Lockertsen et al.

Journal of Eating Disorders (2021) 9:45

https://doi.org/10.1186/s40337-021-00404-w

RESEARCH ARTICLE Open Access

The transition process between child and

adolescent mental services and adult
mental health services for patients with
anorexia nervosa: a qualitative study of the
parents’ experiences
Veronica Lockertsen1,2* , Lill Ann Wellhaven Holm3, Liv Nilsen1, Øyvind Rø2,4, Linn May Burger5 and
Jan Ivar Røssberg1,2

Abstract
Background: Patients with Anorexia Nervosa (AN) often experience the transition between Child and Adolescent
Mental Health Services (CAMHS) and Adult Mental Health Services (AMHS) as challenging. This period tends to have
a negative influence on the continuity of care for the adolescents and represents a demanding and difficult period
for the parents. To our knowledge, no previous study has explored the parents’ experience with the transition from
CAMHS to AMHS. Therefore, this qualitative study examines how parents experience the transition process from
CAMHS to AMHS.
Methods: In collaboration with a service user with carer experience, qualitative interviews were conducted with 10
parents who had experienced the transition from CAMHS to AMHS, some from outpatient care and others from
both in- and outpatient mental care units in Norway. All had some experience with specialized eating disorder
units. The interviews were analyzed with a Systematic Text Condensation (STC) approach. Service users’ perspectives
were involved in all steps of the research process.
Results: Six categories represent the parents’ experiences of the transition: (1) the discharge when the child turns
18 years old is sudden; (2) the lack of continuity is often followed by deterioration and relapses in the patient; (3)
the lack of involvement and information causes distress; (4) knowledge – an important factor for developing a
trusting relationship between parents` and clinicians`; (5) parents have overwhelming multifaceted responsibilities;
and (6) parents need professional support.
(Continued on next page)

* Correspondence: [email protected]
1
Division of Mental Health and Addiction, Oslo University Hospital, P.O. Box
4959, Nydalen, Oslo, Norway
2
Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, 0318
Oslo, Norway
Full list of author information is available at the end of the article

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Lockertsen et al. Journal of Eating Disorders (2021) 9:45 Page 2 of 10

(Continued from previous page)

Conclusion: Improving the transition by including parents and adolescents and preparing them for the transition
period could ease parental caregiving distress and improve adolescents’ compliance with treatment. Clinicians
should increase their focus on the important role of parents in the transition process. The system should implement
routines and guidelines to offer caregivers support and guidance during the transition process.
Keywords: Anorexia nervosa, Mental health transition, Adolescent, Carers, Parents’ perspective, Caregivers’
perspective, Qualitative research, Service user’s perspective

Plain English summary

Adolescents with anorexia nervosa (AN) who receive care from Child and Adolescent Mental Health Services (CAMH
S) often need further treatment from Adult Mental Health Services (AHMS). This study explores the transition
between CAMHS and AHMS for parents of adolescents with AN in a naturalistic public mental health-care setting.
Our study identified six themes concerning the transition between CAMHS and AMHS, based on parents’
experiences of the process and what they considered influenced the transition. In general, parents and patients are
both unprepared for the sudden discharge from CAMHS when the patient turns 18 years old. The transition is often
characterized by a lack of continuity, leading to deterioration and relapses among patients. The lack of involvement
and information parents experience in the transition causes distress, and parents have overwhelming multifaceted
responsibilities in the transition period. Parents view knowledge to be the key to a successful transition, and they
are stressed and need support in the transition.
Keywords: Anorexia nervosa, Mental health transition, Adolescent, Carers, Parents’ perspective, Caregivers’
perspective, Qualitative research, Service user’s perspective

Introduction involving six mental health trusts. They found that the
Treatment guidelines recommend family interventions majority of service users experience the transition as
for adolescents with Anorexia Nervosa (AN) [1, 2]. Par- poorly planned, poorly executed, and poorly experienced
ents are often involved in the care while the adolescent [9, 10]. Studies show that only 4–13% of patients with a
AN patient is treated by Child and Adolescent Mental mental health disorder experience a satisfactory transi-
Health Services (CAMHS), but their role decreases when tion [11]. One of the most critical factors for a successful
transitioning to Adult Mental Health Services (AMHS) transition is preparation. Preparation implies acknow-
[3]. The average onset for AN is the mid-teens, with an ledging how important the therapeutic relationship in
average duration of 6 years [4]. Thus, many patients are CAMHS can be in the adolescents’ lives, and how leav-
treated by both CAMHS and AMHS [5]. ing a secure relationship influences how the new rela-
The development of AN is caused by a complex inter- tionship is established in AMHS [12–15].
play of biological, psychological, social, developmental, Parents have an important caregiving role in treating
and cultural factors. AN can manifest in a variety of patients suffering from AN, but their role changes when
ways, but often patients are ambivalent about treatment entering AMHS. In CAMHS, parents are used to having
and do not regard themselves as ill [1, 6]. This ambiva- responsibility for the patients when it comes to both
lence with treatment and fluctuating motivation for re- meal support and weight restoration. However, AMHS
covery creates additional challenges in the management places the responsibility on the patient [3]. The different
of a successful transition. treatment approaches often create a barrier in the transi-
Blum [7] defined an optimal transition as a purposeful, tion, as both patient and parents are often unprepared,
planned process that addresses the medical, psycho- and the changes are not made explicit. When parents
social, and educational/vocational needs of adolescents. experience themselves as being less involved in the treat-
Many mental health-care systems fail to complete a ment of AMHS, it can increase their feelings of loss and
seamless transition, mostly because of the lack of good fear and lead to a sense of powerlessness [4, 8, 16]. Pa-
cooperation between the services and different treatment tients with AN often have disabilities that make them
philosophies [4, 8]. Four features of optimal transition rely on their parents for emotional and financial support,
have been identified: Information transfer, a period of even though they are emerging into adulthood [17].
parallel care, transition planning, and continuity of care Therefore, the transition should be guided by an individ-
[9]. Singh et. al studied transitions in an UK context ual transition plan that considers the need for the
Lockertsen et al. Journal of Eating Disorders (2021) 9:45 Page 3 of 10

individual to practice self-sufficiency and family involve- participate by their adolescents’ therapists, who con-
ment [9, 18]. tacted participants they knew had experiences that could
The emotional impact of caring for an individual with illuminate the research questions. The others made con-
mental health problems is well established (Baronet, tact with the project manager after finding project infor-
1999). Parents of patients with AN appear to have mation on an internet support site for eating disorders.
poorer mental wellbeing than parents of other condi- None of the parents had relations to the patients in-
tions [19]. Kyriacou, Treasure [20] found that more than cluded in a previous study [14]. The adolescents were
50% of parents with AN scored above the clinical thresh- aged 15, on average, when they first contacted the
old for anxiety, and 13% scored above the clinical CAMHS. All parents had experience with the transition
threshold for depression. To decrease their own distress from CAMHS to AMHS. All but two of the adolescents
and increase involvement in the treatment of their ado- had experience with in-patient treatment, and all had
lescent, the parents expressed a need for information some experience with specialized eating disorder units.
and support from the services [21, 22]. Without support, All parents had the main care of the adolescent while
there is an increased risk of developing maladaptive cop- transitioning; one had received assistance from child
ing strategies in their interactions with adolescents. To welfare services until the transition. Three of the parents
avoid conflict, parents can often develop family routines were separated and had the main responsibility for the
that in fact contribute to the adolescent maintaining adolescent during the transition. All transitions occurred
their AN symptoms [23, 24]. the year their adolescents turned 18. The average time
Parents play an essential role in the transition period. from transition to the qualitative interview was 4.5 years.
However, to our knowledge, no previous studies have Recruitment to the study took place between September
explored the parents’ experiences of the transition from 2018 and December 2019 in Norway. Written consent
CAMHS to AMHS for patients with AN. Greater know- was obtained from all participants.
ledge about how parents experience the transition
process and the factors they experience as barriers to a Data collection
more satisfactory transition for the patient might im- In-depth, semi-structured interviews, guided by a the-
prove the transition process. This knowledge can also matic interview guide, were conducted by the first (VL)
provide us with important information about what the and the second (LAWH) authors. The interviews lasted
parents need during the transition period to provide between 60 and 90 min and were conducted in adapted
support for adolescents with AN. The main aim of this settings chosen by the participants. The interviews were
qualitative study was to examine how parents experience guided by our research question, which was to explore
the transition process from CAMHS to AMHS. parents’ experiences of parenting an adolescent with AN
in the transition from CAMHS to AMHS. The partici-
Methods pants were encouraged to describe their experience with
Design the transition through specific examples. The questions
The present study is part of a service user-initiated focused on factors that influenced the transition process,
qualitative research project focusing on the transition regarding the treatment systems, the therapists, them-
from CAMHS to AMHS for patients [14], professionals selves, and their adolescents. Throughout the interview,
[24], and parents. The project is inspired by how the we restated and summarized our understanding to valid-
theme of challenging transitions to AMHS appeared re- ate our interpretations of their narratives. The first
petitively in support groups for parents with children author audio-recorded and transcribed the interviews
suffering from eating disorders. A parent with service verbatim.
use experience (LAWH) participated in the design of a
semi-structured interview guide and moderated the Qualitative data analysis
interview in collaboration with the first author (VL). The Data were analyzed using a systematic text condensation
research group also included a former service user (STC) inspired by Giorgi [25, 26]. STC is an elaboration
(LMB) with patient experience, RN nurses (LN, VL), and of Giorgi’s principles, and the method focused on pre-
psychiatrists (JIR and ØR). senting the parents’ expressed experiences, rather than a
possible underlying interpretation of meaning. STC is a
Recruitment and participants descriptive approach, presenting the participants’ experi-
The study recruited 12 participants, three fathers and ence as expressed by themselves. However, STC shares
nine mothers, through snowball sampling methods. the underlying theoretical foundations of social con-
Eight of the participants were individual parents and structionism and has in this study been used more dy-
four were couples; thus, the transitions of 10 adolescents namically than the procedure may imply. By de-
were discussed. Three of the participants were invited to contextualization and re-contextualization of the text,
Lockertsen et al. Journal of Eating Disorders (2021) 9:45 Page 4 of 10

we analytically reduced the data and created a con- was all alone, and we, as parents, were not included
densed text that represented the overall material [25]. or notified.
Using STC, the moderators of interviews were consid-
ered co-producers of the data, and together with the The parents expressed concern about the transition
participants, affected the interview process. STC com- from CAMHS that was processed without consideration
prises four main steps, where the end goal is to have a of the adolescents’ capabilities or maturity.
condensed text representing the validity and wholeness
of the original context. Three of the authors listened and I understand that the system must have limits, but
read the interviews several times, focusing on the par- she was treated like an adult from the first meeting
ents’ experiences with the transition between CAMHS between CAMHS and AMHS. When you are 18,
and AMHS. Our research question developed dynamic- you are not an adult. So, it should have been a tran-
ally as the research process influenced our understand- sitional phase.
ing of the parents’ experiences. After forming an overall
impression of the material, texts that belonged together She met the CAMHS-therapist on Friday, turned 18
were grouped and encoded. By decontextualizing selec- on Sunday—the following Monday she met with
tions of meaning content from the created codes, we AMHS. She had been warned about how the transi-
were able to reveal various aspects of the parents’ experi- tion was regulated by the calendar, but she was to-
ences. This systematic way of renaming codes and pro- tally caught off guard.
cessing the material was constantly conducted with the
authenticity of the interviews in mind. Finally, our ana- One of the parents experienced that CAMHS wanted
lysis revealed six themes that represented the answer to to continue treatment for a period, but the adolescent
our research question. We used NVivo 11 to help wanted to transfer to AMHS for a fresh start. To their
organize and categorize the transcriptions (QSR Inter- surprise, CAMHS just let the adolescent go, without any
national Pty Ltd.). contact information or help to transfer to AMHS.

Results She was all alone, and we, as parents, were not in-
Six categories describe the parents’ experiences during cluded or notified. There was a sharp separation be-
the transition: (1) the discharge when the child turns 18 tween CAMHS and AMHS. CAMHS would not
years old is sudden; (2) the lack of continuity is often give us any assistance. They could at least have rec-
followed by deterioration and relapses in the patient; (3) ommended someone or connected us with the out-
the lack of involvement and information causes distress patient clinic in AMHS.
for the parents; (4) parents have overwhelming multifa-
ceted responsibilities in the transition; (5) knowledge is Lack of continuity is often followed by deterioration and
the key to a successful transition; and (6) parents are relapses
stressed and need support. The following paragraphs The parents frequently described the transition as going
discuss each category in greater detail. in circles between services, hospitalizations, and meet-
ings with their primary care provider (PCP). For the par-
Sudden discharge from CAMHS at 18 ents, the transition period implied having to wait for
The parents described the transition from CAMHS to adequate treatment, handle unstable adolescents, and
AMHS as an abrupt end to treatment that is defined by face uncertainties about future treatment. This situation
age rather than a process. The parents were told that was described as a negative circle, putting the responsi-
AMHS was responsible for the treatment when the pa- bility of the adolescent’s health in the hands of the PCP
tients turned 18 years old and that a transition phase and the parents and highlighting the important role con-
with parallel care was impossible. The parents experi- tinuity of treatment plays in the transition.
enced stress, as they were unsure of how to proceed in
the treatment system when their son/daughter was sud- It is such a negative circle. Our PCP referred us to
denly discharged from CAMHS. The parents felt power- AMHS. It takes about 6 weeks to get an appointment
less, with the sense that they had nothing to say, and at the outpatient clinic. Soon after the first meeting
they described the feeling of being left out of what was with our daughter, the therapist was going on vac-
happening with their adolescent in AMHS. ation and she was left without a therapist. Soon after
the vacation, the therapist went on paternity leave
The worst thing about the transition process is how and our daughter was discharged without further
she was discharged from outpatient care on her consideration. Suddenly, once again, her PCP was her
18th birthday without any form of follow-up. She only therapist. This circle is not unique.
Lockertsen et al. Journal of Eating Disorders (2021) 9:45 Page 5 of 10

The parents described how their adolescents’ health difficult. They described a need for more guidance and
often deteriorated in waiting periods, with some patients knowledge about how to interact with their son/
being admitted to an acute psychiatric ward. Both the daughter.
waiting time and the admission to the acute ward were
difficult for the parents. The waiting time represented a I understand that some things are confidential, but I
period of feeling frightened and solely responsible for literally got nothing and had to handle it on my
their adolescent. However, they found that the acute own. With more information, I could have under-
psychiatric ward was not attuned to their adolescent’s stood how serious it was, sooner.
needs and challenges, and they found it difficult leaving
them in what they felt was an inhumane environment. Access to information was a topic already present in
During the transition period, much of the parents’ CAMHS, as the duty of confidentiality is set at age 16.
time was spent searching for adequate treatment facil- Nevertheless, some describe a sudden change in their
ities. The criteria for receiving treatment from AMHS adolescents’ attitudes to accessing AMHS. The parents
were considered strict and focused mostly on the adoles- experienced that the emphasis of AMHS on the individ-
cent’s BMI. ual’s independence and self-sufficiency influenced the
adolescents’ attitudes. Parents that earlier had good co-
How thin must one become to receive treatment? operation with their adolescent and thereby access to in-
Actually, she lost weight just to meet their BMI formation suddenly lost their overview of the situation.
criteria.
I felt, since it came so suddenly after transitioning,
The parents described how their adolescent’s ambiva- almost from 1 day to the next—it must have been
lence toward treatment created high levels of frustration the influence AMHS had. The idea of when you are
during the transition period. The patients often dropped 18, you are more responsible for your own life.
out of treatment, and the parents felt they were left re-
sponsible and followed up more closely as they were This sudden change in attitudes toward their involve-
afraid of the consequences. How adolescents would be- ment made the transition challenging for the parents.
come responsible for their own health without continu- They often experienced that the amount of information
ous professional support or preparation was of they received and their cooperation with the adolescent
significant concern for the parents. were dependent on the adolescent’s somewhat fluctuat-
Although they considered it natural and important ing state of disease. An easier flow of information to and
that their adolescents had something to say about treat- from parents could benefit the transition. They ques-
ment, they wanted the clinician to acknowledge the role tioned why their experience and knowledge were not re-
patients’ ambivalence plays in treating adolescents with quested by the health-care services, as in their view, it
AN and the impact it has on their self-sufficiency. They would make it easier for the clinician to understand the
had experienced that their adolescent’s disease made adolescent. Often, the adolescents found it straining to
them make decisions they, in their parents’ eyes, should connect with a new clinician; thus, a more involved par-
not take. ents’ role would be a positive bridging factor.

She refused potassium supplements because in her I tried to speak with the doctors, but they looked at
mind, she gained weight. That was more important me like I was a nuisance. And as we did not receive
than surviving. As she had turned 18, they gave her any information, we kind of lost a way to under-
that choice and handed her a paper to sign, con- stand her, so we felt very insecure and scared. They
firming she was familiar with the consequences of did not even let us know when she had escaped
refusing treatment with a potentially fatal outcome. from the unit!

Lack of involvement and information causes parental

distress Knowledge – an important factor for developing a
The parents experienced a change in their role as care- trusting relationship between parents and clinician’s
givers when their adolescents started receiving treatment The parents described how a successful transition often
from AMHS. Despite still being responsible for the ado- relied on trust in the clinician’s competence with eating
lescent, after transferring to AMHS, there was a differ- disorders. The adolescents tended to lose motivation for
ence in their inclusion in the treatment and in the treatment and had difficulties in the therapeutic relation-
amount of information they received. The parents de- ship when they sensed that the clinician knew less about
scribed how the lack of information made life at home eating disorders than they did themselves.
Lockertsen et al. Journal of Eating Disorders (2021) 9:45 Page 6 of 10

Developing trust was difficult, as N is really smart period challenging. They describe the period as lonely
and has much knowledge about her own disease. and wearing. Their responsibilities for facilitating the
She pulled him up on misinformation and then be- treatment were time-consuming. They described their
lieved that he did not have the necessary days as being mostly occupied with preparing food, of-
competence. fering meal support, following up after meals, and driv-
ing the adolescents to treatment appointments. As their
During the transition, the parents experienced meet- adolescents often lacked the motivation or ability to ad-
ings with clinicians who seemingly lacked knowledge minister their contact with different caring facilities, they
about what their caregiving role implied. Some parents obtained a coordination role for their adolescent. They
described being met with a distrustful attitude, as they emphasized how their adolescent still needed the same
sensed that the professionals found it difficult to assess support from them as when they were underage. Meals
and trust their narrative. While some meetings in the were often followed with anxiety for the adolescent, par-
transition increased their confidence and decreased their ents, and other family members. The preparations and
distress concerning their role as parents, others de- routines surrounding meals were adapted specifically
scribed how clinicians had increased their feelings of around the patient and not for other family members.
shame and lack of confidence in how they handled their The parents expressed concern for their other children,
situation. Consequently, their room for manoeuvre as their adolescent with AN would often direct their
shrank during the transition period, and they felt lost. strong emotions and aggression at them.

There is no understanding of the parents’ situation. A mother’s heart bleeds when I see how she treats
Everywhere else I have been has confirmed that my her sister, but what can I do?
reaction was normal to an abnormal situation. But
it ruined me. Since their lives were adapted to helping and looking
after their adolescents, they relied on flexible jobs. Some
When met by experienced clinicians who embraced described concerns about income, as they had increased
their situation and recognized their reactions, they felt expenses due to the need to purchase different foods
calmer and had greater acceptance of their reactions. and treatments. As their adolescents were often in-
Health services ignoring the parents’ knowledge and ex- between treatment facilities, they felt as if they had to
pertise in the transition was also of symbolic value to stay home and look after them, as they tended to be
some parents. They used it as an example of what they physically and mentally unstable. For the parents, this
perceived as professionals’ tendency to focus on the situation created stress as they were reliant on others be-
somatic symptoms of the eating disorder, while over- ing flexible on their behalf, which created insecure living
looking the multidetermined aspects that their involve- conditions. They were left with no choice but to try to
ment could represent. They described how the be with their adolescent and provide them with the se-
adolescents were admitted and gained weight, but there curity they needed. The transition period was thereby
was no psychological insight or motivation to maintain characterized by a lot of emotions, fear, and frustration.
their weight. Nevertheless, they were discharged despite Some described difficulties sleeping and increased men-
their parents’ advice. This contributed negatively to a tal health problems. Nevertheless, as they had no choice,
very unstable time, and from the parents’ perspectives, they had to endure.
many unnecessary transitions.
I just did it. Had no choice really. That is the prob-
She [our child] said to us: When I am there, I just lem. And kids are your kids until they do not need
feel like a gigantic eating disorder. I am nothing you anymore. So, we have followed her very closely,
else. She did not feel seen as a person, just a weight. but I think this is something all parents do.
And I understood her.
Parents are in need of professional support
Overwhelming multifaceted responsibilities The parents described how they always had to be on
The parents were overwhelmed by the many roles and guard, available, and prepared during the transition
their multifaceted responsibilities during the transition period, and they were therefore in need of support from
period. In addition to facilitating the transition for the the mental health care services. Some parents felt their
adolescent and adapting to their needs, they had respon- adolescent had a hold on them and knew what to say to
sibilities toward other children, their work, and their get their own way. Having experienced how life threat-
own lives, yet they had difficulty meeting their other ob- ening their condition was and how unstable their adoles-
ligations. These ancillary pressures make the transition cents became when setting their ground, they often
Lockertsen et al. Journal of Eating Disorders (2021) 9:45 Page 7 of 10

submitted to their adolescents’ wishes to keep the peace. focusing on the parents’ perspective toward patients with
They often lacked the support they needed to stand their AN. The present study revealed interacting factors im-
ground and found it difficult to set boundaries. portant for the transition. The parents describe an
abrupt discharge from AMHS based on age rather than
Because so much serious stuff has happened, I al- maturity. They experienced a distance between the ser-
ways must evaluate what is the consequence of me vices that resulted in a gap in the care provided. This
saying no to her. If I pay attention to myself, what lack of continuity in treatment often caused negative
could be the consequence for her? So, her conse- treatment circles involving repetitive contacts with PCPs
quence is always more important. There is a much and AMHS, which led to a deterioration of the adoles-
greater risk for her. cent’s health. Parents also described not being involved
in the transition process. They felt left with the same re-
They described how they stayed prepared and found it sponsibilities as in CAMHS but had less access to infor-
difficult to relax, as many of the parents had experienced mation. This loss of control triggered their need to be
their adolescents’ self-harm and suicide attempts. This involved, not just informed. Trusting the therapists’
made sleeping at night difficult and affected the whole knowledge was important. Combined with the responsi-
family. bility they felt for their adolescent wellbeing, the parents
had overwhelming multifaceted responsibilities they find
I often found her brother outside her door at night difficult to balance. More parents need professional sup-
because she often ran away and went down to the port to manage this challenging time to ease their
railways. distress.

They emphasized their need for support and to have Abrupt, discontinued transitions make parents feel
somebody to talk to during the transition period. While responsible for coordinating the treatment
some had an arrangement with their adolescent’s clinic, The current study shows that the parents find it import-
others asked for help from voluntary support services or ant to consider the patients’ readiness, rather than just
had good friends with similar experiences. The parents age, to successfully transition from CAMHS to AMHS.
described that they could not focus on their own social Maturity and the ability to be self-sufficient are key
lives, as they had to focus on their adolescents. There- patient-related factors that the parents perceive as
fore, some felt alone and lonely. Others explained that underestimated in the treatment system. During the
they preferred to be alone, as they always had to be pre- transition, the patients were unprepared for the differ-
pared for a phone call that would demand giving their ence in expectations toward them, which in some cases
attention to their adolescent. formed a care gap where the parents were left respon-
Some found it difficult to be open with others, as they sible. These findings are in line with our previous study
felt that their situation was an abnormal state, so they that showed how patients felt unprepared for the expec-
kept to themselves or used only family as support. They tations of self-sufficiency in the AMHS and how their
describe the support offered from the mental health care parents’ role changed during the transition phase [14].
services as inconsistent. They missed having connections The patients in our previous study found the transition
with other parents and access to more personal contact process abrupt, and they had little influence on what
with their adolescents’ clinicians to get more adapted ad- they described as a critical period in their treatment.
vice and support. Once the transition period ended and The loss of a safe environment and being expected to be
things were more stable, they had different reactions. more autonomous than what they were prepared for in-
While some were able to regain their social life and re- creased their anxiety and ambivalence. While supporting
claim their lives, others had more difficulty letting go the adolescent, the parents in the current study spent
and still felt the strain of the accumulated stress. much of their time during the transition process search-
ing for adequate treatment. As they were often turned
In fact, for 2 years I have struggled a bit with fa- away by the AMHS, they had to assume responsibility
tigue. I kind of thought it might have something to for the patient in collaboration with their PCP. Other
do with the fact that I now can relax. You have studies have found that, even though therapists in
walked on your toes for years, and suddenly there is CAMHS expect the patient to need further treatment in
no danger anymore. You feel so heavy in a way. AMHS, they are not directly referred to AMHS [11].
Dimitropoulos, Tran [27] showed that professionals
Discussion acknowledged the parents’ role in the transition and
To our knowledge, this study is the first to examine the shared the concern of a more individual-oriented treat-
transition process between CAMHS and AMHS, ment that overlooked the need for more support by
Lockertsen et al. Journal of Eating Disorders (2021) 9:45 Page 8 of 10

parents in the transition. Patients often had concerns to a previous study that explored professionals’ experi-
over the parents’ decreased role in their experience, as ences with the transition, clinicians have difficulties
they were essential in their recovery process [27]. trusting their competence when treating patients with
Additionally, the lack of continuity between CAMHS AN [32], which can influence how they trust their judg-
and AMHS left the parents and patients without support ment concerning including parents. Hill, Wilde [15]
from CAMHS when establishing a safe connection with identified that AMHS clinicians experience anxiety and
therapists in AMHS. Bucci, Roberts [28] underlined how lack confidence in their competence regarding develop-
planning transitions can buffer the loss of a secure base mental and adolescent issues; therefore, the transition
in CAMHS, as it would provide security and stability for period disclaims any training needs. This finding reso-
both the patients and parents. Hill, Wilde [15] explained nates with this study’s findings, where parents experi-
how preparing for the transition is difficult by acknow- enced inconsistencies between clinicians in terms of
ledging how treatment systems are fragmented and their approaches to the parents and their consciousness
AMHS thresholds make accessing treatment more diffi- of their adolescents’ developmental stage. To ensure that
cult. Nevertheless, it is important to try to overcome the transition is effectuated with a high level of compe-
these practical barriers. The current study supports the tence that includes the parent’s expertise knowledge of
arguments for securing the transition by considering the the adolescent, we recommend updating the guidelines
individual family’s needs. An individual transition plan for eating disorders to prevent the random way transi-
would help reduce stress and deterioration of illness, tions occur and support clinicians in a difficult treat-
benefitting all those involved in the transition [29]. ment period.

Knowledge and involvement – important for developing Parents need professional support
a trusting relationship between parents and clinician’s Our study reveals how parents’ distress during the tran-
This study found that knowledge was an important part sition period is related to a lack of support in a period in
of the transition process and the basis of the parent’s which they have an overwhelming degree of multifaceted
trust in the clinician. Regarding the clinician’s knowledge responsibilities. The most obvious finding that emerges
about eating disorders, knowledge of the parents’ role in from the analysis is that parents put the adolescent’s
the transition, and the clinicians’ competence to include needs before much else due to their condition’s severity.
parents’ knowledge during the transition period. Treas- This finding is expected, as other studies have reported
ure, Whitaker [30] has argued that it is a misconception the heavy load and disruption to caregivers’ lives due to
that adult services must exclude parents from the assess- the nature and demands of their adolescent’s illness [20,
ment and treatment of adult patients with AN to protect 33]. It also pinpoints how differently parents experience
the patients’ growing autonomy and confidentiality of their social support and how open and honest they can
the treatment. Clinicians treating patients with AN need be with close friends and family. Kyriacou, Treasure [20]
competence to balance the patient’s need for independ- argued that both patients’ and parents’ needs must be
ence against the parents’ involvement in treatment [30]. identified and addressed in the transition. Earlier studies
As our study reveals, it was sometimes difficult for clini- revealed how the development of overprotective parent-
cians to know when and how to involve the parents ing styles and expressing high emotion are common re-
when treating patients with AN. As parents experience actions for parents’ caregiving for patients with AN.
having the same responsibilities for the adolescent in the These reactions are associated with caregiver distress
transition process as when they were treated in CAMHS, and burnout [30, 34]. Roots, Rowlands [35] found that
they feel left feeling alone with overwhelming responsi- parents experienced relief and unease when excluded
bility. Adolescents transferring from CAMHS to AMHS from therapy, which resonates somewhat with this
often live with their families longer. In addition, their study’s findings. The criterion is that parents need to feel
families tend to be involved to a larger degree in their safe and trust the patient’s clinician. As in our study,
diseased adolescents’ lives compared with healthy peers Roots et al. (2009) found that parents and siblings need
[19]. Other studies and international guidelines have and value support from clinicians. We recommend that
underlined the importance of involving parents in the the clinicians facilitating the transition consider the im-
transition [3, 31]. However, this study’s results reveal portant role parents have, being a secure epicenter for
that following up on these recommendations is challen- the adolescents in a turbulent period in their lives. Al-
ging. Organizational factors, exemplified by a fragmen- though studies have shown how social support can be a
ted health-care system, and differences in treatment significant moderator of the stress following the caregiv-
cultures, exemplified by a more individual approach in ing role [36], we believe establishing family support
AMHS, can explain why the parents in our study experi- within health care services could decrease the negative
ence are left uninvolved in treatment. Besides, according aspects of caregiving during the transition process.
Lockertsen et al. Journal of Eating Disorders (2021) 9:45 Page 9 of 10

Limitations Author details

1
The study has generated findings from qualitative inter- Division of Mental Health and Addiction, Oslo University Hospital, P.O. Box
4959, Nydalen, Oslo, Norway. 2Institute of Clinical Medicine, Faculty of
views concerning 10 transitions. The adolescents going Medicine, University of Oslo, 0318 Oslo, Norway. 3Oslo, Norway. 4Regional
through the transitions were all female, and the majority Department for Eating Disorders, Division of Mental Health and Addiction,
of the parents were also female. As the participants were Oslo University Hospital, Ullevål HF, Postboks 4950 Nydalen, 0424 Oslo,
Norway. 5Drammen, Norway.
recruited through therapists who perceived the transi-
tion to be an important theme and selected from volun- Received: 10 February 2021 Accepted: 4 April 2021
teers, we may have recruited a biased sample most
familiar with negative consequences with the transition
process. Norwegian mental health system and cultural References
aspects may have provided this study with themes other 1. Eating disorders: Recognition and treatment. Full guideline [Internet]. 2017
[cited 11.01.21]. Available from: https://www.nice.org.uk/guidance/ng69/
than what other cultures would generate. However, our
evidence/full-guideline-pdf-161214767896.
findings support those found in international literature 2. Health TNDo. National treatmentguideline for eating disorders Oslo The
and can be assumed to have relevance in other cultural Norwegian Directorate of Health. 2017 [cited 2020 23.11]. Available from:
settings. https://www.helsedirektoratet.no/retningslinjer/spiseforstyrrelser
3. Dimitropoulos G, Tran AF, Agarwal P, Sheffield B, Woodside B. Challenges in
making the transition between pediatric and adult eating disorder
Conclusion programs: a qualitative study from the perspective of service providers. Eat
Improving the transition by focusing on including par- Disord. 2013;21(1):1–15. https://doi.org/10.1080/10640266.2013.741964.
4. Treasure J, Schmidt U, Hugo P. Mind the gap: service transition and
ents and adolescents and preparing them for the transi- interface problems for patients with eating disorders. Br J Psychiatry. 2005;
tion period could ease parental distress and improve 187(5):398–400. https://doi.org/10.1192/bjp.187.5.398.
adolescents’ compliance with treatment. Clinicians 5. Herpertz-Dahlmann B. Adolescent eating disorders: definitions,
symptomatology, epidemiology and comorbidity. Child Adolesc Psychiatr
should increase their focus on the important role of par- Clin N Am. 2009;18(1):31–47. https://doi.org/10.1016/j.chc.2008.07.005.
ents in the transition process. There may be a need for 6. Fassino S, Piero A, Tomba E, Abbate-Daga G. Factors associated with
more extensive service changes; the system should im- dropout from treatment for eating disorders: a comprehensive literature
review. BMC Psychiatry. 2009;9(1):67. https://doi.org/10.1186/1471-244X-9-67.
plement routines and guidelines to offer caregivers sup- 7. Blum R, Garell D, Hodgman C, et al. Transition from childcentered to adult
port and guidance during the transition process. health-care systems for adolescents with chronic conditions. J Adolesc
Health. 1993;14(7):570–6. https://doi.org/10.1016/1054-139X(93)90143-D.
Abbreviations 8. Winston AP, Paul M, Juanola-Borrat Y. The same but different? Treatment of
CAMHS: Child and Adolescent Mental Health Services; AMHS: Adult Mental anorexia nervosa in adolescents and adults. Eur Eat Disord Rev. 2012;20(2):
Health Services; AN: Anorexia Nervosa; PCP: Primary Care Doctor 89–93. https://doi.org/10.1002/erv.1137.
9. Singh S, Paul M, Ford T, Kramer T, Weaver T, McLaren S, et al. Lost in
Acknowledgements transition: a multi-perspective study of process, outcome and experience of
Thank you to all participants who supported this research study. transition from child to adult mental health care (TRACK). Br J Psychiatry.
2010;197(4):305–12. https://doi.org/10.1192/bjp.bp.109.075135.
Authors’ contributions 10. Singh SP, Paul M, Ford T, Kramer T, Weaver T, McLaren S, et al. Process,
Design of the Mind the Gap study: LN, JIR, and LAWH. Data collection: VL outcome and experience of transition from child to adult mental
and JIR. Drafting the article: VL, JIR, and LN. All authors contributed to data healthcare: multiperspective study. Br J Psychiatry. 2010;197(4):305–12.
analysis, interpretation, and critical revision of the article as well as final https://doi.org/10.1192/bjp.bp.109.075135.
approval of the version to be published. 11. Appleton R, Connell C, Fairclough E, Tuomainen H, Singh SP. Outcomes of
young people who reach the transition boundary of child and adolescent
Funding mental health services: a systematic review. Eur Child Adolesc Psychiatry.
This project has been made possible by the Dam Foundation. 2019;28:1431–46.
12. Mulvale GM, Nguyen TD, Miatello AM, Embrett MG, Wakefield PA, Randall
Availability of data and materials GE. Lost in transition or translation? Care philosophies and transitions
The datasets used and/or analyzed during the current study are available between child and youth and adult mental health services: a systematic
from the corresponding author upon reasonable request. review. J Ment Health. 2016;28(4):379–88.
13. Paul M, Ford T, Kramer T, Islam Z, Harley K, Singh SP. Transfers and
Declarations transitions between child and adult mental health services. Br J Psychiatry
Suppl. 2013;54:s36–40. https://doi.org/10.1192/bjp.bp.112.119198.
Ethics approval and consent to participate 14. Lockertsen V, Nilsen L, Holm LAW, Rø Ø, Burger LM, Røssberg JI. Experiences
The study was approved by the data protection authority at Oslo University of patients with anorexia nervosa during the transition from child and
Hospital (OUS; 2016/19732). The study was performed in accordance with adolescent mental health services to adult mental health services. J Eat
the Declaration of Helsinki and evaluated by the Regional Committee for Disord. 2020;8(1):1–11.
Medical and Health Research Ethics for the Southeast Region of Norway 15. Hill A, Wilde S, Tickle A. Transition from child and adolescent mental health
(2016/1259). The study is not viewed to be a medical or health-related re- services (CAMHS) to adult mental health services (AMHS): a meta-synthesis
search project regulated by the law of health research and is thereby not of parental and professional perspectives. Child Adolesc Mental Health.
subject to presentation (cf. HFL. § 2). 2019;24(4):295–306. https://doi.org/10.1111/camh.12339.
16. Lindgren E, Söderberg S, Skär L. Being a parent to a young adult with
Consent for publication mental illness in transition to adulthood. Issues Ment Health Nurs. 2016;
Not applicable. 37(2):98–105. https://doi.org/10.3109/01612840.2015.1092621.
17. Dimitropoulos G, Klopfer K, Lazar L, Schacter R. Caring for a sibling with
Competing interests anorexia nervosa: a qualitative study. Eur Eat Disord Rev. 2009;17(5):350–65.
The authors declare that they have no competing interests. https://doi.org/10.1002/erv.937.
Lockertsen et al. Journal of Eating Disorders (2021) 9:45 Page 10 of 10

18. Hergenroeder AC, Wiemann CM, Cohen MB. Current issues in transitioning
from pediatric to adult-based care for youth with chronic health care needs.
J Pediatr. 2015;167(6):1196–201. https://doi.org/10.1016/j.jpeds.2015.08.005.
19. Linacre SJ. The wellbeing of carers of people with severe and enduring
eating disorders (SEED). Leeds: University of Leeds; 2011.
20. Kyriacou O, Treasure J, Schmidt U. Understanding how parents cope with
living with someone with anorexia nervosa: Modelling the factors that are
associated with carer distress. Int J Eat Disord. 2008;41(3):233–42. https://doi.
org/10.1002/eat.20488.
21. Anastasiadou D, Medina-Pradas C, Sepulveda A, Treasure J. A Systematic
Review of Family Caregiving in Eating Disorders; 2014.
22. Fowler E. Supporting someone with an eating disorder: a systematic review
of caregiver experiences of eating disorder treatment and a qualitative
exploration of burnout management within eating disorder services; 2016.
23. Treasure J, Schmidt U. The cognitive-interpersonal maintenance model of
anorexia nervosa revisited: a summary of the evidence for cognitive, socio-
emotional and interpersonal predisposing and perpetuating factors. J Eat
Disord. 2013;1(1):13. https://doi.org/10.1186/2050-2974-1-13.
24. Coomber K, King RM. Coping strategies and social support as predictors
and mediators of eating disorder carer burden and psychological distress.
Soc Psychiatry Psychiatr Epidemiol. 2012;47(5):789–96. https://doi.org/10.1
007/s00127-011-0384-6.
25. Malterud K. Systematic text condensation: a strategy for qualitative analysis.
Scand J Public Health. 2012;40(8):795–805. https://doi.org/10.1177/1403494
812465030.
26. Giorgi A. Sketch of a psychological phenomenological method. In A. Giorgi
(Ed.), Phenomenology and psychological research: essays. Pittsburgh:
Duquesne University Press; 1985.
27. Dimitropoulos G, Tran AF, Agarwal P, Sheffield B, Woodside B. Navigating
the transition from pediatric to adult eating disorder programs: perspectives
of service providers. Int J Eat Disord. 2012;45(6):759–67. https://doi.org/10.1
002/eat.22017.
28. Bucci S, Roberts NH, Danquah AN, Berry K. Using attachment theory to
inform the design and delivery of mental health services: a systematic
review of the literature. Psychol Psychother Theory Res Pract. 2015;88(1):1–
20. https://doi.org/10.1111/papt.12029.
29. Farre A, Wood V, McDonagh JE, Parr JR, Reape D, Rapley T. Health
professionals’ and managers’ definitions of developmentally appropriate
healthcare for young people: conceptual dimensions and embedded
controversies. Arch Dis Child. 2016;101(7):628–33. https://doi.org/10.1136/a
rchdischild-2015-309473.
30. Treasure J, Whitaker W, Whitney J, Schmidt U. Working with families of
adults with anorexia nervosa. J Fam Ther. 2005;27(2):158–70. https://doi.
org/10.1111/j.1467-6427.2005.00308.x.
31. NICE. Transition from children’s to adults’ services for young people using
health or social care services. In: Excellence TNIfHaC, editor. UK: NICE; 2016.
32. Lockertsen V, Nilsen L, Holm LAW, Rø Ø, Burger LM, Røssberg JI. Mental
health professionals’ experiences transitioning patients with anorexia
nervosa from child/adolescent to adult mental health services: a qualitative
study. BMC Health Serv Res. 2020;20(1):1–9.
33. Maurin JT, Boyd CB. Burden of mental illness on the family: a critical review.
Arch Psychiatr Nurs. 1990;4(2):99–107. https://doi.org/10.1016/0883-941
7(90)90016-E.
34. Whitney J, Currin L, Murray J, Treasure J. Family work in anorexia nervosa: a
qualitative study of carers' experiences of two methods of family
intervention. Eur Eat Disord Rev. 2012;20(2):132–41. https://doi.org/10.1002/
erv.1077.
35. Roots P, Rowlands L, Gowers SG. User satisfaction with services in a
randomised controlled trial of adolescent anorexia nervosa. Eur Eat Disord
Rev. 2009;17(5):331–7. https://doi.org/10.1002/erv.944.
36. MacMaster SA. Differences in the well-being of family caregivers of adults
with mental illness and a co-occurring substance abuse disorder: Case
Western Reserve University; 2001.

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