care, health and development Child: Original Article bs_bs_banner
doi:10.1111/cch.12266
Parent–adolescent relationship in youths with a chronic condition A. Christin, C. Akre, A. Berchtold and J. C. Suris Research Group on Adolescent Health (GRSA/IUMSP), Institute of Social and Preventive Medicine, Lausanne University Hospital, Lausanne, Switzerland Accepted for publication 27 May 2015
Summary
Keywords adolescence, adolescent psychosocial development, chronic condition, parent– adolescent relationship Correspondence: J. C. Suris, Md, MPH, PhD, Research Group on Adolescent Health (GRSA/IUMSP), Institute of Social and Preventive Medicine, Lausanne University Hospital, Route de la Corniche 10, 1010 Lausanne, Switzerland E-mail: joan-carles.suris@ chuv.ch
Background Suffering from a chronic disease or disability (CDD) during adolescence can be a burden for both the adolescents and their parents. The aim of the present study is to assess how living with a CDD during adolescence, the quality of parent–adolescent relationship (PAR) and the adolescent’s psychosocial development interact with each other. Methods Using the Swiss Multicenter Adolescent Survey on Health 2002 (SMASH02) database, we compared adolescents aged 16–20 years with a CDD (n = 760) with their healthy peers (n = 6493) on sociodemographics, adolescents’ general and psychosocial health, interparental relationship and PAR. Results Bivariate analyses showed that adolescents with a CDD had a poorer psychosocial health and a more difficult relationship with their parents. The log-linear model indirectly linked CDD and poor PAR through four variables: two of the adolescents’ psychosocial health variables (suicide attempt and sensation seeking), the need for help regarding difficulties with parents and a highly educated mother that acted as a protective factor, allowing for a better parent–adolescent with a CDD relationship. Conclusion It is essential for health professionals taking care of adolescents with a CDD to distinguish between issues in relation with the CDD from other psychosocial difficulties, in order to help these adolescents and their parents deal with them appropriately and thus maintain a healthy PAR.
Introduction Adolescence is a time of change in the child–parent relationship during which parents must face numerous issues such as the quest for independence, experimental behaviours and emotional arousal of their child. These events do not spare the approximate 10% (Suris et al. 2004) of adolescents with a chronic disease or disability (CDD). When comparing adolescents with a CDD with their healthy peers, they are more vulnerable to psychosocial difficulties, such as depression and suicidal ideation (Geist et al. 2003) and equally or more exposed to risky behaviours (Suris et al. 2008). Thus, parents of adolescents with a CDD have to deal not only with these events but also with their adolescent’s CDD.
36
The relationship between adolescents with a CDD and their parents is important for the adolescent’s psychosocial development. For instance, the psychosocial adjustment of adolescents with cystic fibrosis is impoverished by non-supportive family behaviour (Graetz et al. 2000). However, independently of the type of chronic condition, children with a CDD are often overprotected by their parents (Hullmann et al. 2010). For example, parents of children with spina bifida tend to show high levels of psychological control and intrusiveness, which are, in turn, associated with a poorer outcome for the child (Holmbeck and Devine 2010). Youths with cerebral palsy who feel overprotected by their parents have lower psychosocial health than youths with the same condition who do not feel infantilized (Aran et al. 2007). More precisely, it is parental
© 2015 John Wiley & Sons Ltd
Adolescents with a chronic condition and their parents 37
psychological control rather than behavioural control that is linked to a negative outcome for the child (Ellis et al. 2008). The relationship between adolescents with a CDD and their parents is also known to have an important impact on the management and acceptance of the CDD. For instance, collaborative parent–adolescent management of type 1 diabetes allows better metabolic control and better psychosocial development of the adolescent (Jaser and Grey 2010). Globally, the whole family climate influences adherence to treatment overtime of children with a CDD (Fiese and Everhart 2006). For instance, a positive family relationship is associated with better adherence to treatment for preadolescents and adolescents with cystic fibrosis (DeLambo et al. 2004). Parent–adolescent relationship (PAR) is probably influenced by the parents’ psychosocial and marital status. The impact of a CDD on the parents’ relationship has been described in the literature by comparing marital status and marital distress between parents of children with a CDD and of healthy children. Studies on the separation or divorce rates in this population tend to show no differences between parents of children with or without a CDD (Seltzer et al. 2001) although marital distress is often more present in parents of children with a CDD (Sabbeth and Leventhal 1984). The impact of a CDD on parental psychosocial health has also been studied. Studies show a tendency for a poorer psychosocial health mainly among mothers of children and adolescents with a CDD. For example, mothers of preadolescents with spina bifida report more psychosocial stress and social isolation than mothers of able-bodied preadolescents (Holmbeck et al. 1997). Therefore, literature puts forward the impact of the supplementary burden of a CDD as well as the influence of the quality of the PAR on the psychosocial development of adolescents with a CDD. However, to our knowledge, no research has clarified how these three elements articulate with one another. Moreover, most research to date assesses samples that are often small (Jaser and Grey 2010) and limited to a specific disease or disability (Graetz et al. 2000), and studies applying a non-categorical approach are scarce. The aim of the present study is to assess how living with a CDD during adolescence, the quality of PAR and the adolescent’s psychosocial development interact with each other.
Methods Data were drawn from the Swiss Multicenter Adolescent Study on Health 2002. This self-reported anonymous survey was administered by trained professionals to a representative
sample (n = 7548) of 16- to 20-year-old adolescents in postmandatory schools in Switzerland. Post-mandatory school in Switzerland, attained by almost all youth, is divided in two options: high school, attained by onethird of the students and mainly leading to university studies, and apprenticeships, in which the other two-thirds of the students have 1 or 2 days of school per week and work in their specific domain the rest of the time. All public educational institutions in Switzerland were included in a two-stage sampling process by using a random cluster sample of classes that was drawn without replacement, the classes being considered as primary sampling units. Of 600 selected classes, 586 (97.7%) agreed to participate. Four percent of the questionnaires were discarded because of incomplete data. Approved by the Ethics Committee of the University of Lausanne’s School of Medicine, an anonymous selfadministered questionnaire was completed in the classrooms. A description of the questionnaire and sampling method has been published elsewhere (Jeannin et al. 2005). Using a non-categorical approach (Stein and Jessop 1982, Perrin et al. 1993), the CDD group (n = 760; 10.48%) was defined by a positive answer to one or both of the following questions : ‘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.…) ?’ and ‘Do you have a physical handicap, that is to say an injury which affects your body’s integrity and limits its functioning in any way ?’ Negative answers to both questions were considered as healthy controls (n = 6493; 89.52%). The 295 participants who did not respond to both questions were not included, for a final sample of 7253 youths. Participants not included in the final sample did not differ from included ones in age, gender, family situation or PAR (data not shown), but they were significantly more likely to be apprentices (79% vs. 72%, P < 0.05) and not Swiss-born (22% vs. 12%, P < 0.01). We took into account participants’ sociodemographics by including the following personal and environmental variables: age, gender, academic track (student or apprentice), nationality (Swiss/other), residence (urban or rural) and education level of the father and the mother [post-mandatory (defined as more than mandatory school)/other]. Both groups were compared on variables that are described as having a potential effect on the PAR. General health-related variables included missing school or work because of illness (about once a week or more often/other) and self-evaluation of health status [dichotomized as good (good, very good and excellent) and poor (mediocre and poor)]. The psychosocial health of the adolescent was defined through three variables: sensation seeking,
© 2015 John Wiley & Sons Ltd, Child: care, health and development, 42, 1, 36–41
38
A. Christin et al.
depressive ideation and suicide attempt. Sensation seeking (Gniech et al., 1993) was evaluated with a 5-item scale (such as occasionally I need to let off steam without any constraint or dangerous sports give me a lot of pleasure; Cronbach α = 0.80), which was dichotomized with subjects in the higher quartile being considered as high sensation seekers. Depressive ideation was assessed through one question: ‘Nowadays, I often feel depressed, not knowing why.’ [dichotomized as yes (absolutely agree and quite agree) and no (quite disagree and absolutely disagree)]. Suicide attempt was investigated through the following: ‘In the last 12 months, have you attempted suicide?’ (yes/no). Parents’ relationship was evaluated by the adolescent’s fear of seeing them divorce or separate [dichotomized as yes (a little, some, a lot) and no (not at all)] and their actual marital status. This last variable was dichotomized as intact family (parents together) or non-intact family (all other). To assess the PAR, we used five (out of 25) items from the Inventory of Parent and Peer Attachment (Armsden and Greenberg 1987), plus an item about adolescents’ perception on how much their parents trusted them. These questions are centred on the parents’ acceptance, understanding and trust in their adolescent, the adolescents’ trust in their parents and complicity between the adolescents and their parents (talking about their problems and difficulties with their parents and parents’ perception of when the adolescent is sad). These six items were included in a scale (Cronbach α = 0.85), and the relationship was dichotomized, with those in the higher quartile being considered as having a poor relationship with their parents. A further question, relevant to the assessment of PAR, was used: ‘Do you currently feel that you need help regarding difficulties with your parents?’ (yes/no). In a first step, we conducted a bivariate analysis comparing healthy adolescents and adolescents with a CDD. We used the chi-square statistic to compare categorical variables and Student’s t-test for continuous variables. In a second step, all variables significantly associated at the 95% level with the chronic condition in the bivariate analysis were included in a multivariate analysis. Because we did not postulate causality between chronic conditions and the other variables, the classical logistic regression model was not a pertinent choice. We chose then to rely on a non-directional method: log-linear analysis (Agresti 2002). Preliminary computations showed that associations of order higher than two were mostly nonsignificant, so we included only bivariate relations and the main effect of each variable into the starting model. We performed then a selection of the useful relations between variables using the Bayesian information criterion (Kass and Raftery, 1995). This criterion allowed us to take into account both
© 2015 John Wiley & Sons Ltd, Child: care, health and development, 42, 1, 36–41
the quality of fit and the complexity of the model, leading to a parsimonious final model. Results are presented as a diagram showing all remaining significant associations in the final model. STATA 12.1 (StataCorp, College Station, TX) was used for preliminary and bivariate computations, and R 2.12.2 (The R Foundation for Statistical Computing, Vienna, Austria) was used for the log-linear analysis.
Results Bivariate analyses Three variables were found to be at the limit of being statistically significant: compared with their healthy peers, adolescents with a CDD were slightly older, lived more often in an urban environment and globally had higher educated parents, more significantly for mothers than for fathers. Nevertheless, these variables were taken into account for the log-linear model because this kind of model takes into account relations not only between factors and the group variable (CDD) but also between factors themselves. In this context, these variables could maintain significant relations in the final model, even if not with CDD, and help understand the data, particularly the association with parents’ relationship (Table 1). As expected, adolescents with a CDD reported worse perceived health status and psychosocial health than their healthy peers: they were more depressed, sensation seekers and suicidal. Adolescents with a CDD also had a poorer relationship with their parents and were much more likely to feel the need for help regarding difficulties with them. Finally, adolescents with a CDD were more afraid that their parents would separate or divorce. However, no statistically significant difference was found in the marital status of parents between adolescents with a CDD and healthy adolescents, both groups living more often in intact families.
Log-linear model No direct connection was established between having a CDD and poor PAR. However, the adolescent psychosocial health linked having a CDD and a poor PAR indirectly through two variables: sensation seeking and suicide attempt. Having a CDD and a poor PAR was also found to be indirectly bound through the need for help regarding difficulties with parents. Finally, having a highly educated mother was also an indirect link but as a protective factor, allowing for a better relationship between parents and adolescent with a CDD (Fig. 1).
Adolescents with a chronic condition and their parents 39
Table 1. Characteristics of the sample comparing adolescents with a chronic disease or disability and healthy adolescents
Demographics Mean age (years) Sex (female) Academic track (student) Nationality (Swiss) Residence (urban) Parents’ education level (post-mandatory) Mother Father Adolescent’s general health Health status (poor) Missing school/work (≥1 time per week) Adolescent’s psychosocial health Depression (yes) Suicide attempt (in the last 12 months) (yes) Sensation seeking (yes) Parents’ relationship Adolescent’s fear of separation/divorce (yes) Family situation (non-intact family) Parent–adolescent relationship Overall relationship (poor) Need of help regarding difficulties with parents (yes)
Adolescents with a chronic disease or disability
Healthy adolescents
n = 760
n = 6493
18.12 56.5% 31.19% 89.61% 47.61%
17.89 54.07% 28.49% 87.33% 41.57%
doi:10.1111/cch.12266
Parent–adolescent relationship in youths with a chronic condition A. Christin, C. Akre, A. Berchtold and J. C. Suris Research Group on Adolescent Health (GRSA/IUMSP), Institute of Social and Preventive Medicine, Lausanne University Hospital, Lausanne, Switzerland Accepted for publication 27 May 2015
Summary
Keywords adolescence, adolescent psychosocial development, chronic condition, parent– adolescent relationship Correspondence: J. C. Suris, Md, MPH, PhD, Research Group on Adolescent Health (GRSA/IUMSP), Institute of Social and Preventive Medicine, Lausanne University Hospital, Route de la Corniche 10, 1010 Lausanne, Switzerland E-mail: joan-carles.suris@ chuv.ch
Background Suffering from a chronic disease or disability (CDD) during adolescence can be a burden for both the adolescents and their parents. The aim of the present study is to assess how living with a CDD during adolescence, the quality of parent–adolescent relationship (PAR) and the adolescent’s psychosocial development interact with each other. Methods Using the Swiss Multicenter Adolescent Survey on Health 2002 (SMASH02) database, we compared adolescents aged 16–20 years with a CDD (n = 760) with their healthy peers (n = 6493) on sociodemographics, adolescents’ general and psychosocial health, interparental relationship and PAR. Results Bivariate analyses showed that adolescents with a CDD had a poorer psychosocial health and a more difficult relationship with their parents. The log-linear model indirectly linked CDD and poor PAR through four variables: two of the adolescents’ psychosocial health variables (suicide attempt and sensation seeking), the need for help regarding difficulties with parents and a highly educated mother that acted as a protective factor, allowing for a better parent–adolescent with a CDD relationship. Conclusion It is essential for health professionals taking care of adolescents with a CDD to distinguish between issues in relation with the CDD from other psychosocial difficulties, in order to help these adolescents and their parents deal with them appropriately and thus maintain a healthy PAR.
Introduction Adolescence is a time of change in the child–parent relationship during which parents must face numerous issues such as the quest for independence, experimental behaviours and emotional arousal of their child. These events do not spare the approximate 10% (Suris et al. 2004) of adolescents with a chronic disease or disability (CDD). When comparing adolescents with a CDD with their healthy peers, they are more vulnerable to psychosocial difficulties, such as depression and suicidal ideation (Geist et al. 2003) and equally or more exposed to risky behaviours (Suris et al. 2008). Thus, parents of adolescents with a CDD have to deal not only with these events but also with their adolescent’s CDD.
36
The relationship between adolescents with a CDD and their parents is important for the adolescent’s psychosocial development. For instance, the psychosocial adjustment of adolescents with cystic fibrosis is impoverished by non-supportive family behaviour (Graetz et al. 2000). However, independently of the type of chronic condition, children with a CDD are often overprotected by their parents (Hullmann et al. 2010). For example, parents of children with spina bifida tend to show high levels of psychological control and intrusiveness, which are, in turn, associated with a poorer outcome for the child (Holmbeck and Devine 2010). Youths with cerebral palsy who feel overprotected by their parents have lower psychosocial health than youths with the same condition who do not feel infantilized (Aran et al. 2007). More precisely, it is parental
© 2015 John Wiley & Sons Ltd
Adolescents with a chronic condition and their parents 37
psychological control rather than behavioural control that is linked to a negative outcome for the child (Ellis et al. 2008). The relationship between adolescents with a CDD and their parents is also known to have an important impact on the management and acceptance of the CDD. For instance, collaborative parent–adolescent management of type 1 diabetes allows better metabolic control and better psychosocial development of the adolescent (Jaser and Grey 2010). Globally, the whole family climate influences adherence to treatment overtime of children with a CDD (Fiese and Everhart 2006). For instance, a positive family relationship is associated with better adherence to treatment for preadolescents and adolescents with cystic fibrosis (DeLambo et al. 2004). Parent–adolescent relationship (PAR) is probably influenced by the parents’ psychosocial and marital status. The impact of a CDD on the parents’ relationship has been described in the literature by comparing marital status and marital distress between parents of children with a CDD and of healthy children. Studies on the separation or divorce rates in this population tend to show no differences between parents of children with or without a CDD (Seltzer et al. 2001) although marital distress is often more present in parents of children with a CDD (Sabbeth and Leventhal 1984). The impact of a CDD on parental psychosocial health has also been studied. Studies show a tendency for a poorer psychosocial health mainly among mothers of children and adolescents with a CDD. For example, mothers of preadolescents with spina bifida report more psychosocial stress and social isolation than mothers of able-bodied preadolescents (Holmbeck et al. 1997). Therefore, literature puts forward the impact of the supplementary burden of a CDD as well as the influence of the quality of the PAR on the psychosocial development of adolescents with a CDD. However, to our knowledge, no research has clarified how these three elements articulate with one another. Moreover, most research to date assesses samples that are often small (Jaser and Grey 2010) and limited to a specific disease or disability (Graetz et al. 2000), and studies applying a non-categorical approach are scarce. The aim of the present study is to assess how living with a CDD during adolescence, the quality of PAR and the adolescent’s psychosocial development interact with each other.
Methods Data were drawn from the Swiss Multicenter Adolescent Study on Health 2002. This self-reported anonymous survey was administered by trained professionals to a representative
sample (n = 7548) of 16- to 20-year-old adolescents in postmandatory schools in Switzerland. Post-mandatory school in Switzerland, attained by almost all youth, is divided in two options: high school, attained by onethird of the students and mainly leading to university studies, and apprenticeships, in which the other two-thirds of the students have 1 or 2 days of school per week and work in their specific domain the rest of the time. All public educational institutions in Switzerland were included in a two-stage sampling process by using a random cluster sample of classes that was drawn without replacement, the classes being considered as primary sampling units. Of 600 selected classes, 586 (97.7%) agreed to participate. Four percent of the questionnaires were discarded because of incomplete data. Approved by the Ethics Committee of the University of Lausanne’s School of Medicine, an anonymous selfadministered questionnaire was completed in the classrooms. A description of the questionnaire and sampling method has been published elsewhere (Jeannin et al. 2005). Using a non-categorical approach (Stein and Jessop 1982, Perrin et al. 1993), the CDD group (n = 760; 10.48%) was defined by a positive answer to one or both of the following questions : ‘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.…) ?’ and ‘Do you have a physical handicap, that is to say an injury which affects your body’s integrity and limits its functioning in any way ?’ Negative answers to both questions were considered as healthy controls (n = 6493; 89.52%). The 295 participants who did not respond to both questions were not included, for a final sample of 7253 youths. Participants not included in the final sample did not differ from included ones in age, gender, family situation or PAR (data not shown), but they were significantly more likely to be apprentices (79% vs. 72%, P < 0.05) and not Swiss-born (22% vs. 12%, P < 0.01). We took into account participants’ sociodemographics by including the following personal and environmental variables: age, gender, academic track (student or apprentice), nationality (Swiss/other), residence (urban or rural) and education level of the father and the mother [post-mandatory (defined as more than mandatory school)/other]. Both groups were compared on variables that are described as having a potential effect on the PAR. General health-related variables included missing school or work because of illness (about once a week or more often/other) and self-evaluation of health status [dichotomized as good (good, very good and excellent) and poor (mediocre and poor)]. The psychosocial health of the adolescent was defined through three variables: sensation seeking,
© 2015 John Wiley & Sons Ltd, Child: care, health and development, 42, 1, 36–41
38
A. Christin et al.
depressive ideation and suicide attempt. Sensation seeking (Gniech et al., 1993) was evaluated with a 5-item scale (such as occasionally I need to let off steam without any constraint or dangerous sports give me a lot of pleasure; Cronbach α = 0.80), which was dichotomized with subjects in the higher quartile being considered as high sensation seekers. Depressive ideation was assessed through one question: ‘Nowadays, I often feel depressed, not knowing why.’ [dichotomized as yes (absolutely agree and quite agree) and no (quite disagree and absolutely disagree)]. Suicide attempt was investigated through the following: ‘In the last 12 months, have you attempted suicide?’ (yes/no). Parents’ relationship was evaluated by the adolescent’s fear of seeing them divorce or separate [dichotomized as yes (a little, some, a lot) and no (not at all)] and their actual marital status. This last variable was dichotomized as intact family (parents together) or non-intact family (all other). To assess the PAR, we used five (out of 25) items from the Inventory of Parent and Peer Attachment (Armsden and Greenberg 1987), plus an item about adolescents’ perception on how much their parents trusted them. These questions are centred on the parents’ acceptance, understanding and trust in their adolescent, the adolescents’ trust in their parents and complicity between the adolescents and their parents (talking about their problems and difficulties with their parents and parents’ perception of when the adolescent is sad). These six items were included in a scale (Cronbach α = 0.85), and the relationship was dichotomized, with those in the higher quartile being considered as having a poor relationship with their parents. A further question, relevant to the assessment of PAR, was used: ‘Do you currently feel that you need help regarding difficulties with your parents?’ (yes/no). In a first step, we conducted a bivariate analysis comparing healthy adolescents and adolescents with a CDD. We used the chi-square statistic to compare categorical variables and Student’s t-test for continuous variables. In a second step, all variables significantly associated at the 95% level with the chronic condition in the bivariate analysis were included in a multivariate analysis. Because we did not postulate causality between chronic conditions and the other variables, the classical logistic regression model was not a pertinent choice. We chose then to rely on a non-directional method: log-linear analysis (Agresti 2002). Preliminary computations showed that associations of order higher than two were mostly nonsignificant, so we included only bivariate relations and the main effect of each variable into the starting model. We performed then a selection of the useful relations between variables using the Bayesian information criterion (Kass and Raftery, 1995). This criterion allowed us to take into account both
© 2015 John Wiley & Sons Ltd, Child: care, health and development, 42, 1, 36–41
the quality of fit and the complexity of the model, leading to a parsimonious final model. Results are presented as a diagram showing all remaining significant associations in the final model. STATA 12.1 (StataCorp, College Station, TX) was used for preliminary and bivariate computations, and R 2.12.2 (The R Foundation for Statistical Computing, Vienna, Austria) was used for the log-linear analysis.
Results Bivariate analyses Three variables were found to be at the limit of being statistically significant: compared with their healthy peers, adolescents with a CDD were slightly older, lived more often in an urban environment and globally had higher educated parents, more significantly for mothers than for fathers. Nevertheless, these variables were taken into account for the log-linear model because this kind of model takes into account relations not only between factors and the group variable (CDD) but also between factors themselves. In this context, these variables could maintain significant relations in the final model, even if not with CDD, and help understand the data, particularly the association with parents’ relationship (Table 1). As expected, adolescents with a CDD reported worse perceived health status and psychosocial health than their healthy peers: they were more depressed, sensation seekers and suicidal. Adolescents with a CDD also had a poorer relationship with their parents and were much more likely to feel the need for help regarding difficulties with them. Finally, adolescents with a CDD were more afraid that their parents would separate or divorce. However, no statistically significant difference was found in the marital status of parents between adolescents with a CDD and healthy adolescents, both groups living more often in intact families.
Log-linear model No direct connection was established between having a CDD and poor PAR. However, the adolescent psychosocial health linked having a CDD and a poor PAR indirectly through two variables: sensation seeking and suicide attempt. Having a CDD and a poor PAR was also found to be indirectly bound through the need for help regarding difficulties with parents. Finally, having a highly educated mother was also an indirect link but as a protective factor, allowing for a better relationship between parents and adolescent with a CDD (Fig. 1).
Adolescents with a chronic condition and their parents 39
Table 1. Characteristics of the sample comparing adolescents with a chronic disease or disability and healthy adolescents
Demographics Mean age (years) Sex (female) Academic track (student) Nationality (Swiss) Residence (urban) Parents’ education level (post-mandatory) Mother Father Adolescent’s general health Health status (poor) Missing school/work (≥1 time per week) Adolescent’s psychosocial health Depression (yes) Suicide attempt (in the last 12 months) (yes) Sensation seeking (yes) Parents’ relationship Adolescent’s fear of separation/divorce (yes) Family situation (non-intact family) Parent–adolescent relationship Overall relationship (poor) Need of help regarding difficulties with parents (yes)
Adolescents with a chronic disease or disability
Healthy adolescents
n = 760
n = 6493
18.12 56.5% 31.19% 89.61% 47.61%
17.89 54.07% 28.49% 87.33% 41.57%
