Institute of Child Health, University of Birmingham, Birmingham, UK.
Correspondence to: J. E. McDonagh, Institute of Child Health, Diana, Princess of Wales Children's Hospital, Steelhouse Lane, Birmingham B4 6NH, UK. E-mail: j.e.mcdonagh{at}bham.ac.uk
![]() |
Abstract |
---|
![]() ![]() ![]() ![]() ![]() ![]() ![]() |
---|
Methods. A qualitative study using focused group discussions was performed. Groups comprised (i) adolescents with JIA aged 1218 yr, (ii) young adults with JIA aged 1930 yr, (iii) parents of adolescents with JIA, and (iv) parents of young adults with JIA.
Results. Transitional needs included aspects of participants physical, social, psychological and vocational lives. Participants (n = 55) called for developmentally appropriate care based upon shared decision-making, continuity of health professionals, and wider access to information and community services. Suggestions for improved care included individualized assessment of patient's holistic needs and increased transfer preparation.
Conclusions. These results provide a useful guide to transitional care and suggest an approach that is adolescent-focused and evidence-based.
KEY WORDS: Juvenile idiopathic arthritis, Adolescence, Transition, Focus groups.
![]() |
Introduction |
---|
![]() ![]() ![]() ![]() ![]() ![]() ![]() |
---|
The difficulties faced by young people with chronic illness and/or disability have been reported in several studies [14, 15], as has the suboptimal provision of appropriate services [16, 17]. Limited evaluations of coordinated transitional care programmes support beneficial outcomes in a number of chronic diseases, including JIA [14, 18] and cystic fibrosis [19, 20]. However, a recent commissioned review of transitional care practice reported a paucity of high-quality research in this area [21] and there remains a need for further research using validated methods to provide a strong evidence base on which to formulate a strategy for transitional care. It remains unclear which aspects of JIA are most salient to adolescents and their families, and what priorities they have for their transitional health-care. However, the need to incorporate user perspectives in the development of health services is increasingly espoused [22], particularly in relation to adolescents, who are now defined as a specific client group with specific health-care requirements [23, 24]. Indeed, discrepancies between adolescents actual health concerns and professional agendas for young people are well documented [14] and there is a real danger that the marginalization of young people's views may result in policies and practices that have little meaning for those they are intended to benefit. Reflecting this, the aims of this study were: (i) to gain insight into and understanding of the transitional health-needs of adolescents who have JIA and their parents, and (ii) to explore how these needs could be met within a structured programme of transitional care.
![]() |
Methods |
---|
![]() ![]() ![]() ![]() ![]() ![]() ![]() |
---|
Participants
To reflect national variations, a total of 11 focus groups were held in three geographical regions (Northern England, the Midlands and Southern England) and consisted of four groups: (i) adolescents with JIA aged between 11 and 18 yr; (ii) parents of adolescents with JIA; (iii) young adults with JIA aged between 19 and 30 yr; and (iv) parents of young adults with JIA (except for the Northern group, where the latter group could not be recruited).
Participants were recruited using a two-phase process. First, eligible patients were randomly selected from the databases of participating hospitals and invited to participate by letter. Secondly, individuals were purposively selected from the list of interested respondents to include male and female participants and reflect diversity of ethnicity, socio-economic background, age range, JIA onset, disease severity, and disease duration. The rationale for this was to provide sufficient variation among participants to allow for contrasting opinions. Ethical approval was obtained for each region and written consent was obtained for all participants.
Procedure
The procedure of the focus group was explained to all participants and a set of questions was given to each individual as a means of generating discussion around the topics of interest: (i) areas of transitional need; (ii) the provision of information, advice and support; (iii) delivering teenage-friendly care; and (iv) transfer to adult services. Discussions were facilitated in a non-directive manner by a moderator and were audio-recorded. The same moderator (KS) was used for the adolescent and young adult groups. However, local researchers were used to concurrently moderate the parent groups. Each group lasted approximately 120 min, and at the end of each discussion a summary of results was read back to the group to enable participants to verify, amend and prioritize emergent issues.
Analysis
The audiotapes were transcribed verbatim and analysed with close reference to the audio recordings to minimize decontextualization of the data. The process of analysis followed the steps recommended by Krueger [25], and used interpretative phenomenological analysis (IPA) [28]. In accordance with this approach, it was necessary to consider how personal beliefs and experiences may bias interpretation of the data and to set these aside during moderation of the groups and analyses. Thus, prior to data collection the researchers tried to suspend (i) beliefs that adolescents with JIA have needs that are unique to their developmental status; (ii) beliefs that JIA influences the physical and psychosocial lives of adolescents with JIA; and (iii) personal memories of previous interactions with young people who have arthritis and their family members.
Analysis adhered to rigorous procedures that enabled themes and categories to be generated from the data through processes of induction (i.e. moving from the data towards generalizations, hypotheses, or theory). Each transcript was repeatedly read, annotated and coded to reflect their assignment to emergent content and conceptual themes. A middle-order approach [29] was used, and primary attention was thus directed at identifying broad categories of data. Each of these were ascribed a concept label to reflect the essential quality of the phenomena in question. Data were subsequently re-analysed to consider further levels of classifications. The aim of this was to develop subcategories that sufficiently discriminated between different aspects of the data. This approach was possible because the data were not entirely lacking in structure. Indeed, whilst this study was largely exploratory, the focus groups were designed to generate data in relation to specific research objectives. Thus, whilst analysis of the data could not be completely grounded in theory, these objectives provided a clear source of categories with which to organize participants responses.
To ensure trustworthiness, the data relevant to each category were identified and examined using processes of constant comparison (i.e. checking data to examine similarities and difference between concepts) and negative case analysis (i.e. looking for cases that seem to contradict the emerging explanations of the phenomena under study). Analysis of the data was also reflexive, in that the data were repeatedly re-examined in the light of new emerging themes. After analysing each transcript in succession, the results of all were considered as a whole to gain greater insight into the fuller picture of transitional care in JIA.
The themes and the issues raised within the focus groups are exemplified in the quotations used in the following sections. However, the names of all participants have been removed to conserve anonymity.
![]() |
Results |
---|
![]() ![]() ![]() ![]() ![]() ![]() ![]() |
---|
|
Focus group results
Analyses of the data revealed many themes. The following section describes those that were most recurrent and strongly expressed. These were concordant across the different geographical areas. That is not to say that all participants gave evidence of every theme. The authors did, however, discern common patterns of meaning both within and across the groups and these made sense as statements about the meaning of JIA and users beliefs about transitional care.
Transitional care
Participants recurrently called for a programme of transitional care that is (i) multi-dimensional, (ii) coordinated, (iii) supportive, and (iv) developmentally appropriate and age-appropriate.
A multidimensional programme of care
The central tenet of participants discussions was the need to minimize the impact of JIA within the context of their everyday lives. Consequently, they called for transitional care that reflected the following issues.
A coordinated programme of care
In meeting these needs, participants stressed the importance of adopting an individualized approach based upon regular assessments of the adolescent's disease status, developmental level, life events and personal aspirations. Reflecting the multidimensional nature of JIA, transitional care was thought to be best provided by a multidisciplinary team that had specialist knowledge about JIA and strong inter-agency links. They stressed the need for earlier referrals, increased coordination between professionals (including general practitioners and school teachers) and greater signposting of information. There was considerable confusion about whom to contact in a crisis and participants felt that assignment of a named coordinator or key worker could resolve this.
A supportive programme of care
Participants valued professionals who were supportive. Trust was a recurrent theme and represented an important prerequisite for adolescents to discuss age-related concerns. This was largely demonstrated through the interpersonal relationships of professionals with patients and their parents and participants valued communication that was honest, realistic and jargon-free. Adolescents also commended health professionals who made efforts to lessen the inequalities between them by making the environment less formal, asking about the non-medical aspects of their lives and sharing personal information. Another key factor in developing trust was continuity of health professionals at every hospital visit:
If youve been with them a long time, the same person, you get a little bit of attention, and you do ask more questions, but ... when youre jumping from pillar to post, like I was seen by six doctors in one year, then I just didnt want to talk to them, but if you stay at the same doctor you tend to get a bit closer, to open out. (Adolescent)
Unfortunately, trust was often eroded by the presence of strangers within consultations (e.g. medical students) and signalled to young people that clinic appointments were not intended for their benefit, but for that of professionals. The inclusion of strangers was considered an invasion of privacy and a threat to confidentiality, and it inhibited communication. It was particularly disconcerting for young people if strangers sat silently in the background without contributing to the consultation. Not only was this considered discourteous, but added to patients self-consciousness:
You dont want some young lad doctor there when youre having a fat day and youve got to get down to your undies, do you? (Young adult)
Consent to include strangers was usually sought. However, young people reported that this typically happened as they physically entered the examination room, which made it difficult to refuse. Participants suggested that it might be more appropriate to seek permission whilst in the waiting room and suggested that strangers attended only an agreed portion of the appointment. Many felt they would be happy to be a case study in a learning environment but were less happy to be a case study during their own appointment. The inclusion of familiar team members was more acceptable and in several cases, was beneficial by providing young people with the opportunity to continue discussions after the consultation.
A developmentally and age-appropriate programme of care
Adolescents transitional needs related to either the impact of chronic illness upon the normative tasks of adolescence, or the impact of adolescent development upon adolescents adjustment to JIA. Consequently, participants felt that a programme of care should be developmentally and age-appropriate. Key issues included (i) age-appropriate facilities, (ii) adolescent-focused information, and (iii) patients increasing needs to manage their own health-care.
Age-appropriate facilities. Participants asked for adolescent-focused clinics, wards, and waiting areas. They felt that dedicated adolescent areas would help young people to feel less isolated in their experience of JIA and facilitate peer support:
It's all for babies and kids ... when you get to your teens, you dont want to see the teddies and rattles and dolls. (Adolescent)
Participants also asked for more control and flexibility in appointments to minimize the impact of absenteeism at school and work. Young people, particularly, suggested that drop-in clinics might help improve patient attendance and provide opportunities to discuss pressing issues and for independent visits.
Adolescent-focused information. Participants called for information that addressed the issues detailed in Table 1 and stressed that their requirements should be reviewed regularly. However, whilst young people felt that neither parents nor professionals should act as gatekeepers, several parents felt that they, the parents, should decide when it was appropriate to disclose certain information (e.g. side-effects of medication):
I think that you should give the information to teenagers actually instead of talking to parents all the time ... I think it is important that young people are told as soon as possible what their medication is, what treatments are, what's happening with them because otherwise you go at 14 and 15 years old and havent got a clue what drugs theyre on or anything like that. (Young adult)
In the provision of information, participants felt it was important to include multiple methods, including face-to-face discussions, group education, written material, videos and telephone helplines. The use of websites was particularly popular, providing adolescents with a more anonymous means of seeking information. Participants also felt that similar others provided a valuable source of support and information. It was felt that adolescents may particularly benefit from peer support and several participants suggested that peer educators or mentors could provide positive role models:
Id like to have talked to other teenagers about the problem, because youre just sitting in a waiting room with 80-year-old women, and Im not being funny but you know you felt like a freak. (Young adult)
View this table:
[in this window]
[in a new window]
TABLE 2. Areas of impact to be addressed within a programme of transitional care
Patients increasing needs to manage their own health-care. Young people felt that it was important that health professionals address them rather than their parents and found it frustrating if, after directing questions to adolescents, health professionals confirmed their responses with parents. This suggested that health professionals did not believe them and did not respond to their growing needs for independence:
I dont know why they ask parents, it isnt parents that have got the arthritis. (Adolescent)
Many parents agreed with this, and acknowledged that they too had a responsibility to facilitate young people's communication:
They [parents] have to start letting them talk for themselves. You can still go in with them, sit back and let them talk. (Parent of young adult)
Adolescents and parents also stressed the importance of shared decision-making, and whilst young people appreciated that they did not always know best they felt that the provision of age-appropriate information would allow them to make sensible decisions. Many young people were unsure about their rights to accept or refuse treatment, but appreciated health professionals who sought their consent and respected their decisions:
You get really fed up of other people making the decisions because it is your body, and you want a say in it. (Adolescent)
Transfer from paediatric to adult services
Young people (and their parents) who had undergone transfer to adult rheumatology care described the process as sudden and ill-prepared:
All we got on her 16th birthday was, three days later, a letter which says You are now over 16. Youre discharged. (Parent of young adult)
The emotional consequences of this were evident in the language used by participants who described themselves as being abandoned by doctors and dumped thrown and tossed into adult services. The stress of transfer was felt most keenly by those whose care required a change in consultant and/or clinic and was particularly difficult for participants who had long-standing relationships with their health-care team:
Youre so connected up with the physios and people like that arent you? ... youre involved with the hospital from when theyre little children, right up until theyre 18, and then it's just cut like that. (Parent of young adult)
Concerns about transfer were many. Participants felt that the levels of expertise, empathy and resources were lower in adult services compared with those received in paediatric services. Participants were also critical of the coordination between services, particularly with respect to the handover of medical histories. Poor coordination had resulted in delays in transfer, cancelled appointments and discontinuation of care:
The children's ward wouldnt accept her because she was over age 16, the adult ward wouldnt accept her because she was under 18, and so we had hell-of-a-game trying to find a ward for her and in the end she ended up going on a geriatric ward for the night. (Parent of adolescent)They [the medical notes] were lost in transmission between the two hospitals, which meant cancellations of appointments ... In the last 4, 5 years, Ive seen Dr ... once. (Young adult)
A major shock for many young people was having to manage consultations alone. Many found this uncomfortable and parents expressed anxieties about their child's ability to use the consultation to their best advantage. Other anxieties related to the unfamiliarity of their surroundings and many young people found it extremely unsettling to find themselves in the company of a disproportionately greater number of older patients:
Youre sitting there looking at kids, and I can remember sitting, thinking, you know, youre so lucky compared to these people, and then suddenly being surrounded by these adults and thinking oh my God that's going to be me! This is going to be me in 20 years time. (Young adult)
Participants whose adult care continued to be provided by the same healthcare team expressed fewer concerns. However, many young people felt that professionals who had known them as children failed to see them as the young adults they now were and to respond to their changing needs. These participants also found it more difficult to be seen independently as there was no natural break in the status quo. It was also difficult for many participants to appreciate why they were no longer entitled to services previously offered by the paediatric team (e.g. hydrotherapy), despite remaining with the same consultant and within the same hospital.
Preparation for transfer
Preparation for transfer was seen as essential. Participants felt this should begin early and support young people in assuming the primary responsibility for their health-care and decision-making. It was particularly important for adolescents to be able to manage consultations alone and to be competent self-advocates:
Youve got to start getting teenagers going to their own clinics, and doing their own thing, by the time they get up there [adult service] without their parents or they just wont go. (Young adult)
Opportunities to be seen alone were thought to have many benefits. They not only promoted disclosure but also engendered feelings of increased independence and control:
Youd feel a little bit more independentthis is good because this is my body, it's my arthritis and Im talking about itand you havent got your parents there all the time. (Adolescent)My parents are quite cool; they ask Do you want us to come in? and I say No. Id rather go in by myself. because I feel that I achieve more by going in and talking to [the consultant]. If theyre there, [the consultant] just ignores me, talks to them and I just come out and dont feel anything's been achieved. (Adolescent)
Unfortunately, the transition from family-based consultations to individual consultations was not always easy. Some young people felt ill-equipped to manage consultations alone. Others relied upon parents to drive them to clinic and felt obliged, therefore, to allow parents into consultations. Young people also expressed difficulties in telling their parents that they no longer needed them in clinic, worried that they may hurt their feelings or appear ungrateful. Others, however, resented their parents involvement:
It's quite difficult, because my mom and dad have been great, really supportive, but there's times when you've been going to speak up . . . you think I just wish I'd come on my own. I'm like 19/20 years old now, I really don't need you to come and hold my hand any more. (Young adult)
Whilst most parents acknowledged that it was important for adolescents to be able to manage consultations on their own, nearly all felt that it was their responsibility to ensure that their child received the optimum health care. They acknowledged that they could sometimes take over during consultations, but felt that their children did not always present a true reflection of their current health status. It was felt that parental withdrawal from clinics should be a gradual process and could be facilitated by providing parents with concurrent opportunities to speak to health professionals. To be able to withdraw comfortably, parents wanted to be reassured that their child was being seen by competent health professionals and that they had the skills and confidence to manage alone:
I think you feel obviously as a parent it's your ultimate responsibility and I suppose no matter how old they get, theyll always be your child, and you feel as though, if youve let them go in that room on their own ... Im not doing 100% of what I should be doing because may be she's not said exactly everything that she should have said. (Parent of adolescent)
One of the key skills in managing alone was self-advocacy. Barriers to self-advocacy highlighted by the participants included young people's own lack of confidence, the inequality of status between adolescents and health-professionals (because of age, power, and authority) and poor communication skills on the part of health professionals. Participants appreciated health professionals who invited young people to share their views and concerns and helped them to articulate their needs. However, adolescents who tried and failed to assert themselves lost confidence and found it difficult to speak up for themselves on subsequent occasions. It was important, therefore, that health professionals listened carefully to what young people were trying to say:
You want to say all these things, but then you stop yourself and you think Youre just a teenager. (Adolescent)I think they need practice in that [self-advocacy]. I think it's good if they did have some time before we moved on when they worked at it, you know, be on their own and have to get the questions ready and organize themselves and it isnt easy. (Parent of adolescent)
While young people felt that transfer should be based upon individual readiness and shared decision-making, they had no firm ideas about the most appropriate time to be transferred. Parents, however, had more definite ideas. Most felt that 18 yr of age was probably the most appropriate time, as this coincided with other natural changes in their lives, such as leaving school and leaving for university. They also felt that it was important to transfer when their child's disease was well controlled. This caused less anxiety and several parents expressed a tendency to want to return to their paediatric team if they experienced a crisis soon after transfer:
Sixteen sounds ever so young to me. (Parent of young adult)If it [the arthritis] is still active and still ongoing it's no good them shutting the door on the paediatric service and youve got to start all over again in adult if theyre in the middle of a flare-up because you could wait months for your first appointment. (Parent of adolescent)
Another important element of transfer was the smooth transfer of information. Several suggestions were posed. Several wondered whether it would be feasible to send duplicate notes to the adult hospital. A popular suggestion was to allow adolescents to hold a copy of their own notes that they could take with them to their adult health team.
![]() |
Discussion |
---|
![]() ![]() ![]() ![]() ![]() ![]() ![]() |
---|
A multidimensional approach
A coordinated approach
Coordination of such an approach is likely to be critical and, as highlighted by this study, may benefit from the implementation of a key worker system. A key worker is a named person whom the young person and family approaches for advice about any problem related to the young person and who has responsibility for collaborating with professionals from their own and other services in the coordination of the care of the young person [37]. The use of key workers is proposed elsewhere [3739] and concurs with the transitional care recommendations in the UK [11] and the USA [13].
A supportive approach
Continuity between visits was a key factor in building trust and is likely to be echoed by many patients, regardless of their age. This is, however, particularly pertinent to the developmental stage of this age group as they gradually gain confidence to negotiate the health-care system themselves and is an important prerequisite for parents eventual withdrawal from their child's consultations.
Privacy within consultations
Preparing young people (and their parents) to eventually be seen independently is a practical aspect of providing patients with the opportunities to confide in health professionals. Several studies report that the majority of young people are not seen independently in adolescent rheumatology clinics [40, 41]. This is in contrast to their healthy peers, who, in the UK, are visiting general practitioners/family doctors independently by an average of 1415 yr [42].
This study also demonstrated that trust could be eroded by the presence of strangers in consultations, echoing a recent study of adolescents with a variety of chronic illnesses [43]. This certainly has topical ramifications in view of the increased numbers of medical school entrants currently being proposed in the UK [44]. The quality of informed consent described by some participants is certainly a cause of concern (e.g. the practice of asking the patient at the clinic room door whether they minded a medical student being present). A proactive approach could include clinic posters, inclusion in appointment letters, etc.
Interpersonal skills
Supporting parents
This study has highlighted the transitional needs of parents with JIA and supports the basic tenet that transitional care should be inclusive of the family. Arthritis presents stressors that occur in numerous and diverse social contexts, and family functioning relates to both concurrent [47] and long-term [48] adaptation of children and adolescents. However, parental issues were frequently reported by professionals as potential barriers to successful transition [33].
Parental expectations of their child certainly play a role in young people's long-term development and are frequently lower for children with chronic illness than those without [49, 50].
Adolescents can also be unintentionally undermined by members of the health team. This was exemplified by participants frustrations that, after directing questions to adolescents, health professionals then confirmed their responses with parents! The positive, affirming role of both the family and health professionals must also not be forgotten in our attempts to engender adolescent independence. Family connectedness, family role models, family concern for the well-being of the child and autonomy at home are all factors identified that foster resilience in children and should be encouraged [51], especially during adolescence and transition.
A developmental approach
The results clearly demonstrate that adolescents with JIA have needs that are unique to their developmental status. Unfortunately it seemed that that current health services often failed to appreciate their age-related needs and that a lack of adolescent resources perpetuated feelings of isolation and difference.
Adolescent facilities
The call for separate facilities for adolescent in hospitals is not new [52, 53]. Despite this, a recent audit of adolescent rheumatology service provision in the UK that showed that only 18% of units seeing children with rheumatic conditions had a dedicated adolescent clinic [8]. The need for longer appointment times in adolescent clinics to address all the issues raised by the participants in this study has been acknowledged recently [12]. Furthermore, designated adolescent clinics signal to adolescents that the staff are sensitive to their needs and that it is appropriate to discuss adolescent issues.
Adolescent-focused information
The user perspective will be crucial in planning optimal strategies to educate and inform adolescents with JIA. Attempts to engage young people may certainly require rethinking, as shown by a study in Germany in which almost half of the adolescents involved judged preformulated offers of informational support as unattractive to them [55]. Like the current study, Ullrich et al. [55] also found a preference for multiple methods of delivery. One popular suggestion in the focus groups was the use of the Internet, which is increasingly used by young people worldwide and may be of particular benefit for those with limited mobility. It also allows privacy and anonymity, often sought after by this age group. Internet use, however, is not without its problems, and ensuring safe sites for young people is imperative. Focus group participants also highlighted the positive role of meeting others living with JIA, and there is evidence that young adults with concealable stigmas can benefit from contact with similar others. Outcomes include raised self-esteem and mood, and thus may protect the psychological self from negative cultural messages [56]. Summer camps offer adolescents with chronic rheumatic diseases an opportunity to be outdoors, participate either as campers or counsellors and improve their self-image and locus of control [57]. In addition to physical and psychosocial benefits, the campers gain independence from parents and can meet new friends who may share their health-related problems. Increasing independence will in turn foster disease-management capabilities [57]. However, such a format is not for everyone [55]. Peer educators or mentors can also provide positive role models [58].
Patients increasing needs to manage their own health-care
Whilst information can increase knowledge, it is rarely sufficient for behavioural change. People also need the skills, confidence and opportunities to act upon their knowledge. Reflecting this, self-advocacy was seen as an important element of self-management and a prerequisite for transfer into adult services.
Consent, confidentiality and decision-making
Many young people in this study were unsure of their rights to confidentiality and to accept or refuse treatment, core knowledge in developing self-advocacy and shared decision-making. Health professionals have a legal duty of care towards young people and unlike consent, confidentiality is a right of all patients and does not rely on tests of competence. Research in the UK shows that young people rate confidentiality to be one of the most important attributes of adolescent friendly practice [59, 60]. A study of 1295 school students in the USA similarly demonstrated that 58% had health concerns they wished to keep private from parents, with 25% prepared to forgo some health-care situations if their parents found out [61]. However, paediatric practices have been reported to provide confidential services for young people less often than family medicine practices [62].
Professionals involved with such young people need to be fully aware of the legislation of decision-making in this age-group and to educate the young person and their parent(s) likewise. Difficulties can arise, as exemplified by some parents in this study, who felt that it is their responsibility, as parents, to decide when it is appropriate to disclose certain information (e.g. side-effects of medication). Conversely, most young people requested a complete explanation of prognosis and treatment options, even when negative aspects of JIA were concerned, which is concordant with previous findings [5663].
Transfer to adult services
Unfortunately, participants in this study frequently reported transfer experiences in negative terms, mentioning many of the specific issues discussed above; this is in agreement with studies of young people with other chronic illnesses and/or disabilities [15, 20, 64, 65]. It is important to emphasize that transfer is not synonymous with transition: it is simply one of many events during the much longer process of transition. The participants described many of the barriers to successful transition and transfer that have been reported previously [33, 45, 53, 66]. Recently, Scal [45] reported the four most significant barriers to transition for young people with special health-care needs in the USA to be (i) difficulty identifying adult primary care physicians, (ii) adolescent resistance, (iii) family resistance, and (iv) lack of institutional support. The unpredictability of JIA can further accentuate the negative effects of deficient transition planning. If transition is forced at a time when the young person is ill-prepared, their perceived lack of control and choices is further accentuated. Successful transition becomes less likely.
The data provide an evidence base for the principles of a good transition programme detailed by Viner [67] and reiterated in the Children's National Service Framework [11] and the Bridging the Gap document [12] (i.e. a preparation period and education programme, a coordinated transfer process, an interested and capable adult service and administrative support).
Limitations
Focus groups provide an efficient way to collect data from users' perspectives. However, there are a number of limitations that should be borne in mind. Firstly, the data relies upon participants' verbal reports and as such, may not reflect their actual behaviours or true feelings. The presence of others can certainly make it difficult to disagree with group norms or discuss sensitive issues. This said, the moderators saw little evidence of inhibition. Participants spontaneously raised a number of sensitive topics (including sexual health) and appeared comfortable in sharing personal experiences. Moreover, it seemed that participation in the focus groups could be a positive experience. Not only did participants appreciate the opportunity to inform research, but involvement in the groups also provided a forum in which they could exchange coping strategies and realize that they shared common concerns, challenges and experiences. In fact, several participants suggested that groups similar to these could benefit other families living with JIA and might provide a useful addition to current rheumatology practice.
Whilst the presence of others may inhibit some participants, there are also suggestions that the group dynamic may provoke more critical comments than individual interviews [68, 69]. As the aim of this study was to improve transitional care, it was deemed necessary to engender an environment in which criticism was permissible, and the group setting may well have fuelled participants anger and frustrations. However, this was balanced by an active focus on the exploration of solutions to problems and the positive aspects of care.
Another potential caveat concerns the constitution of the samples, which were small and may have been unrepresentative of their target populations on several dimensions. First, because the participants were volunteers and had no means of comparing their characteristics with those of non-responders, it was impossible to ascertain whether the samples exhibited characteristics that may have biased the results. Secondly, there was a female predominance. This is of some concern in the light of the outcome data of JIA in adulthood. Young adult males with JIA have greater difficulty than both healthy males and female patients in establishing relationships with the opposite sex, with a trend towards lower sexual activity [7]. A study of German adolescents with JIA also reported that the males felt less well informed about their condition than the girls [55]. This is against a background of increasing public concern regarding the health of young men [70]. With this in mind, further study of the impact of an often-female-predominant paediatric rheumatology multidisciplinary team upon the adolescent male patient with JIA is worthy of consideration. Thirdly, there was limited ethnic variation in the participants. In view of the likely ethnocultural implications for adolescent health, further research is required in this area. Fourthly, it was a predominantly urban population and the implications of living in rural communities could not be explored. Further research in this area would be of interest. Finally, while it was deemed important to include young adults who had already experienced transition and were now in adult care, this population is obviously biased to the more severe end of the spectrum, as those with mild and/or inactive disease would have been discharged. The participants are, however, representative of those most likely to need transitional care.
Summary
Many of the issues facing adolescents with JIA were not disease-specific and this study provides further evidence that many of these issues are generic to chronic illness during adolescence [15, 20, 65, 66]. Furthermore, the participants in this study echoed the suggestions of their healthier counterparts who, in addition to confidentiality, identified the availability of a special clinic for adolescents, telephone advice, written information, friendly staff and magazines as areas of importance for services in general practice [60]. Consequently, the results offer useful signposts for the care of all adolescents across specialities and constitute major learning objectives for all professionals involved.
The authors have declared no conflicts of interest.
|
![]() |
Acknowledgments |
---|
![]() |
References |
---|
![]() ![]() ![]() ![]() ![]() ![]() ![]() |
---|