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Authors: Amberly Brigden, Ali Heawood, Emma C. Anderson, Richard Morris, Esther Crawley

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Background: Paediatric chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) is characterised by persistent, disabling fatigue. Health services see patients below the age of 12. This age group experience high levels of disability, with low levels of school attendance, high levels of fatigue, anxiety, functional disability and pain. CFS/ME interventions have been developed for adolescents, but the developmental needs of younger children suggest treatment should be tailored to this age group. Little is known about how intervention should be delivered to this age group, and further work is needed to explore this. Qualitative research aids patient-centered design of health intervention. Methods: Five to 11-year-olds and their parents were recruited from a specialist CFS/ME service. Semi-structured interviews explored the families’ experience of the condition and perspectives on treatment. Interactive and arts-based methods were used. Interviews were audio-recorded, transcribed and analysed thematically. Qualitative Results: 14 parents and 7 children were interviewed. Early analysis of the interviews revealed the importance of the social-ecological setting of the child, which led to themes being developed in the context of Systems Theory. Theme one relates to the level of the child, theme two the family system, theme three the organisational and societal systems, and theme four cuts-across all levels. Theme1: The child’s capacity to describe, understand and manage their condition. Younger children struggled to describe their internal experiences, such as physical symptoms. Parents felt younger children did not understand some concepts of CFS/ME and did not have the capabilities to monitor and self-regulate their behaviour, as required by treatment. A spectrum of abilities was described; older children (10-11-year-olds) were more involved in clinical sessions and had more responsibility for self-management. Theme2: Parents’ responsibility for managing their child’s condition. Parents took responsibility for regulating their child’s behaviour in accordance with the treatment programme. They structured their child’s environment, gave direct instructions to their child, and communicated the needs of their child to others involved in care. Parents wanted their child to experience a 'normal' childhood and took steps to shield their child from medicalization, including diagnostic labels and clinical discussions. Theme3: Parental isolation and the role of organisational and societal systems. Parents felt unsupported in their role of managing the condition and felt negative responses from primary care health services and schools were underpinned by a lack of awareness and knowledge about CFS/ME in younger children. This sometimes led to a protracted time to diagnosis. Parents felt that schools have the potential important role in managing the child’s condition. Theme4: Complexity and uncertainty. Many parents valued specialist treatment (which included activity management, physiotherapy, sleep management, dietary advice, medical management and psychological support), but felt it needed to account for the complexity of the condition in younger children. Some parents expressed uncertainty about the diagnosis and the treatment programme. Conclusions: Interventions for younger children need to consider the 'systems' (family, organisational and societal) involved in the child’s care. Future research will include interviews with clinicians and schools supporting younger children with CFS/ME.

Keywords: chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME), pediatric, qualitative, treatment

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Authors: Siddhant Yadav, Rylea Ranum, Hannah Alberts, Abdul Kalaiger, Brent Bauer, Ryan Hurt, Ann Vincent, Loren Toussaint, Sanjeev Nanda

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Background and significance: Fibromyalgia (FM) is a chronic pain disorder also characterized by chronic fatigue, morning stiffness, sleep, and cognitive symptoms, psychological disturbances (anxiety, depression), and is comorbid with multiple medical and psychiatric conditions. It has an incidence of 2-4% in the general population and is reported more commonly in women. Oxidative stress and inflammation are thought to contribute to pain in patients with FM, and the adoption of an antioxidant/anti-inflammatory diet has been suggested as a modality to alleviate symptoms. The aim of this systematic review was to evaluate the efficacy of specialized diets (ketogenic, gluten free, Mediterranean, and low carbohydrate) in improving FM symptoms. Methodology: A comprehensive search of the following databases from inception to July 15th, 2021, was conducted: Ovid MEDLINE and Epub ahead of print, in-process and other non-indexed citations and daily, Ovid Embase, Ovid EBM reviews, Cochrane central register of controlled trials, EBSCO host CINAHL with full text, Elsevier Scopus, website and citation index, web of science emerging sources citation and clinicaltrials.gov. We included randomized controlled trials, non-randomized experimental studies, cross-sectional studies, cohort studies, case series, and case reports in adults with fibromyalgia. The risk of bias was assessed with the Agency for Health Care Research and Quality designed, specific recommended criteria (AHRQ). Results: Thirteen studies were eligible for inclusion. This included a total of 761 participants. Twelve out of the 13 studies reported improvement in widespread body pain, joint stiffness, sleeping pattern, mood, and gastrointestinal symptoms, and one study reported no changes in symptomatology in patients with FM on specialized diets. None of the studies showed the worsening of symptoms associated with a specific diet. Most of the patient population was female, with the mean age at which fibromyalgia was diagnosed being 48.12 years. Improvement in symptoms was reported by the patient's adhering to a gluten-free diet, raw vegan diet, tryptophan- and magnesium-enriched Mediterranean diet, aspartame- and msg- elimination diet, and specifically a Khorasan wheat diet. Risk of bias assessment noted that 6 studies had a low risk of bias (5 clinical trials and 1 case series), four studies had a moderate risk of bias, and 3 had a high risk of bias. In many of the studies, the allocation of treatment (diets) was not adequately concealed, and the researchers did not rule out any potential impact from a concurrent intervention or an unintended exposure that might have biased the results. On the other hand, there was a low risk of attrition bias in all the trials; all were conducted with an intention-to-treat, and the inclusion/exclusion criteria, exposures/interventions, and primary outcomes were valid, reliable, and implemented consistently across all study participants. Concluding statement: Patients with fibromyalgia who followed specialized diets experienced a variable degree of improvement in their widespread body pain. Improvement was also seen in stiffness, fatigue, moods, sleeping patterns, and gastrointestinal symptoms. Additionally, the majority of the patients also reported improvement in overall quality of life.

Keywords: fibromyalgia, specialized diet, vegan, gluten free, Mediterranean, systematic review

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Authors: Adriana De Serio, Adrian Korek

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Aims: This experiential research work presents a Group-MusicTherapy-Theatre-Plan (MusThePlan) the authors have carried out to support the actors. The MusicTherapy gives rise to individual psychophysical feedback and influences the emotional centres of the brain and the subconsciousness. Therefore, the authors underline the effectiveness of the preventive, educational, and training goals of the MusThePlan to lead theatre students and actors to deal with anxiety and to overcome psychophysical weaknesses, shyness, emotional stress in stage performances, to increase flexibility, awareness of one's identity and resources for a positive self-development and psychophysical health, to develop and strengthen social bonds, increasing a network of subjects working for social inclusion and reduction of stigma. Materials-Methods: Thirty students from the University Theatre Faculty participated in weekly music therapy sessions for two months; each session lasted 120 minutes. MusThePlan: Each session began with a free group rhythmic-sonorous-musical-production by body-percussion, voice-canto, instruments, to stimulate communication. Then, a synchronized-structured bodily-rhythmic-sonorous-musical production also involved acting, dances, movements of hands and arms, hearing, and more sensorial perceptions and speech to balance motor skills and the muscular tone. Each student could be the director-leader of the group indicating a story to inspire the group's musical production. The third step involved the students in rhythmic speech and singing drills and in vocal exercises focusing on the musical pitch to improve the intonation and on the diction to improve the articulation and lead up it to an increased intelligibility. At the end of each musictherapy session and of the two months, the Musictherapy Assessment Document was drawn up by analysis of observation protocols and two Indices by the authors: Patient-Environment-Music-Index (time to - tn) to estimate the behavior evolution, Somatic Pattern Index to monitor subject’s eye and mouth and limb motility, perspiration, before, during and after musictherapy sessions. Results: After the first month, the students (non musicians) learned to play percussion instruments and formed a musical band that played classical/modern music on the percussion instruments with the musictherapist/pianist/conductor in a public concert. At the end of the second month, the students performed a public musical theatre show, acting, dancing, singing, and playing percussion instruments. The students highlighted the importance of the playful aspects of the group musical production in order to achieve emotional contact and harmony within the group. The students said they had improved kinetic and vocal and all the skills useful for acting activity and the nourishment of the bodily and emotional balance. Conclusions: The MusThePlan makes use of some specific MusicTherapy methodological models, techniques, and strategies useful for the actors. The MusThePlan can destroy the individual "mask" and can be useful when the verbal language is unable to undermine the defense mechanisms of the subject. The MusThePlan improves actor’s psychophysical activation, motivation, gratification, knowledge of one's own possibilities, and the quality of life. Therefore, the MusThePlan could be useful to carry out targeted interventions for the actors with characteristics of repeatability, objectivity, and predictability of results. Furthermore, it would be useful to plan a University course/master in “MusicTherapy for the Theatre”.

Keywords: musictherapy, sonorous-musical energy, quality of life, theatre

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Authors: Jerome Dalphinis, Vishal Patel

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The Bailiwick of Jersey is an island British crown dependency situated off the coast of France. Jersey General Hospital’s emergency department sees approximately 40,000 patients a year. It’s outside the NHS, with secondary care being free at the point of care. Sedation is a continuum which extends from a normal conscious level to being fully unresponsive. Procedural sedation produces a minimally depressed level of consciousness in which the patient retains the ability to maintain an airway, and they respond appropriately to physical stimulation. The goals of it are to improve patient comfort and tolerance of the procedure and alleviate associated anxiety. Indications can be stratified by acuity, emergency (cardioversion for life-threatening dysrhythmia), and urgency (joint reduction). In the emergency department, this is most often achieved using a combination of opioids and benzodiazepines. Some departments also use ketamine to produce dissociative sedation, a cataleptic state of profound analgesia and amnesia. The response to pharmacological agents is highly individual, and the drugs used occasionally have unpredictable pharmacokinetics and pharmacodynamics, which can always result in progression between levels of sedation irrespective of the intention. Therefore, practitioners must be able to ‘rescue’ patients from deeper sedation. These practitioners need to be senior clinicians with advanced airway skills (AAS) training. It can lead to adverse effects such as dangerous hypoxia and unintended loss of consciousness if incorrectly undertaken; studies by the National Confidential Enquiry into Patient Outcome and Death (NCEPOD) have reported avoidable deaths. The Royal College of Emergency Medicine, UK (RCEM) released an updated ‘Safe Sedation of Adults in the Emergency Department’ guidance in 2017 detailing a series of standards for staff competencies, and the required environment and equipment, which are required for each target sedation depth. The emergency department in Jersey undertook audit research in 2018 to assess their current practice. It showed gaps in clinical competency, the need for uniform care, and improved documentation. This spurred the development of a checklist incorporating the above RCEM standards, including contraindication for procedural sedation and difficult airway assessment. This was approved following discussion with the relevant heads of departments and the patient safety directorates. Following this, a second audit research was carried out in 2019 with 17 completed checklists (11 relocation of joints, 6 cardioversions). Data was obtained from looking at the controlled resuscitation drugs book containing documented use of ketamine, alfentanil, and fentanyl. TrakCare, which is the patient electronic record system, was then referenced to obtain further information. The results showed dramatic improvement compared to 2018, and they have been subdivided into six categories; pre-procedure assessment recording of significant medical history and ASA grade (2 fold increase), informed consent (100% documentation), pre-oxygenation (88%), staff (90% were AAS practitioners) and monitoring (92% use of non-invasive blood pressure, pulse oximetry, capnography, and cardiac rhythm monitoring) during procedure, and discharge instructions including the documented return of normal vitals and consciousness (82%). This procedural sedation checklist is a safe intervention that identifies pertinent information about the patient and provides a standardised checklist for the delivery of gold standard of care.

Keywords: advanced airway skills, checklist, procedural sedation, resuscitation

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Authors: Farhana Alam Bhuiyan, Saad Khan, Tanveer Hassan, Jhalok Ranjon Talukder, Syeda Farjana Ahmed, Rahil Roodsaz, Els Rommes, Sabina Faiz Rashid

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Breaking the shame’ is a 3 year (2015-2018) qualitative implementation research project which investigates several aspects of sexual and reproductive health and rights (SRHR) issues for adolescents living in Bangladesh. Scope of learning SRHR issues for adolescents is limited here due to cultural and religious taboos. This study adds to the ongoing discussions around adolescent’s SRHR needs and aims to, 1) understand the overall SRHR needs of urban and rural unmarried female and male adolescents and the challenges they face, 2) explore existing gaps in the content of SRHR curriculum and 3) finally, addresses some critical knowledge gaps by developing and implementing innovative SRHR educational materials. 18 in-depth interviews (IDIs) and 10 focus-group discussions (FGDs) with boys and 21 IDIs and 14 FGDs with girls of ages 13-19, from both urban and rural setting took place. Curriculum materials from two leading organizations, Unite for Body Rights (UBR) Alliance Bangladesh and BRAC Adolescent Development Program (ADP) were also reviewed, with discussions with 12 key program staff. This paper critically analyses the relevance of some of the SRHR topics that are covered, the challenges with existing pedagogic approaches and key sexuality issues that are not covered in the content, but are important for adolescents. Adolescents asked for content and guidance on a number of topics which remain missing from the core curriculum, such as emotional coping mechanisms particularly in relationships, bullying, impact of exposure to porn, and sexual performance anxiety. Other core areas of concern were effects of masturbation, condom use, sexual desire and orientation, which are mentioned in the content, but never discussed properly, resulting in confusion. Due to lack of open discussion around sexuality, porn becomes a source of information for the adolescents. For these reasons, several myths and misconceptions regarding SRHR issues like body, sexuality, agency, and gender roles still persist. The pedagogical approach is very didactic, and teachers felt uncomfortable to have discussions on certain SRHR topics due to cultural taboos or shame and stigma. Certain topics are favored- such as family planning, menstruation- and presented with an emphasis on biology and risk. Rigid formal teaching style, hierarchical power relations between students and most teachers discourage questions and frank conversations. Pedagogy approaches within classrooms play a critical role in the sharing of knowledge. The paper also describes the pilot approaches to implementing new content in SRHR curriculum. After a review of findings, three areas were selected as critically important, 1) myths and misconceptions 2) emotional management challenges, and 3) how to use condom, that have come up from adolescents. Technology centric educational materials such as web page based information platform and you tube videos are opted for which allow adolescents to bypass gatekeepers and learn facts and information from a legitimate educational site. In the era of social media, when information is always a click away, adolescents need sources that are reliable and not overwhelming. The research aims to ensure that adolescents learn and apply knowledge effectively, through creating the new materials and making it accessible to adolescents.

Keywords: adolescents, Bangladesh, media, sexuality education, unmet needs

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Authors: V. Howard, R. Maguire, S. Corrigan

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Background: Type 1 Diabetes (T1D) is a chronic autoimmune disease, typically diagnosed in childhood. T1D puts an enormous strain on families; controlling blood-glucose in children is difficult and the consequences of poor control for patient health are significant. Successful illness management and better health outcomes can be dependent on quality of caregiving. On diagnosis, parent-caregivers face a steep learning curve as T1D care requires a significant level of knowledge to inform complex decision making throughout the day. The majority of illness management is carried out in the home setting, independent of clinical health providers. Parent-caregivers vary in their level of knowledge and their level of engagement in applying this knowledge in the practice of illness management. Enabling researchers to quantify these aspects of the caregiver experience is key to identifying targets for psychosocial support interventions, which are desirable for reducing stress and anxiety in this highly burdened cohort, and supporting better health outcomes in children. Currently, there are limited tools available that are designed to capture this information. Where tools do exist, they are not comprehensive and do not adequately capture the lived experience. Objectives: Development of quantitative tools, informed by lived experience, to enable researchers gather data on parent-caregiver knowledge and engagement, which accurately represents the experience/cohort and enables exploration of questions that are of real-world value to the cohort themselves. Methods: This research employed an engaged approach to address the problem of quantifying two key aspects of caregiver diabetes management: Knowledge and engagement. The research process was multi-staged and iterative. Stage 1: Working from a constructivist standpoint, literature was reviewed to identify relevant questionnaires, scales and single-item measures of T1D caregiver knowledge and engagement, and harvest candidate questionnaire items. Stage 2: Aggregated findings from the review were circulated among a PPI (patient and public involvement) expert panel of caregivers (n=6), for discussion and feedback. Stage 3: In collaboration with the expert panel, data were interpreted through the lens of lived experience to create a long-list of candidate items for novel questionnaires. Items were categorized as either ‘knowledge’ or ‘engagement’. Stage 4: A Delphi-method process (iterative surveys) was used to prioritize question items and generate novel questions that further captured the lived experience. Stage 5: Both questionnaires were piloted to refine wording of text to increase accessibility and limit socially desirable responding. Stage 6: Tools were piloted using an online survey that was deployed using an online peer-support group for caregivers for Juveniles with T1D. Ongoing Research: 123 parent-caregivers completed the survey. Data analysis is ongoing to establish face and content validity qualitatively and through exploratory factor analysis. Reliability will be established using an alternative-form method and Cronbach’s alpha will assess internal consistency. Work will be completed by early 2024. Conclusion: These tools will enable researchers to gain deeper insights into caregiving practices among parents of juveniles with T1D. Development was driven by lived experience, illustrating the value of engaged research at all levels of the research process.

Keywords: caregiving, engaged research, juvenile type 1 diabetes, quantified engagement and knowledge

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Authors: Adriana De Serio, Donato Forenza

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Aims. In this experimental research the Authors present the methodological plan “Musictherapy and Gardentherapy” that they created interconnected with the garden landscape ecosystems and aimed at PsychoPhysical Disability (MusGarPPhyD). In the context of the environmental education aimed at spreading the landscape culture and its values, it’s necessary to develop a solid perception of the environment sustainability to implement a multidimensional approach that pays attention to the conservation and enhancement of gardens and natural environments. The result is an improvement in the life quality also in compliance with the objectives of the European Agenda 2030. The MusGarPPhyD can help professionals such as musictherapists and environmental and landscape researchers strengthen subjects' motivation to learn to deal with the psychophysical discomfort associated with disability and to cope with the distress and the psychological fragility and the loneliness and the social seclusion and to promote productive social relationships. Materials and Methods. The MusGarPPhyD was implemented in multiple spaces. The musictherapy treatments took place first inside residential therapeutic centres and then in the garden landscape ecosystem. Patients: twenty, set in two groups. Weekly-sessions (50’) for three months. Methodological phases: - Phase P1. MusicTherapy treatments for each group in the indoor spaces. - Phase P2. MusicTherapy sessions inside the gardens. After each Phase, P1 and P2: - a Questionnaire for each patient (ten items / liking-indices) was administrated at t0 time, during the treatment and at tn time at the end of the treatment. - Monitoring of patients' behavioral responses through assessment scales, matrix, table and graph system. MusicTherapy methodology: pazient Sonorous-Musical Anamnesis, Musictherapy Assessment Document, Observation Protocols, Bodily-Environmental-Rhythmical-Sonorous-Vocal-Energy production first indoors and then outside, sonorous-musical instruments and edible instruments made by the Author/musictherapist with some foods; Administration of Patient-Environment-Music Index at time to and tn, to estimate the patient’s behavior evolution, Musictherapeutic Advancement Index. Results. The MusGarPPhyD can strengthen the individual sense of identity and improve the psychophysical skills and the resilience to face and to overcome the difficulties caused by the congenital /acquired disability. The multi-sensory perceptions deriving from contact with the plants in the gardens improve the psychological well-being and regulate the physiological parameters such as blood pressure, cardiac and respiratory rhythm, reducing the cholesterol levels. The secretions of the peptide hormones endorphins and the endogenous opioids enkephalins increase and bring a state of patient’s tranquillity and a better mood. The subjects showed a preference for musictherapy treatments within a setting made up of gardens and peculiar landscape systems. This resulted in greater health benefits. Conclusions. The MusGarPPhyD contributes to reduce psychophysical tensions, anxiety, depression and stress, facilitating the connections between the cerebral hemispheres, thus also improving intellectual performances, self-confidence, motor skills and social interactions. Therefore it is necessary to design hospitals, rehabilitation centers, nursing homes, surrounded by gardens. Ecosystems of natural and urban parks and gardens create fascinating skyline and mosaics of landscapes rich in beauty and biodiversity. The MusGarPPhyD is useful for the health management promoting patient’s psychophysical activation, better mood/affective-tone and relastionships and contributing significantly to improving the life quality.

Keywords: musictherapy, gardentherapy, disability, life quality

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Authors: Alba Prats-Bisbe, Jaume López-Carballo, David Leno-Colorado, Alberto García Molina, Alicia Romero Marquez, Elena Hernández Pena, Eloy Opisso Salleras, Raimon Jané Campos

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Neurological disorders are a leading cause of disability and premature mortality worldwide. Neurorehabilitation (NRHB) is a clinical process aimed at reducing functional impairment, promoting societal participation, and improving the quality of life for affected individuals. Virtual reality (VR) technology is emerging as a promising NRHB support tool. Its immersive nature fosters a strong sense of agency and embodiment, motivating patients to engage in meaningful tasks and increasing adherence to therapy. However, the clinical benefits of VR interventions are challenging to determine due to the high heterogeneity among health applications. This study explores a stepwise development approach for creating VR-based tools to assist individuals with neurological disorders in medical practice, aiming to enhance reproducibility, facilitate comparison, and promote the generalization of findings. Building on previous research, the step-by-step methodology encompasses: Needs Identification– conducting cross-disciplinary meetings to brainstorm problems, solutions, and address barriers. Intervention Definition– target population, set goals, and conceptualize the VR system (equipment and environments). Material Selection and Placement– choose appropriate hardware and software, place the device within the hospital setting, and test equipment. Co-design– collaboratively create VR environments, user interfaces, and data management strategies. Prototyping– develop VR prototypes, conduct user testing, and make iterative redesigns. Usability and Feasibility Assessment– design protocols and conduct trials with stakeholders in the hospital setting. Efficacy Assessment– conduct clinical trials to evaluate outcomes and long-term effects. Cost-Effectiveness Validation– assess reproducibility, sustainability, and balance between costs and benefits. NRHB is complex due to the multifaceted needs of patients and the interdisciplinary healthcare architecture. VR has the potential to support various applications, such as motor skill training, cognitive tasks, pain management, unilateral spatial neglect (diagnosis and treatment), mirror therapy, and ecologically valid activities of daily living. Following this methodology was crucial for launching a VR-based system in a real hospital environment. Collaboration with neuropsychologists lead to develop A) a VR-based tool for cognitive rehabilitation in patients with acquired brain injury (ABI). The system comprises a head-mounted display (HTC Vive Pro Eye) and 7 tasks targeting attention, memory, and executive functions. A desktop application facilitates session configuration, while database records in-game variables. The VR tool's usability and feasibility were demonstrated in proof-of-concept trials with 20 patients, and effectiveness is being tested through a clinical protocol with 12 patients completing 24-session treatment. Another case involved collaboration with nurses and paediatric physiatrists to create B) a VR-based distraction tool during invasive techniques. The goal is to alleviate pain and anxiety associated with botulinum toxin (BTX) injections, blood tests, or intravenous placements. An all-in-one headset (HTC Vive Focus 3) deploys 360º videos to improve the experience for paediatric patients and their families. This study presents a framework for developing clinically relevant and technologically feasible VR-based support tools for hospital settings. Despite differences in patient type, intervention purpose, and VR system, the methodology demonstrates usability, viability, reproducibility and preliminary clinical benefits. It highlights the importance approach centred on clinician and patient needs for any aspect of NRHB within a real hospital setting.

Keywords: neurological disorders, neurorehabilitation, stepwise development approach, virtual reality

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