Defining consensus norms for palliative care of people with intellectual disabilities in Europe using Delphi methods: A White Paper from the European Association of Palliative care

Background: People with intellectual disabilities often present with unique challenges that make it more difficult to meet their
palliative care needs.
Aim: To define consensus norms for palliative care of people with intellectual disabilities in Europe.
Design: Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus
were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for
Palliative Care reviewed and approved the final version.
Setting and participants: Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members’ networks.
Results: A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training
and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents’ comments, several items were modified and one item was deleted.
Conclusion: This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice.

Managing Risk in a Culture of Rights: Providing Support and Treatment in Community-Based Settings for Persons with Intellectual Disabilities who Sexually Offend

People with intellectual disability who sexually offend commonly live in community-based settings since the closing of all institutions across the province of Ontario. Nine (n=9) front line staff who provide support to these individuals in three different settings (treatment setting, transitional setting, residential setting) were interviewed. Participants responded to 47 questions to explore how sex offenders with intellectual disability can be supported in the community to prevent re-offenses. Questions encompassed variables that included staff attitudes, various factors impacting support, structural components of the setting, quality of life and the good life, staff training, staff perspectives on treatment, and understanding of risk management. Three overlapping models that have been supported in the literature were used collectively for the basis of this research: The Good Lives Model (Ward & Gannon, 2006; Ward et al., 2007), the quality of life model (Felce & Perry, 1995), and variables associated with risk management. Results of this research showed how this population is being supported in the community with an emphasis on the following elements: positive and objective staff attitude, teamwork, clear rules and protocols, ongoing supervision, consistency, highly trained staff, and environments that promote quality of life. New concepts arose which suggested that all settings display an unequal balance of upholding human rights and managing risks when supporting this high-risk population. This highlights the need for comprehensive assessments in order to match the offender to the proper setting and supports, using an integration of a Risk, Need, Responsivity model and the Good Lives model for offender rehabilitation and to reduce the likelihood of re-offenses.

Does training improve understanding of core concepts in cognitive behaviour therapy by people with intellectual disabilities? A randomized experiment

Background. People with intellectual disabilities (ID) experience similar or even higher rates of mental health problems than the general population and there is a need to develop appropriate treatments. Cognitive behaviour therapy (CBT) is effective for a wide range of disorders in the general population. However, there is some evidence that people with ID may lack the cognitive skills needed to take part in CBT. Aims. To test if people with ID can learn skills required for CBT, specifically the ability to distinguish between thoughts, feelings, and behaviours and to link thoughts and feelings (cognitive mediation). Method. A randomized independent groups design was used to examine the effect of training in CBT on two tasks measuring CBT skills. Thirty-four adults with ID were randomly allocated to the experimental condition ðN ¼ 18Þ or to the control condition ðN ¼ 16Þ. CBT skills were assessed blind at baseline and after the intervention. Results. The training led to significant improvements in participants’ ability to link thoughts and feelings, and this skill was generalized to new material. There was no effect of training on participants’ ability to distinguish amongst thoughts, feelings, and behaviours. People with ID can, therefore, learn some skills required for CBT. This implies that preparatory training for CBT might be useful for people with ID. The results might be applicable to other groups who find aspects of CBT difficult.

Can a computerised training paradigm assist people with intellectual disabilities to learn cognitive mediation skills? A randomised experiment

Aims: The aim was to examine whether specific skills required for cognitive behavioural therapy (CBT) could be taught using a computerised training paradigm with people who have intellectual disabilities (IDs). Training aimed to improve: a) ability to link pairs of situations and mediating beliefs to emotions, and b) ability to link pairs of situations and emotions to mediating beliefs. Method: Using a single-blind mixed experimental design, sixty-five participants with IDs were randomised to receive either computerised training or an attention-control condition. Cognitive mediation skills were assessed before and after training. Results: Participants who received training were significantly better at selecting appropriate emotions within situation beliefs pairs, controlling for baseline scores and IQ. Despite significant improvements in the ability of those who received training to correctly select intermediating beliefs for situation-feelings pairings, no between-group differences were observed at post-test. Conclusions: The findings indicated that computerised training led to a significant improvement in some aspects of cognitive mediation for people with IDs, but whether this has a positive effect upon outcome from therapy is yet to be established. (C) 2015 Elsevier Ltd. All rights reserved.

Using computers to teach people with intellectual disabilities to perform some of the tasks used within cognitive behavioural therapy: a randomised experiment

Aims Training has been shown to improve the ability of people with intellectual disabilities (IDs) to perform some cognitive behavioural therapy (CBT) tasks. This study used a computerised training paradigm with the aim of improving the ability of people with IDs to: a) discriminate between behaviours, thoughts and feelings, and b) link situations, thoughts and feelings. Methods Fifty-five people with mild-to-moderate IDs were randomly assigned to a training or attention-control condition in a single-blind mixed experimental design. Computerised tasks assessed the participants’ skills in: (a) discriminating between behaviours, thoughts and feelings (separately and pooled together), and (b) cognitive mediation by selecting appropriate emotions as consequences to given thoughts, and appropriate thoughts as mediators of given emotions. Results Training significantly improved ability to discriminate between behaviours, thoughts and feelings pooled together, compared to the attention-control condition, even when controlling for baseline scores and IQ. Large within-group improvements in the ability to identify behaviours and feelings were observed for the training condition, but not the attention-control group. There were no significant between-group differences in ability to identify thoughts, or on cognitive mediation skills. Conclusions A single session of computerised training can improve the ability of people with IDs to understand and practise CBT tasks relating to behaviours and feelings. There is potential for computerised training to be used as a “primer” for CBT with people with IDs to improve engagement and outcomes, but further development on a specific computerised cognitive mediation task is needed.

The impact of sexual esteem, body esteem, and sexual satisfaction on psychological well-being in people with physical disability

The current study investigated the association between sexuality and psychological well-being in people with physical disabilities. A total of 1,196 participants completed the study. There were 748 participants who had a physical disability and 448 participants who were able-bodied. The results demonstrated that sexual esteem, body esteem, and sexual satisfaction were strong predictors of self-esteem and depression among people with physical disability, and that this relationship was stronger among people with physical disability than able-bodied participants. It was also found that body esteem was more closely associated with self-esteem in disabled women, while sexual esteem was more closely associated with self-esteem in disabled men. The results of the study suggest that researchers and clinicians who are concerned with the psychological health of people with physical disability should consider strategies to improve the body esteem and sexual well-being of people with physical disabilities.

Sexual esteem, sexual satisfaction, and sexual behavior among people with physical disability

This study investigated the association between the severity and duration of physical disability and sexual esteem, sexual depression, sexual satisfaction, and the frequency of sexual behavior. A total of 1,196 participants completed the study. There were 748 participants (367 males, 381 females) who had a physical disability and 448 participants (171 males, 277 females) who were able-bodied. The age range of participants was 18–69 years, with a mean age of 36.39 years (SD = 10.41). The results demonstrated that people with more severe physical impairments experienced significantly lower levels of sexual esteem and sexual satisfaction and significantly higher levels of sexual depression than people who had mild impairments or who did not report having a physical impairment. The study also found that people with more severe physical disabilities engaged in mutual sexual activity significantly less frequently. Women with physical disabilities had significantly more positive feelings about their sexuality and significantly more frequent mutual sexual experiences than their male counterparts. For people with physical disabilities, the frequency of oral sex and nude cuddling were significant predictors of sexual satisfaction in men, while the frequency of deep kissing predicted sexual satisfaction in women. Furthermore, the viewing of erotica was significantly related to sexual dissatisfaction in men. Finally, it was found that people who had experienced their physical impairment for a longer period of time reported significantly more positive feelings about their sexuality. Implications of these findings are discussed and suggestions are made for future research.

Relationships, sexuality and adjustment among people with physical disability.

The current study investigated the association between relationship status and the psychological adjustment, sexual esteem and sexual behaviour of people with and without physical disability. A total of 1196 participants completed the study, 748 participants (367 men, 381 women) had a physical disability and 448 participants (171 men, 277 women) were able-bodied. The age range of participants was 18 to 69 years, with a mean age of 36.39 years (SD=10.41). The results demonstrated that physical disability and its severity were related to an increased likelihood of being single. Men with physical disabilities were more likely than women to be single. In terms of psychological adjustment, single people with physical disabilities were more depressed than those who had a partner they did not live with. However, they were not significantly disadvantaged in this area when compared to married people and those in de facto relationships. Relationship status was strongly related to sexual wellbeing in people with and without physical disability, with single people reporting lower levels of sexual satisfaction and sexual esteem as well as less frequent mutual sexual activity. However, married people with physical disabilities reported lower levels of sexual wellbeing than the people who had partners they did not live with. This suggests that among couples where a partner has a physical disability, marriage and live-in relationships may add burdens that do not exist in more casual relationships.

The relationship between residence and the pharmacological management of challenging behavior in individuals with intellectual disability

Many individuals with intellectual disability are administered psychotropic drugs to manage their challenging behavior. The increased relocation of individuals from institutions into community-based accommodation during the past decade provides an opportunity to examine the relationship between setting and drug administration. This study provides acomparison of drug use according to the type of residential facility of 873 individuals reported to have been administered drugs for behavioral restraint in March 2000, with 762 individuals reported in March 1993. In 2000, individuals in institutions were reported toreceive a moderately greater number of drugs concurrently than those in the community. However, there were no differences in the proportion of individuals prescribed drugs relative to the total population living in the respective settings. This is in contrast to the findings from 1993, where drug use was greater in individuals who were living in institutions. It was also more common for individuals who continued to be medicated across time to have previously lived in an institution. Although relocation into the community may be associated with improved living conditions, it is important to recognize that this change in living conditions is not necessarily associated with less use of drugs to manage behavior.

Individual characteristics associated with community intergration of adults with intellectual disability

Background The purpose of this study was to identify individual characteristics associated with community integration of adults with an intellectual disability.

Method A group of 37 males with high support needs, and who had previously lived in a large institution, participated in the study. Using proxy respondents, data were collected on three measures of community integration, and on the participants' adaptive and maladaptive functioning. Chronological age and years of institutionalisation were also examined for their associations with community integration.

Results Level of daily living skills predicted life circumstances. There were no significant associations among the measures of community integration.

Conclusions The examination of the relationships between participant characteristics and community integration produced similar conclusions to previous research. Only daily living skills scores were uniquely associated with variations in life circumstances. Further research is required to determine whether these findings will be replicated with other cohorts of participants.