Positive effects of a psycho-educational group intervention for children with a chronic disease: First results

Patient Education and Counseling 65 (2007) 101–112 www.elsevier.com/locate/pateducou

Positive effects of a psycho-educational group intervention for children with a chronic disease: First results Bob F. Last a,b,*, Heleen Stam a, Anne-Martine Onland-van Nieuwenhuizen a, Martha A. Grootenhuis a a

Psychosocial Department, Emma Children’s Hospital, Academic Medical Center, Amsterdam, The Netherlands b Department Developmental Psychology, Vrije Universiteit, Amsterdam, The Netherlands Received 14 February 2006; received in revised form 7 June 2006; accepted 10 June 2006

Abstract Objective: To determine the effectiveness of a psycho-educational group intervention for chronically ill children. Methods: Based on principles from cognitive behavior therapy and information from previous research about children’s experiences with coping with a chronic disease we developed an intervention to be used for children with different chronic diseases. The program, called Op Koers (OK), with six sessions for different age groups, was evaluated by standardised and researcher-developed psychological measures. Results: A total of 109 patients participated in the study on the effects of the psycho-educational intervention. Improvements in behavioral– emotional outcomes, social competence, information seeking, relaxation and positive thinking were found both in short and medium term. Additionally, the sessions received positive appraisals. Conclusions: The program appears to have a significant and positive impact on chronically children. Further research is needed to establish the effects of the intervention. Practice implications: Beneficial effects can be expected from the implementation of a psycho-educational group intervention for children with heterogeneous chronic health conditions. # 2006 Elsevier Ireland Ltd. All rights reserved. Keywords: Group intervention; Child; Chronically ill; Psychological; Coping strategies

1. Introduction Increasing number of children are growing up with a chronic disease because of advances in pediatrics and pediatric surgery. It is estimated that approximately 15–20% of children between the age of 0 and 18 years are growing up with a chronic illness and many of them will live into adulthood. The term ‘chronic illness’ refers to illnesses that require at least 6 months of continuous medical care, permanent life style changes and continuous behavioral adaptation to the unpredictable course of the illness [1]. Chronic illnesses like asthma, diabetes, sickle cell anemia, * Corresponding author: Psychosocial Department, Emma Children’s Hospital, Academic Medical Center, G8-224, P.O. Box 22700, 1100 DE Amsterdam, The Netherlands. Tel.: +31 2 5665674; fax: +31 20 6091242. E-mail address: [email protected] (B.F. Last).

cystic fibrosis, inflammatory bowel diseases have no known cures but can be managed medically. Some illnesses like childhood cancer are acute in their manifestation, but chronic in their late effects and may be by that perceived as a chronic illness. Children with chronic illness have to face several problems: frequent hospitalistions, undergoing painful medical procedures, taking medicine, school absenteeism and restriction of activities due to the medical regimen [1]. As a result of these restrictions these ill children are especially vulnerable to a multitude of short- and long-term academic, behavioral and negative emotional outcomes (e.g. a lower self-esteem) and social adjustment (e.g. withdrawn behavior) [1–4]. Children with a chronic disease show more submissive behavior and tend to be more socially withdrawn in particular when they are reluctant to inform their peers about their disease [5]. Children who grow up with a chronic

0738-3991/$ – see front matter # 2006 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2006.06.017

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illness not only have to meet their age-related developmental tasks, but they also have to manage their disease or handicap, which leads to a heightened chance of a hampered course of life [6]. Living with a chronic illness means for the child and the family to manage various stressors related to uncertainty and uncontrollability of the situation and restriction of freedom to act. How a person deals with a stressful situation is called coping. One’s perceptions, or cognitive appraisals, are an important element in regulating distress or managing the problem causing the distress. Problem-focused coping involves direct efforts to ameliorate the problem causes the distress, whereas emotion-focused coping is directed towards regulating effects surrounding a stressful experience [7]. The cognitive appraisals and the applied coping strategies are influenced by intrapersonal factors (e.g. temperament characteristics or competences of the child) and social–ecological factors (e.g. perceived social support or family functioning) [4]. Children use different coping strategies for dealing with stressors in relation to their illness or treatment. They use distraction, positive self-talk, optimism and wishful thinking when dealing with stressors such as medical procedures (e.g. venipunctures or blood glucose testing), diet regimen and uncertainty about the course of the disease [8–10]. Dependent on the stressor the selected coping strategy will be effective in terms of adjustment. A child with diabetes, who postpones his blood glucose testing due to wishful thinking, will suffer from his coping efforts in the long run. Otherwise, a child confronted with life threatening facts about his chronic disease benefits from positive self-talk and optimism as a way of coping. Studies across illness groups show that children who use a restricted range of coping strategies, or primarily use avoidance strategies to cope with stressors are not as good adjusted as children who use active problem-solving strategies [1]. Behavioral and cognitive-behavioral techniques are the most frequently used intervention approaches for typical problems experienced by chronically ill children and adolescents for disease management, management of procedural distress and psychosocial adjustment problems [11–13]. Results from studies of psychological interventions for children and adolescents with chronic medical conditions provide strong evidence for concluding that the interventions are effective and that effectiveness is maintained for at least 1 year following cessation of the intervention [13]. Group interventions have been used with a variety of pediatric populations. The focus of group intervention has been on emotional support (e.g. living with cancer), enhancing adaptation and specified skills (e.g. coping with diabetes, asthma) and reduction of physical symptoms by behavior change (e.g. encopresis, obesitas). Studies on the effectiveness of group interventions show promising results, in particular in establishing coping skills and in improving knowledge about symptom reduction and disease-related problem-solving [14,15]. Shortcomings of

many studies are small sample size, lack of correspondence between treatment objectives and their measurement and lack of external validation of findings [14]. Forming homogeneous groups promotes demonstrating effectiveness on the one hand, but overfocusing on the homogeneity of groups may critically reduce the number of eligible participants and may exclude participants of underrepresented populations [14]. Considering the limitation of existing interventions for children with chronic health conditions we decided to develop our own intervention focussing on both the importance of the use of information, relaxation and the importance of social relationships, and to document changes in distress and quality of life in a research program. In this article we report the results of a first study on the effectiveness of this group intervention, named Op Koers (O.K. program). Self-worth and social–emotional functioning is reported as well as intervention-related outcomes concerning coping strategies.

2. Method 2.1. Intervention: key constructs The program was designed with the aim to empower children with chronic diseases by teaching the active use of coping strategies. Coping strategies focused on seeking information, using relaxation, and positive thinking in order to increase self-worth and social–emotional functioning. The intervention program has been composed for an unselected group of children and adolescents with a chronic disease following primary or secondary education. Basic assumption of the intervention program is Beck’s cognitive theory [16,17] on emotion stating that everybody (including children) is processing information at all times and because of these experiences conceiving thoughts and feelings about themselves and the surrounding world. Based on this assumption a model is presented to the children explaining how thoughts, feelings and behavior are influenced by each other. This Thinking–Feeling–Doing model (TFD-model) is used in learning new behavior and recognising thoughts and feelings during the whole program. More specific, the intervention is based on techniques proven to be effective in behavioral and cognitive behavioral therapeutic programs in children with somatic complaints [3,13] and in children with behavior and/or anxiety disorders [18,19]. Exemplary element of intervention in classic behavioral therapy is learning an alternative, concurrent response (e.g. active muscle relaxation) in facing a stressful, anxiety evoking procedure (e.g. a venapuncture). This procedure is found to be effective in several studies in hospitalised children [3]. The cognitive behavior therapeutic (CBT) approach integrates behavioral procedures such as modeling, contingency management, exposure exercises and cognitive

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techniques aimed at altering negative or distorted thoughts into more positive and proactive ones [20]. In studies with children with cancer associations of open communication about the disease with better adjustment have been found [21]. Therefore, we added the goal of enhancing knowledge about the disease and sharing relevant facts about the disease with peers in the program. Disease-related social abilities are enhanced by using role playing and modeling, proven to be effective in children with somatic handicaps [22] and social withdrawn behavior [23]. Generic part of the intervention is the element of joining. Sharing of experiences with fellowpatients is associated with a reduction of feelings of distress [14]. 2.2. The OK program The intervention OK is designed for three age groups: (1) Op Pad (OP) younger primary school children (age 8–10 years), (2) Op Stap (OS) older primary school children (age 10–12 years), and (3) Op Weg (OW) adolescents visiting secondary school (12–18 years). Children participate in the group which matches their school-grade. The sub-division in age-dependent groups was chosen in relation with the phases of cognitive development of children. Teenagers visiting secondary school are supposed to understand tasks demanding the ability of formal reasoning, e.g. needed to identify inaccurate thoughts and misinterpretations of events. 2.2.1. Goals of the intervention Using the above mentioned principles and techniques the following learning goals are central: information seeking and information giving about the disease, use of relaxation during stressful situations, enhancement of social competence and positive thinking. The main content of the sessions is described below. Some parts of the intervention contribute to different learning goals simultaneously. In all groups agerelated examples are used. In order to influence positive thinking the Thinking– Feeling–Doing model is introduced. The influence of the thoughts of a person onto his feelings and behavior is explained and regularly used in explaining reactions during every session. Information seeking and information giving about the disease is trained in the intervention by asking the children to tell the story of their disease. They are all encouraged to seek information and ask information because it is ‘good to know better’. Information-sources are discussed. Open communication is underscored by a video with the take home message that it is better to take the initiative to inform the environment (peers, school) about the disease (e.g. reasons for absence, limitations). Adolescents are taught in role playing about approaching the physician with questions about the disease and treatment.

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Relaxation is practiced through different exercises. Young children practice with relaxation-tricks to be used in stressful situations like medical procedures. All children practice a relaxation exercise and take home a CD with it for homework. The enhancement of social competence is taught by story-telling and group discussions about activities the child can do or cannot do because of the disease. In role playing social skills are practiced to make clear to peers the child cannot take part in certain activities while proposing an alternative. A game is played in which a child has to create a list of all possible activities the child is able to do regardless of the illness and which positive thoughts he can have (personal competencies game). With the teenage group feelings of being different because of the illness are discussed. While using a Spin-of-Feelings (SoF) discussion of emotions is stimulated. Furthermore a story is used about a boy who suffers from misinterpretations and catastrophic thoughts about his disease. In the story the boy feels better after getting adequate information about his situation resulting in more positive thoughts. Children are also working on recognition of negative thoughts about the disease and its consequences and exploring the possibility of introducing alternative (more positive) thinking. The instruction is called ‘‘teasers and pleasers’’. Adolescents are encouraged to identifying and correcting inaccurate thoughts and discourage negative self-talk. In Table 1 all the sessions for the three groups are summarised. 2.3. Procedure The OK program is an ongoing intervention that started in May 2003. Children and adolescents with a chronic disease visiting the outpatient clinic of the Emma Children’s Hospital AMC, their parents and the medical staff are actively informed about the OK program. After having obtained written informed consent child and parents are invited to an initial interview in which the set up of the intervention is explained and disease-related and sociodemographic data are gathered. For inclusion the children and adolescents have to meet the criteria of suffering from a chronic disease. Only children and adolescents visiting a school for the serious mentally retarded are excluded from participation. From the parents and the children older than 12 years written consent is asked for taking part in the evaluation study. In the period of May 2003–May 2005, the 116 children and adolescents (and their parents) who passed the initial interview and agreed with the study, were included in the present study. They were asked to complete questionnaires three times: before the intervention (baseline, T0), 0–6 weeks after the intervention (T1), and half a year (6–8 months) after the intervention (T2).

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Table 1 Description of the sessions for different age groups Session Content/homework Group 8–10 years

Group 10–12 years

1

-

Introducing the intervention and rules Getting to know each other Making a name for the group Thermometer Introducing TFD-model + SoF

Group 12–18 years

Content session

-

Introducing the intervention and rules - Introducing the intervention Getting to know each other - Getting to know each other Making a name for the group - Thermometer Introducing TFD-model + SoF - TFD model + SoF - Questions others ask you about your disease

Homework

- Three questions asked about your disease

- Three questions about your disease

- Read about TFD-model

-

-

-

Start of every session

2

Content session

Questionnaires Thermometer Nice and new last week Discussion of homework

- It is good to know better - How can you find answer to a question? - Relaxation exercise

Homework

- Formulate one question and find answers - Relaxation exercise (CD)

3

4

Questionnaires Thermometer Nice and new last week Discussion homework

- It is good to know better - How can you find answer to a question? - Relaxation exercise

- It is good to know better - Discussion about sources of information - Relaxation practice

- Formulate one question and find answers - Relaxation exercise (CD)

- Formulate questions - Relaxation exercice (CD)

Content session

- Video practicing tricks for medical procedures - My personal competencies game - Relaxation exercise - Video: take initiative and inform - Role playing

- Open communication - Role play approaching physician - Video: take initiative and inform

Homework

- Find two examples how you can relax

- Formulate two things you cannot do and two things which you can do instead

- Tell the story of your disease

Content session

- My personal competencies game

- Recognition of negative and positive thoughts - Teasers and pleasers game

- Discussion being different - My personal competencies game

- Video: take initiative and inform - Role play: active approach

5

Questionnaires Thermometer Nice and new last week Discussion homework

Homework

- Formulate two things you cannot do and two things which you can do instead

- Make a list of everything you can do

- Make a list of everything you can do

Content session

- Teasers and pleasers game - Role play: inform peers about what you cannot and what you can do instead

- Relaxation exercise - Role play: inform peers about what you cannot and what you can do instead

- Recognising negative thinking - Identifying and correcting inaccurate thoughts - Relaxation

Homework

6

Content session

- Create a list of all you are able to do - Relaxation

- Create a list of all you are able to do - Relaxation

- Drawing: personal competency - Evaluation

- Drawing: when you are old - Evaluation

2.4. Measures Both intervention-related and social- and emotional outcomes are studied. The goals and instruments are summarised in Table 2. 2.4.1. Intervention-related outcomes The Questionnaire Op Koers for children (QOK-c) and parents (QOK-p) was developed by the psychosocial

- Describe three negative thought - Identify and correct them - Giving compliments - Repetition goals of the program - Evaluation

department of the Emma Children’s hospital AMC in order to be able to investigate whether the goals of the OK program were met. The items concern disease-related skills which are taught during the psycho-educational group intervention. The QOK-c asks the participating patients to which degree they agree with given statements on a four-point scale: (almost) never, sometimes, often (almost) ever. A higher score indicates more disease-related skills. The construction of four scales was proposed according to the four intervention goals

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Table 2 Intervention goals and their operationalisations Intervention goals

Measures (questionnaires)

Information seeking and information giving about the disease Use of relaxation during stressful situations Social competence Positive thinking

Questionnaire Op Koers (QOK-c, QOK-p) Questionnaire Op Koers (QOK-c, QOK-p) Questionnaire Op Koers (QOK-c, QOK-p) Questionnaire Op Koers (QOK-c, QOK-p) Cognitive Control Strategies Scale (CCSS-CF)

Social- and emotional outcomes

Measures (questionnaires)

Behavioral–emotional problems Quality of daily functioning

Child Behavior Checklist (CBCL-prf) Dutch Children’s AZL/TNO Quality of life Questionnare (DUX-25) State-Trait Inventory (STAI-C) Self Perception Profile (SPPC, SPPA)

Anxiety Self-worth

(see Table 2). However, due to low internal consistency it was not possible to construct the four apriori scales. Instead, the items were added up into the following three scales: information seeking (three items), social competence (seven items), and relaxation and positive thinking (seven items). A total score was computed by adding up all the 18 items. The Cronbach’s alphas of the scales were moderate to good: information seeking 0.68 (T0), 0.69 (T1), 0.54 (T2); social competence 0.57 (T0), 0.69 (T1), 0.67 (T2); relaxation and positive thinking 0.67 (T0), 0.78 (T1), 0.83 (T2); Total score 0.78 (T0), 0.86 (T1), 0.87 (T2). The QOK-p assesses patients’ disease-related skills as perceived by their parents. The questionnaire consists of five statements about information seeking, relaxation, knowledge about personal competencies, assertive behavior and satisfaction. The parents are asked to rate the degree to which they agree with the statements on a four-point scale: (almost) ever, often, sometimes (almost) never. A lower score indicates that the patients used more disease-related skills according to their parents. The Cognitive Control Strategies Scale (CCSS-CF) for pediatric patients, developed at the Psychosocial Department of the Emma Children’s Hospital AMC [8,24,25], measures disease-related cognitive coping. In the CCSS respondents are asked to indicate whether they agree with a given statement on a four-point scale: totally agree, agree, disagree, and totally disagree. Higher scores represent a stronger reliance upon the control strategy. Scales were composed by means of a principal component factor analysis with varimax rotation, and reliability analysis. The items of the CCSS were grouped into three scales: predictive control (three items, being optimistic about the course of the illness), vicarious control (eight items, attributing power to medical-care givers and treatment), and interpretative control (four items, searching for information in order to better understand emotional reactions and to gain insight into the situation). The internal consistency of the scales was satisfactory: predictive control 0.62 (T0), 0.72 (T1), 0.75 (T2); vicarious control 0.78 (T0), 0.86 (T1), 0.89 (T2); interpretative control 0.74 (T0), 0.71 (T1), 0.83 (T2). Test–retest reliability was tested in a

population of 21 children with Familiar Hypercholesterolaemia (FH), a chronic stable disease [unpublished results]. Adolescents completed the questionnaire twice within 2 weeks. Test–retest reliability was analysed calculating the intra-class correlation coefficient (ICC). ICCs for the three scales exceeded 0.60 (predictive control 0.64; vicarious control 0.73; and interpretative control 0.88). 2.4.2. Social- and emotional outcomes The Dutch Child Behavior Check List for parents (CBCLprf) was used to assess patients’ behavioral–emotional problems as reported by the parents [26]. The CBCL-prf measures several aspects of behavioral–emotional problems in children aged 4–18 years: internalising problems, externalising problems, withdrawal, somatic complaints, anxiety/depression, social problems, attention problems, aggressive behavior, thought problems and delinquent behavior. The last two scales were not used in the present study because of too low internal consistency. The Cronbach’s alphas of the other scales were satisfactory, ranging from 0.65 to 0.95. Anxiety was measured with the Dutch version of the State-Trait Inventory for Children (STAI-C), the ZBV-K [27]. The ‘trait’ version was used to assess the tendency to respond with anxiety in a threatening situation. This version is more appropriate to measure the overall level of anxiety a child experiences than the ‘state’ version that measures conditional anxiety at the very moment of assessment. Scores on the STAI-C range from 20 to 60, with high scores indicating high levels of anxiety. The validity and reliability turned out to be good [27]. The Cronbach’s alphas in the present study were satisfactory, ranging from 0.89 to 0.93. The Self-Perception Profile for Children (SPPC) and Adolescents (SPPA) was used to assess patients’ self-worth [28,29]. The SPPC, meant for children aged 8–12 years, was completed by the participants in OP and OS. The SPPA, meant for adolescents aged 12–18 years, was completed by the participants of OW. Several aspects of self-perception were measured: school competence, social acceptance, athletic competence, physical appearance, behavioral conduct, global self-worth and close friends (measured in

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adolescents only). The Cronbach’s alphas of the SPPCscales were satisfactory, ranging from 0.62 to 0.93, with the exception of the SPPC-scale behavioral conduct at T2. Therefore, this scale score at T2 was not used for analysis. The Cronbach’s alphas of the SPPA-scales were also satisfactory, ranging from 0.62 to 0.86. The evaluation of the quality of daily functioning was measured with the DUX-25, the short form of the Dutch Children’s AZL/TNO Quality of life Questionnaire (DUCATQOL) [30]. The DUX-25 consists of 25 items, scored on a five-point Likert-scale. It assesses the affective appraisal of daily functioning in children, and consists of four domains: family functioning, bodily functioning, emotional functioning and social functioning. The items reflect children’s feelings about themselves, their parents and friends, and feelings about daily routines at home and at school. The total DUX-25 score can be obtained by adding up all the items scores. Higher scores represent better QoL. Although no validation studies have been published yet, the DUX-25 is reported to be internally consistent and reproducible [30,31]. The Cronbach’s alphas in the present study were satisfactory, ranging from 0.70 to 0.92. 2.5. Statistical analyses The Statistical Package for Social Sciences (SPSS), Windows version 11.5, was used for all analyses. Before conducting the final analyses several preparation analyses were conducted. Firstly, scale scores were computed and missing data imputed on the basis of the guidelines of the questionnaires used. Secondly, the internal consistency (Cronbach’s alpha) of the scales was calculated, and the distribution of the scale scores was considered. Thirdly, Student’s t-test and x2-tests were used to compare respondents and non-respondents with respect to their demographic and medical characteristics, in order to detect attrition bias. To test whether the psycho-educational group intervention affects disease-related skills and social- and emotional functioning in patients, intervention-related and social- and emotional outcomes at T1 and T2 were compared with baseline outcome scores (T0). Dependent sample T-tests were performed, or, if the sample size was smaller than 20

and/or the variable was not normally distributed, the nonparametric equivalent (Wilcoxon signed ranks test). A significance level of p < 0.01 was used; levels of p < 0.05 were reported as trends. Effect sizes (d) were calculated by dividing the mean difference (T0 T1 and T0 T2) by the standard deviation of the baseline score (T0). According to Cohen, effect sizes up to 0.2 were considered to be small, effect sizes about 0.5 to be moderate and effect sizes about 0.8 to be large [32].

3. Results 3.1. Patients A total of 116 patients participated in the psychoeducational group intervention. The participation rates were high: session one 96.5%, session two 99.1%, session three 96.5%, session four 89.9%, session five 86.2%, session six 91.2%. The patients who attended at least three of the six sessions were included in the analyses. Therefore, five patients were excluded. The remaining 111 patients participated in OP (N = 13, 11.7%), OS (N = 39, 35.1%), or OW (N = 59, 53.1%). The response rate was 98.2 at T0, 69.4 at T1 and 70.4 at T2 (Table 3). Two patients did not complete the first measurement so that 109 patients were included in the final analyses. They suffered from various chronic or life-threatening diseases; inflammatory bowel disease (IBD), childhood cancer and diabetes were reported most frequently. Other characteristics of the patients were listed in Table 4. Non-response at T1 and T2 was smaller among patients with IBD and patients treated for childhood cancer than among the other patients. However, with respect to the other characteristics listed in Table 4, respondents at T1 and T2 did not differ from the patients who did not complete the questionnaires at T1 and T2, respectively. In addition, respondents’ baseline scores (T0) on all outcome measures did not differ from that of the non-respondents, except the QoL outcome home functioning (DUX-25). The respondents at T1 reported a more favorable baseline score on this scale of the DUX-25 than the patients who did not complete the questionnaires at T1.

Table 3 Response at T0, T1 and T2 of the participants in the psycho-educational group intervention Pre intervention (T0) N Patients 8–10 years (OP) Patients 10–12 years (OS) Patients 12–18 years (OW) Total a

0–6 weeks post intervention (T1)

Half a year post intervention (T2)

%

N

%

N

%

13 39 57b

100 100 96.6

7 25 45

53.8 64.1 76.3

9 20 40

69.2 62.5a 75.5a

109b

98.2

77

69.4

69

70.4a

The 13 participants who did not reach half a year post intervention yet, were excluded from the analyses of response at T2; 7 patients aged 10–12 years and 6 patients aged 12–18 years. b The two participants who did not complete the questionnaires at T0 were not included in analyses concerning the effects of the intervention.

B.F. Last et al. / Patient Education and Counseling 65 (2007) 101–112 Table 4 Characteristics of the participants in the psycho-educational group intervention

Age at T0 (years) Age at diagnosis (years)

M

S.D.

Range

N

13.4 5.8 a

2.7 5.1

7.6–18.1 0.0–16.0

109 105

%

N

Gender Female Male

46.8 53.2

52 59

Intervention group Children aged 8–10 years (OP) Children aged 10–12 years (OS) Adolescents aged 12–18 years (OW)

11.7 35.1 53.1

13 39 59

Total

100

111

Diagnosis IBD Childhood cancer Diabetes Other

28.4 25.7 10.1 35.8

31 28 11 39

Education (current) Primary education Special primary education Secondary education Special secondary education Vocational education (low–middle–high)

37.7 8.5 40.6 3.8 9.4

40 9 43 4 10

Visible consequences Yes No

27.4 72.6

29 77

Limitationsb Appliances Diet Exercise Hearing Vision Speech

19.4 40.2 54.7 8.4 16.9 12.0

21 43 58 9 18 13

Psychosocial counseling child, last year No Psychologist Social worker Psychiatrist Other

58.9 31.8 0.9 0.9 7.5

63 34 1 1 8

a b

Median = 5.0 years; 5 years = 52.4%. More than one answer possible.

3.2. Intervention-related outcomes Short-term intervention effects (T1) were measured 0– 6 weeks after completion of the intervention (Table 5). Most of the patients’ disease-related skills, as measured with the QOK-c, were improved. Compared to the baseline score (T0), at T1 the patients reported more information seeking, more relaxation and positive thinking, and a higher total score at p < 0.001: T(1,73) = 4.9; T(1,73) = 4.8; T(1,66) = 5.3, respectively. The corresponding effect sizes were moderate, ranging from 0.54 to 0.60.

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Medium-term effects (T2) on intervention-related outcomes were also found (Table 6). Half a year after the intervention all assessed disease-related skills improved ( p < 0.001) in comparison to the baseline score. The patients reported more information seeking, higher social competence, more relaxation and positive thinking, and a higher total score: T(1,65) = 5.6; T(1,65) = 3.8; T(1,65) = 5.0; T(1,57) = 5.8, respectively. The effect-sizes were moderate to large, ranging from 0.49 to 0.70. With respect to patient’s cognitive coping strategies, as measured with the CCSS, neither significant short-term nor significant medium-term effects were found. However, on the medium-term patients tended to use more predictive control strategies than at baseline: T(1,65) = 2.1, p < 0.05. The improvements reported by the patients were confirmed by the parents, who perceived that their children used more disease-related skills after the intervention than before, such as relaxation techniques. Moreover, according to the parents, the patients seemed to be more satisfied after the intervention than before, and their behavior appeared to be more assertive (Tables 7a and 7b). 3.3. Social- and emotional outcomes Significant ( p < 0.01) short-term intervention effects on social- and emotional outcomes were small to moderate with effect sizes ranging from 0.25 to 0.52 (Table 5). Firstly, at T1 less behavioral–emotional problems (CBCL) were found than at baseline (T0). The patients appeared to be less withdrawn and anxious/depressive, and they reported less internalising, social and total problems: T(1,62) = 3.0, p < 0.001; T(1,62) = 3.2, p < 0.01; T(1,62) = 3.2, p < 0.01; T(1,62) = 2.6, p < 0.01; T(1,62) = 3.0, p < 0.01, respectively. Secondly, adolescent patients reported higher global self-worth at T1 than at baseline (T(1,38) = 4.1, p < 0.001), and they tended ( p < 0.05) to report a higher score on the SPPA-scales physical appearance and close friends. No short-term effects were found on the STAI-C, the scales of the DUX-25 and the SSP for children. A significant decrease in behavioral–emotional problems was also found half a year post intervention (T2): less withdrawal and anxiety/depression, and less internalising, social and total problems: T(1,59) = 3.6; T(1,59) = 4.1; T(1,59) = 4.3; T(1,59) = 2.7; T(1,59) = 3.8; T(1,59) = 3.8, respectively. Trends ( p < 0.05) were found on the CBCL-scales somatic complaints and attention problems: T(1,58) = 2.4; T(1,59) = 2.1. On the DUX-25 patients reported improvements at p < 0.01 on physical and total functioning; T(1,65) = 2.8 and T(1,65) = 3.5, respectively. In addition, patients’ emotional daily functioning tended to be improved at T2 in comparison with T0; T(1,65) = 2.2, p < 0.05. According to the SPPA, adolescents judged their physical appearance at T2 more favorable than at baseline (T(1,32) = 2.3, p < 0.01), and they tended to report higher global self-worth (T(1,32) = 2.6, p < 0.05). Trends to higher

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Table 5 Mean scores on intervention-related and social- and emotional measures, pre intervention (T0) compared to 0–6 weeks after the intervention (T1) N

Intervention-related outcomes Disease-related skills Total score Information seeking Social competence Relaxation and positive thinking

Pre intervention (T0)

Post intervention (T1)

M

M

S.D.

Effect size, d

S.D.

67 74 74 74

48.0 7.9 19.7 18.4

7.7 2.1 3.6 3.7

52.7 9.0 20.6 20.4

9.0 2.1 3.8 4.0

0.60** 0.55** 0.258 0.54**

73 73 74

8.9 23.0 12.2

1.6 3.6 2.1

9.2 22.6 12.3

1.7 4.7 2.1

0.20 0.11 0.03

63 63 63 63 63 63 63 63 63

32.7 13.0 8.0 4.2 2.8 6.6 3.3 4.0 6.4

22.2 8.5 7.7 3.1 2.3 5.3 3.0 3.4 6.4

27.2 10.5 6.9 3.2 2.6 5.1 2.5 3.4 5.6

21.4 8.6 7.5 3.0 2.7 4.6 2.7 3.0 6.0

STAI-C

67

34.3

7.2

33.4

9.7

0.13

DUX-25 Total functioning Home functioning Physical functioning Emotional functioning Social functioning

74 74 75 75 75

69.8 79.4 61.6 66.4 72.9

11.4 14.3 18.9 14.0 12.5

71.7 80.2 65.0 68.5 74.7

13.7 16.4 19.7 17.5 14.3

0.17 0.06 0.18 0.15 0.14

SPP-Children School competence Social acceptance Athletic competence Physical appearance Behavioral conduct General self-worth

24 24 24 24 24 24

16.7 15.3 15.4 18.7 17.7 18.5

3.7 4.2 4.0 3.2 2.7 2.9

17.5 15.9 16.2 18.3 18.2 18.6

3.3 5.0 4.7 5.1 3.1 2.8

0.23 0.14 0.19 0.12 0.20 0.02

SSP-Adolescents School competence Social acceptance Athletic competence Physical appearance Behavioral conduct Global self-worth Close friends

39 39 39 39 39 39 39

13.7 14.6 12.0 12.8 14.4 13.6 15.6

2.8 3.4 3.8 3.7 3.1 3.7 3.6

14.3 14.7 11.9 13.8 15.1 15.5 16.3

3.1 4.0 4.0 3.7 2.7 3.1 3.5

0.20 0.02 0.03 0.268 0.20 0.52** 0.198

CCSS Predictive control Vicarious control Interpretative control Social- and emotional outcomes CBCL parent report Total problems Internalising problems Externalising problems Withdrawal Somatic complaints Anxiety/depression Social problems Attention problems Aggressive behavior

0.25* 0.30* 0.14 0.32** 0.07 0.29* 0.25* 0.16 0.12

Note: The CBCL-Scales Cognitive Problems and Delinquent Behavior were not included in the analyses because of too low internal consistency. * p < 0.01. ** p < 0.001. 8 p < 0.05.

school competence at T2 than at baseline were found among adolescents as well as among pediatric patients; T(1,32) = 2.3 and T(1,18) = 2.3; p < 0.05, respectively. Finally, the T2-scores on the STAI-C indicated a medium-term decrease of patient’s anxiety; T(1,57) = 2.1, p < 0.05.

4. Discussion and conclusion 4.1. Discussion Chronically ill children are at risk of having problems in social adjustment and in psychological functioning,

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Table 6 Mean scores on intervention-related and social- and emotional measures, pre intervention (T0) compared to half a year after the intervention (T2) N

Intervention-related outcomes Disease-related skills Total score Information seeking Social competence Relaxation and positive thinking

Pre intervention (T0)

Half a year post intervention (T2)

M

M

S.D.

Effect size, d S.D.

58 66 66 66

47.6 8.0 19.3 18.0

7.3 2.2 3.5 3.7

53.3 9.4 21.0 20.6

9.2 1.8 3.8 4.5

0.60** 0.62** 0.49** 0.70**

66 65 66

9.0 23.2 12.7

1.7 3.9 2.0

9.4 23.4 12.3

1.6 4.9 2.5

0.258 0.04 0.16

60 60 60 60 59 60 60 60 60

33.4 13.7 7.7 4.6 3.0 6.7 3.3 4.0 6.1

21.0 8.7 6.8 3.6 2.6 5.1 3.1 3.4 5.7

25.3 9.8 6.5 3.3 2.2 4.7 2.5 3.1 5.1

18.8 7.4 6.4 3.1 2.3 4.2 2.9 2.4 5.0

0.39** 0.44** 0.19 0.36** 0.338 0.40** 0.27* 0.258 0.18

STAI-C

58

34.0

6.7

31.9

7.0

0.318

DUX-25 Total functioning Home functioning Physical functioning Emotional functioning Social functioning

66 66 66 66 66

69.0 78.9 59.5 66.2 72.7

11.2 13.2 18.9 14.0 11.4

72.8 80.5 65.9 70.6 75.5

13.1 15.9 18.6 16.6 12.7

0.34* 0.12 0.34* 0.318 0.24

SPP-Children School competence Social acceptance Athletic competence Physical appearance Global self-worth

19 19 19 19 19

16.7 16.1 15.5 17.7 18.2

3.8 4.8 4.9 3.6 3.7

18.6 17.8 16.1 17.1 18.8

3.6 5.2 4.5 5.3 3.6

0.528 0.37 0.13 0.17 0.18

SSP-Adolescents School competence Social acceptance Athletic competence Physical appearance Behavioral conduct Global self-worth Close friends

33 33 34 34 33 33 33

13.5 14.2 11.5 12.4 14.7 13.7 15.9

2.7 3.1 4.0 3.6 3.1 3.5 3.4

14.6 14.8 11.1 14.0 15.6 15.0 16.2

2.7 2.6 4.2 3.4 3.0 3.1 3.5

0.418 0.17 0.11 0.44* 0.30 0.388 0.07

CCSS Predictive control Vicarious control Interpretative control Social- and emotional outcomes CBCL parent report Total problems Internalising problems Externalising problems Withdrawal Somatic complaints Anxiety/depression Social problems Attention problems Agressive behavior

Note: The Scales Cognitive Problems (CBCL), Delinquent Behavior (CBCL) and Behavioral Attitude (SPPC) were not included in the analyses because of too low internal consistency. * p < 0.01. ** p < 0.001. 8 p < 0.05.

such as lower self-esteem [1–4]. A psycho-educational group intervention was designed aimed at empowerment of children with a chronic disease by teaching active use of coping strategies. Improvements in information seeking, social competence, positive thinking, and socialand emotional functioning were especially presupposed. Promising effects were found in the current study. Results

showed that patients’ disease-related skills were improved. A few weeks as well as half a year post intervention the patients reported significantly more relaxation and positive thinking, and more information seeking than before the intervention. Moreover, half a year after the intervention patients reported higher social competence.

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Table 7a Mean scoresa on intervention-related outcomes as perceived by the parents, pre intervention (T0) compared to 0–6 weeks after the intervention (T1) Parent report

Disease-related skills Answering questions Relaxation Personal competencies Assertive behavior Self-worth (satisfaction) a * **

N

70 71 70 70 67

Pre intervention (T0)

Post intervention (T1)

M

S.D.

M

S.D.

1.9 2.9 2.0 2.2 2.4

1.0 0.8 0.9 0.8 0.8

1.7 2.4 1.7 1.9 2.1

0.7 0.7 0.8 0.7 0.7

Effect size, d

0.21 0.55** 0.40* 0.35* 0.42*

Lower scores represent more disease-related skills, and more satisfaction: 1 = (almost) ever, 2 = often, 3 = sometimes, 4 = (almost) never. p < 0.01. p < 0.001.

Table 7b Mean scoresa on intervention-related outcomes as perceived by the parents, pre intervention (T0) compared to half a year after the intervention (T2) Parent report

Disease-related skills Answering questions Relaxation Personal competencies Assertive behavior Self-worth (satisfaction) a * **

N

65 65 64 65 64

Pre intervention (T0)

Half a year post intervention (T2)

Effect size, d

M

S.D.

M

S.D.

2.0 2.9 2.0 2.3 2.4

0.9 0.7 0.8 0.9 0.7

1.6 2.4 1.8 1.9 2.1

0.7 0.7 0.6 0.7 0.7

0.45* 0.71** 0.27 0.55** 0.44*

Lower scores represent more disease-related skills, and more satisfaction: 1 = (almost) ever, 2 = often, 3 = sometimes, 4 = (almost) never. p < 0.01. p < 0.001.

Positive effects on social- and emotional outcomes were also found. Firstly, according to their parents, patients showed less behavioral–emotional problems, especially less internalising problems, a few weeks as well as half a year post intervention compared to pre intervention. Secondly, patients reported higher quality of daily functioning half a year after the intervention. Thirdly, adolescents experienced higher global self-worth and better physical appearance, respectively, a few weeks and half a year post intervention. The results are similar to findings of earlier studies on the effectiveness of psycho-educational and self-management interventions mainly done in homogeneous patient groups, like children with diabetes and asthma [14]. The findings of this study confirm the results of the pilot study done by Creedy et al. [15] in a small, but heterogeneous group of children with a chronic health condition. The results are in favor of children with seldom occurring chronic diseases for whom organising heterogeneous patient groups was advocated by Plante et al. [14]. Moreover, the current study is the first study showing beneficial effects of such a standardised intervention program in a heterogeneous patient group with a broad age-range and over a longer period of time. A problem in evaluating the effectiveness of psychoeducational interventions is to identify the contribution of the different elements of the intervention to changes in generic measures of adjustment and well-being. A limitation of our design is that it does not include the possible influence

on the outcome measures of contributive factors like joining a group of fellow-patients and the systematic attention of the group leaders in the participants’ well-being. This consideration is stressed by the observation of enthusiasm by the majority of participants in evaluating the group experience. Also the vast majority of the parents reported that their child went to the group sessions with pleasure. Otherwise, the consistent finding that the learned disease-related skills persist over time can be interpreted as indicative for the promising results, though not a final prove. The finding of improvement of results over time suggest in our opinion learning effects. Kendall [19] point out in his cognitivebehavioral treatment of children with anxiety disorders to the importance of increasing feelings of competence by educating positive thinking and practicing problem solving behavior. Repeated practicing these skills is necessary to establish newly learned behavior and by that a feeling of ‘mastery’ [19]. We incorporated similar elements in our intervention program. Furthermore, in clinical contacts many of the parents of the children who participated reported that their child practiced their newly learned skills during events after ending the program. Also many of the teenagers who took part in the program reported in the same way. As a consequence the use of the newly learned coping strategies is probably reflected in the improved results 6 months later. A limitation of our study is the possible selection bias. The children and teenagers who subscribed to the program

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might suffer from more problems than children who did not participate. This difference could have influenced the results and restricts generalisation of findings. Restrictive is also the fact that children and teenagers who took part in the study had to be able to speak and write the Dutch language. So, the results of this study cannot be generalised to populations of not Dutch speaking immigrants. Another consideration is the need to look after characteristics of children and teenagers previous to participation in the intervention program. Wallander and Varni [4] suggested that various resistance and protective factors determine the adjustment of the child with a chronic disease. It is a challenge to study how these factors are related to the outcome measures used. In encouraging children in showing pro-active behavior and open communication related to their disease some ethical considerations should be taken into account. Though open communication about the disease is a goal of the intervention the group leaders have to instruct the participants to be careful in informing others about the individual health status extensively. Learning to build a balance between the facts of the disease and what the other person need to know about these facts in order to understand the participant’s situation is a guideline of the intervention.

emotional support group only getting attention from the group leaders and meeting fellow-patients, and (3) providing a larger sample size in order to be able to investigate which patients benefit most from the intervention.

4.2. Conclusion

References

The first steps towards an evidence-based psycho-educational intervention for children and adolescents growing up with a chronic disease have been set. A standardised intervention was developed based on clinical experience and cognitive-behavioral theories, and then applied to pediatric patients of different ages, while investigating the experiences of participants, parents and therapists. A study design consisting of one pre test and two post tests was used in order to provide an indication of the effectiveness of the intervention. Although the study design and instruments were not strong enough to prove effectiveness, the findings indicate positive short-term as well as medium-term intervention effects. The results are promising because moderate effects were found, persistent over time, and because the patient-reported improvements in disease-related skills were confirmed by the parent-reported outcomes. The effects concern clinically relevant aspects of patients’ functioning, such as decrease of internalising problems, and increase of global self-worth and physical appearance among adolescents. It is notable that, before the intervention, most of the participating patients scored on average below the norm – that means less favorable than the norm – on these and other outcomes, while they seemed to differ from the norm no longer after the intervention. Further research is needed to establish the effects of the intervention, and look for age and gender differences. The next steps would be: (1) improving the validity and reliability of the instruments that measure interventionrelated outcomes such as the disease-related skills, (2) inclusion of a control group without intervention, or an

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4.3. Practice implications Beneficial effects can be expected from the implementation of a psycho-educational group intervention for children with heterogeneous chronic health conditions.

Acknowledgements We would like to thank all psychologists who contributed to the OK program, the physicians who contributed to the recruitment of the patients and for responding to questions during the program, and colleagues who participated in the data collection: Saskia Vlaming, Marieke de Boer, Yvonne Zaal, Madelon Bronner, Lobke Silberbusch. The Maag Lever Darm Stichting (MLDS) financially contributed for the part of the IBD-patients (SWO 01-12). The second author is funded by the Dutch Cancer Society.

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