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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.

Purpose The use of anti-dementia medication in people with intellectual disabilities has been controversial and requires additional research to assess the efficacy of such medications. An essential part of this treatment (both in terms of research and clinical practice) is having robust outcome measures to assess the efficacy of these medications for individuals. Currently there is no consensus in the UK regarding which outcome measures, in conjunction with clinical judgement, are effective in informing clinicians’ decision-making regarding anti-dementia medication management and this paper aims to present useful outcome measures. Design/methodology/approach A comprehensive literature search was conducted to identify relevant outcome measures. Outcome measures focused on aspects of patients’ presentation such as cognition, activities of daily living, neuropsychiatric presentation or the impact of their presentation (either on themselves, or on others). These outcome measures were critically appraised to ascertain their suitability in informing clinician’s decisions regarding management of anti-dementia medication. The focus of this appraisal was on good quality measures that are practical and accessible and can be easily used within clinical NHS services. Findings This paper provides advice for clinicians on using appropriate outcome measures, depending on patients’ presentations and the symptoms of dementia being targeted, that can be used alongside their clinical assessment to enhance their anti-dementia medication management. Two case studies are presented to illustrate the use of such outcome measures. Originality/value The case for using a range of assessments that are both broad in focus, and those specifically selected to measure the areas of functioning targeted by the anti-dementia medication, is presented.

AIMWe aimed to document current clinical practice and needs in screening for visual perception problems after stroke to inform development of new screening tools.METHODSWe interviewed 25 health care professionals (12 occupational therapists, 13 orthoptists) from 16 organisations in England. Interviews were transcribed and coded in NVivo Software. Data were thematically analysed using the Value Proposition Canvas, a model which establishes what people want to achieve, the challenges they face and what facilitates their jobs.RESULTSParticipants’ 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. They decided on referrals to orthoptists for further assessment. 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 to practice were: quick and practical tools, experienced staff or tools with minimal training requirements, a streamlined care pathway between a stroke unit and eye hospital supported by occupational therapists and orthoptists.CONCLUSIONScreening employs non-standardised assessments and rarely covers visual perceptual deficits in higher order perception. Our service evaluation demonstrates the need for a standardised visual perception screen, which should ideally be 15 minutes or less, be portable, and require minimal equipment. The screen should be suitable for bedside testing in noisy environments, inclusive for participants with aphasia and evidence-based.

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.\ud Nine adolescents (15 – 18 years) completed a semi-structured interview exploring experiences of panic attacks. Data was analysed using Interpretative Phenomenological Analysis.\ud 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.

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.

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.

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.

Purpose Individuals with autism and intellectual disability (ID) have increased needs regarding social interaction. Social skills interventions have focussed on children; however, development of these skills is important across the lifespan. The purpose of this paper is to critically review strategies and interventions used to develop social skills with adults with autism and ID. Design/methodology/approach A systematic literature search identified five studies meeting inclusion criteria. Findings Positive outcomes were reported in promoting positive social behaviours. However, it is not possible to make conclusions regarding the efficacy of social skills interventions for this population due to the limited quantifiable data and small sample sizes. Research limitations/implications The limited number of studies in the review impacts on its conclusions. Two of the papers included only one participant with both ID and autism. Practical implications A range of people need to be involved in supporting and developing social skills (peers, care staff, professionals). More research is needed in a variety of settings. Future research should attend to consistency of outcome measurement, service user perspectives, generalisation of skills, and documenting consent procedures. Originality/value This review focussed on interventions for both positive and negative social behaviours used with adults with ID (of all levels) and autism.

Accessible summary Some people who find it hard to manage their emotions can be helped by a therapy called Dialectic Behaviour Therapy (DBT). Some studies show that DBT might help people with an intellectual disability. We ran a group to see if DBT helped people coming to the group to feel better and manage their difficult feelings more easily. Group members brought their support staff to the group. We asked people what they thought about the group and asked them to fill in some questionnaires to see whether they felt better. The group seemed to help people, even after the group ended. We think DBT might be a useful treatment for people with intellectual disabilities. AbstractBackground 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.

Despite the popularity of person-centred planning, few quantitative studies have evaluated its effectiveness. This service evaluation examined the effectiveness of ‘Planning Live’, a person-centred planning intervention, in two assessment and treatment units (ATUs) for people with intellectual disabilities (ID), using routinely collected Health of The Nation Outcome Scales-Learning Disability (HoNOS-LD) data. Although previous qualitative research found that Planning Live was seen as helpful by individuals, families and professionals, we found that Planning Live was not associated with additional improvements in HoNOS-LD outcomes. We discuss these results, reflect on the inherent difficulties of evaluating person-centred planning interventions quantitatively, and make suggestions for future research.

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.

Accessible Summary More people with a learning disability are becoming parents. We wanted to find out what it was like to have a parent with a learning disability. People told us about the good things about their parents. They also told us some difficult things about their childhood. We have ideas about how services can help families when a parent has a learning disability. Abstract 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.

Accessible Summary Some people with a learning disability need to go to hospital to get help with their mental health or if they have challenging behaviour. We wanted to see if we could help people get the right support at home so they did not have to go to hospital We had a special meeting to help this happen called a ‘Planning Live’ meeting These meetings helped some people stay at home and get support without having to go to hospital. For the people who had to come into hospital, they had a shorter stay and could go home more quickly. Abstract 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.

Aim: To investigate the views of people with a learning disability on their experiences of the community team for people with a learning disability (CTPLD ) that is designed to meet their health and social care needs. Method: Two focus groups were held with people who have learning disabilities. A flip chart with photographs of the CTPLD members, pictures and vignettes about how people use the team’s services and a semi-structured interview schedule were used to ask participants about which healthcare professionals they had seen, what they had found helpful about the CTPLD and ideas for changes to the service. Findings: Participants identified positive areas of practice as well as areas for improvement. Participants reflected on their relationship with the team as well as individual professionals. Conclusion: The involvement of people with learning disabilities in the planning and development of the services that they receive should be an important focus for organisations. Participants’ suggestions enable the team members to improve the services they provide to people with a learning disability

The review aimed to systematically identify and summarize empirical work examining adolescent victims’ help-seeking behaviors and intentions in relation to their own experience of adolescent dating violence (ADV) and to critically evaluate the literature. Three main objectives were addressed: identify factors associated with help seeking, identify help-seeking source (who adolescents disclose to), and explore the barriers and facilitators for help seeking. Results were separated into actual help seeking and help-seeking intentions. A systematic search was conducted via an electronic search on February 10, 2017. Studies were identified by systematically searching the following electronic databases: Amed, BNI, CINAHL, EMBASE, Health Business Elite, HMIC, Medline, PsychINFO, and PubMed. Nineteen studies were included in the review. Adolescents were more likely to go to informal sources of support, with friends being the most commonly reported source. The majority of studies found females were more likely than males to seek help; however, inconsistencies in gender differences emerged. The variation in measurement and definition of ADV and help seeking included in this review impacts on its conclusions. Adolescents identify a number of barriers to help seeking for ADV. Emotional factors were identified as important barriers to seeking help; however, very little research in this review explored this area. Further research is required on age and cultural differences, use of the Internet, and preference for different sources for different types of abuse. There is a need for a greater focus on help seeking to ensure government campaigns are appropriately meeting the needs of young people experiencing ADV.

Children who are adopted have frequently experienced a range of aversive experience which impact on their ability to form secure attachments. Dyadic Developmental Psychotherapy (DDP) is an intervention designed to develop and promote secure attachments with children who have experienced developmental trauma. Eight adoptive parents participated in semi-structured interviews regarding their experiences of attending the ‘Nurturing Attachment’ group informed by DDP. The transcripts of their interviews were explored using Interpretative Phenomenological Analysis. The analysis revealed five inter-connected superordinate themes which were as follows: A supportive group, A shift in perspective, ‘Turning trauma into secure attachment’, ‘Am I doing it right?’ and Continuing the adoption journey. Themes are considered in relation to the theoretical underpinnings and practice of DDP. Some further implications for clinical and research practice are also discussed.

Purpose – Cognitive behaviour therapy (CBT) is currently one of the recommended treatments for depression for the general population and guidance recommends that people with a learning disability should have access to the same treatments as people without a learning disability. The purpose of this paper is to identify, outline and evaluate current research on the effectiveness of CBT for depression for people with a learning disability. The clinical, service and research implications are considered. Design/methodology/approach – A systematic search was conducted and five relevant articles were identified for critical review. Findings – There is a limited but promising evidence base for the use of CBT for depression with people with learning disabilities. Research limitations/implications – The current review identified a number of methodological issues and future research should attempt to overcome these (e.g. small sample sizes and lack of controls). In particular, research should focus on determining the relative contribution of cognitive and behavioural techniques in producing a change in depressive symptoms. Practical implications – Services (including those provided as part of Improving Access to Psychological Therapies) should be offering CBT-based interventions for people with learning disabilities who are experiencing depression. Originality/value – This paper provides a comprehensive and up to date review of the current literature regarding the use of CBT for depression for people with a learning disability. This will be of value to clinicians working with people with a learning disability as well as those commissioning services.

Accessible summary Dylan has a learning disability and challenging behaviour. He was hurting himself and other people. We trained his family to help them cope safely when Dylan was aggressive. Now fewer people are getting hurt when Dylan gets angry and his parents know more about how to help him. Summary 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.

Purpose – People with a learning disability remain at increased risk of abuse and neglect due to a number of factors associated with learning disability per se and the culture in which they live. Understanding the prevalence of abuse within this population allows for appropriate planning and service development. Understanding more about the type and frequency of abuse (and the perpetrators) facilitates prevention of abuse. The paper aims to discuss these issues. Design/methodology/approach – All clients allocated to a psychologist between 2009 and 2011 were included in this survey. The psychologist reported whether the client had experienced any abuse over their lifetime. Information regarding the type of abuse experienced, the relationship to the abuser, and the number of different episodes of abuse was recorded. Findings – Of the 695 clients in the survey 25 per cent had experienced abuse. Of this 25 per cent, 46 per cent were men and 54 per cent were women. In all, 23 per cent of the group who had experienced abuse were referred to the service as a direct result of abuse, whilst 77 per cent were referred for another reason. The most prevalent types of abuse were emotional (27 per cent), sexual (24 per cent), physical (20 per cent), and neglect (12 per cent). Originality/value – Prevalence rates within this study are broadly in line with the existing literature. However, differences included high levels of emotional abuse, and high frequency of abuse perpetrated by women, and by family members. Psychology services should routinely screen for abuse experiences and be alert to the possibility of abuse from female caregivers.

Accessible Summary We held an anxiety group for people with learning disabilities The group ran for 6 weeks and eight people came After the group, we found out if people felt better. We did this by asking them what was good about the group and asking them to fill out questionnaires. Summary 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.

Objective:Policy directives (e.g. Valuing People, 2001) require service users, including those with learning disabilities, to be consulted about their experiences of accessing health care services. However, people with learning disabilities are less likely to be asked about their experiences and find it more difficult to use traditional methods of feedback (e.g. written forms) than people without a learning disability. Furthermore, people with a learning disability who also experience mental health problems are doubly disadvantaged in terms of contributing their feedback to services. The current study aimed to explore the experiences of people who have used psychiatric inpatient services for people with learning disabilities. This would facilitate service developments and allow service users an experience of giving detailed feedback and of being listened to. It would also increase our knowledge and skills around using qualitative research methodologies with people with learning disabilities and mental health difficulties.Methods:This is a retrospective, qualitative study using data collected through semi-structured interviews. Interview transcripts were analysed using Interpretative Phenomenological Analysis.Results:Participants’ responses focused on seven super-ordinate themes: (i) Reason for Admission; (ii) Staff; (iii) Communication; (iv) The Institution; (v) Illness Framework; (vi) Interventions; and (vii) Ideas for Improvements.Conclusions:Participants contributed a range of valuable feedback that has implications for service practice and development. Participants were able to use this methodology, and further qualitative research with participants with learning disabilities and mental health difficulties should be encouraged. Suggestions for further research are outlined.

The number of parents with a learning disability is growing rapidly, as the closure of institutions and the rise of community living encourage this population to take on roles that were previously denied to them (DoH, 2001). People with a learning disability are seen as people first, with the right to be a parent and raise a child, a valued role in society. The rise in the number of parents with a learning disability can also be attributed to the discontinuation of enforced sterilisation and increasing opportunities to form relationships in which consensual sex is accepted and supported (Martin & Ticktum, 1987). Accordingly, the research on the ability of parents with learning disability to provide adequate parenting is expanding. However, research on the effect on the child of having a parent with a learning disability is still limited. This article will first look at the literature on factors affecting the ability of parents with a learning disability to care for their children adequately. The effects of having a parent with a learning disability will then be considered, and finally the implications for clinical practice will be outlined.

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.