Background
Chronic diseases are very common in children and adolescents. There is a wide range in reported prevalence rates of chronic health conditions in childhood between 0.22 and 44% due to the different concepts and operationalisations [
1]. The extensive and representative “Study on the health of children and adolescents in Germany – KIGGS” found that according to their parents 16.2% of children and adolescents up to the age of 17 years had a chronic health problem [
2].
Insufficient treatment of chronic diseases in childhood and adolescence often leads to their persistence, impairs development, and ultimately leads to lower quality of life and professional capacity in adulthood [
3]. Therefore, medical rehabilitation for children and adolescents plays a significant role in the healthcare system in Germany, where chronically ill children and adolescents are treated by a multi-professional team in a multimodal approach [
3‐
5]. Typical components of rehab treatment are, for example, psychological therapy, physio- and ergotherapy, and health education.
The International Classification of Functioning, Disability and Health: Children and Youth Version (ICF-CY) serves as the conceptual framework for rehabilitation [
6]. The ICF-CY is based on a bio-psycho-social model and is used to describe health conditions as well as health-related conditions. The functioning and disability of a person is seen as a dynamic interaction between health conditions and contextual factors. The contextual factors are divided into environmental and personal factors. While environmental factors are further classified, personal factors are not yet classified because of the considerable socio-cultural differences that exist worldwide. However, there are national approaches to specifying them [
7].
A theoretical approach that also highlights the influence of contextual factors on illness management is the Common-Sense Model of Self-Regulation (CSM) [
8]. This framework describes how individuals who experience or anticipate a health threat select, initiate, and maintain behaviours to manage their illness. The CSM assumes that being faced with a health problem leads to the activation of memory structures and the development of cognitive and emotional representations of illness and treatment as well as of behavioural beliefs such as self-efficacy [
9,
10]. These representations influence personal coping strategies, and those in turn health outcomes. Individuals appraise the success or failure of their self-regulatory actions and adjust their future coping strategies as well as their cognitive and emotional representations.
The CSM emphasises that self-regulation is not a process carried out in solitude but rather is one shaped by contextual factors [
11]. Contextual factors have an impact on every aspect of the CSM: on illness and treatment representations, coping procedures, the appraisal of self-regulation, and the health outcome. Such contextual factors might include but are not limited to personal trait factors (biological and genetic factors, personality), personal factors in the sense of prior experience of the medical system [
12], the input and expertise of others [
11], and personal and cultural values, beliefs, and norms [
13,
14]. Experiences within an individual’s family, circle of friends or even society at large affect the perception, knowledge, and expression of illness as well as health behaviour, for example whether individuals even seek help, what kind of help they seek, how they evaluate the treatment, and the relationship between families and professionals [
15‐
17]. Health professionals can also influence patients‘cognitive beliefs, for example by giving a positive prognosis or telling them that the therapy is safe and effective [
12,
18]. Information provided by physicians can modify the relation between maladaptive health beliefs resulting from earlier personal experience and illness representations [
19]. Furthermore, social support as well as cultural beliefs and values also influence the emotional representation of illness and treatment [
20,
21].
Regarding personal factors, studies have shown self-efficacy beliefs, gender, age, race, and prior treatment experience to have an influence on illness and treatment representations [
22‐
25].
A number of studies have focused on contextual factors in self-regulation in children and adolescents. Personal illness experience, age, verbal intelligence, and socio-economic status have been identified as significant predictors of illness conceptualisation [
26], and parents‘beliefs about a child’s illness or disability have been found to influence choice of treatment [
17]. However, to our knowledge, contextual factors of treatment representations in children and adolescents have not yet been investigated.
As rehabilitation plays a significant role for chronically ill children and adolescents, the goal of our analysis was to explore the subjectively perceived contextual factors of rehab-related treatment representations of children and adolescents, and to assign those perceptions to the environmental factors of the ICF-CY [
6] and the recommendations of personal factors of Grotkamp and colleagues [
7].
Methods
Design and setting
We conducted a qualitative study to explore rehab-related treatment representations and associated contextual factors in children and adolescents in inpatient rehabilitation. The study was carried out between July and September 2018. Semi-structured interviews were conducted with children and adolescents at the rehabilitation clinic Edelsteinklinik. The study received approval by the ethics commission of the University of Freiburg, Germany (195/18). Written informed consent was obtained from participating children and adolescents and their parents.
Participants
Approximately 2 weeks before the beginning of rehabilitation, eligible children and adolescents were called at home and informed about the study by the patient management of the clinic. If the children or adolescents and their parents showed interest in participating, they were asked to give their written informed consent when they arrived at the clinic. Inclusion criteria required the children and adolescents to be 12 to 17 years old. Participants were selected using a purposive sampling approach with the aim of maximising variation in the sample in terms of age, gender, and diagnosis.
Procedure
The new developed interview guideline was based on previous research on treatment representations in adult rehabilitation patients and qualitative research about patients’ experiences of medical rehabilitation [
27,
28]. The interview guideline is attached as supplementary file
1.
All face-to-face interviews were individual interviews, meaning that only the child or the adolescent and the interviewer were present during the interview. They were conducted on the day of the participant’s arrival or the following day. Both female interviewers were psychologists with practice experience in interviewing and conversation techniques.
To initiate the conversation with the child or the adolescents and introduce the theme, the interviewer told the participant a little bit about herself (name, occupation, place of employment) and about the background and objective of the study. Then, the participating children and adolescents were asked a few initial questions, e.g., about their age, reason for rehabilitation, and whether they were alone or with a relative in the rehab centre. After this entry into the conversation, the interview started with an open-ended narrative question about the expectations and beliefs of the child or adolescent concerning his or her beginning rehab treatment. This was followed by specific questions about process and outcome expectations, concerns, and emotions regarding rehab treatment that guided the narratives thematically. In addition, a number of questions addressed contextual aspects of treatment representations concerning general conditions before rehabilitation and the social environment.
All interviews were digitally audio-recorded and in addition some field notes were taken. Afterwards, the tape recordings were anonymised and transcribed verbatim by a transcription service company. The interviews were conducted and transcribed successively over 3 months so that data saturation could be monitored. After the interview, participants were asked to fill in a brief demographic questionnaire.
Data analyses
To analyse the data we conducted a thematic content analysis using a combined deductive and inductive coding approach [
29]. In terms of the deductive approach, the analysis was framed by the interview guideline and previous research, especially a questionnaire assessing treatment representations in adult rehabilitation patients [
27], as well by the underlying theoretical concept, the CSM [
8]. Additionally, an inductive approach was applied to identify themes in the dataset proceeding bottom-up, close to the spoken word of the children and adolescents. Sticking close to these statements, the researchers tried to take a step back from their theoretical knowledge in order to maintain reflexivity. Two researchers (CH, GM) analysed the first interview independently and developed initial codes bottom-up from the transcript text. The different sets of codes were discussed in terms of similarities, discrepancies, and how to proceed with the coding. After reconciliation and synthesis of the two sets of codes, both researchers analysed a second interview independently. After further discussions in the researcher team about the codings, each of the two researchers analysed the remaining interviews separately. Throughout multiple meetings and reviews the extracted themes and subthemes were specified, text paragraphs re-read, and codes refined to capture an accurate depiction of perspectives of children and adolescents. In cases of ambiguity or disagreement, a third person in the research team (MG) was called in to arbitrate. This recursive analysis process enabled a sustainable system of codes to be developed. Rules for carrying out the coding were defined to ensure interrater-reliability and transparency.
All data were organised and coded using the qualitative software MAXQDA (Version 12).
The demographic questionnaire was analysed with IBM SPSS Statistics 25. Information about the diagnoses of participants was documented by the physicians in the rehab clinic.
Discussion
In our qualitative analysis, children and adolescents reported a range of perceived contextual factors associated with their rehab-related treatment representations. These contextual factors could be mapped to the classification of environmental and personal factors in the context of the ICF-CY [
6,
7].
Two important environmental factors emerged: namely, the idea for rehabilitation and information from the clinic. Corresponding to the notion that illness management occurs in a social context, the idea of undergoing rehab treatment could be encoded to the “support and relationships” chapter of the ICF-CY [
6]. The idea for rehabilitation usually came from various persons, as stated in the interviews, illustrating the shared responsibility for managing the illnesses of children and adolescents. On the one hand, children and adolescents in the interviewed age group were increasingly taking on responsibility for managing their own illness; on the other, illness management in this age group could still be shared between parents and the children, especially with the younger patients in our sample. Consequently, Sonney and Insel have argued for a reformulation of the CSM in paediatric care [
31]. They suggest a common-sense model of parent-child shared regulation that includes parent and child representations, both of which influence the coping procedure and management of the disease.
Furthermore, information as an environmental factor (the “general products and technology for education” chapter) was shown to have an impact on the self-regulation process and thus on individual representations of illness and treatment. In this regard, Glattacker, Heyduck and Meffert showed that information adapted to patients’ illnesses and treatment perceptions, as well as to their information needs, leads to greater perceived personal control as part of illness representations [
32]. Moreover, information could help to prevent or correct false expectations [
19].
Themes identified in the interview data that could be ascribed to personal factors included the living situation before rehabilitation, the idea for rehabilitation, previous attempts to find solutions, rehab pre-experiences, searches for information about the clinic by oneself, and the assumed attitudes of parents. These themes could be encoded to the categories “situation and socio-economic / cultural factors”, “attitudes, basic skills, and behavioural habits”, and “other health factors” proposed by Grotkamp et al. [
7]
Statements in the interviews about the living situation before rehabilitation comprised aspects such as stress at home, problems at school, and a lack of social contact that could increase interviewees’ motivation to go into rehabilitation. Moreover, these aspects could influence process and outcome expectations (e.g., stress reduction, improvement in school, meeting new friends), conceptualised as dimensions of rehab-related treatment representations in adolescents [
30].
The idea for rehabilitation is not only an environmental factor in terms of the input of others but it is also a personal factor that demonstrates the self-competence of the adolescent in developing the idea for treatment by him−/herself. Self-competence in terms of self-management probably has a strong influence on self-regulation.
Previous attempts to find a solution could influence emotional and cognitive treatment representations too, and in both directions: patients with previously unsuccessful attempts might be either especially hopeful that rehab treatment finally helps or sceptical because they assume that it will not help either. Accordingly, representations are further influenced by previous rehab treatment experiences. Children and adolescents who had already been in rehabilitation reported that they had presumptions about the rehab treatment. Sonney and Insel have argued that past experiences shape future self-regulation [
31]. Having a history of former treatment might lead to more accurate expectations [
23].
A further relevant contextual factor was the childrens’ or adolescents’ perceptions of the parents’ treatment representations. Our interviewees highlighted the necessity and importance of rehabilitation for their parents. Furthermore, the process and outcome expectations they attributed to their parents were similar to their own [
30]. Research shows that in children and adolescents, carer beliefs have notable effects on treatment adherence and outcomes [
33,
34]. Parental beliefs might also shape the illness representations of their children, while the extent of the match between the illness representations of parents and of adolescents might influence adolescents’ self-management [
35]. In Germany, it is possible for children and adolescents in rehabilitation to be accompanied by a family member. This not only allows to address illness and treatment representations of children and adolescents but also parents’ representations, and to empowers family supporters with the aim of improved patient self-management and better health outcomes [
36].
Limitations
One limitation of the study is the selectivity of our sample. Only a quarter of children and adolescents who were asked to participate actually agreed to take part. Those who did not may have differed from those who did on subjectively important contextual factors. Due to the high number of children and adolescents with a primary diagnosis of obesity in the rehab centre, the range of primary diagnoses within our sample was also limited. Nevertheless, other diagnoses were represented as comorbid diseases. Furthermore, in rehabilitation the priority is given not to diagnoses but to the restrictions on functioning they incur. In addition, it should be stated that we only presented contextual factors of rehab-related treatment representations that were reported by the children and adolescents in the interviews. Given the variety of possible environmental and personal factors [
6,
7], further important contextual factors may influence the self-regulation process. Interpreting our results, it should be taken into account that the generalizability of our results to other age groups such as younger children is limited. We decided to interview older children and adolescents at the age of 12 to 17 years. This lifespan is very dynamic due to biopsychosocial changes. This might result in reporting other subjectively important contextual factors for treatment representations than would have been the case in younger children. However, we chose this age group because treatment representations are abstract constructs that can be hardly verbalized at younger age – keeping in mind the developmental stages of abstract thinking. Furthermore, for children younger than 12 years surveys in rehabilitation are commonly filled in by their parents. A further limitation is that we did not conduct any member checking of the results.
Implications for further research and practice
For children and adolescents in particular, further studies should consider a broader social environment to clarify whose input works as a contextual factor of treatment representations, as this may be particularly relevant in this age group. In adolescence, the influence of peers and social media might be more pronounced. Additionally, practitioners can also influence patients’ beliefs and health outcomes and should therefore be examined further in future research [
18,
21]. Such associations should preferably be explored in larger samples and with a different, for example quantitative, methodology.
For parental beliefs, we asked the children rather than the parents themselves. To what extent actual parental expectations and childrens’ or adolescents’ perceptions of their parents’ beliefs match, as well as what impact they have on the self-regulation process of children and adolescents, should be investigated in further studies.
With regard to clinical practice, a central recommendation might be to pay more attention to exploring subjective contextual factors. Such variables might serve as facilitating factors as well as barriers to self-regulation and could be modified in a positive way, for example, individually adapted information and brief psychological interventions could optimise patients’ expectations, minimise unrealistic expectations, and ultimately lead to better health outcomes [
32,
37]. Furthermore, considering personal contextual factors such as attitudes, competences, and habits might lead to more appropriate allocation of medical care and customised treatment [
38].
Conclusions
The development, maintenance, and change of expectations as an underlying component of treatment representations [
37] takes place in a dynamic process that is influenced by contextual factors [
12]. Although contextual factors are an important element of the CSM, studies of this framework have to date often failed either to include or focus on this aspect [
39]. The present qualitative analysis gives some first indications of relevant contextual factors regarding rehab-related treatment representations as reported by children and adolescents in inpatient rehabilitation. This field of research deserves further attention because contextual factors are relevant for self-regulation, especially in dealing with chronic diseases that occur more and more frequently in children and adolescents. Contextual factors may act as facilitating factors mitigating the negative effects on functioning of a health problem (e.g., the optimistic beliefs of professionals) as well as barriers that hinder participation (e.g., the poor accessibility of health service providers). However, contextual factors and their influencing potential must be seen from an individual point of view, because the same contextual factor might be experienced as facilitative or aggravating depending on the person’s health condition.
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