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Background As patterns of morbidity and mortality are changing, more people with intellectual disabilities develop cancer or other life‐limiting illness. This paper reviews the literature around the need of people with intellectual disabilities for palliative care.Methods A range of databases and the World Wide Web were searched for relevant papers, book chapters, training and information materials, unpublished materials and policy guidelines. Publications from 1995 to 2005 are included.Findings Although there has been a steady increase in published materials in recent years, research data around the palliative care needs of people with intellectual disabilities remain scarce. Case reports are the most prevalent method of exploring pertinent issues. The paper presents an overview of issues identified in the literature, with a particular focus on pain and symptom assessment, ethical issues, service planning and training needs.Conclusion There are significant gaps in current knowledge. The authors make recommendations for future areas of research and development.

While information from other countries suggests varying degrees of knowledge about foetal alcohol spectrum disorders (FASD), understanding of the condition among UK health professionals is unclear. This mixed methodology study aims to ascertain the UK picture. It comprised a standardised FASD questionnaire completed by 505 professionals and focus groups using semi-structured interviews. Among those professionals who attended focus groups, five broad themes were identified: lack of knowledge: need for consistent guidance; stigma: need for early intervention; and need for support services. The study highlights a need for training and improved recognition by professionals. Reluctance to diagnose could be due to associated stigma and therefore not merely reflect lack of knowledge. As an avoidable disorder the importance of prevention, as well as early identification of FASD to avert secondary disabilities such as mental health issues, highlights the need for specialist diagnostic and support services.

Background  Individuals with Prader‐Willi syndrome (PWS) are at increased risk for mental health and behaviour problems, such as skin‐picking and compulsive behaviours. Prevalence and functional assessment of skin‐picking, and its association with compulsive behaviour and self‐injury, were investigated in a large group of individuals with PWS (n = 119).Materials and Methods  Data on demographic characteristics, skin‐picking and compulsive and self‐injurious behaviours were collected by questionnaires. Behavioural function of skin‐picking was assessed by administering the Questions About Behavioral Function scale.Results  Skin‐picking was found in 86% of the sample, and correlated positively with compulsive behaviours. No associations were found between skin‐picking and other variables. Functional assessment suggest that in most cases (i.e. 70%) skin‐picking primarily had non‐social functions.Conclusions  Skin‐picking and compulsive behaviours are common in PWS. In most cases, skin‐picking may be maintained by contingent arousal reduction. Controlled studies on behavioural treatment are lacking. Implications for treatment selection are discussed.

AbstractIn 2018, the authors published their analysis of nine online case reports by the Euthanasia Review Committee in the Netherlands, involving people with intellectual disability and/or autism spectrum disorder who were given euthanasia. In this commentary, they reflect further on the challenges of assessing "unbearable suffering without prospect of improvement," which is one of the Dutch legal due care criteria. Two more recent case reports are presented in detail, where doctors struggled to assess and sometimes came to divergent conclusions. In both cases, limitations resulting from the intellectual disability and autism spectrum disorder were seen by physicians as causes of unbearable suffering, leading them to agreeing to the patient's euthanasia request. The authors discuss their concern about the implications of accepting the effects of lifelong disability as reasons for euthanasia, not only for individuals but for society as a whole.

Background: Euthanasia and assisted suicide (EAS) have been legally possible in the Netherlands since 2001, provided that statutory due care criteria are met, including: (a) voluntary and well-considered request; (b) unbearable suffering without prospect of improvement; (c) informing the patient; (d) lack of a reasonable alternative; (e) independent second physician's opinion. 'Unbearable suffering' must have a medical basis, either somatic or psychiatric, but there is no requirement of limited life expectancy. All EAS cases must be reported and are scrutinised by regional review committees (RTE). The purpose of this study was to investigate whether any particular difficulties arise when the EAS due care criteria are applied to patients with an intellectual disability and/or autism spectrum disorder. Methods: The 416 case summaries available on the RTE website (2012-2016) were searched for intellectual disability (6) and autism spectrum disorder (3). Direct content analysis was used on these nine cases. Results: Assessment of decisional capacity was mentioned in eight cases, but few details given; in two cases, there had been uncertainty or disagreement about capacity. Two patients had progressive somatic conditions. For most, suffering was due to an inability to cope with changing circumstances or increasing dependency; in several cases, suffering was described in terms of characteristics of living with an autism spectrum disorder, rather than an acquired medical condition. Some physicians struggled to understand the patient's perspective. Treatment refusal was a common theme, leading physicians to conclude that EAS was the only remaining option. There was a lack of detail on social circumstances and how patients were informed about their prognosis. Conclusions: Autonomy and decisional capacity are highly complex for patients with intellectual disabilities and difficult to assess; capacity tests in these cases did not appear sufficiently stringent. Assessment of suffering is particularly difficult for patients ...

BackgroundSolution‐focused coaching (SFC) helps individuals or groups to achieve their preferred outcomes by evoking and co‐constructing solutions. SFC has been shown to be helpful for persons with ID as well as for teams coaching people with ID. Nominal Group Technique (NGT) helps to organize people's thoughts with regard to a single question. This study examines the perceived strengths of and recommendations for SFC for teams coaching people with ID via NGT, as well as the extent to which the NGT results reflect the results of an SFC questionnaire.MethodsIn total, 54 staff members participated in SFC. Of these, 18 participated in NGT, while 36 completed the SFC questionnaire. The strengths of and recommendations for SFC were obtained via NGT. Interrater agreement was calculated via Cohen's kappa.ResultsThe strengths of SFC include 'exploring hidden successes' and 'focusing on solutions'. It was recommended that 'the results be consolidated in follow‐up meetings'. The participants agreed on the content of the strengths and recommendations, but differed in terms of priorities (κ ≤ 0.1).Conclusions
NGT is a valuable tool in exploring people's opinions and priorities, but further research is needed to elucidate the perceived priorities of SFC for teams coaching persons with ID.

AbstractOrganizations providing services to persons with intellectual disabilities (ID) are complex because of many interacting stakeholders with often different and competing interests. The combination of increased consumer demand and diminished resources makes organizational planning a challenge for the managers of such organizations. Such challenges are confounded by significant demands for the optimization of resources and the goal to reduce expenses and to more effectively and efficiently use existing resources while at the same time providing high quality services. The authors explore the possibilities of using "system dynamics modelling" in organizational decision‐making processes related to resource allocations. System dynamics suggests the application of generic systems archetypes as a first step in interpreting complex situations in an organization. The authors illustrate the application of this method via a case study in one provider organization in the Netherlands. The authors contend that such a modeling approach can be used by the management of similar organizations serving people with ID as a tool to support decision making that can result in optimal resource allocation.

Research suggests that caring for a child with Fetal Alcohol Spectrum Disorders (FASD) creates unique challenges for carers. To investigate this, three focus groups and education sessions, attended by 66 people, were held in the UK. Knowledge about FASD and its impact on families was evaluated using the focus groups, the Parental Stress Index and knowledge questionnaire. Eight broad themes were identified from thematic analysis of the focus groups. The findings suggest more support is needed for carers of children with FASD, especially as carers grow older. The implication for current practice should be further evaluated in this group.

AbstractProvider organizations specializing in supporting people with intellectual disabilities (ID) are under pressure because of public policy reforms, changes in society, and increased customer expectations. The combination of all these factors makes long‐term decision making a challenge for the managers of such organizations. The majority of research examining decision making in ID service organizations has commonly studied the issue from the perspective of healthcare providers. The authors contend that the degree of success of ID support providers depends on their ability to appreciate the views and interests of service receivers and frontline workers, the most important components in the system. Having a comprehensive picture of key stakeholders' overall perspectives on problem situations can enhance managers' understanding of the behavior of a complex system they manage. The authors suggest that the combination of qualitative system dynamics modeling and cognitive mapping techniques can facilitate collaborative representation of the stakeholders' views in a way that can support decision making in complex healthcare systems. The authors illustrate the application of this combined method through a case study in one ID supports provider in the Netherlands and demonstrated the possibilities of using structured stakeholders' perspectives related to flexible pool schedule shifts, one of the key resource allocation dilemmas in the organization, for organizational decision making.

BackgroundPeople with intellectual disabilities face barriers that affect their sexual health. Sex education programmes have been developed by professionals working in the field of intellectual disabilities with the aim to overcome these barriers. The aim of this study was to explore the development of these programmes.MethodsSex education programmes geared to people with intellectual disabilities were examined in the context of the Intervention Mapping protocol. Data were obtained via interviews with the programme developers.ResultsAll programmes lack specific programme outcomes, do not have a theoretical basis, did not involve members of relevant groups in the development process and lack systematic evaluation.ConclusionsBased on our findings and the literature, we conclude that these programmes are unlikely to be effective. Future programmes should be developed using a more systematic and theory‐ and evidence‐based approach.

AbstractSolution‐focused coaching (SFC) represents a short‐term, future‐focused, and person‐directed therapeutic approach that helps people focus on solutions rather than problems. Thirteen cases of SFC of staff dealing with people with severe and moderate intellectual disabilities (S/MID) are described. In all 13 cases, the progress toward the team goal, proactive thinking of staff, and the quality of the relationship (QOR) between staff and people with S/MID were measured directly before SFC, directly after SFC, and 6 weeks after SFC. After SFC, progress toward the team goal was found in seven out of 13 teams, improvement of proactive thinking was found in 5/10 teams and improvement of the QOR was found in 7/13 teams. With regard to individual staff members, improvement of proactive thinking was found in 12/34 staff members and improvement of the QOR was found in 22/42 staff members. The authors note that SFC stimulates dealing with support problems in a behavioral, proactive way and that SFC can be a useful approach to build useful relationships. The findings are in line with results of earlier research on the value of solution‐focused brief therapy applied to carers (parents or professionals) of people with ID. Future investigation of SFC, preferably using a randomized controlled design, could test the hypothesis that SFC can increase self‐efficacy and proactive thinking in teams, can positively alter staff's perceptions of people with ID, and that teams find it a useful approach.

AbstractSolution‐focused brief therapy (SFBT) is a form of behavior therapy that focuses on evoking desired behavior rather than on the existing problem behavior. To illustrate the use of this form of therapy, the authors undertook a study of 10 case studies of applications of SFBT with people with a mild intellectual disability (MID). For all 10 cases, before SFBT, after SFBT, and during a follow‐up after 6 weeks, the following measurements were taken: assessment of quality of life and assessment of maladaptive behavior as well as goal attainment according to people with MID and according to carers. It was found that SFBT treatments contributed to improvements in psychological functioning and decreases in maladaptive behavior. In addition, achievement of goal attainments were noted according to both people with MID and their carers. The positive changes evident after SFBT proved sustainable during follow‐up. Treatment strategies and therapeutic alliances employed were usually assessed as positive by the participants. Although the study had limitations due to the lack of a control group and the small number of cases, the fact that several case studies showed positive treatments results did indicate the effectiveness of SFBT for people with MID.

AbstractSolution‐Focused Brief Therapy (SFBT) is a short‐term, goal‐focused, and client‐directed therapeutic approach that helps the client construct solutions rather than dwell on problems. SFBT has rarely been used with clients with intellectual disabilities (ID). The authors discuss how this relatively new form of therapy in an adapted form can be made suitable for clients with ID. The assumptions of this therapeutic approach, the types of problems and settings addressed by SFBT, and a description of the interventions used in SFBT are considered. Indications and contraindications for SFBT and empirical data on the effectiveness of the therapy are discussed both with regard to clients with or absent ID. The authors suggest that tailoring SFBT to clients with ID can be done by using simple language, modified interventions, and inserting other adaptations into the therapy process. In practice, even though clinical practice experience with SFBT has shown great promise, empirical research into SFBT applications with clients with ID is lacking. Research is thus needed to demonstrate whether SFBT with this target group can yield sufficiently effective results and to what extent SFBT is valued by clients and their carers.