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Background: Using inclusive research methods with people with intellectual disabilities is increasingly common. A recent consensus statement identified key elements when conducting and reporting inclusive research with people with intellectual disabilities. This review identifies the range of health and social care research topics using inclusive research methodologies, systematically appraises the involvement of researchers with intellectual disabilities, and identifies facilitators and barriers to inclusive research. Researchers' experiences of engaging with inclusive research are synthesised. Method: Seventeen empirical studies focused upon inclusive health and social care research were identified. The associated inclusive research methodologies employed, and the stages in which researchers with intellectual disabilities were involved, along with the experiences of researchers with and without intellectual disabilities were synthesised. Results: Papers focused on a broad range of health and social care topics and largely employed qualitative or mixed-methods designs. Researchers with intellectual disabilities were frequently involved with data collection, analysis and dissemination. Facilitators of inclusive research comprised sharing power, team working, having sufficient resources and making research methodologies accessible. Conclusions: Researchers with intellectual disabilities are involved in a wide range of methodologies and research tasks. How the added value of inclusive research is measured and its impact on outcomes, require consideration.

Background: This study investigated the use of a Compassion-Focused Therapy (CFT) group as a psychological intervention for a group of adults with an intellectual disability with a range of psychological issues. Method: Four clients attended the group, which was facilitated by three trainee Clinical Psychologists. The group consisted of 8 weekly sessions. Findings: Standardised outcome measures showed an increase in psychological well-being and self-compassion for all participants postintervention. Two participants showed an increase in psychological distress, while two participants reported decreases in this area. Scores on measures of self-criticism fell for two participants, increased for one participant and showed no change for one participant. Qualitative interviews were conducted with postgroup with all group members (clients and facilitators). Thematic analysis identified two superordinate themes relating to the accessibility of the group content, and interpersonal aspects of the group. Conclusion: The results suggest that clients enjoyed and benefitted from the group. Challenges, such as lack of carer involvement, were identified, and recommendations for future CFT groups are made.

Background: Sepsis is a common cause of death within the general population and the third most common cause of death for people with a learning disability, suggesting an increased vulnerability or different trajectory within this population. Despite this, there is currently no research into the direct lived experiences of people with a learning disability who develop and recover from sepsis. Methods: Semi-structured interviews were conducted with 3 people with a learning disability (average age of 44.7, range of age 33 to 68) who experienced sepsis and 5 carers (1 familial and 4 professional carers) (average age of 48.8, range of age 43 to 58) who had supported an individual with a learning disability while they had sepsis. Sepsis was caused by a range of physical health problems. Face-to-face semi-structured interviews were conducted, transcribed and analysed using thematic analysis. Findings: Six main themes were identified: chronic and acute pre-existing health conditions, experiences within the hospital setting, physical recovery, mental recovery, returning to a normal life and the implications of sepsis. The findings highlighted some of the ongoing difficulties for people with intellectual disabilities in accessing timely healthcare provision and the ongoing mental health problems, even after physically recovering from sepsis. People with a learning disability have more comorbid health conditions which may compound the longer-term effects of sepsis. Conclusion: Future research should be conducted with people with learning disabilities about their experiences shortly after recovery from sepsis, to mitigate the effects of memory difficulties in recalling experiences.

Despite autism being highly heritable, this study is the first to investigate the experiences of parents of autistic children who have significant autistic traits themselves. Eight parents of autistic children with significant autistic traits themselves were interviewed regarding their parenting experiences. In line with what has previously been reported by parents of autistic children, participants described difficulties with parental mental health and navigating professional services. Novel participant experiences included the interaction between parental and child autistic traits helping and hindering their parenting; parents learning to manage their own autistic traits, and parents finding the home to be an accepting place of autism. The need for adequately funded, tailored and accessible services for these families is emphasised.

Despite autism being highly heritable, this study is the first to investigate the experiences of parents of autistic children who have significant autistic traits themselves. Eight parents of autistic children with significant autistic traits themselves were interviewed regarding their parenting experiences. In line with what has previously been reported by parents of autistic children, participants described difficulties with parental mental health and navigating professional services. Novel participant experiences included the interaction between parental and child autistic traits helping and hindering their parenting; parents learning to manage their own autistic traits, and parents finding the home to be an accepting place of autism. The need for adequately funded, tailored and accessible services for these families is emphasised., Author(s): Elise Marriott [sup.1] [sup.3] , James Stacey [sup.2] , Olivia Mary Hewitt [sup.4] [sup.5] , Nienke E. Verkuijl [sup.6] Author Affiliations: (1) grid.4991.5, 0000 0004 1936 8948, The Oxford [...]

Background: Existing studies show mixed results of the effectiveness of CBT for people with learning disabilities and anxiety. Method: A CBT group was run for people with learning disabilities and anxiety, who attended with a supporter. Qualitative interviews were conducted post-group and analysed using thematic analysis. Standardised questionnaires measuring anxiety, psychological distress and overall functioning were administered at pre- and post-group, and at follow-up. Results: Participants' anxiety decreased overall post-group, which remained largely at follow-up. The group and the supporters' involvement was helpful. Both supporters and participants recalled coping strategies that were presented in the group. Three out of four participants found attending a group challenging initially. The supporters seem to have specific expectations about the impact of the group. Conclusions: The results of the study are consistent with the existing, growing body of evidence which supports the use of CBT for people with learning disabilities and anxiety.

Background: Transition to adulthood is an important time for young people and may be a particularly challenging time for people with intellectual disabilities. However, there has been little research in the UK regarding the experiences of parents who have son or daughter with an intellectual disability transitioning to adulthood. Method: The study used interpretive phenomenological analysis to explore the lived experiences of ten parents who had a son or daughter (aged 18-25 years) with an intellectual disability. Half of the sample also had a diagnosis of autism. Results: Three superordinate themes were generated from the data: (a) Transition: The Good, the Bad and Unknown; (b) Striving for Independence; and (c) Supporting the Supporters. Parents experienced many difficulties and uncertainty related to their role, their son/daughter's independence, navigating services for their son/daughter and accessing support for themselves. Conclusions: Increased collaboration and consistency from statutory services is required in addition to providing emotional support to parents and facilitating parent support networks.

Panic attacks are common in adolescents and are experienced in several mental health difficulties. In adults, cognitions during panic attacks comprise mental images as well as thoughts. No qualitative research into panic attacks has been conducted with adolescents. Better understanding of the experience of panic attacks, including the presence and nature of mental images, may improve treatments. Nine adolescents (15-18 years) completed a semi-structured interview exploring experiences of panic attacks. Data was analysed using Interpretative Phenomenological Analysis. Six superordinate themes reflected the intense nature of having a panic attack, being unable to think and fearing losing control of one's mind, a disconnect in feeling the panic attack would never end versus knowing from experience that it would, feeling completely out of control during the attack, feeling embarrassment and shame, feeling cut-off and isolated from others, and trying to find ways to cope through distraction, avoidance and learning to understand the thoughts. Mental images enhanced the intensity of panic. Several aspects of the findings were consistent with the cognitive model of panic disorder in adults. The impact of panic on normative adolescent developmental tasks is discussed. Interventions should be adapted for adolescents' developmental stage and consider any mental images.

Objectives: The objectives of this mixed methods study are to (1) investigate the knowledge and skills of mainstream psychiatrists in managing patients with Intellectual Disability (ID) and comorbid mental health disorders, (2) assess their perception of the quality and accessibility of services for this population, and (3) establish the local implementation of the Green Light Toolkit. Method: We surveyed mainstream psychiatrists in the Thames Valley region working in general adult, forensic, and older adult services, to ascertain their opinions about their knowledge and skills in managing patients with ID and comorbid mental disorder, as well as quality and accessibility of services. We compared our findings with previous UK and international research. Results: Respondents mirrored views expressed in earlier studies that inpatient care should be provided in dedicated units for people with ID, rather than general adult inpatient wards. Limited resources, training and competence, and lack of collaborative working were highlighted as key barriers to provision of effective care. Conclusion: Psychiatrists broadly support a specialist service model for people with ID. In the UK, specialist psychiatric services for people with ID have been delivered through inpatient and community services, but there is a current shift towards integrating ID with mainstream service models. Participants expressed concern that mainstream services fail to meet the mental health needs of this patient group, and lead to increased patient vulnerability. The Green Light Toolkit was not well known or used within services. A number of ways of improving collaborative care between services are suggested.

Background: This paper reports quantitative and qualitative follow-up data from three participants who attended a Dialectical Behaviour Therapy (DBT) group for people with an intellectual disability. Materials and Methods: Quantitative data regarding psychological well-being, psychological distress (measured using the Psychological Therapies Outcome Scales; PTOS) and quality of life (measured using the Health of the Nation Outcome Scales--Learning Disability; HONOS-LD) are reported for pre-group, post-group and at 6-month and 2-year follow-up. Interviews were conducted with participants post-group and at 2-year follow-up. Data were analysed using thematic analysis. Results: Improvements in scores on measures of psychological well-being, psychological distress and quality of life appear to be maintained at 6-month follow-up, but scores at 2-year follow-up suggest a return to baseline. Qualitative self-report data suggest a number of interesting ways participants adapted and individualised techniques from the group, as well as suggesting possible barriers to maintaining change in the longer term. Conclusions: Clinical implications are considered to improve effectiveness of similar interventions, as well research implications in order to improve knowledge about the longer term impact of group DBT interventions.

Background: Social and communication impairments are a core diagnostic feature of autism spectrum disorder (ASD) and can act as a barrier to developing relationships. The National Institute for Health and Care Excellence (2016) guidelines recommend group social skills interventions as the first-line treatment to help adults with ASD improve their social skills and relationships. To date, reviews have only explored the impact of group social skills interventions for adults with ASD without intellectual disability (ID). This review aimed to critically appraise studies investigating group social skills interventions for adults with ASD both without intellectual disability and with a mild or moderate intellectual disability. Method: A systematic search of four databases (PsycINFO, MEDLINE, EMBASE and CINAHL), as well as hand-searching of references, was conducted. Ten studies were identified, employing different designs and methodologies, and covering six different group social skills interventions. Results: Overall, the review provided fairly consistent evidence that group social skills in different formats can reduce social impairments and increase social interaction, social knowledge and empathy for adults with ASD. Conclusion: There was variation in the quality of studies, and the most robust evidence was provided for the efficacy of the PEERS-YA intervention. There was less evidence supporting the effectiveness of group social skills interventions for adults with ASD and intellectual disability, and more research is needed in this area.

Research addressing people with intellectual disabilities' experiences of mental health problems has mainly focused on the perspectives of family members or professionals, or has been driven by service evaluation. Few studies have sought the views of people with intellectual disabilities about their own mental health experiences. This study explored the experiences of eight adult participants with mild intellectual disabilities who self-identified as having experienced anxiety, depression, and/or psychosis. Participants completed semi-structured interviews and data was analyzed using interpretative phenomenological analysis (IPA). Four superordinate themes emerged: distress, fear and isolation; damaging impact of relationships and people; negative view of self; and the challenge of "getting my sparkle back." The themes identified in the participants' accounts of their mental health experiences are discussed in relation to clinical and research implications.

Background: A growing body of evidence supports the use of Dialectic Behaviour Therapy with people with an intellectual disability. Various adaptation have been used in studies exploring the efficacy of this intervention. Method: A Dialectic Behaviour Therapy DBT skills training group was attended by people with an intellectual disability and their support staff. Standardised measures of psychological well-being, overall functioning and psychological distress were taken before and after the group and at 4 months follow-up. Qualitative interviews were conducted and analysed using thematic analysis. Results: Results suggested an improvement in all areas for three of the four participants, which were largely maintained at follow-up. Conclusions: This study adds to the growing literature supporting the use of DBT with people with an intellectual disability. The role of support workers in supporting generalisation of skills is considered. Ideas for improving the quality of future studies are considered.

Background: More people with a learning disability are becoming parents. Little is known about the lived experiences of the children who have a parent with a learning disability. Methods: This study uses interpretative phenomenological analysis (IPA) to understand the lived experiences of people who have a parent with a learning disability. Five people who have a parent with a learning disability were asked about their experiences of being parented and their childhood more generally. Results: Four themes emerged from the interviews: 1) "Fitting in" within the wider family system, 2) The parental relationship and the impact of disability, 3) A difficult childhood and 4) Resilience. Conclusions: These findings are compared with the existing literature, and similarities and emerging findings are noted. Implications for services when supporting families with a parent who has a learning disability are discussed. Additional ideas about areas that require additional research are identified.

Background: Recent government policy has focused on reducing the number of people with a learning disability receiving treatment for challenging behaviour or mental health difficulties in hospitals (including in assessment and treatment units; ATU). People with a learning disability should be supported to remain in their community when receiving support for challenging behaviour or mental health difficulties whenever possible. Methods: This study considered a novel intervention based on person-centred planning practice, which aimed to coordinate a person's support, identify outstanding needs and increase communication. This intervention intended to reduce rates of inpatient admission, and support the person to remain in their community, whilst ensuring their needs are met. This intervention was assessed by considering the number of people admitted to the inpatient services before and after the intervention, the length of inpatient admissions before and after the intervention, and by analysing qualitative feedback from participants in the intervention. Results: "Planning Live" meetings were held for 102 people. Forty-five meetings were held retrospectively following an emergency admission. Following the 'Planning Live' meeting, five people had a planned admission and 52 people did not have an inpatient admission. The median length of inpatient stay fell from 143.5 days before the introduction of "Planning Live" to 66 days (a statistically significant reduction). Qualitative feedback shows that the process was largely seen as helpful by professionals, families and individuals taking part in the meetings. Conclusions: The results suggest this person-centred intervention contributed towards a reduction in the amount of time individuals stayed in hospital. However, the total number of hospital admissions rose following the intervention.

Between 10% and 15% of people with a learning disability have behaviour that challenges others, and half of these people live within the family home (Emerson et al., "Research in Developmental Disabilities," 2001; 22, 77). Current best practice in managing challenging behaviour combines person-centred planning, functional analysis, and proactive and reactive strategies, and teaching alternative skills to manage behaviour in a way that keeps both service user and carers safe (positive behaviour support). This study considers the case study of a young man who lives with his parents in their family home. Reactive strategies including physical interventions have been taught to the family which has allowed them to manage their son's behaviour effectively and allowed him to remain living with his family. Frequency and intensity of challenging behaviour reduced, and family confidence in managing challenging behaviour was increased.

The effectiveness of group therapy for people with learning disabilities and anxiety management issues is reviewed. People with learning disabilities face increased levels of psychological distress compared to the general population, yet are often faced with a lack of social support and poor coping techniques to manage their distress. A 6-week cognitive behavioural therapy (CBT) anxiety management group was delivered to eight adults with a mild learning disability by a trainee psychologist and an assistant psychologist. Participants' ages ranged from 17 to 73 years. All participants lived in the local community. Not all participants had a specific anxiety diagnosis, but all required anxiety management input. A mixed methodology using quantitative and qualitative analysis of group outcomes was used. The outcomes from this group suggest that the intervention was successful in treating anxiety for people with learning disabilities. Measures included the Quality of Life Scale, the Glasgow Anxiety Scale and the Health of the Nation Outcome Scale-Learning Disability Version. Interpretative Phenomenological Analysis (IPA) was also used. Data from interviews were coded and analysed thematically. The main themes that emerged included group versus individual input, helpful aspects of the group, talking in front of other people, group composition (including age differences), support partners, and written materials. The outcomes for this group suggest that the intervention was successful in treating anxiety for people with learning disabilities. Practical applications of group therapies for these clients are considered, and recommendations for future groups made. Quantitative and qualitative evaluation methods are compared. (Contains 3 tables.)

Accessible summary: Sepsis is a very serious illness. It is a common cause of death in people with learning disabilities.We wanted to understand what it is like for people with a learning disability to have sepsis.We asked three people with a learning disability and five of their carers what it was like when they had sepsis. We asked about their health before sepsis, how their sepsis was treated and what health services could have done better.Carers often felt that people's mental health was worse after sepsis. They thought that even when people were physically better, their mood and behaviour was still affected.After sepsis, people were more worried about their physical health, and carers were careful to follow up on every health concern. Background: Sepsis is a common cause of death within the general population and the third most common cause of death for people with a learning disability, suggesting an increased vulnerability or different trajectory within this population. Despite this, there is currently no research into the direct lived experiences of people with a learning disability who develop and recover from sepsis. Methods: Semi‐structured interviews were conducted with 3 people with a learning disability (average age of 44.7, range of age 33 to 68) who experienced sepsis and 5 carers (1 familial and 4 professional carers) (average age of 48.8, range of age 43 to 58) who had supported an individual with a learning disability while they had sepsis. Sepsis was caused by a range of physical health problems. Face‐to‐face semi‐structured interviews were conducted, transcribed and analysed using thematic analysis. Findings: Six main themes were identified: chronic and acute pre‐existing health conditions, experiences within the hospital setting, physical recovery, mental recovery, returning to a normal life and the implications of sepsis. The findings highlighted some of the ongoing difficulties for people with intellectual disabilities in accessing timely healthcare provision and the ongoing mental health problems, even after physically recovering from sepsis. People with a learning disability have more comorbid health conditions which may compound the longer‐term effects of sepsis. Conclusion: Future research should be conducted with people with learning disabilities about their experiences shortly after recovery from sepsis, to mitigate the effects of memory difficulties in recalling experiences. [ABSTRACT FROM AUTHOR]

The occurrence of visuospatial neglect acts as a key predictor of recovery outcome following stroke. However, the specific behavioural profiles associated with various neglect subtypes are not well understood. This study aims to identify real-world functional impairments associated with neglect, to determine whether functional impairment profiles differ across patients with egocentric and allocentric neglect, and to investigate how neglect severity predicts functional impairments. Notes from 290 stroke patients' occupational therapy functional assessments were qualitatively and quantitatively analysed in the context of neglect type and severity as reported by the OCS Cancellation Task. Overall, neglect patients had more references to having difficulty initiating tasks, finding items, exhibiting spatial inattention, and having difficulty using both arms than patients without neglect. The proportion of theme references did not differ significantly across patients with egocentric and allocentric neglect. The quantitative severity of egocentric neglect was acted as a significant predictor of reference occurrence over and above stroke severity within difficulty finding items, spatial inattention, body inattention, and upper limb use. This study expands on previous findings by identifying real-world functional impairments differentiating patients with and without neglect. This data provides novel insight into the impact of neglect on functional abilities. [ABSTRACT FROM AUTHOR]

We document current clinical practice and needs in screening for visual perception problems after stroke to inform development of new screening tools. We interviewed 12 occupational therapists and 13 orthoptists. Interviews were thematically analysed using the Value Proposition Canvas, a model which establishes challenges and facilitators in what people want to achieve. Participants' understanding of visual perception varied and often included sensory and cognitive deficits. Occupational therapists commonly screened for visual field deficits and hemispatial neglect, while other aspects of visual cognition were rarely assessed. A positive screening result triggered an orthoptic referral. Screening generally occurred during functional assessments and/or with in-house developed tools. Challenges to practice were: lack of time, lack of training, environmental and stroke survivor factors (e.g., aphasia), insufficient continuation of care, and test characteristics (e.g., not evidence-based). Facilitators were: quick and practical tools, experienced staff or tools with minimal training requirements, a streamlined care pathway. Screening employs non-standardised assessments and rarely covers higher visual perceptual deficits. We demonstrates the need for an evidence-based visual perception screen, which should ideally be 15 min or less, be portable, and require minimal equipment. The screen should be suitable for bedside testing and aphasia-friendly. There is a high demand for training on what visual perception deficits are and how to screen for them. Building local relationships between orthoptists and occupational therapists is perceived as highly beneficial for providing good vision and visual perception care for stroke survivors. Occupational therapists should be alert for visual perceptual deficits in their patients preferably through systematic screening with standardised assessments such as the shortened version of the Rivermead Perceptual Assessment Battery or Occupational Therapy Adult Perceptual Screening Test. [ABSTRACT FROM AUTHOR]

Negative priming reveals that participants respond slowly to a probe target that was a task-irrelevant distractor in the preceding prime display (e.g., Tipper, 1985) and is thought to reflect processes mediating short-term behaviour. However, since the first surprising reports that negative priming is found with meaningless stimuli across delays of 30 days (e.g., DeSchepper & Treisman, 1996), researchers have questioned the existence of long-term negative priming effects. Because long-term negative priming could indicate that task-irrelevant information leaves a memory trace that impacts performance over time, such a finding is of immense theoretical importance. Indeed, the current research finds support for the existence of long-term negative priming as well as its generality across different stimuli and conditions. The authors propose that the initial processes that prevent response to irrelevant stimuli may be stored in memory, where retrieval of these processes can mediate behaviour over time.