Clinical effectiveness of the psychological therapy Mental Health Intervention for Children with Epilepsy in addition to usual care compared with assessment-enhanced usual care alone: a multicentre, randomised controlled clinical trial in the UK.

BACKGROUND: Mental health difficulties are common in children and young people with chronic health conditions, but many of those in need do not access evidence-based psychological treatments. The study aim was to evaluate the clinical effectiveness of integrated mental health treatment for children and young people with epilepsy, a common chronic health condition known to be associated with a particularly high rate of co-occurring mental health difficulties. METHODS: We conducted a parallel group, multicentre, open-label, randomised controlled trial of participants aged 3-18 years, attending epilepsy clinics across England and Northern Ireland who met diagnostic criteria for a common mental health disorder. Participants were randomised (1:1; using an independent web-based system) to receive the Mental Health Intervention for Children with Epilepsy (MICE) in addition to usual care, or assessment-enhanced usual care alone (control). Children and young people in both groups received a full diagnostic mental health assessment. MICE was a modular psychological intervention designed to treat common mental health conditions in children and young people using evidence-based approaches such as cognitive behaviour therapy and behavioural parenting strategies. Usual care for mental health disorders varied by site but typically included referral to appropriate services. Participants, along with their caregivers, and clinicians were not masked to treatment allocation but statisticians were masked until the point of analysis. The primary outcome, analysed by modified intention-to-treat, was the parent-report Strengths and Difficulties Questionnaire (SDQ) at 6 months post-randomisation. The study is complete and registered with ISRCTN (57823197). FINDINGS: 1401 young people were potentially deemed eligible for study inclusion. Following the exclusion of 531 young people, 870 participants were assessed for eligibility and completed the SDQ, and 480 caregivers provided consent for study inclusion between May 20, 2019, and Jan 31, 2022. Between Aug 28, 2019, and Feb 21, 2022, 334 participants (mean ages 10·5 years [SD 3·6] in the MICE group vs 10·3 [4·0] in control group at baseline) were randomly assigned to an intervention using minimisation balanced by age, primary mental health disorder, diagnosis of intellectual disability, and autistic spectrum disorder at baseline. 168 (50%) of the participants were female and 166 (50%) were male. 166 participants were randomly assigned to the MICE group and 168 were randomly assigned to the control group. At 6 months, the mean SDQ difficulties for the 148 participants in the MICE group was 17·6 (SD 6·3) and 19·6 (6·1) for the 148 participants in the control group. The adjusted effect of MICE was -1·7 (95% CI -2·8 to -0·5; p=0·0040; Cohen's d, 0·3). 14 (8%) patients in the MICE group experienced at least one serious adverse event compared with 24 (14%) in the control group. 68% percent of serious adverse events (50 events) were admission due to seizures. INTERPRETATION: MICE was superior to assessment-enhanced usual care in improving symptoms of emotional and behavioural difficulties in young people with epilepsy and common mental health disorders. The trial therefore shows that mental health comorbidities can be effectively and safely treated by a variety of clinicians, utilising an integrated intervention across ages and in the context of intellectual disability and autism. The evidence from this trial suggests that such a model should be fully embedded in epilepsy services and serves as a model for other chronic health conditions in young people. FUNDING: UK National Institute for Health Research Programme Grants for Applied Research programme and Epilepsy Research UK Endeavour Project Grant.

'Don't let it hold you back' - The experience of transition to adulthood in young people with primary ciliary dyskinesia: An interpretative phenomenological analysis.

Primary ciliary dyskinesia (PCD) is a rare, chronic genetic condition with variable features arising from motile cilia dysfunction, including recurrent respiratory infections, sinonasal disease, reduced hearing, infertility and situs inversus. The aim of the study was to understand the experiences of young people with PCD as they transition into adulthood and adult healthcare services. An interpretative phenomenological analytical method was applied. Semi-structured interviews were conducted with three participants aged 18-24 years. Four interconnected group experiential themes were identified: (1) reconceptualising a stigmatised identity, (2) sharing the journey to independence, (3) entering adulthood with newfound autonomy, (4) anticipating an uncertain future. Overall, we found that transition for young people with PCD presents as a complex period marked by identity-formation, creating systems of support and becoming an autonomous adult. Facilitation of personalised and integrated approaches to care should be prioritised. Our findings are important to help health professionals provide appropriate, anticipatory support.

Evaluation of the feasibility and acceptability of an integrative group psychological intervention for people with Multiple Sclerosis: A study protocol.

Multiple Sclerosis (MS) is characterised by significant symptom diversity and complexity. The unpredictability of the symptoms and the emotional and cognitive facets of the disease have a significant impact on the patients' quality of life, relationships and other significant areas of living. Psychological interventions have been found to have moderate effects on quality of life, depression, stress reduction, improvement of wellbeing, anxiety, fatigue, sleep disturbances and emotion regulation. Most interventions so far are based on generic models of therapy which cannot always cover the complexity and unpredictability of MS. The present research project follows from an exploratory mixed method study on the experience of psychological interventions and the impact on the management of MS. The results of that study generated themes that led to the development of an integrative group psychological intervention named MyMS-Ally. The current study aims to explore the feasibility and acceptability of MyMS-Ally intervention and obtain preliminary data on the effects on quality of life, emotion regulation, depression and anxiety through the application of a convergent mixed methods design. People with MS will be recruited at the Bristol and Avon Multiple Sclerosis centre, North Bristol NHS Trust. They will participate in MyMS-Ally group intervention for 8 weeks. Individual semi-structured interviews drawing on Interpretative Phenomenological methodology will be conducted before and after the intervention and at three months follow up. Participants will complete quantitative measures on quality of life, emotion regulation, depression and anxiety before and after the intervention and at one and three months follow up. The aim is to explore the relevance, sustainability and adherence to the intervention and study processes (feasibility) as well as the appropriateness of the intervention based on the emotional and cognitive responses, satisfaction and perceived effectiveness (acceptability). It is aspired that this patient-centred psychological intervention will address needs and preferences of people with MS. The results of the present study will provide data for further development of the intervention and will lead to a big scale evaluation study.

"Preparing them for the profession": An interpretative phenomenological analysis of anatomy educators coping with complexity in the United Kingdom curriculum.

Efforts to integrate the basic sciences into the ever-changing curriculum are a trending area of research in health professions education. Low-stakes, high-frequency assessment methods such as the progress test are now widely implemented in the United Kingdom and Northern Ireland as a means of furthering curricular integration toward contemporary goals of competency and professional identity formation. The anatomy educator's experience vis-à-vis these curricular changes is not well understood. This study aimed to explore how anatomy educators make sense of the shifting demands of their role. The interviews were semi-structured, particularly concerned with the phenomenon of teachers adapting to the complexity of their learning environment. The study used interpretative phenomenological analysis (IPA) to focus on the lived experiences of participants coping with the phenomena in question: how do anatomy educators make sense of the learning environment in the United Kingdom? Interviews were transcribed verbatim and interpreted inductively, identifying four key themes: confidence through connectedness, variations in appraisals of curricular integration, managing expectations to perform in paradoxical situations, and the emergence of innovative teaching. Results point to the learning environment as a complex system and highlight the importance of feeling support from and connection to colleagues, enabling individual educators to develop confidence, meet the top-down demands of changing curricula, and experience personal identity development and uncertainty tolerance within their role. This IPA study offers insight into the lived experiences of anatomy educators whose experiential interpretations of a complex and changing curriculum can uniquely inform stakeholders in health professions education.

Portraying improvement in the management of chronic pain: A multi-modal longitudinal interpretative phenomenological analysis study.

Chronic pain is a common, profoundly disabling and complex condition whose effects on identity may explain the distress experienced by those affected by it. This paper concerns a study exploring how the relationship with pain and sense of self evolved following participation in a pain management program (PMP). Participants were interviewed at three timepoints: before attending a PMP, 1 month after the PMP and 6 months after the PMP. To facilitate a deep experiential description of pain and its effects, interviews were guided by participant-generated drawings of pain and Self. Interviews and drawings were analyzed longitudinally using interpretative phenomenological analysis. The evolving experience of participants was outlined through different trajectory types. Here we describe the upward and positive trajectory of three female participants who were able to regain control over their lives. From a state of psychological stress where pain was represented as an aggressive and oppressive presence, participants' drawings, their narratives and indeed their lives, changed for the best. Pain stopped being the main feature, they were able to integrate it into their lives, make important changes and find a new balance. The results demonstrate the idiosyncratic nature of chronic pain and offer a nuanced account of its links to the lifeworld of those living with it.

'Put the illness in a box': a longitudinal interpretative phenomenological analysis of changes in a sufferer's pictorial representations of pain following participation in a pain management programme.

Combining participant drawings with interviews can stimulate deep reflection and allow the inexpressible to be expressed. This case study uses visual methods to illustrate the 9-month self-management journey of a female chronic pain sufferer. The participant drew a picture of her pain at each of three interviews, and the drawings were used to discuss the changing impact pain was having on her life. Drawings and transcripts were jointly analysed longitudinally using interpretative phenomenological analysis, revealing how, as control is regained, a sufferer's relationship with their chronic pain can visibly change and how the drawings, when reviewed retrospectively, enable insight and ownership of progress.

'You have to die first': Exploring the thoughts and feelings on organ donation of British women who have not signed up to be donors.

Four White British women who had not signed up to be organ donors were interviewed in depth to investigate their feelings on organ donation. Transcripts were analysed using Interpretative Phenomenological Analysis to reveal how the ability to detach from the body affects the acceptance of organ donation, how organ donation can trigger difficult thoughts and how the family can be used to explain not having signed up. The findings confirm previous empirical evidence but also offer original insight on the discrepancy between attitudes and behaviours, how fears can inhibit action and the importance of communicating organ donation wishes to family.