Acceptability of Specialist Psychotherapy with Emotion for Anorexia in Kent and Sussex (SPEAKS): A novel intervention for anorexia nervosa.

OBJECTIVE: Investigate the acceptability of Specialist Psychotherapy with Emotion for Anorexia in Kent and Sussex (SPEAKS), a novel intervention for anorexia nervosa (AN), conducted as a feasibility trial to provide an initial test of the intervention. METHODS: SPEAKS therapy lasting 9-12 months was provided to 34 people with AN or atypical AN by eight specialist eating disorder therapists trained in the model across two NHS Trusts in the UK (Kent and Sussex) during a feasibility trial. All participants were offered a post-therapy interview; sixteen patients and six therapists agreed. All patient participants were adult females. Interviews were semi-structured and asked questions around individuals' experience of SPEAKS, the acceptability of the intervention and of the research methods. Interviews were analyzed using thematic analysis. RESULTS: Key areas explored in line with research questions led to 5 overarching themes and 14 subthemes: (1) shift in treatment focus and experience, (2) balancing resources and treatment outcomes, (3) navigating the online treatment environment, (4) therapist adaptation and professional development, and (5) research processes. DISCUSSION: SPEAKS was found to be an acceptable intervention for treating AN from the perspective of patients and therapists. The findings provide strong support for delivery of a larger scale randomized control trial. Recommendations for future improvements, particularly pertaining to therapist understanding of the treatment model are detailed, alongside broader clinical implications. PUBLIC SIGNIFICANCE: We aimed to evaluate the acceptability of a new anorexia nervosa treatment called SPEAKS. Interviews were conducted with patients and therapists involved in the pilot study and responses were analyzed. Results showed that both patients and therapists found SPEAKS to be an acceptable treatment for anorexia nervosa. The study suggests that SPEAKS meets the criteria for moving forward with a larger trial to assess its effectiveness.

Specialist psychotherapy with emotion for anorexia in Kent and Sussex: An intervention development and non-randomised single arm feasibility trial.

OBJECTIVE: Anorexia nervosa (AN) is a serious eating disorder treated using psychological interventions, yet outcomes remain limited. Emotional difficulties are recognised as a treatment target. This research programme developed and evaluated feasibility of an emotion-focused therapy for adults with AN. METHODS: Phase One intervention development utilised 'intervention mapping'. Qualitative research drew on lived experience highlighting objectives for change. Empirical evidence was synthesised into hypotheses of core emotional difficulties and an associated model of change. Relevant psychotherapeutic theory-based change methods were integrated to form the Specialist Psychotherapy with Emotion for Anorexia in Kent and Sussex (SPEAKS) intervention, guidebook and clinician training package. Phase Two tested SPEAKS in a single-arm, multisite feasibility trial across two specialist services, utilising prespecified progression criteria, and embedded process evaluation. RESULTS: SPEAKS was 9-12 months (40 sessions) of weekly individual psychotherapy, drawing on a range of psychotherapeutic modalities, predominantly Emotion Focused Therapy and Schema Therapy. Forty-six participants consented to feasibility trial participation; 42 entered the trial and 34 completed. Thirteen of 16 feasibility criteria were met at green level and three at amber, highlighting areas for improving model adherence. CONCLUSIONS: A randomised controlled trial is indicated. Therapist training and guidebook adjustments to improve model adherence are suggested.

Adult mental health service engagement with patients who are parents: Evidence from 15 English mental health trusts.

OBJECTIVES: Ascertaining whether mental health service users have children is a clinical requirement in UK health services, and acknowledgement of a patient's parenting role is necessary to enable engagement with their parenting experience and to facilitate support, both of which are associated with improved outcomes for the parent-child dyad. The current study sought to investigate the practice of mental health practitioners working in UK adult mental health services with regard to the following: Ascertaining whether patients have children; engagement with the parenting role of patients; engagement with the construct of 'think patient as parent'. METHODS: Self-report online/paper survey of 1105 multi-disciplinary adult mental health practitioners working in 15 mental health trusts in England. RESULTS: A quarter of adult mental health practitioners did not routinely ascertain whether patients had dependent children. Less than half of practitioners engaged with the parenting experience or the potential impact of parental mental health on children. CONCLUSIONS: The parenting role of patients is not routinely captured by large numbers of practitioners working in adult mental health settings. This is despite it being a mandatory requirement and an integral component of the systematic care of the adult, and preventative care for the offspring. Failure to engage with patients who are parents is a missed opportunity with profound downstream public health implications. The practice deficits identified in this study should be viewed in terms of broader structural failures to address the intergenerational transmission of poor mental health. PRACTITIONER POINTS: Some parents who have mental health difficulties may struggle to provide appropriate and effective care to their children. The parenting role can also exacerbate mental health difficulties. Identification of dependent children is a mandatory component of adult mental health clinical practice and is necessary to understand a parent's support needs. A quarter of adult mental health practitioners are failing to do so. A missed opportunity to engage with the support needs of the parent-child dyad.

Enhancing member engagement in a Tier 3 personality disorder service during COVID-19: evaluation of a virtual group programme.

BACKGROUND: Drop-out rates from evidence-based interventions for people with a diagnosis of personality disorder (PD) are high. The COVID-19 pandemic has likely exacerbated barriers to engagement with the introduction of virtual working. Virtual therapy has a good evidence-base for Axis I disorders, but limited research for Axis II disorders. AIMS: To investigate facilitators and barriers to engagement in a Tier 3 PD service virtual group programme. METHOD: A virtual group programme was developed in collaboration with service members, and analysed members' attendance rates over a 5-month period pre- and post-COVID-19. Thematic analysis of semi-structured telephone interviews with 38 members is reported, describing their experience of the virtual group programme. RESULTS: Attendance rates were significantly higher pre-COVID (72%) than post-COVID (50%). Thematic analysis highlighted key barriers to attendance were: practical issues, low motivation, challenges of working in a group online and feeling triggered at home. Main promoters of engagement were: feeling valued, continued sense of connection and maintaining focus on recovery. DISCUSSION: The results suggest that the pandemic has exacerbated relational and practical barriers to engagement in a Tier 3 PD service. Ways of enhancing engagement are discussed, as well as preliminary recommendation for services offering virtual therapy to people with a diagnosis of PD.

The revised Green et al., Paranoid Thoughts Scale (R-GPTS): psychometric properties, severity ranges, and clinical cut-offs.

BACKGROUND: The Green et al., Paranoid Thoughts Scale (GPTS) - comprising two 16-item scales assessing ideas of reference (Part A) and ideas of persecution (Part B) - was developed over a decade ago. Our aim was to conduct the first large-scale psychometric evaluation. METHODS: In total, 10 551 individuals provided GPTS data. Four hundred and twenty-two patients with psychosis and 805 non-clinical individuals completed GPTS Parts A and B. An additional 1743 patients with psychosis and 7581 non-clinical individuals completed GPTS Part B. Factor analysis, item response theory, and receiver operating characteristic analyses were conducted. RESULTS: The original two-factor structure of the GPTS had an inadequate model fit: Part A did not form a unidimensional scale and multiple items were locally dependant. A Revised-GPTS (R-GPTS) was formed, comprising eight-item ideas of reference and 10-item ideas of persecution subscales, which had an excellent model fit. All items in the new Reference (a = 2.09-3.67) and Persecution (a = 2.37-4.38) scales were strongly discriminative of shifts in paranoia and had high reliability across the spectrum of severity (a > 0.90). The R-GPTS score ranges are: average (Reference: 0-9; Persecution: 0-4); elevated (Reference: 10-15; Persecution: 5-10); moderately severe (Reference: 16-20; Persecution:11-17); severe (Reference: 21-24; Persecution: 18-27); and very severe (Reference: 25+; Persecution: 28+). Recommended cut-offs on the persecution scale are 11 to discriminate clinical levels of persecutory ideation and 18 for a likely persecutory delusion. CONCLUSIONS: The psychometric evaluation indicated a need to improve the GPTS. The R-GPTS is a more precise measure, has excellent psychometric properties, and is recommended for future studies of paranoia.

The Dunn Worry Questionnaire and the Paranoia Worries Questionnaire: new assessments of worry.

BACKGROUND: The cognitive process of worry, which keeps negative thoughts in mind and elaborates the content, contributes to the occurrence of many mental health disorders. Our principal aim was to develop a straightforward measure of general problematic worry suitable for research and clinical treatment. Our secondary aim was to develop a measure of problematic worry specifically concerning paranoid fears. METHODS: An item pool concerning worry in the past month was evaluated in 250 non-clinical individuals and 50 patients with psychosis in a worry treatment trial. Exploratory factor analysis and item response theory (IRT) informed the selection of scale items. IRT analyses were repeated with the scales administered to 273 non-clinical individuals, 79 patients with psychosis and 93 patients with social anxiety disorder. Other clinical measures were administered to assess concurrent validity. Test-retest reliability was assessed with 75 participants. Sensitivity to change was assessed with 43 patients with psychosis. RESULTS: A 10-item general worry scale (Dunn Worry Questionnaire; DWQ) and a five-item paranoia worry scale (Paranoia Worries Questionnaire; PWQ) were developed. All items were highly discriminative (DWQ a = 1.98-5.03; PWQ a = 4.10-10.7), indicating small increases in latent worry lead to a high probability of item endorsement. The DWQ was highly informative across a wide range of the worry distribution, whilst the PWQ had greatest precision at clinical levels of paranoia worry. The scales demonstrated excellent internal reliability, test-retest reliability, concurrent validity and sensitivity to change. CONCLUSIONS: The new measures of general problematic worry and worry about paranoid fears have excellent psychometric properties.

Preventing family transmission of anxiety: Feasibility RCT of a brief intervention for parents.

OBJECTIVES: Children of anxious parents are at high risk of anxiety disorders themselves. The evidence suggests that this is due to environmental rather than genetic factors. However, we currently do little to reduce this risk of transmission. There is evidence that supporting parenting in those with mental health difficulties can ameliorate this risk. Therefore, the objective of this study was to test the feasibility of a new one-session, group-based, preventive parenting intervention for parents with anxiety disorders. DESIGN: Feasibility Randomized Controlled Trial. METHODS: A total of 100 parents with anxiety disorders, recruited from adult mental health services in England (and child aged 3-9 years), were randomized to receive the new intervention (a 1-day, group workshop), or to treatment as usual. Children's anxiety disorder and anxiety symptoms were assessed to 12 months by outcome assessors who were blind to group allocation. Exploratory analyses were conducted on an intention to treat basis, as far as possible. RESULTS: A total of 51 participants were randomized to the intervention condition and 49 to the control condition (82% and 80% followed to 12 months, respectively). The attendance rate was 59%, and the intervention was highly acceptable to parents who received it. The RCT was feasible, and 12-month follow-up attrition rates were low. Children whose parents were in the control condition were 16.5% more likely to have an anxiety disorder at follow-up than those in the intervention group. No adverse events were reported. CONCLUSIONS: An inexpensive, light-touch, psycho-educational intervention may be useful in breaking the intergenerational cycle of transmission of anxiety disorders. A substantive trial is warranted. PRACTITIONER POINTS: Anxiety disorders run in families, but we currently do little to help anxious parents to raise confident children. A brief group workshop was highly acceptable to such parents and was very inexpensive to run. Children of parents who took part in the brief intervention were 16.5% less likely to have an anxiety disorder, 1 year later, than children whose parents were in the control group. This was a feasibility study, and while it showed that both the intervention and the research were feasible, the study needs replicating with a much larger sample. Many parents faced barriers to attending the workshop, and future efforts should focus on widening accessibility. We were unable to obtain sufficient self-report data from children, so the outcomes are based on parent report only.

Meaningful Ways of Understanding and Measuring Change for People with Borderline Personality Disorder: A Thematic Analysis.

BACKGROUND: The effective treatment of Borderline Personality Disorder (BPD) presents healthcare providers with a significant challenge. The evidence base remains limited partially due to a lack of professional consensus and service user involvement regarding ways of measuring change. As a result, the limited evidence that is available draws on such a wide range of outcome measures, that comparison across treatment types is hindered, maintaining a lack of clarity regarding the clinical needs of this group. AIMS: This investigation aimed to follow the National Institute of Clinical Excellence (NICE, 2009) research recommendations by asking service users about meaningful change within their recovery. This forms a starting point for the future development of a tailored outcome measure. METHOD: Fifteen service users with a diagnosis of BPD participated in three focus groups across two specialist Personality Disorder services. The focus groups were analysed using Thematic Analysis. RESULTS: Two superordinate themes were synthesized from the data: (1) recovery to what?: 'How do you rewrite who you are?'; and (2) conditions for change. Each superordinate theme further consisted of three subordinate themes which elucidated the over-arching themes. CONCLUSION: This investigation highlights the complex nature of measuring change in people who have received a BPD diagnosis. Further research is needed to develop meaningful ways of measuring change according to the needs and priorities of people with BPD.

Worry processes in patients with persecutory delusions.

OBJECTIVES: Worry may be common in patients with paranoia and a contributory causal factor in the occurrence of the delusions. A number of psychological mechanisms have been linked to the occurrence of worry in emotional disorders but these are yet to be investigated in psychosis. The primary aim of the study was to test the links between five main worry mechanisms - perseverative thinking, catastrophizing, stop rules, metacognitive beliefs, and intolerance of uncertainty - and the cognitive style of worry in patients with persecutory delusions. METHOD: One hundred and fifty patients with persecutory delusions completed assessments of paranoia, worry, and worry mechanisms. RESULTS: Worry in patients with psychosis was associated with the following: a perseverative thinking style, an 'as many as can' stop rule, a range of metacognitive beliefs (cognitive confidence, worry as uncontrollable and the need to control thoughts), and intolerance of uncertainty. Higher levels of worry were associated with higher levels of paranoia. There was also evidence that intolerance of uncertainty and the metacognitive belief concerning the need to control thoughts were independently associated with paranoia. CONCLUSIONS: Worry in patients with persecutory delusions may well be understood by similar underlying mechanisms as worry in emotional disorders. This supports the use of interventions targeting worry, suitably modified, for patients with psychosis. PRACTITIONER POINTS: Worry is a significant concern for patients with paranoia Worry in paranoia is likely to be caused by similar mechanisms as worry in emotional disorders The results support the recent trial findings that standard techniques for treating worry in anxiety, suitably modified, are applicable for patients with paranoia LIMITATIONS: The findings are limited by the self-report nature of measures and by the study design which precludes any assumptions about the direction of causality between the psychological mechanisms and worry.

Treating Sleep Problems in Patients with Schizophrenia.

BACKGROUND: Sleep disturbance is increasingly recognized as a major problem for patients with schizophrenia but it is rarely the direct focus of treatment. The main recommended treatment for insomnia is cognitive behavioural therapy, which we have been evaluating for patients with current delusions and hallucinations in the context of non-affective psychosis. AIMS: In this article we describe the lessons we have learned about clinical presentations of sleep problems in schizophrenia and the adaptations to intervention that we recommend for patients with current delusions and hallucinations. METHOD: Twelve factors that may particularly contribute to sleep problems in schizophrenia are identified. These include delusions and hallucinations interfering with sleep, attempts to use sleep as an escape from voices, circadian rhythm disruption, insufficient daytime activity, and fear of the bed, based upon past adverse experiences. Specific adaptations for psychological treatment related to each factor are described. CONCLUSIONS: Our experience is that patients want help to improve their sleep; sleep problems in schizophrenia should be treated with evidence-based interventions, and that the interventions may have the added benefit of lessening the psychotic experiences. A treatment technique hierarchy is proposed for ease of translation to clinical practice.

The Perseverative Thinking Questionnaire in Patients with Persecutory Delusions.

BACKGROUND: Ruminative negative thinking has typically been considered as a factor maintaining common emotional disorders and has recently been shown to maintain persecutory delusions in psychosis. The Perseverative Thinking Questionnaire (PTQ) (Ehring et al., 2011) is a transdiagnostic measure of ruminative negative thinking that shows promise as a "content-free" measure of ruminative negative thinking. AIMS: The PTQ has not previously been studied in a psychosis patient group. In this study we report for the first time on the psychometric properties of Ehring et al.'s PTQ in such a group. METHOD: The PTQ was completed by 142 patients with current persecutory delusions and 273 non-clinical participants. Participants also completed measures of worry and paranoia. A confirmatory factor analysis was performed on the clinical group's PTQ responses to assess the factor structure of the measure. Differences between groups were used to assess criterion reliability. RESULTS: A three lower-order factor structure of the PTQ (core characteristics of ruminative negative thinking, perceived unproductiveness, and capturing mental capacity) was replicated in the clinical sample. Patients with persecutory delusions were shown to experience significantly higher levels of ruminative negative thinking on the PTQ than the general population sample. The PTQ demonstrated high internal reliability. CONCLUSIONS: This study did not include test-retest data, and did not compare the PTQ against a measure of depressive rumination but, nevertheless, lends support for the validity of the PTQ as a measure of negative ruminative thinking in patients with psychosis.

How do individuals with persecutory delusions bring worry to a close? An interpretive phenomenological analysis.

BACKGROUND: Worry is a significant problem for individuals with paranoia, leading to delusion persistence and greater levels of distress. There are established theories concerning processes that maintain worry but little has been documented regarding what brings worry to a close. AIMS: The aim was to find out what patients with persecutory delusions report are the factors that bring a worry episode to an end. METHOD: Eight patients with persecutory delusions who reported high levels of worry participated. An open-ended semi-structured interview technique and IPA qualitative analysis was employed to encourage a broad elaboration of relevant constructs. RESULTS: Analyses revealed one theme that captured participants' detailed descriptions of their experience of worry and five themes that identified factors important for bringing worry episodes to a close: natural drift, distraction, interpersonal support, feeling better, and reality testing. CONCLUSIONS: Patients with persecutory delusions report worry being uncontrollable and distressing but are able to identify ways that a period of worry can stop. The present study suggests that building on individuals' distraction techniques, reality testing ability and their social support network could be of benefit. Research is needed to identify the most effective means of bringing paranoid worries to an end.

Design of an international multicentre RCT on group schema therapy for borderline personality disorder.

BACKGROUND: Borderline personality disorder (BPD) is a severe and highly prevalent mental disorder. Schema therapy (ST) has been found effective in the treatment of BPD and is commonly delivered through an individual format. A group format (group schema therapy, GST) has also been developed. GST has been found to speed up and amplify the treatment effects found for individual ST. Delivery in a group format may lead to improved cost-effectiveness. An important question is how GST compares to treatment as usual (TAU) and what format for delivery of schema therapy (format A; intensive group therapy only, or format B; a combination of group and individual therapy) produces the best outcomes. METHODS/DESIGN: An international, multicentre randomized controlled trial (RCT) will be conducted with a minimum of fourteen participating centres. Each centre will recruit multiple cohorts of at least sixteen patients. GST formats as well as the orders in which they are delivered to successive cohorts will be balanced. Within countries that contribute an uneven number of sites, the orders of GST formats will be balanced within a difference of one. The RCT is designed to include a minimum of 448 patients with BPD. The primary clinical outcome measure will be BPD severity. Secondary clinical outcome measures will include measures of BPD and general psychiatric symptoms, schemas and schema modes, social functioning and quality of life. Furthermore, an economic evaluation that consists of cost-effectiveness and cost-utility analyses will be performed using a societal perspective. Lastly, additional investigations will be carried out that include an assessment of the integrity of GST, a qualitative study on patients' and therapists' experiences with GST, and studies on variables that might influence the effectiveness of GST. DISCUSSION: This trial will compare GST to TAU for patients with BPD as well as two different formats for the delivery of GST. By combining an evaluation of clinical effectiveness, an economic evaluation and additional investigations, it will contribute to an evidence-based understanding of which treatment should be offered to patients with BPD from clinical, economic, and stakeholders' perspectives. TRIAL REGISTRATION: Netherlands Trial Register NTR2392. Registered 25 June 2010.

Depersonalization in patients with persecutory delusions.

Delusions are, in part, attempts to explain confusing anomalous experience. Depersonalization, a key subset of anomalous experience, has been little studied in relation to persecutory delusions. The aims of this study were to assess the presence of depersonalization in patients with persecutory delusions and to examine associations with levels of paranoia and worry. Fifty patients with a current persecutory delusion completed measures of depersonalization, psychotic symptoms, and worry. Depersonalization experiences were common: 30 patients (60%) each reported at least 10 different depersonalization symptoms occurring often. A greater number of depersonalization experiences were associated with higher levels of paranoia and worry. The positive association of worry and paranoia became nonsignificant when controlling for depersonalization. Overall, depersonalization may be common in patients with persecutory delusions and is associated with the severity of paranoia. The results are consistent with the view that worry may cause depersonalization experiences that contribute to the occurrence of paranoid thoughts.

Persecutory delusions and psychological well-being.

PURPOSE: Persecutory delusions are one of the key problems seen in psychotic conditions. The aim of the study was to assess for the first time the levels of psychological well-being specifically in patients with current persecutory delusions. METHOD: One hundred and fifty patients with persecutory delusions in the context of a diagnosis of non-affective psychosis, and 346 non-clinical individuals, completed the Warwick-Edinburgh Mental Well-Being Scale and symptom assessments. RESULTS: Well-being scores were much lower in the persecutory delusions group compared with the non-clinical control group. 47 % of the persecutory delusions group scored lower than two standard deviations below the control group mean score. Within the patient group, psychological well-being was negatively associated with depression, anxiety, and hallucinations. In both groups, lower levels of well-being were associated with more severe paranoia. CONCLUSIONS: Levels of psychological well-being in patients with current persecutory delusions are strikingly low. This is likely to arise from the presence of affective symptoms and psychotic experiences. Measurement of treatment change in positive mental health for patients with psychosis is recommended.

Worry and rumination in anorexia nervosa.

BACKGROUND: Difficulties with comprehending and managing emotions are core features of the pathology of anorexia nervosa (AN). Advancements in understanding aetiology and treatment have been made within other clinical domains by targeting worry and rumination. However, worry and rumination have been given minimal consideration in AN. AIMS: This study is the largest to date of worry and rumination in AN. METHOD: Sixty-two outpatients with a diagnosis of AN took part. Measures of worry, rumination, core AN pathology and neuropsychological correlates were administered. RESULTS: Findings suggest that worry and rumination are elevated in AN patients compared with both healthy controls and anxiety disorder comparison groups. Regression analyses indicated that worry and rumination were significant predictors of eating disorder symptomatology, over and above the effects of anxiety and depression. Worry and rumination were not associated with neuropsychological measures of set-shifting and focus on detail. CONCLUSIONS: The data suggest that worry and rumination are major concerns for this group and warrant further study.

[Relapse prevention in anorexia nervosa]. / Rückfallprophylaxe bei Anorexia nervosa.

Anorexia nervosa is characterised by high relapse rates and thus there is a need for strategies that reduce reoccurrence of illness. One way of achieving this is to integrate relapse prevention into treatment, but clearly this requires identification of risk and maintenance factors. The Maudsley Model of Anorexia Nervosa Treatment in Adults (MANTRA) by Schmidt & Treasure has 5 major treatment stages. These include an initial stage of motivation and dialogue about change, an individual relapse formulation, improvement of cognitive and socio-emotional skills, work on the patient's identity and eventually a final stage of ending and parting. These treatment stages are derived from a maintenance model of AN by Schmidt & Treasure and on evidence from recovered patients and part of their objective is to prevent relapse.

Does trait mindfulness mediate the relationship between borderline personality symptoms and emotion dysregulation?

BACKGROUND: Emotion dysregulation is core to many biopsychosocial models of Borderline Personality Disorder (BPD) and is often targeted as part of their associated psychological therapies. Several distinct specialist psychotherapies are thought to be effective for people diagnosed with BPD but it is unclear whether they share common change mechanisms. Some evidence suggests that Mindfulness Based Interventions improve competency in emotion regulation as well as trait mindfulness, which are both plausibly associated with good treatment outcomes. It is unclear whether the association between the severity of BPD symptoms and emotion dysregulation is mediated by trait mindfulness. Would improvement in trait mindfulness mediate an association between lower severity of BPD symptoms and fewer problems of emotion dysregulation? METHODS: One thousand and twelve participants completed online, single time-point, self-report questionnaires. RESULTS: As predicted, the severity of BPD symptoms was significantly and positively associated with emotion dysregulation with a large effect size (r = .77). Trait mindfulness mediated this relationship as the 95% confidence interval for the indirect effect did not cross zero (size of direct effect = .48 and size of indirect effect = .29 [.25, .33]. CONCLUSIONS: The relationship between the severity of BPD symptoms and emotion dysregulation was confirmed in this dataset. As hypothesised, this relationship was mediated by trait mindfulness. Process measures of emotion dysregulation and mindfulness should be included in intervention studies for people diagnosed with BPD to understand if improvements in these factors are a universal occurrence with good response to treatment. Other process measures should also be explored to identify other factors involved in the relationship between BPD symptoms and emotion dysregulation.

Co-producing principles to guide health research: an illustrative case study from an eating disorder research clinic.

BACKGROUND: There is significant value in co-produced health research, however power-imbalances within research teams can pose a barrier to people with lived experience of an illness determining the direction of research in that area. This is especially true in eating disorder research, where the inclusion of co-production approaches lags other research areas. Appealing to principles or values can serve to ground collaborative working. Despite this, there has not been any prior attempt to co-produce principles to guide the work of a research group and serve as a basis for developing future projects. METHODS: The aim of this piece of work was to co-produce a set of principles to guide the conduct of research within our lived experience led research clinic, and to offer an illustrative case for the value of this as a novel co-production methodology. A lived experience panel were recruited to our eating disorder research group. Through an iterative series of workshops with the members of our research clinic (composed of a lived experience panel, clinicians, and researchers) we developed a set of principles which we agreed were important in ensuring both the direction of our research, and the way in which we wanted to work together. RESULTS: Six key principles were developed using this process. They were that research should aim to be: 1) real world-offering a clear and concrete benefit to people with eating disorders, 2) tailored-suitable for marginalised groups and people with atypical diagnoses, 3) hopeful-ensuring that hope for recovery was centred in treatment, 4) experiential-privileging the 'voice' of people with eating disorders, 5) broad-encompassing non-standard therapeutic treatments and 6) democratic-co-produced by people with lived experience of eating disorders. CONCLUSIONS: We reflect on some of the positives as well as limitations of the process, highlighting the importance of adequate funding for longer-term co-production approaches to be taken, and issues around ensuring representation of minority groups. We hope that other health research groups will see the value in co-producing principles to guide research in their own fields, and will adapt, develop, and refine this novel methodology.

It important that when researchers are trying to understand illnesses they do this together with people who have experienced them. This can be difficult, because researchers often take over­even if everyone is meant to be working as a team. We are a group of people trying to understand eating disorders and help people who have them get better. In our group there are some people that have experienced an eating disorder, health workers and researchers.We thought it might be helpful if we could start by working out what things were most important to us as a group, and then try to stick by them. We talked a lot together to come up with a list of principles.The six principles we thought were the most important were that research should make a difference to people's lives, see people as individuals, be hopeful, make sure that people have a voice, look at things that aren't traditional therapies, and always work together as equals.There are some issues with what we did; we found it hard to get a good mix of people in our group, and we were lucky in having enough money to pay people to do what we wanted to do, which is not always true. Despite this, we still hope that other teams might look at what we have done, and see if they could build on it, or change it, so it would work for them.