A Qualitative Evaluation of Adolescent Patient’s and their Caregiver’s Perspectives following a Skills Intervention for Caregivers of People with Anorexia Nervosa

Objective: Caregivers request information; guidance and support in helping their loved one recover from Anorexia Nervosa (AN). The question is whether skills training interventions are of help, both to them, and indirectly for the person with AN. The aim of this study is to examine feedback from adolescent patients and their caregivers about their experiences following a skills intervention which compared two forms of interventions for caregivers (skills training materials, with or without coaching {E}) with Treatment As Usual (TAU). Method: Patients and caregivers from 38 eating disorder outpatient centers were randomized into one of three groups: a) skills training materials + TAU, b) skills training materials plus telephone coaching + TAU) or c) TAU alone. Feedback forms were sent to participants at 12 months and completed by 69 patients (n=26E; n=21 EC; n=21T) and 144 caregivers (n=50E; n=47EC; n=47T). Data were coded blind to treatment group by two researchers using thematic analysis. Results: Caregivers and patients recognize more positive changes in their caregivers’ approach than those in TAU. The additional coaching element was associated with a greater level of perceived self-changes in carers, e.g. relationship improvements, reduced anxiety, anger and hostility, than self-help alone and this, in turn, was greater than in TAU. Discussion: Qualitative feedback suggests that skills training materials may produce changes in caregiver behaviour, noted by patients and caregivers, particularly in the more intensive intervention group. Statistical analyses should be employed to explore these results further. This approach is easily disseminated and may play an important role in breaking some of the barriers to early intervention in this patient group.

experience when their adolescent daughters have AN (Bezance & Holliday, 2014) [6]. Caregivers express a need for support both from professionals and other parents (Bezance & Holliday, 2014;Roots et al., 2009) [6,7]. We have developed skills training materials (Experienced Caregivers Helping Others (ECHO)) for sharing skills and knowledge for caregivers (lay and professional).
The "Experienced Caregivers Helping Others (ECHO)" intervention is based on the cognitive interpersonal maintenance model of AN, and aims to help caregivers focus their own strengths and resources by using effective change strategies. The resources teach communication, fear extinction and behaviour change skills (Cairns et [8][9][10][11][12][13][14][15]. An additional component of this model addresses emotionally driven behaviours such as criticism, hostility, overprotection, accommodation and enabling behaviours that can be elicited because of the difficulty of coping with AN symptoms (Schmidt & Treasure, 2006;Treasure & Schmidt, 2013) [16,17]. These are modifiable behaviours and caregivers may benefit from skills training to reduce those   [13]. Caregivers are encouraged to reflect on their responses to the illness and to build awareness of how they can adapt their behaviour to have a positive effect on the trajectory of the illness. Additionally, they are taught to be role models to the person they are caring for and encouraged to engage in selfcare, adaptive coping and emotional intelligence (Macdonald et al., 2014) [18].
A recent meta-analysis of interventions for caregivers found a moderate-sized reduction in caregiver burden, distress and the ECHO intervention reduced expressed emotion and accommodating and enabling behaviours (Hibbs et al., 2015b) [19]. Moreover, in a study where the ECHO intervention was added to the inpatient treatment of adults with severe enduring AN, the patients identified positive caregiver behaviour changes (Macdonald et al., 2014) [18] and also showed improved symptomatology and quality of life at six months along with reduced bed use (Hibbs et al., 2015b) [19].
This current study is a qualitative evaluation to examine feedback about the use of the ECHO intervention in families of adolescents. A published protocol provides a detailed account of the intervention and the study design   [13]. The aim of the study is to examine the experiential perspective from caregivers and their adolescent loved ones of having participated in a career skills training intervention, particularly in terms of perceived behaviour change in both patient and caregiver.

Methods
Participants (n=149 patient/caregiver dyads) were part of a pragmatic three-arm multi-centre parallel group pilot randomized controlled trial   [13]. Consenting caregivers of patients who met the eligibility criteria were randomly allocated to receive ECHO (E) (book and DVDs) in addition to TAU, ECHO-C (EC), (book, DVDs and ten 30-40 minute telephone coaching sessions in addition to TAU, or TAU alone). The sample included caregivers and their adolescents (age 13-21 years) with AN or ED not otherwise specified AN type (EDNOS-AN) according to the DSM-IV criteria (American Psychiatric Association, 1994) [20], recruited from 38 eating disorder outpatient services across the United Kingdom (UK). The ECHO materials and coaching were delivered from the research hub. There was no further interaction between the research center and the contributing clinical sites where usual care was delivered. Follow-up assessments included computerised self-report instruments and structured interviews for both parents and patients. Main ethics approval was granted by the Northwick Park Hospitals Ethics Committee (11/H0725/4. Site specific ethics and governance approval was granted on all participating sites and this study was adopted by the Clinical Research Network (CRN).
Inclusion criteria required at least one caregiver (typically parent/s) to participate. Caregivers were required to be identified by the patient as 'carer', to be currently living with the patient with the intention of living together for the following year. Other close caregivers were also encouraged to take part. "Carers" are defined by criteria of the Princess Royal Trust (www.carers.org) as someone who provides unpaid help and support to a parent, child partner, relative, friend or neighbour. Patient demographics are presented in (Table 1). A full description of methodology that includes a detailed account of Participants, Intervention and Study Design appears in   [13].
Qualitative feedback was ascertained at 12 months from randomization. From the 149 patient/caregiver units, feedback questionnaires were completed by 69 patients (n=26 E; n=22 EC; n=21 TAU) and 144 caregivers (n=50 E; n=47 EC; n=47 TAU). The process evaluation questionnaires have been used in previous studies of eating disorders (Gowers et al., 2002) [21] and contained questions that related to their experience of the study and either a) their caring experience (caregivers) or b) their experience of caregiver support (patients). Patient forms asked 1) for their experience in taking part in the ECHO project and 2) their perspectives of their caregiver's role and any changes over the past year, particularly in the period following their first assessment with the outpatient eating disorders team. Meanwhile, caregivers were asked to share their experience as a caregiver of someone who has received outpatient care for AN in term of how they have reacted, coped with and managed the situation, pre and post intervention. Copies of the feedback forms are available from the first author.

Analysis
A thematic framework approach was adopted in the analysis of the written narratives on the feedback forms. Thematic analysis is a qualitative method for identifying, analyzing and reporting patterns or themes within a dataset (Braun & Clarke, 2006) [22]. Two researchers (PM and KB) worked independently on the identification of themes. An 'utterance' was coded and placed in a sub-theme; when the participant changed topic, this would constitute a new utterance and sub-theme. Researcher 1 (PM) worked on the entire dataset whilst Researcher 2 (KB) worked on a sub-section (10%) within. Feedback forms were read several times and initial codes generated and incorporated into meaningful clusters before being entered into the computer software programme (Nvivo Computer Software, 1999) [23].

Acta Psychopathologica ISSN 2469-6676
In devising a final thematic framework, discussions took place between the two researchers on six occasions (4 x caregivers at n=20, n=81, n=115, n=144 and 3 x patients at n=10, n= 28, n=68) via skype, email and face to face. Coding procedures were discussed, coding practices assessed and agreement obtained on emerging frameworks. After each discussion, themes were either consolidated or merged into existing themes. Descriptive labels were altered to better reflect the subject matter or deleted, if deemed irrelevant to research aims. Both researchers were blind to group allocation and blinding was only lifted a) once agreement had been made with regard to final thematic framework and b) upon agreement that data saturation had been achieved.

Results
Five main themes emerged from both patient and caregiver data sets. These are depicted in Table 2 (caregivers) and Table  3 (patients). In order to preserve anonymity, any personal references to either caregiver or patient in the quotations that follow are represented by the letter 'A'.

Perceived self-change
Carers spoke of improvements in relationship and communication, in particular, any change(s) noticed by carers with regards to their own attitudes, behaviour or approach to the AN and patient, as well as perceived improved relationships and communication with the sufferer. There appeared to be a greater number of reports in the EC group than in E alone or TAU (E: 34%; EC: 51%; TAU: 32%). Carers also reported reduced anxiety, anger and hostility in terms of a greater sense of calmness and less maladaptive emotions, e.g. guilt, anger and hostility. Again, there seemed to be a greater percentage of these reports in the EC group (E: 22%; EC: 36%; TAU: 11%).  Twelve participants reported no change in their behaviour or approach to the illness over the course of last year, i.e. during and after intervention.

Caregiver and patient efficacy
There were some interesting observations within this superordinate theme. Use of helpful strategies and techniques, for example, included many of the skills taught in the in the intervention materials, such as communication techniques, calmness, openness and honesty, passing more responsibility to sufferer for wellbeing, bigger picture thinking and challenging comfort zones. It was interesting to note that although many of the skills and techniques referred to are taught in the New Maudsley approach, references to the skills appeared in the narratives of all three groups, including TAU which might suggest a "contamination" effect in TAU (E: 24%; EC: 43%; TAU: 36%). The following three quotes, for example, were all written by caregivers in TAU and one quote in particular appears to imply previous training in caregiver skills.

Communicating without conflict and accusation (from workshops done) and understanding that some behaviours are normal when dealing with anorexia. (TAU)
Externalizing eating disorder, not getting drawn into discussions on food. Sticking rigidly to food plan. (TAU) Remember that the moods (outbursts) are the disorder and not daughter. Listen to her feelings and try to discuss worries. (TAU) The sub-theme 'healthy functioning (patient)' contained the researchers' interpretations of narratives that indicated normalized eating behaviours and the patient engaging in normal life with regards to school, social life and healthier eating behaviour. Although in some cases, narratives contained some signs of AN behaviours present, in general, feedback indicated a normal age related lifestyle with little support required from caregivers or professionals. There was a higher incidence of these reports in the intervention groups (E: 38%; EC: 30%; TAU: 19%). Although one should exercise caution in directly attributing any change to intervention effects, questions posed in the feedback forms did relate to changes 'during the past year', i.e. between the pre and post intervention periods.
He's doing really, really well. Working towards recovery. Doing well at university, come on a lot in the past year, gone for an interview for a job today, lots more confidence. (E) Coping well. Eating normally, still on anti-depressants but free in the main from crippling anxiety -hoorah! (EC) Over 40% (n=65) of the sample reported sharing a positive relationship with their loved one, despite the challenges of living alongside AN. Carers also reported providing emotional support, (encouragement, guidance, compassion) and practical support (mealtime support, financial support, transportation, food shopping, shared goal setting and problem solving strategies) with a slightly higher incidence of emotional support being reported in the guided self-help group (E: 42%; EC: 51%; TAU: 40%) .
Being there for her, not being judgmental. Gently persuading her to eat. Reminding her that she is loved by so many people and that her friends adore her. (EC) … Had to keep a diary for his eating…had to eat with him at a set time, made sure he had his breakfast, lunch and tea put in front of him … (E) Caregivers across the sample also reported an awareness of caregiver impact, with narratives reflecting on the consequences and influence of one's own actions on the trajectory of the illness.

Caregiver challenges
Sixty nine percent of caregivers (n=99) described the negative impact on self and/or family of living alongside AN. Narratives included reports of helplessness, frustration, high anxiety, hostility, conflict, anger, guilt, exhaustion and fear, as well as disruptions to family life in general. There were several reports of marital and relationship discord, feelings of isolation and concern for siblings, as well as detrimental consequences on one's own mental and physical health. The final two sub-themes were caregiver reflections over the illness or caring role, in general. There were also accounts of having received no support whatsoever (E: 24%; EC: 9%; TAU: 30%).
Getting back to normal after the very little support we received became absolutely none. (TAU) ( Table 2).

Patient Themes
Superordinate themes for patients included: 1) Perceived changes in caregiver(s) 2) Helpful factors towards recovery 3) Unhelpful caregiver behaviours 4) Experiential perspective of study participation and 5) Relationship with caregivers (Table 3).

Perceived change in caregiver(s)
These narratives represented patient perceptions of any changes they had noticed in their caregiver(s) over the course of the last year, i.e. pre and post intervention periods. Forty five patients reported greater insight and confidence in their carers, the ability to challenge problematic behaviours as well as improved understanding and awareness with suggestions of improved coping and coping strategies. Reports of greater understanding, awareness and coping were more frequent in the intervention groups (E: 73%; EC: 76% and TAU: 48%).

My Mum (primary carer) has a very good understanding of the illness. This has improved immensely since being involved with this study. (EC)
There were also reports of improved relationship and communication in terms of less distance, more openness and honesty in relationships and greater shared participation in noneating disorder communication and activities. Again, narratives appeared more in the intervention groups with the greatest frequency occurring in E (E: 42%; EC: 29%; TAU: 19%). Twenty participants reported a calmer behavioural and emotional climate in terms of calmer family dynamics, i.e. less anger, stress and anxiety along with increased patience in their carers. Likewise, these reports occurred more regularly in the intervention groups (E: 35%; EC: 33%; TAU: 19%).

She now talks to me about her concerns and worries involving my illness. More honest and open and is more understanding and less judgmental. All this means that she is able to know what support I need (emotionally or otherwise) (EC)
My Mum also remains a lot calmer now, as she seems to feel less responsible for my eating.

Talking and listening to each other in a calm, open manner is very helpful. (EC)
Monitoring of meals and food intake in terms of preparation, buying food and meal support was also considered important to recovery.

Having my dinner ready when I get home from school so I cannot binge and monitoring me after dinner to make sure I am not sick. (E)
Motivational support, i.e. awareness, understanding, praise and encouragement and distractions and normality, including bigger picture thinking, non-eating disorder talk and activities were regarded important by a quarter of the sample.

She has never become angry or irritated which has been very helpful and has always been understanding and patient which has made my life easier. (EC)
Distractions and normality, i.e. bigger picture thinking, including participation in non-eating disorder activities and conversation were thought to be helpful by almost a quarter of the sample.

Unhelpful caregiver behaviours
High expressed emotion was the most commonly quoted factor impeding recovery. Anger, anxiety, blame, stress, hostility and criticism is cited by 40% (n=27) of the sample. This factor appeared more frequently in the narratives in the intervention groups (E: 46%; EC: 43%; TAU: 29%). It is interesting that there was a higher frequency of E and EC patients' observations of a calmer behavioural and emotional climate in 'Perceived change in caregiver'. This may be further indicative of a certain element of change having occurred. Weak boundaries and accommodating to symptoms were also deemed unhelpful by a third of the sample.

Experiential perspective of study participation
Seventy eight percent of participants (n=53) reported positive aspects of having taken part in the study (E: 92%; EC: 81%; TAU: 57%). Narratives reflect appreciation, acceptability and positive impact of study, i.e. acceptability of questionnaires and monthly telephone calls, or a general feeling of the project having helped their situation or that of their caregiver by enhancing selfreflection.

The extra information has been brilliant. Giving my carers the information they needed to cope and to support me through the illness. (E)
Meanwhile, a similar proportion of the sample, 75%, (n=51) reported negative aspects of participation in terms of problems with telephone calls, difficulties encountered in completing questionnaires and of the study having had a negative impact on either self or caregiver. Examples included the emotional impact of being reminded of AN symptoms in the maintenance period, or the feeling of having been duped into participating and not receiving any help (TAU). There was also some confusion, particularly after outpatient treatment had ended, as to what period of time the questions referred.

Relationship with caregivers
The final superordinate theme contained sub-themes referring to relational aspects. Seventy three percent of patients (n=50) expressed an appreciation of caregiver impact, support and understanding in the manner they approach and deal with the illness. They reported caregiver coping strategies and appreciation of constant support. Sixty six percent of the sample (n=45) also reported aspects of a close relationship with their caregiver. However, almost half the sample also (n=33) reported problematic aspects of the relationship to varying degrees, which is understandable given the stressful conditions of living alongside AN. Narratives indicated a lack of understanding, problematic caregiver coping, caregiver anxiety and belittling of the illness.

The expectation for them of recovery is for me to like who I am and whatever I look like. My mum especially believes that people in the healthy weight range do not have such intrusive thoughts -she doesn't understand that mental illness cannot be fixed by weight gain. (TAU)
There were also some suggestions of patients experiencing feelings of guilt, empathy and awareness of caregivers' struggles (n=22; 32%). Guilt is often particularly pronounced when the patient recognizes the impact of their illness on their caregiver's own mental or physical wellbeing.  [24,25]. It is hoped that both approaches will provide a sense of complementarity, where different methods are used to assess different components. The current study examined the experiential perspectives in narratives from both patients and their caregivers after having taken part in a carer skills training intervention, particularly in light of any perceived changes reported during the post intervention period.

Caregivers
The additional coaching element was associated with a greater level of perceived self-changes, e.g. relationship improvements, reduced anxiety, anger and hostility, promoting independence and responsibility than self-help alone and this, in turn, was greater than in Treatment As Usual. Overall, there was very little feedback that suggested that the intervention was irrelevant or inappropriate for this patient group. Indeed, some caregivers said that the information would have been helpful at an even earlier stage. This is interesting as we thought that we were ascertaining patients early in their illness. Previous work has found that mothers find being given skills and practical advice helpful early in the illness (Bezance & Holliday, 2014) [4]. It is also important to consider those caregivers' recommendations that guidance and support be given upon diagnosis and introduced at the outset of the illness. There can be a long interval between when the first symptoms develop; acknowledgment that help and accessing expert help is needed (12 months) (B-EAT, 2015) [26]. A German study also found that the duration of untreated illness in the early onset group was high (Neubauer et al., 2014) [27]. One should bear in mind the costs of such delays and the ramifications on caregivers' (and siblings') family and social lives. There are implications in areas of work, extra financial burden and the family members' own physical and mental health. Delays can also carry heavy costs for their loved one's welfare in terms of emotional and physical wellbeing, education and social development and a poorer response to treatment (Treasure et al., 2014) [28]. Finally, it was interesting to note that reports of increased compassion and tolerance were greater in Treatment As Usual than in either of the intervention groups. It may be the case that carers become accepting and acquiescent whilst living alongside AN, whereas carer interventions focus on addressing symptoms within the spirit of emotional intelligence, by using communication techniques, challenging comfort zones, promoting responsibility and using consistent non-negotiable boundaries. Further research would be required to examine this point further.

Patients
Overall, there appears to be a higher frequency of patients reporting greater understanding, awareness and coping, improved relationships and a calmer emotional and behavioural climate in the intervention groups (E and EC) over . For example, one caregiver did not find the reflective element helpful. It may be the case that a more directive CBT type of coaching might be more beneficial in this group. Meanwhile, some caregivers reported additional needs that were not covered, such as the possible need to consider the overlap with autistic spectrum traits. An individually tailored caregiver intervention would involve working initially on a needs assessment, discussion of change objectives before developing a practical plan, along with adoption and implentation.

Limitations
The main limitation was the use of a written feedback approach as opposed to a semi-structured interview which would have made it possible to clarify those responses of a more ambiguous nature, as well as eliciting richer and more meaningful data. Another limitation was that only half of the patients in the study provided feedback compared to the higher number of carers who provided data which may have led to a bias towards those who were particularly engaged in the intervention. There may also have been a time lapse between outpatient attendance and receipt of feedback response form. A number of patients, for example, experienced confusion over what particular time period to which the questions referred. Finally, this feedback highlighted problems in the design of the study. It appears that the information given to patients about the study was considered to be unhelpful or incorrect and some participants felt coerced. Also, the background level of dissemination of the basic aspects of the intervention is quite high with caregivers in all groups attending workshops and accessing the materials. Consequently, this appears to have resulted in some contamination in the Treatment As Usual group.

Strengths
The main strength of this study is that, as far as we are aware, it is the first study to have explored in detail, the experience of adolescent outpatients and their caregivers' participation in a skills training intervention. Another strength was the reasonably high return of caregiver feedback questionnaires. Furthermore, it is possible to compare experiential perspectives across stage of illness between younger and older patients as the same intervention was used and measured in earlier phases of the research (Macdonald et al., 2014) [15]. Finally, blinding of assessors is also strength in terms of study methodology.

Conclusion
Changes in caregiver behaviours and attitudes are noted both by caregivers and patients, when caregivers have access to the skills training intervention. We did not find major differences in the relevance of these materials for people in the early versus severe and enduring stage of illness. The background level of caregiver support and information is greater in the adolescent group than in our study of adults but this may be because of a general increase in dissemination rather than being related to the age of the participants. However, some comments suggest that the timing and pace of the intervention may need to be different in the adolescent group.
This study ilustrates how caregiver skills training materials are successfully used by caregivers to change their behaviours. These changes in style are observed by patients as well as by caregivers themselves. Moreover, this approach can be easily disseminated and may play an important role in breaking some of the barriers to early intervention in this patient group.

Competing Interests
JT is an author of the book used in the ECHO intervention (Treasure et al., 2007). RH, CR, EG, PM and GT provided coaching in the ECHOc treatment arm.