Available via license: CC BY-NC-ND 4.0
Content may be subject to copyright.
Laura Kluepfel1*, Sandra Fahrenkrog1, Madeleine Stanek2,
Anika Zembic1, Judith Stumm1
Background: Medical rehabilitaon for children and adolescents in Germany has been strengthened in recent years, including facilitated
admission of parents/caregivers, leading to an increase in the number of ‘accompanying persons’ in the rehabilitaon seng. The aim of this
study was to explore the roles of accompanying persons in rehabilitaon, taking into account the perspecves of dierent stakeholders.
Methods: Semi-structured interviews were conducted with 12 accompanying persons at the beginning and the end of rehabilitaon, as well as
18 healthcare providers with dierent areas of experse. Data were analysed deducvely and inducvely using framework analysis.
Results: In addion to the topics of pre-rehabilitaon-informaon and the general conicng character of accompanying persons, three role
categories could be idened within the rehab seng: Accompanying persons as child-caregiver, self-caregiver and clients of care. These roles
are associated with dierent demands, needs and tasks.
Conclusions: Our ndings suggest that the concept of ‚accompanying person’ should be further developed. Both clinical sta and
accompanying persons themselves should become more aware of the dierent role-requirements. Greater consideraon of the dierent
needs and resources of accompanying persons is essenal to provide sustainable support for both children and caregivers.
chronic illness
Keywords
Abstract
1Charité – Universitätsmedizin Berlin, Instute of Medical
Sociology and Rehabilitaon Science, Campus Charité
Mie, Charitéplatz 1, 10117 Berlin
*laura.kluepfel@charite.de
2Deutsche Rentenversicherung Rheinland-Pfalz,
Eichendorstraße 4-6, 67346 Speyer
–
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Hintergrund: Die medizinische Rehabilitaon für Kinder und Jugendliche in Deutschland wurde in den letzten Jahren u.a. durch die erleichterte
Mitaufnahme von Eltern/Betreuenden gestärkt. Dies führte zu einem Anseg der Zahl der „Begleitpersonen“ in der Rehabilitaon für Kinder
und Jugendliche. Ziel dieser Studie war es, die Rollen von Begleitpersonen in der Rehabilitaon zu untersuchen, wobei die Perspekven von
verschiedenen Akteur:innen berücksichgt wurden.
Methoden: Es wurden semistrukturierte Leiadeninterviews mit 12 Begleitpersonen zu Beginn und zum Ende der Rehabilitaon sowie mit 18
Klinikmitarbeiter*innen aus unterschiedlichen Fachgebieten geführt. Die Daten wurden inhaltsanalysch kombiniert dedukv und indukv
miels der Frameworkanalyse analysiert.
Ergebnisse: Neben den Themen der Vorab-Informaonsvermilung und dem generellen Konikt bzgl. der Rolle der Begleitpersonen konnten
der Rollenkategorien im Rehabilitaons-Seng idenziert werden: Begleitpersonen als Kinderbetreuer:innen, Selbsürsorgende und
Fürsogeklinet:innen. Diese Rollen sind mit unterschiedlichen Anforderungen, Bedürfnissen und Aufgaben verbunden.
Schlussfolgerungen: Die Ergebnisse der Studie legen nahe, dass das Konzept der „Begleitperson“ einer Weiterentwicklung bedarf. Das Bewusstsein
für die unterschiedlichen Rollenanforderungen sollte sowohl bei Klinikmitarbeiter:innen als bei den Begleitpersonen selbst geschär werden.
Eine stärkere Berücksichgung der unterschiedlichen Bedürfnisse und Ressourcen der Begleitpersonen ist für eine nachhalge Unterstützung
sowohl der Kinder als auch der Begleitpersonen selbst von zentraler Bedeutung.
Abstract
nischer Krankheit
Keywords
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INTRODUCTION
In recent decades, there has been a shift in focus in
Germany from acute to chronic illnesses among children
and adolescents. This has inuenced the growing
importance of rehabilitative measures for children
and adolescents (Petermann et al., 2017; Schlack &
Brockmann, 2014). According to data from the baseline
survey of the KiGGS study (Child and Adolescent Health
Survey of the Robert Koch Institute), 39% of children
and adolescents have a chronic illness (Neuhauser &
Poethko-Müller, 2014).
Sick children (and adolescents) are dependent on care
from a family or family-like context (Thyen, et al.,
2021). The care and illness management of chronically
ill children and adolescents requires a high level of
support and care from families and/or close carers and
also presents them with physical and psychological
challenges, especially in coping with everyday life
(Wiegand-Grefe et al., 2022). The qualitative study by
Jürgensen et al. 2017 shows that the rehabilitation goals
of families with chronically ill children are primarily
aimed at strengthening family resources (Jürgensen et
al., 2017).
The roles that parents and other caregivers take on, both
in care and support in the home environment and during
a rehabilitation program, are heterogenous. As part of a
scoping review, Smith et al. (2021) found that a variety
of roles of parents of children with chronic illnesses can
be derived during a rehabilitation intervention (Smith &
Samuels, 2021a). The role that parents take on depends
on the individual parents and their situation (Forsingdal
et al., 2014; James & Chard, 2010).
The strengthening of medical rehabilitation services for
children and adolescents in Germany planned by the
German Government is one of the aims of the Flexible
Pensions Act (“Flexirentengesetz”), which came into
force in 2017, and includes the extension of the “right
to be accompanied by an accompanying person (AP) if
this is necessary for the implementation or success of the
service [...].” (§ 15a SGB VI). AP are usually parents or,
in rare cases, close carers of chronically ill children and
adolescents.
The “Rehabilitation 2019” statistics show that in 2019,
57% of children (compared to 34% in 2014) were
accompanied during their rehabilitation stay by a person
with custody (Deutsche Rentenversicherung, 2019). This
could indicate an increasing family-orientation in child
and adolescent rehabilitation (Thyen et al., 2021).
The concept of taking accompanying persons into
rehabilitation for children and adolescents must be
distinguished from the concept of “family-orientated
rehabilitation” which is a fully inpatient aftercare
programme integrated into standard care for severely
chronical ill children, siblings and their parents (Leidig
& Maier, 2021).
The inclusion of accompanying persons must also be
distinguished from the so-called “parents-child measure”,
which falls within the responsibility of statutory health
insurance and focusses on the parent who is at risk of
illness or already ill. In this case, the child is only an
‘accompanying person’ and is not treated (Widera et al.,
2017).
The procedure laid down in the legal text (Section 15a
SGB VI) for bringing accompanying persons into child
and adolescent rehabilitation places the child at the centre
of the treatment. The AP has no need for treatment of their
own and should be guided as a “co-therapist” (Widera et
al., 2017).
In Germany, the implementation of accompanying person
programmes (APP) has been piloted in projects, however
there is still no empirical data on the design and impact of
these programmes or on the perception and satisfaction of
participants in the German-language literature.
How accompanying persons can be involved in the
rehabilitation process of children and adolescents in
the most benecial way possible and how this can be
adequately realised is not further specied in the legal
text. As part of the “accompanying persons key issues
paper” adopted in January 2022, rehabilitation clinics can
develop concepts for accompanying persons by the end
of 2024 and implement them with nancial support after
review by the lead pension insurance provider (Deutsche
Rentenversicherung, 2021).
The active involvement of parents, respectively close
family caregivers, in children’s therapy is also used and
discussed in the international context. The naming and
design of programmes that involve parents varies from
country to country, depending on the indication and the
legal requirements.
Thus, the concept of family-centred practice appears
to be a widely used framework internationally.
A family-centred approach is characterised by activities
in which information is shared so that informed decisions
can be made. It can address families’ priorities and
choices, and collaborative partnerships between families
and clinical staff are considered essential (King et al.,
2022).
In the family-centred approach from Ontario, for example
the optimal development of the child takes place in a
supportive family context. The active participation of
parents in the rehabilitation programme includes, among
other things, involvement in all therapeutic processes
and the exchange of information for further therapeutic
activities in the home environment (Phoenix et al., 2020).
In addition to the core values of the family-centred
approach, there is an increasing shift from impairment-
based interventions to interventions that focus on
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improving social participation. This shift can be partly
related to the International Classication of Functioning,
Disability and Health for Children and Youth, which
places great emphasis on the interaction between the
child and their social context (WHO, 2016). Even though
the family-centred care model, which is widely used
internationally and considered best practice, cannot be
applied in all its aspects to the APP here in Germany,
both models still have something in common. Namely,
the active involvement of parents or close caregivers in
the rehabilitation of their children, which has a positive
inuence on the empowerment of parents and close
caregivers (Kruijsen-Terpstra et al., 2016; Vroland-
Nordstrand et al., 2018).
As international research has shown, parents take on
several roles in the rehabilitation of their children such
as
Bringer, Supporter, Informer, Observer, Learner,
Implementer, Adaptor, Collaborative decision-maker,
and Advocate
(Smith & Samuels, 2021)
,
each of which is
associated with a different set of expectations and tasks.
When it comes to the specic concept of ‘accompanying
person’, the different roles of parents or close caregivers
in rehabilitation may be further explained, or the
behavioural expectations may also change in part due
to the predetermined order implied by the theoretical
concept (Deutsche Rentenversicherung, 2021). This
paper reports on qualitative data pertaining to the role and
involvement of caregivers in context of clinical children
and adolescent rehabilitation of two rehabilitation clinics
in Germany, which have been implementing APPs since
2018 and 2021. The core elements are training, education
and advice on conicts in the everyday context.
The aim was to explore the main target group of the APP
to be evaluated, namely the AP themselves, both from
their own perspective and from the perspective of the
clinical staff involved.
Qualitative interviews were conducted with AP and clinic
staff. This interview study is embedded in a superordinate
study, which is funded by the German Pension Insurance
Rhineland-Palatinate for a period of 36 months.
METHODS
Study design
To nd out how both accompanying persons and
rehabilitation clinic staff perceive the programme, we
conducted semi-structured qualitative interviews.
Methods, data-analysis, and ndings were reported in
accordance with the COREQ-Guidelines (Tong et al.,
2007). The qualitative interviews were embedded in a
parallel mixed methods design in which, in addition to
the qualitative data, the effectiveness was also examined
via a questionnaire survey.
Participants
Recruitment took place between October 2022 and
March 2023. We included various experts from the
rehabilitation clinic staff (moto therapists, ergo therapists,
psychologists, paediatricians, nurses, social workers,
physiotherapists) who are part of the APP and work in the
rehabilitation clinics at least 2 years. Purposive sampling
was chosen to achieve the greatest possible heterogeneity
of perspectives.
The AP were interviewed at the beginning and at the end
of their stay, which was between four and six weeks. The
sampling of the accompanying persons was continuous
and rather pragmatic. The study nurse employed by the
project provided information about the project and the
APP at an information event when the AP arrived. In this
context, the study nurse acted as gatekeeper by inviting
all accompanying persons to an interview and motivating
them to participate. Despite the pragmatic approach, the
aim was to obtain a sample as heterogeneous as possible.
In addition, the study team created posters to raise
awareness of the study and to recruit participants for the
study and specically for participation in the interviews.
These were displayed in the clinics and included as yers
in the AP folders.
Interview guideline
Both semi-structured interview guidelines were created
in an iterative process in teamwork (JS, LK, SF).
The guidelines consisted of several thematic blocks,
a narrative-generating question and corresponding
maintenance and control questions (
see appendix 1, 2 and
3
). Before the interview began, socio-demographic data of
the participants, such as age, gender, number of children,
living situation, etc., was surveyed and documented by
the interviewer.
The applicability of the guidelines was tested in a pilot
interview. During the interviews and after reviewing
the rst transcripts, the guidelines were thematically
reviewed and sharpened. No changes relevant to the
content were made during the interviews.
Data collection
The Ethics Committee of Charité – Universitätsmedizin
Berlin (EA2/297/21) approved the study. Informed
consent was obtained prior to data collection.
The expert interviews were conducted via telephone
by two trained qualitative researchers (LK, SF) with
different professional backgrounds (social scientist /
health scientist, psychologist) and ranged from 35 to 74
minutes. The AP were also interviewed via telephone
but also partly in presence, by one trained qualitative
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researcher (JS) (health scientist / Master Public health)
with support of the study nurse (MS) (sport scientist and
movement therapist in one of the cooperating study-
rehabilitation clinics) and ranged from 10 to 33 minutes.
To our knowledge, the interviewees were alone during the
telephone-interviews, 2 participants were in company of
their infants. Field notes were taken during the interview.
Interviews with the AP at two different points in time
were each conducted using two different guidelines;
another was developed and used for clinical staff.
No repeat interviews were carried out. Data were
collected until saturation of ideas was reached. Interviews
were audio-recorded and transcribed (MS; transcription
ofce) verbatim in anonymised form. Anonymisation
was achieved by numbering and, in the case of clinic
staff, by naming their job title, which we have omitted
here. The transcripts were not returned to the interview
participants.
Data analysis
All identifying information was removed from
transcripts The interviews were analysed deductively and
inductively using framework analysis (Gale et al., 2013)
(
see appendix 5 and 6
). The MAXQDA data management
programme (Version 2022, VERBI GmbH) supported the
analysis.
The codesystem and the coding of the respective
interviews were developed and analysed by two of the
researchers (LK, JS). Due to the anonymisation of the
interview data, it was not possible to conduct a case
analysis over time. Participants were not asked to provide
feedback on this data.
Research team and reexivity
The participants had no knowledge or relationship with
the researchers prior to the interviews. Six accompanying
person-interviews were conducted by the study nurse, who
knew the accompanying persons before from her work as
a movement therapist. The participants knew about the
aim of the study, which was to evaluate the programme
from different perspectives. Participants were aware of
the interviewers’ work on the research project, but were
not actively informed of their professions (academic
education).
The research team was and is involved in several studies
dealing with the rehabilitation of children and adolescents.
All researchers are of female sex and gender.
RESULTS
28 participants have been interviewed for this study,
which included 18 healthcare providers and 12 AP (
see
Table 1
).
Topics are each underpinned with selected quotations.
The quotations to the specic sections of the article can
be found in appendix 4. The quotes have been abridged
for better readability.
The interviews with both AP themselves and clinic staff
showed that AP were confronted with different role
demands during the rehabilitation stay; these results
could be deduced inductively.
Three care-related categories were developed, within
which their social role can be understood: As close
caregivers and usually legal guardians of the rehabilitants,
the AP were responsible for their children’s health and
provided various forms of care within the clinic processes.
We refer to this as
child-caregiver
in contrast to their role
as
self-caregiver
, where the focus was on their own needs
during the rehabilitation stay. At the same time, the AP
were clients of the rehabilitation clinic, which enhanced
their skills as caregivers for the rehabilitants, providing
them with training and counselling, and involving them
in the children’s therapies (as part of the accompanying
persons programme). We refer to this aspect of their role
Table 1: descripon of the sample of accompanying persons and health care professionals.
accompanying persons characteriscs
relaonship to child biological parent: 11; grandparent: 1
gender female: 8; male: 4
mean age (in years) 44 (range: 33 – 64)
employment in employment: n=10
parenng situaon single parent: n=2
own disease n=5 no disease, n=2 mental disease, n=4 several physical diseases and
n=1 mental and physical disease
middle age 9 years (range: 3-14)
health care provider characteriscs
middle age (in years) 43 (range: 25 – 57)
gender female: 16; male: 2
work experience in the respecve clinic (in years) 11 years (range: 2 – 30)
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as
clients of care
. These three aspects of the role can be
understood schematically, overlap, and cannot be clearly
separated in every aspect. Categorisation helps to make
role conicts visible.
Pre-rehabilitation Information and awareness of
roles and tasks
In order to understand how AP perceived their roles in
rehabilitation and to what extent they were aware of care-
related aspects in advance, it was necessary to focus on
the information situation before the start of rehabilitation.
This concerns both the information that AP received
from the clinics before rehabilitation, and the information
that clinic staff had about the AP before the start of
rehabilitation. Among other things, this information was
central for the localisation of the AP themselves and,
conversely, it was important for clinic staff to have prior
information about companions to be able to assess what
they can expect from them and what their needs are.
The AP received information about their children’s
stay at the rehabilitation clinic. They were not informed
in advance about their own participation or about the
signicance of the programme for themselves and the
care of their child. Although the AP were not informed in
advance about their own participation, they were positive
about the programme.
(See quotation Q1_1)
Many of the accompanying persons interviewed reported
that they had beneted from being informed about the
organisation of the rehabilitation stay and in particular
about their role in the process. Involving accompanying
persons at an early stage would have been helpful both
for mental preparation and for practical implementation
on site.
(See quotation Q1_2)
The clinical staff also saw a disadvantage if the
accompanying persons were not informed in advance
about their participation in the programme. In their
opinion, accompanying parents could inform themselves
in advance on the clinic’s website.
(See quotation Q1_3)
From the perspective of the clinic staff, the lack of
information and awareness of what happens in the clinic
led to the accompanying persons having false expectations
of the programme or of their stay. As a result, the concept
could not live up to its principle of cooperation between
accompanying persons and children.
(See quotation
Q1_4)
The interviews with the clinical staff also showed that
they were aware of the need for comprehensive advance
information about the accompanying persons. They
had Information about diagnoses, outpatient therapies
or employment and most of them said, they collected
relevant information in face-to-face conversations at the
beginning of the rehab, to nd out what the AP needed
and could achieve.
(See quotation Q1_5)
Child-caregiver
Expectations for the rehabilitation stay
Most of the accompanying persons interviewed saw
themselves mainly in the background; their child took
priority. They only had expectations of the rehabilitation
stay in terms of improving their child’s state of health.
However, they did not formulate any expectations of
their own stay as an AP before starting rehab. They were
rather surprised at the opportunity to take part in activities
themselves. In this context it was also emphasised that
this was probably due to the fact that the accompanying
persons did not know in advance that they themselves
would be actively involved in the child’s rehabilitation.
(See quotation Q2_1; Q2_2)
Dealing with hope and disappointment
The complex situation of the accompanying persons in the
context of child-rehabilitation, of which they were often
unaware in advance (see paragraph ‘pre-rehabilitation
information and awareness of roles and tasks’), from
the perspective of the clinical staff also entails different
expectations regarding the stay in the rehabilitation clinic.
The clinical staff observed various expectation-related
levels. In their role as close caregivers and/or parents,
they often observed accompanying person’s hope for a
signicant improvement in the child’s state of health,
also because some of them have already been through a
long ordeal. However, this hope could not be fullled in
all cases; therefore clinic staff also felt confronted with
their disappointment.
(See quotation Q3_1; Q3_2)
Supporting the clinic organisation by taking on
various tasks
One aspect of their rehab-stay was that they took the
children to and from therapy. In this way, they also
took on a supporting role for the APP, as this care of the
children could not be provided by the clinic staff. They
also took care of their children by getting them up and
dressed, eating together in the canteen, spending free time
with them, and getting them ready for bed. As they were
accommodated in a shared room, they had little privacy
or space to themselves.
(See quotation Q4_1; Q4_2)
Self-caregiver
Accompanying persons also took on the role of self-
caregiver. This role consisted mainly of their own
participation in the APP. In addition to the opportunity to
participate in the courses and seminars offered as part of
the programme, their participation also included contact
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and exchange with other accompanying persons; this
interaction
Interaction with other accompanying persons
The exchange with other caregivers was described as
very valuable. On the one hand, because it made them
feel less alone in dealing with their child’s illness and,
on the other, because they were able to talk to other
affected persons about similar problems and give each
other advice and tips. There is also a noticeable sense
of cohesion and connection among the accompanying
persons.
(See quotation Q5_1)
The shared experiences within the caregiver programme
and the associated group processes had effects on the
individual. Several clinic employees observed that
awareness of mental illness only arose through exchange
with other AP with similar symptoms. They could also
learn from each other and gain understanding of their
complex situation, which may not be recognised or
understood by others in their everyday lives at home who
are not affected.
(See quotation Q5_2)
Support among the accompanying persons
Informal interaction with other accompanying persons,
which took place outside of the lectures and training
sessions led by doctors and therapists, was only possible
to a limited extent. During the time when the AP were
not involved in the children’s rehabilitation programme,
the children were not cared for either. Partial additional
childcare provided by the clinic staff could give the
caregivers the opportunity to exchange ideas with other
AP outside of the clinic routine. Beyond that, they
helped and supported each other, for example by sharing
experiences and knowledge, but also by looking after
each other’s children during the rehabilitation period.
(See quotation Q6_1; Q6_2)
Clients of care
The framework conditions of the APP stipulated that the
accompanying persons have an exclusively accompanying
function and that all treatments/interventions they
received must be related to the child’s rehabilitation.
Although they are not patients in the classic sense, they
could be seen as clients of care seeking advice and help
from the clinic to nd a way of dealing with their child’s
illness against the background of their own everyday
challenges.
Exhaustion among the accompanying persons
It became clear that most of the accompanying persons
started their stay in rehab with a high level of exhaustion.
On the one hand, this exhaustion was the result of
everyday stress, particularly in dealing with the child’s
chronic illness, and on the other hand, it was partly
inuenced by their own (mental) illness
. (See quotation
Q7_1; Q7_2)
Exhaustion and stress were also directly mentioned
in interviews with clinic staff. From their point of
view, stressors ranged from illness to socio-economic
disadvantage, difcult family situations or excessive
demands in everyday life; in some cases, all of these
factors came together. The clinic staff reported that some
AP have what they consider to be an excessive desire for
rest and relaxation, which the clinic stay does not provide.
These needs are often considered inappropriate for the
rehabilitation stay by the clinic staff.
(See quotation
Q7_3; Q7_4; Q7_5)
Mental health of the accompanying persons
In the interviews, it was also noticeable that the clinic
staff frequently mentioned the issue of mental illnesses
of accompanying persons. The conspicuous emphasis
on mental illness may also be due to the fact that these
accompanying persons complicated the process in the
clinic because they had special needs that were difcult to
meet within the framework of the programme, and led to
excessive demands and feelings of powerlessness among
clinic staff. The issue of shame about mental disorders
was mentioned as a problem that led to accompanying
persons hiding them and therefore not receiving the
appropriate help.
The accompanying persons themselves also mentioned
mental health problems related to the stress and excessive
demands they brought with them to the clinic from their
everyday lives.
The topic of ‘own mental illness’ did not come up in
the interviews with the accompanying persons, although
three (of seven who reported one or more own illnesses)
reported having a mental illness themselves in the
demographic data query at the beginning of the interview.
(See quotation Q8_1; Q8_2)
Accompanying persons with mental illnesses may be less
able to full the roles assigned to them by the APP. The
interviews showed that the clinics tried to provide support
in such cases by e. g. making the accompanying persons
aware of their problems and referring to outpatient
support services that could be offered after rehabilitation.
However, there was no provision for psychological
treatment as part of the rehabilitation stay.
(See quotation
Q8_3; Q8_4; Q8_5)
Oers and needs
The needs expressed by accompanying persons were
primarily individual. These included, for example, the
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desire for more psychological support and assistance
with bureaucratic procedures, as well as the desire for
childcare by clinic staff. (
See quotation Q9_1)
Clinic staff also reported that caregivers asked for more
individualised treatment elements, such as individual
psychotherapy sessions or more varied recreational
activities. However, they repeatedly emphasised that
the focus was on the children’s treatment and that the
accompanying persons’ satisfaction was of secondary
importance. At the same time, it became clear that it was
particularly difcult for the clinic’s therapy planning
and logistics to integrate the accompanying persons
individually and appropriately into the rehabilitation
process. The dissatisfaction of the accompanying persons
can also be frustrating for the clinical staff. (
See quotation
Q9_2)
The conicting character of the idea of
‘accompanying person’
The interviews revealed that the different roles the
accompanying persons took on as part of the concept
sometimes competed with each other. The clinic staff
were aware of the contradictions in the sense that it
was productive to gain an insight into and build on
the relationship and family circumstances, but on
the other hand there should also be more focus on the
accompanying persons themselves. If they did not meet
the challenges posed by the roles assigned to them, they
could become an obstacle in the rehabilitation process.
In some cases, the inclusion of accompanying persons
in rehabilitation made everyday life at the clinic more
difcult and accompanying persons were seen as a
burden.
(
See quotation Q10_1)
In order to better full the idea of holistic treatment of the
AP and children, clinic staff believed that more resources
needed to be made available.
(See quotation Q10_2)
DISCUSSION
Semi-structured interviews were conducted with clinic
staff who were responsible for the child’s therapy, as well
as for the therapy and care of the accompanying persons,
and the AP themselves, who accompany their children to
rehabilitation and take part in measures themselves, as
part of an APP.
The AP’s role in rehabilitation and the APP is
multidimensional, involving behavioral patterns tied to a
specic status (Halkowski, 1990). The focus is on how
the AP negotiates this role, with social roles viewed as
complementary (Parsons, 1991).
Their own perception of their role seems to depend on a
number of factors. Inuencing factors include the early
transfer of information about their active involvement
in the child’s rehabilitation through participation in the
APP, and their own expectations of their stay in the
rehabilitation clinic in this regard, but also their needs
and wishes regarding their own participation in the APP
during the course of their rehabilitation stay. It must also
be taken into account that, as carers of mostly chronically
ill, they generally tend to be exposed to increased stress
(Cousino & Hazen, 2013).
At the same time, clinic staff bring with them requirements
and expectations of the role of APs that are characterised
by individual values and narratives and which must
also take into account the structural conditions. The
care-related roles developed in advance by the authors
(child-caregiver, self-caregiver and clients of care) can be
superimposed on the inuencing factors.
Need for information and communication
Right at the beginning of the interviews, it became clear that
the AP had no information about their own participation
in the APP. This meant that they were both mentally
and practically unprepared for their activities during the
rehabilitation stay. The resulting lack of preparation for
their stay may have led to poorer adherence to the APP.
The need for information from parents, which is also
central to the internationally established family-centred
concept in the context of a collaborative partnership
(Kruijsen-Terpstra et al., 2016; Phoenix et al., 2020), is
relevant at various levels: The transfer of information
before the start of rehabilitation, information during the
rehabilitation stay and the transfer of information for the
transfer to everyday life.
The fact that the AP were not informed in advance
is viewed rather negatively by the interviewees and
leads to the wish for more information to be provided.
Other international studies also conrm the rather
negative evaluation by both parents and health
professions of the transmission of information in the
context of family-centered rehabilitation programmes
(Cunningham & Rosenbaum, 2014; Darrah et al.,
2012). Consequently, a lack of information can lead to
reduced collaboration between parents and health care
professions. This may result in a limitation of their ability
to make specic decisions in the sense of shared decision
making (Stefánsdóttir & Thóra Egilson, 2016). The lack
of information may be a far-reaching consequence of the
lack of communication and information transfer between
the different care providers (Stumm et al., 2023) beyond
the rehabilitation facility.
A systematic review and meta-analysis of research ndings
examines the ‘Measures of Processes of Care’ (MPOC-
20) on the perceptions of parents with children with
physical disabilities of family-centered practice, in which
the opportunity for communication with the healthcare
providers seemed to be important (Almasri et al., 2018).
In their interview study with patients, family members
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and healthcare professionals, Bamm and Rosenbaum
(2008), on the other hand, found that family members
considered communication and access to information
to be most important, whereas health care professionals
focused on education with regard to the child’s illness
(Bamm et al., 2015).
Child-caregiver
In the interviews, the APs did not formulate any
expectations for themselves regarding the programme
and the rehabilitation stay, but instead focused on the
hope of improving their children’s health. However the
clinic staff described the problem of the APs’ implicitly
too high expectations in connection with the improvement
of the child’s state of health, which they were unable to
meet. These results go in line with the ndings from the
interview study by Phoenix et al. (2020), where the only
expectation and hope parents expressed was a ‘quick’
recovery of their child (Phoenix et al., 2020).
From the different perceptions of the accompanying
persons and the clinic staff regarding the expectations
for participation in the programme and the children’s
rehabilitation stay, it can be concluded that a clear
assignment of tasks and expectations at the beginning of
the rehabilitation stay could contribute to the children’s
rehabilitation success as a supportive aspect. In their
interview study on the perspective of children, their
parents, and caregivers on the implementation of family-
centred care, Coyne et al. (2015) conrm that agreements
and role denitions are recommended before the start
of therapy. Both unclear role allocations and a lack of
information as well as unspoken expectations cause stress
for families (Coyne, 2015).
At the same time, stress and excessive demands are
channelled back to the clinic staff through complaints and
dissatisfaction, which in turn can lead to dissatisfaction
and frustration among clinical staff. The observed
normative evaluation practices of clinic staff, which
often categorise accompanying persons in a dualism of
‘good, committed’ and ‘bad, lazy’, can be understood
as a strategy for dealing with their own frustrations.
Particularly striking in this context was the devaluation
by the clinic staff of accompanying persons with a high
need for rest and recuperation, which was interpreted
more as an expression of laziness and selshness than of
high stress. This raises the question of how these character
traits might also relate to class, gender, or ethnicity-based
stereotypes by healthcare providers (Mahabir et al.,
2021).
Self-caregiver
AP were able to benet from the exchange with other AP
about the child’s illness and problems in everyday life.
This gave them the feeling that they were not all alone
in this situation and tips and advice could be exchanged.
In the interview study on participation in the children’s
rehabilitation programme by immigrant parents in
Norway by Arfa et al. 2020, the exchange of experiences
and socialising with other parents was also highlighted as
a positive aspect. Observing other parents dealing with
their challenges strengthened their perseverance (Arfa et
al., 2022).
However, the exchange with the other accompanying
persons was only possible to a limited extent, as childcare
was not guaranteed by the clinic. The accompanying
persons supported each other by organising childcare
among themselves.
The lack of support in the day-to-day care of the children
by the clinic staff during the rehabilitation stay places an
additional burden on the shoulders of the accompanying
persons. This sometimes makes it difcult for them to
participate in their own activities as part of the APP.
This presumably structural problem within the clinic can
possibly be explained by the fact that APP are not yet
structurally established in Germany, meaning that there
are still no uniform agreements regarding the design
and funding of such concepts. The key issues paper on
AP adopted in 2022 and the associated piloting of such
programmes could possibly change this. In an interview
study by Coyne 2015, in which children, their parents
and nurses were asked about their perspectives and
expectations in the context of a family-centred treatment
approach in Ireland, the support of parents by taking over
‘basic care’ (bathing, feeding, dressing, mobilising etc.)
is justied by the fact that nurses lack the resources for
this (Coyne, 2015). This can possibly also be applied
to the current situation in the context of the APP. The
clinic staff may be working at full capacity due to the
implementation of the APP and the additional work that
this entails, or they may be burdened with additional tasks
and responsibilities in everyday clinical practice.
Clients of care
The interviews with the AP revealed that they reported
a high level of stress and exhaustion at the beginning of
their rehabilitation stay. The clinic staff is also aware of
the high level of stress and the overwhelming state of
the accompanying persons and that this has an inuence
on their participation in the accompanying persons
programme.
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The meta-analysis by Cousino et al. (2013) concludes
that caregivers of children with chronic illness report
signicantly more ‘general parenting stress’ than
caregivers of healthy children. Qualitative analyses
of further 96 studies found in this context that greater
parenting stress was associated with more parental
responsibility, for example in relation to therapy
management. The increased stress level of parents should
be taken into account in future interventions (Cousino &
Hazen, 2013).
There is room for interpretation here; the interviews were
conducted when COVID-19 effects were still signicant.
German pandemic restrictions likely increased
psychological stress from working and caring at home
(Koerber et al., 2023). Vulnerable children with chronic
illnesses also faced impacts on their well-being and their
families (Warschburger et al., 2023).
Conict of roles
Conicts can be observed when too little attention is paid
to the roles of
self-caregiver
. AP spend several weeks
in the clinics and are intensively confronted with the
relationship to their sick child, so that their own needs
also need space. Their expectations of the clinic staff
to recognise and support their needs conict with the
organisational conditions of the clinics in general and
the concept of the AP in particular, which sees the AP
in a secondary role. The demands on the AP are a priori
closely linked to their role as
child-caregiver
; Goffman
describes that role demands that are too overbearing lead
to distancing from this role, as this prevents other aspects
of the personality from coming to the fore (Goffman,
2013). This is where the role of
client in care
come into
play, which the clinic setting and their tasks as ‘learners’
(Smith & Samuels, 2021a) also bring about.
Also the simultaneous care of the child by (clinical)
experts and close (family) caregivers holds the potential
for a conict of competence, and AP may be subject to
(in)direct criticism in this context.
Limitations
The results of the interview study on the concept of the
APP were largely discussed with literature from the
international context. It should be noted that although the
international concepts are similar, they differ in various
ways from the German APP, so that no direct comparison
is possible.
Mental illness is not directly mentioned in the interviews
with AP. This may have to do with the fact that not all
of the accompanying persons with the highest level of
stress or those with mental illnesses agreed to take part
in an interview. The fact that they did not initiate this
topic themselves could possibly be related to the fact that
mental illnesses are still associated with a certain degree
of shame.
Some of the interviews were conducted by the study
nurse who, in addition to her work as a study assistant in
the local rehabilitation clinics, also works as a movement
therapist in one of the two study-clinics. In addition to the
children, some of the accompanying persons interviewed
also took part in the exercise therapy courses themselves.
The active involvement of the study nurse in the everyday
life of the clinic and in the APP could possibly have
inuenced the interview participants in their response
behaviour with regard to social desirability. It is striking
that the interviews conducted by the study nurses in
particular were very short. This could indicate that the
AP may have held back in the scope and depth of their
explanations in the interviews due to bias on the part of
the study nurse.
CONCLUSION
The interview study with AP and different professional
groups of rehabilitation clinic staff clearly reveals the
heterogeneous views and perceptions of the various
actors. At the center of this there are the AP, which are
confronted with different role requirements, namely that
of
child-caregiver
,
self-caregiver
and
clients of care
. It is
striking that the role of child-caregiver takes up a large
amount of space, the role of self-caregiver can only be
realised to a limited extent and the role of clients of care
shows a great need that must be met.
The different tasks and expectations associated with
these different roles present both the AP themselves and
the rehabilitation-clinic staff with challenges that need
to be overcome together. Both groups of actors should
be aware of the multidimensional roles that emerge in
clinical setting. Transparent information transfer and
communication, clear role allocation and consideration of
the individual needs and (health and social) requirements
of the AP should be focused by planning and designing of
APP. Active involvement and mutual exchange between
accompanying persons and clinic staff should be at the
forefront of this process.
ACKNOWLEDGEMENTS
The authors would like to thank all interviewees for their
participation in this study. We would also like to thank the
cooperating rehabilitation clinics for their participation in
the study and the German Pension Insurance Rhineland-
Palatinate for their support
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COMPETING INTERESTS
The authors declare that they have no competing interest.
HUMAN ETHICS APPROVAL AND CONSENT
TO PARTICIPATE
The study protocol for this qualitative study was
approved by the ethical review committee of the Charité -
Universitaetsmedizin Berlin (reference EA2/297/21). All
participants gave written informed consent to participate
in the study.
FUNDING
EvaBePe is funded by the German Pension Insurance
Rhineland-Palatinate (grant no. 423-01- 3310). The
funding organisation had no inuence on the conduct of
the study, the collection, analysis and interpretation of the
data, or on the preparation, review and approval of the
manuscript.
The publication of the article is supported by the Open
Access Publication Fund of Charité-Universitätsmedizin
Berlin and the German Research Foundation (DFG).
LIST OF ABBREVIATIONS
AP = accompaying person
BR = Begin rehabilitation
ER = End of rehabilitation
CE = Clinical employees
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