Public perspectives on inequality and mental health: A peer research study.

INTRODUCTION: Associations between structural inequalities and health are well established. However, there is limited work examining this link in relation to mental health, or that centres public perspectives. This study explores people's experience and sense-making of inequality in their daily lives, with particular consideration of impacts on mental health. METHODS: We conducted a peer research study. Participants had to live in one of two London Boroughs and have an interest in inequalities and mental health. Using social media, newsletters, local organisations and our peer researchers' contacts, we recruited 30 participants who took photos representing their experience of inequality and discussed them during semi-structured interviews. Data were analysed using reflexive thematic analysis. RESULTS: Three themes were identified in this study: (1) inequalities are unjust, multilayered and intertwined with mental health. Accounts demonstrated a deep understanding of inequalities and their link to mental health outcomes, describing inequalities as 'suffering' and 'not good for anyone'. Financial, housing, immigration and healthcare problems exacerbated poor mental health, with racism, gender-based violence and job loss also contributing factors for both poor mental health and experiences of inequality; (2) inequalities exclude and have far-reaching mental health consequences, impacting personal sense of belonging and perceived societal value and (3) moving forwards-addressing long-standing inequality and poor public mental health necessitated coping and resilience strategies that are often unacknowledged and undervalued by support systems. CONCLUSION: Lived experience expertise was central in this study, creating an innovative methodological approach. To improve public mental health, we must address the everyday, painful structural inequalities experienced by many as commonplace and unfair. New policies and strategies must be found that involve communities, redistributing resources and power, building on a collective knowledge base, to coproduce actions combatting inequalities and improving population mental health. PATIENT OR PUBLIC CONTRIBUTION: This study was peer-led, designed and carried out by researchers who had experiences of poor mental health. Six authors of the paper worked as peer researchers on this study.

A myth-busting mental health tour of the National Gallery in London: Facilitators and challenges to its development and evaluation.

This paper describes a mental health-awareness audio tour of the National Gallery, London, and evaluates the development and implementation of the tour. This smartphone-based audio tour was co-produced by Gallery staff, young people with lived experience of mental health issues, academics, and technologists. Interviews (N = 22) were conducted with developers and data-collectors (who had gathered feedback from Gallery visitors who undertook the tour) with responses analysed thematically. Participants highlighted the value of the arts to raise awareness about mental health, and the importance of teamwork, lived experience, and co-production, but also raised the challenges of integrating low-budget projects into large-scale venues.

Impact on public attitudes of a mental health audio tour of the National Gallery in London.

AIM: The arts have the potential to increase public awareness about mental health and reduce stigma. However, arts-based projects to raise awareness have been small-scale. In this study, a mental health-awareness audio tour of The National Gallery in London was co-produced and narrated by young adults with relevant lived experience. The study investigated the acceptability of the tour to the public and evaluated its impact on public attitudes about mental health. METHODS: Participants were Gallery visitors over four consecutive days. The tour led visitors on 10 stops through the Gallery. Each stop focused on artworks and Gallery spaces, challenged common myths about mental health, and invited visitors to consider their personal views. Participants completed measures of mood and attitudes about mental health pre- and post-tour and provided narrative feedback. RESULTS: Pre-tour, participants (N = 213) reported high levels of happiness, compassion towards people with mental health conditions, comfort talking about mental health, and positive attitudes about mental health. Post-tour, participants (N = 111) reported significant increases in happiness, comfort, and positive attitudes. In feedback, participants (N = 85) reported that strengths of the tour were the music, inclusion of lived experience, art and mental health links, and reported that the tour was informative, innovative, and improved mental health awareness. CONCLUSIONS: The tour increased positive attitudes, despite positive baseline attitudes, indicating the feasibility of arts-based interventions in major venues to reduce stigma. Sampling limitations and participant retention suggest that arts-based projects to raise awareness should target more diverse audiences and consider data collection strategies in large venues.

The Early Youth Engagement in first episode psychosis (EYE-2) study: pragmatic cluster randomised controlled trial of implementation, effectiveness and cost-effectiveness of a team-based motivational engagement intervention to improve engagement.

BACKGROUND: Early Intervention in Psychosis (EIP) services improve health outcomes for young people with psychosis in the medium-long term, but 25% of young people disengage in the first 12 months with costs to their mental health, families, society and the NHS. This study will evaluate the effectiveness, cost-effectiveness and implementation of a team-based motivational Early Youth Engagement (EYE-2) intervention. METHOD: The study design is a cluster randomised controlled trial (RCT) with economic evaluation, comparing the EYE-2 intervention + standardised EIP service to standardised EIP service alone, with randomisation at the team level. A process evaluation will evaluate the delivery of the intervention qualitatively and quantitatively across contexts. The setting is 20 EIP teams in 5 sites: Manchester, South London, East Anglia, Thames Valley and Hampshire. Participants are young people (14-35 years) with first episode psychosis, and EIP staff. The intervention is the team-based motivational engagement (EYE-2) intervention, delivered alongside standardised EIP services, and supported by additional training, website, booklets and social groups. The comparator is the standardised EIP service. Both interventions are delivered by EIP clinicians. The primary outcome is time to disengagement (time in days from date of allocation to care coordinator to date of last contact following refusal to engage with EIP service, or lack of response to EIP contact for a consecutive 3-month period). Secondary outcomes include mental and physical health, deaths, social and occupational function, recovery, satisfaction and service use at 6, 12, 18 and 24 months. A 12-month within-trial economic evaluation will investigate cost-effectiveness from a societal perspective and from an NHS perspective. DISCUSSION: The trial will provide the first test of an engagement intervention in standardised care, with the potential for significant impact on the mental health and wellbeing of young people and their families, and economic benefits for services. The intervention will be highly scalable, supported by the toolkit including manuals, commissioning guide, training and resources, adapted to meet the needs of the diverse EIP population, and based on an in-depth process evaluation. TRIAL REGISTRATION: ISRCTN 51629746 prospectively registered 7th May 2019. Date assigned 10th May 2019.

The medium can influence the message: Print-based versus digital reading influences how people process different types of written information.

While electronic reading devices are extremely popular, research is equivocal regarding their benefits for outcomes such as reader comprehension. Integrating literatures on reading medium comparisons and matching effects in persuasion, this research tested whether comprehension is maximized when the content of the material (e.g., whether it is traditional vs. modern) matches the medium (e.g., reading from a traditional book vs. digital e-reader). In Study 1, participants read a traditional- or modern-themed short story from either a book or an e-reader. Story comprehension was greater when participants read from the printed medium compared to the e-reader, an effect that was marginally moderated by story content, consistent with a matching effect. In Study 2, participants read a persuasive message that emphasized either a traditional versus modern solution to improving health in either a magazine format or on an iPad. Message comprehension was marginally greater among participants who read their message in a printed format. Participants' interest in weight loss showed evidence of a matching effect - participants were more interested in losing weight when a modern solution to obesity article was presented on an iPad compared to a printed format. The results are applied to the study of reading and attitude change.

Co-creating a knowledge base in the "22q11.2 deletion syndrome" community.

22q11.2 DS is characterised by its variability, rarity and variety of features ranging from congenital heart conditions to psychiatric and behavioural issues. As a result, health information-seeking behaviour is different from other more common conditions. An exploratory study was carried out to understand how parents access information and support, and how that information is shared. Qualitative interviews were carried out with families and support group representatives, and thematic analysis was applied. Four main themes emerged from our findings: perceptions of clinical expertise, parent empowerment, support group activities and community building via an Internet platform. Our thematic analysis enabled the construction of a possible model of information-seeking behaviour in parents and carers of children with 22q11.2 DS. We discuss the model and how the understanding of how information is shared and gathered can aid in clinical practice.

Motivations and experiences of volunteers and patients in mental health befriending: a thematic analysis.

BACKGROUND: Volunteers frequently participate in befriending schemes with people with mental illness. This study aimed to explore the motivations and experiences of volunteer befrienders engaging in these schemes in addition to the experiences of befriending recipients. METHODS: Semi-structured interviews were conducted with 38 volunteers and 23 befriending recipients, across 12 mental health befriending schemes in the UK, and analysed using Thematic Analysis. Volunteers highlighted their motivations for wanting to befriend. Individuals discussed their experiences, including the benefits and any challenges. RESULTS: Analysis of interviews revealed the motivations for individuals to volunteer in mental health care, the experiences of both volunteers and recipients of befriending, as well as how complex the role of befriender is. The three overarching themes were (1) Personal growth & altruism as motivations for volunteering, (2) Impact of "doing things" versus "being there" and (3) Negotiating between professional role and friendship. CONCLUSIONS: A number of personal and altruistic factors motivate individuals to volunteer in mental health care. The experiences of both volunteers and befriendees convey important factors affecting these relationships. In particular, the nuance of the befriending role and the ways in which it can impact the lives of recipients. Indeed, such factors need to be considered when formulating these befriending schemes.

Pathogenic copy number variants and SCN1A mutations in patients with intellectual disability and childhood-onset epilepsy.

BACKGROUND: Copy number variants (CNVs) have been linked to neurodevelopmental disorders such as intellectual disability (ID), autism, epilepsy and psychiatric disease. There are few studies of CNVs in patients with both ID and epilepsy. METHODS: We evaluated the range of rare CNVs found in 80 Welsh patients with ID or developmental delay (DD), and childhood-onset epilepsy. We performed molecular cytogenetic testing by single nucleotide polymorphism array or microarray-based comparative genome hybridisation. RESULTS: 8.8 % (7/80) of the patients had at least one rare CNVs that was considered to be pathogenic or likely pathogenic. The CNVs involved known disease genes (EHMT1, MBD5 and SCN1A) and imbalances in genomic regions associated with neurodevelopmental disorders (16p11.2, 16p13.11 and 2q13). Prompted by the observation of two deletions disrupting SCN1A we undertook further testing of this gene in selected patients. This led to the identification of four pathogenic SCN1A mutations in our cohort. CONCLUSIONS: We identified five rare de novo deletions and confirmed the clinical utility of array analysis in patients with ID/DD and childhood-onset epilepsy. This report adds to our clinical understanding of these rare genomic disorders and highlights SCN1A mutations as a cause of ID and epilepsy, which can easily be overlooked in adults.

To befriend or to be a friend: a systematic review of the meaning and practice of "befriending" in mental health care.

BACKGROUND: "Befriending" involves pairing a volunteer with a person with a mental illness in the community to spend social time together. The term can have very different connotations. AIMS: To review how "befriending" was used in mental health care. METHOD: A systematic review with a narrative synthesis was used to explore how befriending is conceptualised and practiced. We extracted descriptions of "befriending" from efficacy studies, befriending manuals, and reports from the gray literature and explored the practical implications of the different concepts of "befriending". RESULTS: The lay understanding of the phrase "to befriend" is "to be a friend to". This contrasts to codes of practice used by befriending organisations, which describes a relationship distinct from friendship. The literature (12 relevant papers total) suggests a spectrum of practices; at one end is a relationship that is professional or therapeutic in nature, while at the other end, the relationship is conceptualised as much closer to a naturally occurring friendship. CONCLUSION: The different concepts determine distinct practices, which may lead to confusion when the term befriending is used. The term "befriending", may be understood to concern friendship, which may be inappropriate where the organisation offers a professional style relationship.

A White Paper on the medical and social needs of people with epilepsy and intellectual disability: the Task Force on Intellectual Disabilities and Epilepsy of the International League Against Epilepsy.

This White Paper builds on the publication of the International League Against Epilepsy (ILAE) and International Bureau for Epilepsy (IBE) report "Listening for a change-medical and social needs of people with intellectual disability who have epilepsy" (Listening for a change the medical and social needs of people with epilepsy and intellectual disability, ILAE, 2013). The Paper presents an overview of the recommendations of the report, which aim to improve the health and social care of this important population of people with epilepsy worldwide. Actions in four domains are indicated: (1) the development of standards and initiatives that would enhance diagnosis, pathways to investigation, and treatment; (2) the development of guidelines for treatment, specifically best practice in the management of antiepileptic drugs including rescue medication; (3) the development of standards for primary care, multidisciplinary teamwork, and clinical consultations, with emphasis on the need to enhance communication and improve access to information; and (4) the enhancement of links among different stakeholders including medical services, educational establishments, employment services, organizations providing opportunities for social engagement, and family members. The breadth of needs of this population is a challenge to the epilepsy world, spanning all the professional groupings, care providers, and the research modalities in epilepsy.

Caring for a family member with intellectual disability and epilepsy: practical, social and emotional perspectives.

PURPOSE: To examine the caregiving impact of those who support a family member with intellectual disability and epilepsy. METHODS: An online, qualitative international survey was conducted via the auspices of the International Bureau of Epilepsy with various stakeholders who support individuals who have intellectual disability and epilepsy. Qualitative comments were analyzed from respondents who identified themselves as family members (n=48; 36%) who referred specifically to the impact of supporting a family member with these combined disabilities. RESULTS: Four main domains, which were comprised of ten themes, were derived from the qualitative data using Braun and Clarke's qualitative framework. These domains comprised (1) practical concerns, (2) disrupted family dynamics, (3) emotional burden and (4) positive experiences. In combination these themes illustrate the pervasive impact on family life for those supporting an individual with complex needs. Financial concerns, coordination and responsibility of care, diverted attention from other family members and social isolation all contributed a significant burden of care for family members. Positive aspects were, however, also cited including the closeness of the family unit and a fostering of altruistic behavior. CONCLUSION: The study provides an insight into an under-researched area. The burden of caring for a family member across the lifespan has a largely negative and pervasive impact. Targeted service provision could contribute to an amelioration of the challenges faced by these families.

The Registry Evaluating Functional Outcomes of Resynchronization Management (REFORM): quality of life and psychological functioning in patients receiving cardiac resynchronization therapy.

BACKGROUND: Cardiac resynchronization therapy (CRT) is a treatment for heart failure (HF) that improves cardiac, functional, and quality of life (QoL) outcomes. This study was designed to examine the effect of the addition of CRT (CRTD) to the implantable cardioverter defibrillator (ICD) on psychological functioning. METHODS AND RESULTS: Overall, 99 participants completed batteries before and 9 months after ICD or CRTD implantation in a registry of HF patients receiving device treatment in 3 US centers. Measures included validated indices of mental health (State Trait Anxiety Inventory, Patient Health Questionnaire: Depression) and generic and disease/device-specific QoL (Medical Outcomes Study-Short Form-12, Kansas City Cardiomyopathy Questionnaire, Florida Patient Acceptance Survey, Florida Shock Anxiety Scale). Mixed between-within analyses of covariance were employed to compare device groups on each outcome controlling for cardiac and demographic covariates. Clinically significant anxiety was elevated in both groups at both time points (57% CRTD at baseline, 29% CRTD 9 months, 44% ICD at baseline, 45% ICD 9 months). Clinically significant depressive symptoms were high at baseline (38% CRTD, 31% ICD), but dropped at follow-up (16% CRTD, 7% ICD; P = 0.01). Participants with CRTD had improved mental component and disease-specific QoL following CRT; however, CRTD patients had worse QoL, worse mental component QoL at baseline, and worse device acceptance at 9-month follow-up than patients with ICDs (all P < 0.05). CONCLUSIONS: Evidence of low QoL, psychological functioning, and device acceptance provides the impetus to increase research on well-being of HF patients being implanted with CRTD in research and clinical work.

Treatment of behavioral problems in intellectually disabled adult patients with epilepsy.

Behavioral disorders are common in people with epilepsy and intellectual disability. Although in some genetic disorders behavioral problems are part of the established phenotype, they may also be a manifestation of underlying physical or mental illness, or may be unrecognized seizure activity. In light of this, assessment of behavioral disorders should take into account person factors such as the physical health and mental state of the person and environmental factors such as the quality of their interactions with carers and their living conditions. Video-electroencephalography ( EEG) is recommended where possible. We review potential pharmacologic and behavioral management strategies for behavioral disorders in people with intellectual disability.

Next generation sequencing in the clinical domain: clinical advantages, practical, and ethical challenges.

There has been an academic "gold rush" with researchers mining the deep seams of whole-exome and whole-genome sequencing since 2008. Although undoubtedly a major advance initially for identifying new disease-associated genes for rare monogenetic disorders--more recently, common and complex conditions have been successfully studied using these techniques. With great power comes great responsibility, however, and we must not forget that next generation sequencing produces unique ethical conundrums and validation challenges. We review the progression of published papers using whole-exome sequencing from a clinical and technical viewpoint before then reflecting on the key arguments that need to be fully understood before these tools can become a routine part of clinical practice and we ask what may be the role for the biomedical scientists?

Access to cancer services--do culture and ethnicity make a difference?

This module discusses the diverse cultural needs of people affected by cancer and how those needs can be assessed and met. The UK experience with Black or Minority Ethnic (BME) communities will be used to explore the issues of awareness of and detection of cancer.