, Duffy CM (2006a) Comparison between children with juvenile idiopathic arthritis and their parents concerning perceived treatment adherence. Arthritis and Rheumatism (Arthritis Care and Research), 55(4), 558-63. April KT, Feldman DE, Platt RW, Duffy CM (2006b) Comparison between children with juvenile idiopathic arthritis (JIA) and their parents concerning perceived quality of life. Quality of Life Research, 15, 655-61.

Key findings In order to maintain children’s and families’ participation in home exercise programmes, parents recommended: ■ Peer-accepted lifestyle activities of less than 30 minutes ■ Mechanisms to identify improvements ■ Adaptation of exercises according to the child’s current health status. What the study has added This study provides insights into factors that encourage ongoing participation in home exercise programmes for children with JIA to ensure effective management of the condition.

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Focus on research Theses donated to the COT Library are available for loan, but are not downloadable. Please contact the Library for details. Julie Morrow An exploration of aspects of emotional holding and containment within therapeutic relationships in an occupational therapy setting. University of Northumbria at Newcastle, 2005. MA in Psychoanalytical Observational Studies.

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This piece of research demonstrates how an understanding of psychoanalytical theories around holding and containment can contribute to an increased awareness of the processes at work in the unique relationship between child, occupational therapist and activity. It focuses on aspects of emotional holding and containment evident during occupational therapy sessions involving three young people with mental health difficulties accessing a tier four child and adolescent mental health service.