Can the P-C-P quality framework be used to understand service quality from the perspective of service users and their significant others accessing specialist community teams for people with learning disabilities? A framework analysis.

The focus of this thesis is the development, implementation and impact of the Active Recovery Triad (ART) model, a care model developed to foster the recovery process of people with serious mental illnesses who are admitted in long-term mental health care. This thesis has three objectives: (1) to describe the collaborative development process and the content of the ART model, (2) to provide insight into the implementation of the ART model in practice, and (3) to investigate the impact of the ART model in practice. Chapter 2 presents the collaborative development process and the key characteristics of the ART model. The ART model combines an active (A) role for professionals, service users and significant others, a focus on recovery (R), and cooperation between service user, significant others and professional in the triad (T). In addition, a model fidelity scale has been developed: the ART monitor. Chapter 3 reports the evaluation of the ART monitor, based on peer-to-peer audits and feedback meetings. The evaluation of the content validity, construct validity and inter-rater reliability provided fruitful input, resulting in a feasible and useful instrument for research purposes and mental health care practice. Chapter 4 provides insight into key factors influencing the implementation process of the ART model, based on group interviews with teams. Eleven themes were identified, related to different phases of implementation, including the start, during the implementation process and striving for sustainable implementation. In Chapter 5 it is shown that compliance to the principles of the ART model is related to recovery-oriented care, measured with the ROPI-R. Although overall ART fidelity is not associated with outcomes regarding recovery or service user satisfaction, particular elements of the ART model are related to meaningful recovery outcomes. Chapter 6 provides insight into the perspectives of service users and significant others on care and support of teams working with the ART model. We found that service users feel motivated, work actively on personal recovery goals and have dreams for the future. Also, they indicated specific conditions for recovery-oriented care and how different dimensions of recovery were addressed in care and support. Furthermore, the social support system, contact with care workers and with other service users were regarded as important. Chapter 7 addresses a general discussion and conclusion. The ART model has introduced a new perspective in long-term mental health care. The collaborative development process ensured that the content of the ART model was based on the perspectives of the triad. It also provided the basis for a national learning network. The research methods created an environment of collaborative learning. In the implementation process it appeared important to pay attention to the commitment and involvement of all stakeholders both in the organization and on a national level, and to develop strategies for sustainability. The ART model has impact on recovery-oriented care and specific elements of the ART model are related to meaningful recovery outcomes. Experiences and views of service users and significant others created a basis for further elaboration and specification of the model.

ObjectiveBehavioural interventions have been shown to reduce sexual behaviours associated with increased risk of sexually transmitted infections in young people (<25 years) and men who have sex with men (MSM)...

Evidence from European and American studies indicates limited referrals of people with learning (intellectual) disabilities to palliative care services. Although professionals' perceptions of their training needs in this area have been studied, the perceptions of people with learning disabilities and family carers are not known. This study aimed to elicit the views of people with learning disabilities, and their family carers concerning palliative care, to inform healthcare professional education and training. A qualitative, exploratory design was used. A total of 17 people with learning disabilities were recruited to two focus groups which took place within an advocacy network. Additionally, three family carers of someone with a learning disability, requiring palliative care, and two family carers who had been bereaved recently were also interviewed. Combined data identified the perceived learning needs for healthcare professionals. Three subthemes emerged: 'information and preparation', 'provision of care' and 'family-centred care'. This study shows that people with learning disabilities can have conversations about death and dying, and their preferred end-of-life care, but require information that they can understand. They also need to have people around familiar to them and with them. Healthcare professionals require skills and knowledge to effectively provide palliative care for people with learning disabilities and should also work in partnership with their family carers who have expertise from their long-term caring role. These findings have implications for educators and clinicians.

IntroductionThere is substantial literature on opioid pharmacotherapies from a service user perspective, mostly focused on methadone and buprenorphine. However, as a relatively new formulation, much less is known about user experiences and views of Long-Acting Injectable Buprenorphine (LAIB). To date, no published reviews have qualitatively described LAIB service user experience. The objective of this scoping review is to identify and describe the peer-reviewed qualitative studies examining the service user experience of LAIB.Methods and analysisThis scoping review will follow the methodology described by Arksey and O’Malley, further adapted by Levac et al and others. The search strategy will be developed in collaboration with an expert librarian and will include searches of Medline, Embase, PsycINFO, CINAHL, Scopus and Web of Science as well as citation chaining. The search dates will range from 2016, when LAIB was first approved, to the date of the final search. Included studies will investigate the perspectives and experiences of LAIB treatment participants with opioid dependence, within an Opioid Treatment Programme (OTP). For service users, the pharmacological formulation of LAIB significantly reshapes both the clinical practice and the social dynamics within OTPs. To effectively capture the depth and nuance of service users’ experiences, this review will be limited to qualitative, mixed-method, case series or case study designs, with a further restriction to peer-reviewed articles published in English. Identified references, with duplicates removed, will be imported into Covidence for title/abstract screening, full-text review and data extraction by two independent reviewers. All decisions on data inclusion or exclusion will be by consensus agreement, using a third reviewer if necessary. A living experience researcher will lead analysis of manuscript content in NVivo using inductive coding to produce a descriptive thematic analysis. The narrative summary will present key study characteristics, quality appraisal and synthesised findings that describe service user experiences and perspectives of LAIB, guided by the Systematic Reviews and Meta-Analysis for Scoping Reviews checklist.Ethics and disseminationThis scoping review undertakes secondary analysis of data in the public domains only and thus does not require ethics approval given no participants are directly involved. The results of the review will be published in a peer-reviewed journal, presented at relevant academic and community conferences, and discussed and disseminated to/with community organisations, service users and policy-makers.Data statementPrepublication history and additional supplemental material for this paper are available online. To view these files, visit: Open Science Framework https://doi.org/10.17605/OSF.IO/XMHKN.

Purpose The purpose of this study was to explore health-care access, experiences and barriers among people with learning disabilities from ethnic minority backgrounds and their informal carers within an NHS mental health trust in the East of England. The evaluation aimed to understand experiences of health-care access, and to generate practical, service-user- and carer-informed priorities for improving equity, coordination and reasonable adjustments across the local pathways. Design/methodology/approach Multi-method service evaluation. .An easy-read questionnaire was mailed to 64 eligible service users, where 13 responded (descriptive analysis). A focus group with six carers was conducted online and transcripts were analysed using reflexive thematic analysis. The design sought feedback on service use, satisfaction and reasonable adjustments, alongside carer experiences of access, information, coordination and support. Findings “Not knowing where to find help” was the most frequent barrier, alongside language barriers, stigma and insufficient reasonable adjustments. Carers reported high weekly caregiving hours and limited respite; coordination and signposting were inconsistent, with fewer than half of survey respondents (46.15%) reporting yearly specialist input. While 69.2% of people with learning disabilities had an annual GP health check and many felt involved in their care, information gaps undermined satisfaction. Desired adjustments included earlier/later appointments and easy-read materials. Carers advocated for stronger multidisciplinary working. Research limitations/implications As this evaluation did not set out to isolate the role of ethnicity, findings reflect general experiences of health-care access rather than providing an in-depth account of how ethnicity specifically shapes these experiences. Originality/value This evaluation contributes empirical evidence to the limited research on health-care access for people with learning disabilities from ethnic minority backgrounds and their carers, bringing together both service user and carer perspectives. It highlights actionable levers, such as clearer signposting, proactive communication, staff training in learning disability and better multidisciplinary coordination – to reduce avoidable burden on families and carers and improve equitable access, experiences and outcomes for people with learning disabilities.

This article describes the use of in-house funding, private contracts, and a mixture of the two for applications in public transit operations. Three transit agencies are presented as examples: SunLine Transit (Thousand Palms, California), Foothill Transit (Los Angeles County), and Phoenix Public Transport (Phoenix, Arizona). Private contracts are often less expensive due to cost-savings measures on the part of the private entity. One such example involves paying employees less money on an hourly wage than is possible within a public organization. In addition, organizations avoid paying for outsourced Social Security, Medical, unemployment, and workers' compensation for these contracts. Lastly, private contracts cut down on slow bureaucratic processes that hinder public organization. However, using in-house employees has advantages such as greater control over quality of service. In the case of a combined public and private operation, the author notes that, due to the potential for maximized efficiency, cost per ride rates are among the lowest for peers. Likewise, the agency is afforded some of the control of public employees while gaining the efficiencies of private.

In a recent issue of Intellectual and Developmental Disabilities, Danforth, Slocum, and Dunkle (2010) discussed the historical contributions of Dr. Samuel A. Kirk, a well known special education pioneer and psychologist, to the fields of mental retardation (now known as intellectual disability) and learning disabilities. Although we agree with some of the authors' points—including the assertion that Kirk had a powerful influence for decades on the development and delivery of special education services for all children—several of their statements do not appear to represent Kirk's viewpoints accurately or provide adequate representations of the origins and conceptual foundations of the learning disability field and its relationship to mental retardation. In order to set the record straight, we have used Kirk's exact words within this response from his publications over his lifetime to place into proper historical perspective his views on the origins of the learning disabilities field, as well as the relationship between mental retardation and learning disabilities. Contrary to the statements made by Danforth et al., we maintain that Kirk's beliefs concerning mental retardation and learning disabilities were not complex and confusing.In fact, the claims made by Danforth et al. (2010) seem to us to be the result of a bit of revisionist history. In this article, we discuss several of Danforth et al.'s comments, including (a) the history of the learning disability construct, (b) Kirk's three claims regarding the constructs of learning disability and mental retardation, (c) the concept of intraindividual differences, (d) the assertion that Kirk left children with mental retardation behind, and (e) the belief in the educability and potential of all children.Danforth et al. (2010) asserted thatKirk did not believe that learning disability was a "recent invention," or that it was "crafted as a conceptual outgrowth of the mental retardation construct," or "developed by researchers working with children with mental retardation." The origins of the conceptual foundations of learning disability are nearly as longstanding as many of the other disability categories, and the roots can be traced back to at least the early 1800s (Hallahan & Mercer, 2002; Hammill, 1993; Wiederholt, 1974). In fact, Kirk often noted that the most common learning disability, dyslexia or specific reading disability, has been studied for over a century and has its own history that is totally separate from the history of mental retardation. In this regard, Kirk and Gallagher (1983) stated:Kirk (1974) further wrote: "Disabilities in reading, writing, and spelling have been of interest to neurologists, ophthalmologists, psychologists, and educators since and before the beginning of this century" (p. 1).Danforth et al. (2010) noted that the conceptual and diagnostic basis for learning disability evolved from the "Strauss syndrome." Although Kirk was highly influenced by the work of Alfred Strauss and acknowledged the contributions of Strauss by explaining that "Strauss gave the initial impetus to the field of learning disabilities" (Kirk & Chalfant, 1984, p. 30), he always maintained that "The discipline now called learning disabilities had its beginning in the early contributions of neurologists who studied the loss of language in adults and ophthalmologists who were concerned about children's inability to develop language or to read or spell" (Kirk & Chalfant, 1984, p. 21). For example, throughout his writings, Kirk discussed how the origins of specific reading disability can be traced back to the 1800s when various physicians studied brain injury in patients who had lost the ability to read (Kirk & Chalfant, 1984; Kirk & Gallagher, 1983). Physicians from the United Kingdom, Germany, and the United States provided the first case studies of individuals who had lost the power to read—usually because of a stroke or brain injury—and these physicians attempted to identify the characteristics, etiology, and methods that would be most effective for treating these reading disorders (Anderson & Meier-Hedde, 2001). As an example, in 1872, Sir William Broadbent described the cortical damage present in an autopsy of an individual who had speech disturbances and reading disabilities (Broadbent, 1872). Five years later, Kussmaul (1877a) noted that "a complete text blindness may exist although the power of sight, the intellect, and the powers of speech are intact" (p. 595). In this regard, the term word blindness was first applied to individuals with aphasia who had lost the ability to read (Kussmaul, 1877b). Thus, Kussmaul gave birth to the idea of specific reading disability (Hallahan & Mercer, 2002), a type of learning disability that Kirk would study his entire career (Kirk, 1984).From early in his career, Kirk was fascinated by the enigma of children with specific reading disabilities and how they could be best served. In 1929, he began his master's degree at the University of Chicago. During his graduate studies, he also worked as a resident instructor at the Oaks School in Oak Park, Illinois (a suburb of Chicago), where his job was to manage 50 delinquent boys who had mental retardation (Kirk, 1984). He worked at the school under the tutelage of Dr. Marion Monroe, a researcher at the Institute for Juvenile Research in Chicago and a leading reading expert who had originally worked with Dr. Samuel Orton in Iowa. Orton is often described as providing the first report on word blindness in America and as being the key figure for setting the stage for the study of reading disabilities in the United States (Hallahan & Mercer, 2002).Kirk, therefore, had parallel interests in both mental retardation and the concept of reading disability, dating back to his early graduate studies and his work experiences at the time. Reflecting on his experiences at the Oaks School, Kirk (1976) stated:Kirk's first publication based on his master's thesis was a study that explored the learning of simple words by what he referred to as "subnormal boys" (Kirk, 1933). He later explained (Kirk, 1984):As did Fernald, Orton, and Monroe, Kirk found that retention for word learning was improved when tracing was added to the teaching procedure. Kirk (1984) also hypothesized at this time that "remedial reading might alleviate delinquency in some children" (p. 29).As was the case with other early pioneers, Kirk was concerned about finding the most efficacious ways of instruction for children who were struggling to learn to read. Kirk (1984) explained how Monroe's 1932 book, Children Who Cannot Read, was for a while his "bible" (p. 31) and how her system of diagnosing reading errors and profiling abilities and disabilities continued to influence his work in later years. In discussing Monroe's remedial program, Kirk noted that "Her remedial work was continued by two of her students who studied with her at the Institute for Juvenile Research in Chicago" (Kirk & Chalfant, 1984, p. 32). These two students, Thorleif G. Hegge and Samuel A. Kirk, along with his wife, Winifred, went on to develop the Hegge, Kirk, and Kirk Remedial Reading Drills (1936), which evolved from the study of children with reading disabilities, and their development was "influenced by Marion Monroe and the Fernald kinesthetic method" (Kirk, 1984, p. 32).Monroe (1932) also created an expectancy formula as a way of identifying reading disabilities that was based on comparing a child's chronological age, mental age, and arithmetic ability to reading performance (Hallahan & Mercer, 2002; Monroe, 1932). The resulting discrepancy indicated the severity of the reading disability. Influenced by Monroe, Kirk (1962) recommended that for diagnosing severe reading disabilities (dyslexia), one would determine a child's reading potential or capacity by comparing his or her Stanford-Binet IQ score and measures of vocabulary and arithmetic computation to the present level of reading achievement (pp. 265–266). This type of discrepancy expectancy formula or ability-achievement discrepancy was incorporated into P. L. 94–142, Education for All Handicapped Children Act (1975).Danforth et al. (2010) asserted that Kirk's own thinking about the relationships between mental retardation and learning disabilities was complex, multifaceted, and confusing. They noted that Kirk made the following three claims: (a) mental retardation was an exclusionary criterion to learning disability, (b) a child could have both a learning disability and mental retardation, and that (c) "learning disability was often mental retardation in disguise" (p. 189). Although it is understandable how readers unfamiliar with the origins of these fields could view such claims as "complex and even confusing" (p. 188), Kirk, in fact, viewed them as quite consistent as we discuss below.Danforth et al. (2010) indicated that Kirk "came to believe that he could not promote the new learning disability construct without clearly distinguishing it from the older, more established condition of mental retardation" (p. 182). On the surface, Danforth et al.'s statement is true. In fact, Kirk (1977) stated that the characteristics associated with learning disabilities were distinguishable from those associated with mental retardation, and in his scholarly endeavors and governmental public policy work during his years in Washington, DC, he attempted to differentiate between these two constructs. Kirk was well aware that federal legislation in the late 1950s and early 1960s already provided teacher training for students having mental retardation (e.g., P.L. 85–926, National Defense Education Act of 1958, that provided funds for training professionals to train teachers of students having mental retardation) and for students who were deaf (e.g., PL 87–276, Special Education Act of 1961, that provided funds for training professionals to train teachers of students who were deaf) (Kirk, 1984).Just as he had done for children having cerebral palsy or mental retardation, Kirk wanted to create another category of special education that would protect and provide services for children with specific learning disabilities. In discussing the category of learning disabilities, Kirk and Gallagher (1983) explained: "The label learning disability includes the heterogeneous group of children who do not fit neatly into the traditional categories of handicapped children" (p. 366). In the 1950s and early 1960s, public schools did not provide special educational services for these children. Kirk and Chalfant (1984) explained that the field of learning disabilities emerged for the following two reasons:Hammill (1993) also agreed that the most influential group in the learning disabilities movement were parents; it was their advocacy work that was primarily responsible for the specific legislation that was passed. In fact, Kirk often noted the important role and success of parents and parent groups, such as the Association for Children with Learning Disabilities, in establishing through litigation the rights of their children with disabilities (Kirk & Gallagher, 1983, p. 15).Kirk attempted to differentiate between those learning disabilities that were attributed to a neurological impediment that resulted in a specific academic problem from the more generic learning problems in children that could result from limited school attendance, inadequate instruction, or other environmental conditions. Such children were excluded from the learning disability category because their difficulties could be attributed to a lack of opportunity to learn (Kirk & Gallagher, 1983). In 1963, Kirk was invited to speak at the Conference on Exploration Into Problems of the Perceptually Handicapped Child. He proposed that the term learning disability be used to categorize these children who did not fall into the traditional categories of disability, but nevertheless had learning impairments (Kirk, 1984).Kirk was also concerned that learning disability would become a category for all types of learning problems when it was meant to capture only those individuals with specific disabilities that did not interfere with all types of learning. He found that the field of learning disabilities was experiencing the same type of problems with expansion and misidentification as did programs for the educable mentally retarded, stating:Kirk, therefore, was very concerned about differentiating between children having mental retardation, where their learning was negatively affected across many academic and adaptive learning skills areas (e.g., reading, math calculation, spelling, writing, social interactions, eating, dressing) from those having a specific learning disability within one or more academic areas (e.g., reading and/or math calculation).Danforth et al. (2010) noted that "Kirk steadfastly maintained that, in some instances, a child could have both a learning disability and mental retardation" (p. 187). This statement is true and an accurate reflection of Kirk's beliefs. Because Kirk viewed a learning disability as a perceptual impairment, a person of any level of intelligence, including intellectually gifted individuals, could have a learning disability. In an interview with Arena (1978), Kirk explained this conceptualization of learning disability: "I like to define a learning disability as a psychological or neurological impediment to development of adequate perceptual or communicative behavior, which first is manifested in discrepancies among specific behaviors or between overall performance and academic achievement" (p. 617). Kirk, Kliebhan, and Lerner (1978) also noted that "the concept of discrepancy applies to mentally superior, mentally normal, and mentally retarded children" (p. 27). Thus, Kirk did maintain that individuals of any level of intelligence and with any other disability could also have a learning disability. He understood that comorbidity can exist among numerous disorders, such as a child having both a sensory impairment and mental retardation or a child having both a learning disability and physical impairments. Kirk (1962) explained this in the following manner:Thus, for Kirk a learning disability differed from mental retardation in that it stemmed "from intrinsic cognitive or perceptual difficulties interfering with a child's learning" (Kirk, 1984, p. 40). He further stated:Children who have mental retardation or an emotional disability could also have an intrinsic neurological impediment to learning; and these children would be considered to be "multiply handicapped and remediated as such" (Kirk & Chalfant, 1984, p. 16). Thus Kirk noted that learning disabilities are "not primarily due to severe mental retardation, sensory handicaps, emotional problems, or lack of opportunity to learn" (Kirk & Gallagher, 1983, p. 368).Kirk was always concerned about misclassification of children because it would lead to inadequate understanding of the child as well as inappropriate instruction. Kirk and Chalfant (1984) stated: "In classifying children for instructional purposes, considerable care must be taken to avoid mistaken diagnoses and misclassifications" (p. 14). Kirk was well aware that children could be diagnosed as having mental retardation when, in fact, they did not. He found that some children who were classified as having mental retardation would be better classified as having learning disabilities. Throughout his career, he stressed that the diagnosis of children was for the purpose of remediation, not for classification or categorization. In this regard, Kirk and Johnson (1951) stated: "The purpose of any diagnosis, or the determination of etiology, is to assist in structuring the most adequate rehabilitation procedures" (p. 109).Kirk always viewed the concept of intraindividual discrepancies as a defining feature of learning disabilities, with Kirk and Gallagher (1983) stating the following: "Although such children form a heterogeneous group and fail to learn for diverse reasons, they have one thing in common: discrepancies (intraindividual differences) in abilities and achievement" p. 366). Regardless of the type of disability, however, Kirk was always interested in the concept of intraindividual differences, specifying what children could do, what they had difficulty doing, and, most importantly, how to resolve their difficulties. He commented: "I have felt for some time that labels we give children are satisfying to us but of little help to the child himself" (Kirk, 1975, p. 8). He felt that labels did not translate into intervention needs, and these needs could only be determined through thorough study of each child. He wrote: "Their classification as mentally retarded had little relevance to the training of these children. Each child needed a diagnosis, and each child needed a different program (Kirk, 1984, p. 37). Kirk always asserted that instead of using labels "it is more accurate and meaningful to describe behavior" (Kirk, 1975, p. 9). When evaluating children with mental retardation, he asked the following questions: "What abilities does this child have? What deficits exist? What do we do about these particular deficits?" (Kirk, 1984, p. 37).These types of questions led Kirk to develop a test of specific perceptual and linguistic functions, the Illinois Test of Psycholinguistic Abilities–ITPA (Kirk, McCarthy, & Kirk, 1968). Profiles were used to identify a specific child's strengths and weaknesses for the purpose of planning the most appropriate educational intervention. Kirk (1962) explained the importance of profiles, stating: "The profiles showed typical assets and deficits in growth which necessitate different educational methods and programs for various types of deviant children; the gifted, mentally retarded, auditorily handicapped, visually handicapped, speech handicapped, crippled, socially maladjusted, and multiply handicapped" (p. 32). Kirk (1984) further observed that "the ITPA was popular from the beginning because it is an intraindividual test, comparing a child's own abilities and disabilities for the purpose of organizing remediation for deficits" (p. 38).Throughout their article, Danforth et al. (2010) suggested that Kirk's turning of his "educability narrative" was a way to promote the learning disability construct while negating mental retardation. In describing how Kirk's viewpoints changed, Danforth et al. stated:Danforth et al. further explained thatDanforth et al. (2010) asserted that "Students with learning disabilities were nuggets of gold among the coal heap, untapped assets buried within a defective population, awaiting discovery and instructional polishing up" (p. 190) and thatThus, Kirk is portrayed as turning away from the population of children having mental retardation, essentially leaving these children behind, in a "coal heap" because of their limited learning potential. Danforth et al. did, however, note at one point that Kirk "remained a strong supporter of the educational training of students with mental retardation throughout his career" (p. 190), but later, they more negatively claimed that this message was somehow lost or obscured and that he "also negated that very message in certain circumstances" (p. 190). In addition, in discussing a quote by Kirk, Danforth et al. explained that Kirk asserted that although a child with mental retardation required "care" and "management," the child with learning disabilities had assets and disabilities that may be amenable to remediation.To set the record straight, Kirk never negated the message of being a strong supporter of the education and training of students with mental retardation; he only attempted in many of his publications, speeches, and federal government public policy work to clarify the similarities and differences between mental retardation and learning disabilities. Moreover, concerning the aforementioned comment by Danforth et al. (2010) regarding the "care" and "management" quote by Kirk in relation to mental retardation, readers of this Journal and Danforth et al. should be aware of the fact that Kirk stated that the label of mental retardation applies to children who require "certain kinds of care, management, and education [italics added]" (Kirk, 1967, p. 13). Education was never excluded by Kirk from care and management, as Danforth et al. suggested.Kirk believed that all children, regardless of type of disability, had learning potential and would be responsive to educational intervention and treatment. He commented that his experience at the Wayne County Training School "pointed out to me that much more could be done with handicapped children than most people believed" (Kirk, 1984, p. 32) and "biased me toward a belief in the power of intervention" (Kirk, 1984, p. 35). Throughout his career, Kirk was a champion for children with all types of abilities and disabilities, including those who were gifted. He was concerned with the accurate identification of disabilities for ensuring the most effective services. Kirk would not agree that he turned his back on children having mental retardation or that these children had limited learning potential. In fact, he commented that throughout his career, it was "a great source of satisfaction to participate and help the parent movements—first for children with cerebral palsy, then for the mentally retarded, and lastly for the learning disabled" (Kirk, 1984, p. 41). When helping one group, he never abandoned the others as Danforth et al. implied. Kirk always believed in the educability and potential of all children and that all children were unique and deserving of the best instruction possible.Kirk (1962) maintained that one basic principle was inherent in the philosophy of a democracy, namely, that all children have the right to develop to their maximum potential. He commented that the expression "All men are created equal" denotes not only equality before the law, but also equality of opportunity. He summarized his view as follows:This, in fact, is the legacy that Dr. Samuel A. Kirk left behind, not just for the fields of learning disability and intellectual disability, but for all areas of disability.

Cognitive remediation (CR) can reduce the cognitive difficulties experienced by people with psychosis. Adapting CR to be delivered remotely provides new opportunities for extending its use. However, doing so requires further evaluation of its acceptability from service users' views. We evaluate the acceptability of therapist-supported remote CR from the perspectives of service users using participatory service user-centred methods. After receiving 12 weeks of therapist-supported remote CR, service users were interviewed by a service user researcher following a semi-structured 18-question interview guide. Transcripts were analysed using reflexive thematic analysis with themes and codes further validated by a Lived Experience Advisory Panel and member checking. The study recruited 26 participants, almost all of whom reported high acceptability of remote CR, and some suggested improvements. Four themes emerged: (1) perceived treatment benefits, (2) remote versus in-person therapy, (3) the therapist's role, and (4) how it could be better. This study used comprehensive service user involvement methods. For some participants, technology use remained a challenge and addressing these difficulties detracted from the therapy experience. These outcomes align with existing research on remote therapy, suggesting that remote CR can expand choice and improve access to treatment for psychosis service users once barriers are addressed. Future use of remote CR should consider technology training and equipment provision to facilitate therapy for service users and therapists.

Much has been written about the importance of involving service users in the research process. Far less is available about the experience of involvement from the perspective of service users themselves. The present paper is a joint account by service users and researchers of a service users' advisory group set up to support and advise a project to evaluate diabetes services in Bradford, UK. The establishment of a separate advisory group for service users is, to our knowledge, an innovative approach to lay involvement within mainstream National Health Service (NHS)-based research. Factors that contributed to the group's success included personal contact, continuity of membership and integration into the management structure of the project. Also valued were the confidence in numbers which membership of the group gave, and the opportunity to meet and discuss issues away from the formal and somewhat intimidating atmosphere of the project's steering group. Aside from the personal value to participants and any impact on the quality of research outcomes, wider benefits included the ability to share knowledge with others and gain greater intercultural understanding.

Learning disabilities: Interventions and clinical issues

BackgroundPeople with learning disabilities are often left behind and ostracised in life, education, employment and in research. This article describes the importance and value that people with learning disabilities can bring when participating in co‐production and lived experience research. The article reports on the inequalities and barriers that people living with learning disabilities have in accessing health and social care services and hospitals and makes recommendations for improving services and people's experiences of services. The intertwining of subject (inequalities and barriers of access) and process (lived experience research and co‐production) leads to more comprehensive knowledge and understanding of learning disabilities.MethodsCo‐production events were held with people with learning disabilities, facilitated by the co‐author (Tom Kerridge). Tom and a service user researcher (Ben Gray) with Asperger's syndrome and schizophrenia thematised transcripts and made recommendations, in Ben's case with the insight of lived experience of learning disabilities and mental health problems.FindingsA series of recommendations are made based on the insight of a lived experience perspective. For example: to have a grass roots learning disabilities champion, lived experience peer mentors and supporters, training via a film made by people with learning disabilities, the involvement of Learning Disabilities Research Ambassadors to conduct phase two of the research as well as other recommendations.ConclusionsLived experience research and co‐production are at the heart and centre of contemporary research in health and social care. Participation can change feelings of exclusion and stigma into feelings of being valued, accepted and being able to make a difference.

Accessible summary People with intellectual disabilities are living for longer than ever before and are experiencing the deaths of their friends and other service users. This study describes the experiences of people with intellectual disabilities who have lived through the death of a friend or service user from the point of view of staff from intellectual disability and palliative care services. It is important to understand the experiences of people with intellectual disabilities to try and help people cope with the deaths of their friends. The study shows that it helps to include people with intellectual disabilities when their friends become unwell and to talk openly with them about what is happening. SummaryResearch is lacking on the effect of the deaths of fellow service users on people with intellectual disabilities. This qualitative study formed part of a project which aimed to describe the provision of palliative care to people with intellectual disabilities in Ireland and to assess the population’s palliative care needs. We report on findings from 16 focus groups held with staff in which participants described their perception of the experiences of people with intellectual disabilities when other service users die. Interviews were analysed using Framework Analysis. The findings highlight the emotional impact of the death of a friend on people with intellectual disabilities. Situations where staff facilitated the involvement of services users are described, and the study points to the benefits of this approach. Possible barriers to involvement are highlighted. The findings affirm the importance of ensuring that people with intellectual disabilities have a good understanding of the concept of death to alleviate the bereavement experience.

Limited research has been conducted worldwide on the experiences that children and young people from refugee backgrounds have with mental health services, despite evidence that they have significant vulnerability to the development of mental health problems and to suicidal behaviour and that those with mental ill-health typically underutilise services. The authors were particularly interested in barriers and facilitators to service access and engagement, and conducted two qualitative research projects to improve understanding of the issues – the first with service providers experienced in the refugee area and the second with young refugee service users. The aim of this project was to compare the perspectives of professionals and service users and to identify similarities and differences. The perspectives of the service users and providers were strikingly similar. The analysis identified 21 implications for policy makers, agencies and practitioners, which ranged from issues concerning cultural sensitivity, background matching and mental health literacy to accessibility, setting boundaries and expectations and implementing a holistic and outreach approach. There is a range of specific, practical measures that policy makers and service providers can introduce to enhance access to and engagement with mental health services for young people from refugee backgrounds.

This paper will present the results of a national survey in England that assessed integrated care from the perspective of service users living with a rare neurodegenerative condition, Huntington’s Disease (HD). It is part of the Integrate-HD project that seeks to develop an integrated care model that responds to the complex needs of people and families living with this genetic hereditary disorder. The first phase of the project found a lack of evidence of integrated care in HD, despite this being one of the most complex neurological conditions, and a lack of information on people’s experiences with health and care in England. Therefore, the purpose of the survey was to capture the experiences of adults at risk, gene positive, diagnosed with the disease, caregivers and former caregivers of people living with HD. The survey was tailored to assess people’s experiences and identify their unmet needs and, in this way, create a benchmark from which to prioritise, strategize and improve future care. The survey was co-designed with people living with HD from two different patient and public groups: one recruited specifically for the Integrate-HD project, where people were more lay; and, HD Voice, from the Huntington’s Disease Association (HDA) England &amp; Wales, with more experienced contributors. The survey domains were based on a previous systematic literature review, where findings were interpreted with patient and public involvement and from it, four characteristics were identified as key elements to successful integrated care programmes: expert knowledge, multisectoral care coordination, care continuity and a person-centred approach. The project was led by a Nurse PhD researcher and a team of researchers with expertise in mixed-methods, HD and integrated care. The survey was reviewed by third sector collaborative organizations. Integrate-HD recruited for seven months using social media (e.g., Instagram account @integrate_hd), charities engagement and electronic communication. Patient and public contributors were spokespersons for the project, assisted with recruitment strategies and connected the researchers with gatekeepers. More than 150 people participated. Analysis is undergoing and detailed key findings will be presented at the conference. From the perspective of HD service users in England, current care is fragmented. Using the person-centred care definition from National Voices, more than half of the people ranked care very poor, poor or had a neutral opinion. Few people reported agreeing with their care experience matching person-centred integrated care. The survey highlights “post-code lottery” and people’s unmet needs. The survey benchmarks integrated care from the perspective of service users, pinpointing areas that are fragmented, but also identifies what is working well, gathering important knowledge that can be potentially translated to other contexts. Next, interviews with service users and providers will be conducted, to explore different working models. Learnings will be used to design an integrated care model that addresses the needs of people living with HD.

Limited evidence exists for the effectiveness of psychological interventions that target the mental health needs of people who use forensic mental health services. Capturing service users’ perspectives and experiences may provide information helpful to understanding why this is the case. It may also provide information that could help to improve the effectiveness of such interventions with this population. This paper aimed to address this and reviewed qualitative studies to identify the factors that are considered important to the effectiveness of interventions from the perspectives of service users. A review of the literature was conducted and eleven papers were identified as meeting the inclusion criteria. A meta-ethnography approach was used to synthesize the data. Six super-ordinate themes emerged which were synthesized into a hierarchy of treatment based on two main categories: “Treatment Foundations” and “Treatment Benefits.” The findings suggested that addressing the Treatment Foundation factors such as enabling informed decision-making; developing trusting therapeutic relationships; and providing accessible materials whilst considering service user preferences can in turn result in service users benefitting from treatment in a number of ways. The findings have significant implications for future research, mental health service providers, clinicians and therapists, and for those who design therapeutic interventions.