Introduction

The management of chronic conditions (CCs) represents an important part of paediatric practice in Western countries and takes a particular form in adolescence [18, 36]. The health needs of adolescents with a chronic illness or a handicap are indeed linked to the illness they suffer from, to adolescence in general, and to psychosocial problems generated by the interaction between the illness, the adolescent and his immediate environment [41].

The international literature concerning CCs in adolescence highlights the importance of these pathologies to the practitioners, who rarely see these adolescents [11, 18, 21, 28, 43]. However, the prevalence of CCs in adolescence is not well known and varies considerably from one survey to another: most surveys suggest that around 10% of children and adolescents may be affected by a CC [2, 37]. Considerable variations in the definition of CCs and in the survey methods prevent international comparisons [6, 22, 32, 39, 44].

Several authors have suggested that recent progress made in prenatal and paediatric care has helped to improve survival of patients and therefore is responsible for a higher prevalence of CCs in adolescence [2, 3, 37]. This prevalence is important, as CCs have a high economic and social impact due to invalidity, or need for health care facilities which are sometimes highly specialised. This problem has become a priority on a public health level and needs to be carefully evaluated, particularly in Switzerland where few studies have been published.

Despite the highly specialised care available in Western countries, the facilities have not always been adapted to the adolescent's needs, considering that the CC affects the young patient in his global process of development. Adolescents affected by chronic illnesses or handicaps have to deal with the same problems and needs as all other adolescents, in puberty and sexuality development, in school and leisure time, in their relationship with peers, in life styles and risk taking, and in somatic health [41]. The results of some studies have shown that despite the feeling of overprotection and the urge to comply with treatment induced by the illness, adolescents affected by a chronic illness or handicap do not take fewer risks than others. They are as sexually active and are not less exposed than others to the risk of pregnancy or sexually transmitted diseases [2, 4, 7, 30, 42]. Drug and alcohol use or risk taking whilst driving, for example, are as frequent or even more frequent than in others [9, 42]. These young people, because of chronic illnesses or handicaps, might feel the need to assert their conformity by testing the norms [3] and by adopting so called "risk-taking behaviours" [1].

A great number of CCs have consequences on the assessment these adolescents make of their well-being [20, 41]. The difficulties they experience may increase the occurrence of problems such as tiredness, difficulties in socialising, harassment (from others), depression, or suicidal ideations [27, 38, 45].

This article presents the results of a Swiss survey. The objectives were to describe these adolescents, to compare them to adolescents who are not affected by CCs: in their behaviour and lifestyle, and in their well-being (expressed malaise, violence, suicide, need for help).

Subjects and methods

Design of the survey and sample

The data were obtained as part of the Swiss Multicentre Adolescent Survey on Health [19], a detailed description of which is given elsewhere [17]. This national survey was conducted in Switzerland during 1992 and 1993, targeting a representative sample of about 9268 in-school adolescents aged 15 to 20 years. The participants were selected through a one step cluster sampling procedure, stratified by educational background, grade and region. The research protocol was submitted to the Ethics Commission of the Medical Faculty at Lausanne University. A self-administered questionnaire was presented by professionals external to the school in order to ensure optimal confidentiality. It included 80 questions targeting health perception and behaviour, health care utilisation, lifestyles and well-being. The assessment of various health behaviours was limited to the preceding year in order to minimise recall biases.

Definition of the variables (design of the questionnaire)

The participants were asked to answer two questions specifically related to chronic illnesses: (1) "Do you have a physical handicap, that is to say a lesion which affects your body's integrity and limits its functioning in any way?" and (2) "Do you have a chronic illness, that is to say an illness which lasts a long time (at least 6 months) and which may need regular care (e.g. diabetes, scoliosis, etc...)?"

For the purpose of the subsequent analysis, positive answers to both questions were grouped, thus joining the different chronic illnesses and handicaps under a same concept of "Chronic Condition" proposed by Pless and Pinkerton [26] and supported and developed by Ruth Stein [31, 33, 34]. This non-categorised approach allowed us to display the illnesses' consequences, the common needs, and to favour a bio-psycho-social approach, rather than to concentrate on a diagnosis with or without impact on the adolescent's life [34].

Analyses

Using an SPSS-Windows version 10.0 data file, we performed univariate and multivariate analyses to compare the characteristics of the two groups, adolescents with CCs and adolescents without CCs. The χ2 test with a P value <0.05 was used for detecting differences between the two groups.

Results

Socio-demographic characteristics

The sample was representative of an in-school population of the same age in Switzerland in relation to the different socio-demographic variables [17]. Table 1 shows that adolescents affected by a CC were no different from other adolescents in relation to the socio-demographic variables studied. The matrimonial status alone displayed a higher percentage of divorced parents among boys affected by a CC, although the difference was statistically not significant.

Table 1. Socio–demographic characteristics among adolescents with and without chronic condition in the sample, by gender
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Prevalence

The prevalence of a physical handicap was 4.8% (0.95 confidence interval (CI): 4.2–5.6) among girls and 4.7% (0.95 CI: 4.1–5.3) among boys. The prevalence of a chronic illness was 7.4% (0.95 CI: 6.6–8.2) among girls and 5.8% (0.95 CI: 5.2–6.4) among boys. The prevalence of a CC as defined earlier was slightly higher among girls (11.4%; 0.95 CI: 10.4–12.4) than boys (9.6%; 0.95 CI: 8.8–10.4).

Well-being and need for help

Adolescents suffering from a CC declared themselves as less often in a good mood or well and as more often depressed or desperate (Table 2). Fewer young people with a CC declared themselves satisfied with their personal life (but 75% of them were often satisfied) and they reported making friends less easily than their peers (Table 2). They described themselves as being more worried by their relationship with their friends or parents, and also by the idea of seeing their parents divorced. Moreover, they considered their future less positively than their peers and were less confident of finding a job (Table 2). Fig. 1 shows clearly that more adolescents with a CC, either girls or boys, expressed a need for help, in all the fields explored.

Table 2. Well-being among adolescents with and without chronic condition, by gender
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Fig. 1.
figure 1

Need for help expressed in various issues among adolescents with and without CC by gender

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Sexuality

Differences were found only in boys. More boys with a CC reported that they had had a complete sexual relationship. They reported the use of a condom during their latest sexual intercourse more often (Table 3).

Table 3. Sexual behaviour among adolescents with and without chronic condition, by gender
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Experimental behaviours

Adolescents affected by a CC reported having more experimental behaviours than their peers in relation to seatbelt wearing, or tobacco and alcohol consumption (Table 4). Girls affected by a CC reported to have driven more often under the influence of alcohol, whereas boys affected by a CC reported using cannabis more often than others, during their life as well as during the 30 days preceding the survey. The different variables of experimental behaviours correlated to CCs were included in a logistic regression separately for girls and for boys, confirming that these variables were independently linked to the CC (data not presented).

Table 4. Experimental behaviour among adolescents with and without chronic condition, by gender
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Violence and suicide

Adolescent girls affected by a CC reported that they were more often victims of sexual aggression (sexual aggression was described as follows: "sexual aggression is when someone in your family, or someone else, touches you in a place you did not want to be touched, or does something to you sexually which they shouldn't have done") and physical violence and more often feared being beaten by their parents (Table 5). Boys as well as girls expressed anger through physical violence more often than their peers.

Table 5. Violence among adolescents with and without chronic condition, by gender
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During the 12 months preceding the survey, adolescents affected by a CC reported suicidal tendencies more frequently and attempting suicide more often. They described the same restraint in talking about it to their friends and family as did their peers and more than 50% of them did not disclose it (Table 6).

Table 6. Suicidal tendency and behaviour among adolescents with and without chronic condition, by gender
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Discussion

These analyses, as well as the results of other studies [12, 27, 45], do not show a relationship between CCs and socio-demographic characteristics. The prevalence of CCs in Swiss adolescents is 11.4% among girls and 9.6% among boys. These results are comparable to those found in the international literature, although there are limits to such a comparison as mentioned previously [37, 39, 44]. The prevalence is based on the adolescents' perception of their condition by way of a self-administered questionnaire, thus introducing a declaration bias [45].

The method allowed us to question a representative sample of Swiss adolescents aged 15-20 years attending school or in an apprenticeship (represents circa 80% of the 15-20-year-olds). The participation rate of the survey and the response rate to the questions were high, but our survey did not include the dropouts and those young people working without any training, thus introducing a selection bias. The adolescents with CCs who were unable to follow a normal school, such as those mentally handicapped and severely physically as well as sensory handicapped, were not included. Studies conducted in France and in Switzerland have suggested that it may be more difficult to follow a traditional training pathway when affected by a severe condition [7, 8]. The Swiss survey reported a higher prevalence of CCs among dropouts: 21% (versus 11%) among girls (P<0.005), and 15% (versus 8%) among boys (P<0.005) [8]. The prevalence results are thus underestimated if the general population is considered.

Three main results emerge from this investigation: the magnitude of risk-taking behaviour among the adolescents affected by a CC; the extent of expressed needs, either directly (need for help) or indirectly (problems in social life and mental health); and the great number of victims of violence among the young people affected by a CC.

The high frequency of risk-taking behaviour by adolescents affected by CCs may seem surprising. Some conditions, such as diabetes for example, have been described as having a protective effect on health related behaviour [9, 10, 13]. But most studies have observed a higher frequency of behaviours such as alcohol consumption, driving under the influence of alcohol (among girls), cannabis and tobacco consumption, among adolescents affected by a CC [5, 6, 29, 38, 42]. This active sensation seeking is a part of the personality development and independence inherent to adolescence and may include non-adherence to treatment and lack of compliance with medication. In a more pathological context, associations have been made between sensation-seeking or challenges made to death and depressed moods, anxiety disorders, conflicts with parents, or difficulties in coping with various life events [15].

These assumptions support the use of the concept "experimental behaviours" rather than the use of "risk-taking behaviours", the latter term reflecting the underlying negative aspect of an adult judgement on adolescents [16, 42]. There are also positive aspects to risk-taking: it can express a wish of independence and freedom, a search to test one's limits and to obtain a better knowledge of oneself. This view is particularly important for adolescents affected by a CC, as they have to develop specific adaptative strategies [23, 24].

Sexuality is an important sign of autonomy and maturity acquired during adolescence. Stevens et al. [35] cites a number of studies in which adolescents affected by a CC seemed to have a lower rate of sexual activity than others. They suggested that it is due to a delay in gaining overall social maturity as demonstrated by other studies [14] and to a reserve of their parents to discuss sexuality or puberty with them [35]. On the contrary, it has been observed in the present survey that boys affected by a CC had a higher rate of sexual activity and seemed to protect themselves more often than others. Other studies have noted the same tendencies and also a higher prevalence of pregnancies and sexually transmitted diseases among this group, suggesting that in spite of frequent contact with health care professionals, their knowledge and skills about contraception and sexuality are deficient [2, 4, 7, 30, 42].

Experimental behaviours are also influenced by the adolescent's environment but no model has so far been established to report the complexity of this issue [42]. An American survey [5] has underlined the importance of protective factors (familial connectedness, religious values, school network, parental presence) to prevent negative outcomes of experimental behaviours. Other studies have suggested that the higher anxiety levels and the negative body image linked to the chronic illness are responsible for bad perceived well-being, for lower perceived popularity and for lower self-esteem [38, 45]. These perceptions being more highly correlated to intra-familial cohesion than to the CC per se, the authors have proposed that a poor supportive network (family, peer group and friends) plays a role in the adolescent's perception of well-being and in health-compromising behaviour [45]. Moreover, it was observed in a Canadian study that although these adolescents have friends, they have few out-of-school activities and cannot, therefore, entirely share their generation's culture, preventing them from feeling integrated in a group or accepted by their peers [35].

This negative feeling of self-worth could also be related to the high prevalence of violence or of sexual victimisation among the adolescents affected by a CC, as suggested in other studies [40]. Despite the medical follow-up and frequent contacts with health care professionals, the adolescents affected by a CC do not disclose these concerns to their friends or family (more than 50% of them did not discuss it at all) more frequently than other adolescents, and they do not seek mental health services more often [40]. This need for help, which appeared clearly in the Swiss survey in relation to various fields, illustrates the lack of self-confidence these adolescents experience and the lack of support given to them by the people they are in contact with on a regular basis, such as their family, their peers, or the health care professionals.

Conclusion and recommendations

CCs do not prevent experimental behaviours during adolescence; on the contrary they seem to drive these young people to test their own limits, in terms of consumption (alcohol, drugs) as well as in terms of behaviours (sexuality, violence). Moreover, this study shows the high prevalence of depressive moods and suicidal tendency among the adolescents with a CC. Therefore, health promotion and preventive strategies have to be reinforced towards adolescents affected by a CC.

Several preventive strategies could be established: (1) by encouraging intra-familial communication, which is a protective element against risk-taking [25, 45]; (2) by ensuring a global management of the adolescent and her/his CC, by attention to their distress, concerns and questions through an appropriate counselling; (3) by giving her/him the possibility to discuss difficult subjects, and by clinical assessment of the difficulties related to suicide or sexuality and (4) by the screening of the experimental behaviours, and a motivational interview to explain the processes and to show the factors and the dangers, especially the negative outcomes directly linked to their illness, and by counselling and guidance [42]. These strategies can be carried out by the general or specialised practitioners who are in charge of the medical follow-up. They should also associate the skills of a physician trained in adolescent medicine in order to develop a bio-psycho-social approach and prepare these adolescents for adulthood by means of a "transitional care" approach.