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Reporting of use of coercive measures from a Dutch perspective
- Authors:
- FREDERIKS Brenda J.M., et al
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 11(2), 2017, pp.65-73.
- Publisher:
- Emerald
Purpose: The purpose of this paper is to advance a number of outlooks on the reporting of the use of coercive measures in the care for persons with intellectual disabilities. The following questions will be discussed: which forms of involuntary care should be externally reported and how is this external reporting influenced by environmental and other factors? Design/methodology/approach: This paper describes an important part of the New Dutch Care and Coercion Act (Wet zorg en dwang) concerning reporting the use of coercive measures. The implications of reporting the use of coercive measures have been discussed at a meeting for experts in mental health law and the care of people with an intellectual disability. The issue has been presented to the participants as neutrally as possible, so as to provide the researchers a comprehensive picture of the different views on reporting the use of coercive measures. The outcome of this meeting has served as the input for a further step in the research – using the Delphi method – in order to address the issue comprehensively. Findings: The Dutch legislation on reporting involuntary care implies that measures carried out only in the face of resistance should be externally reported. The experts that participated in this study endorse the importance of a real-time external reporting system. They believe that standardized and reliable external reporting requires involuntary care, the categories of involuntary care and the environmental and other factors that affect external reporting to be defined more concretely. They regard environmental and other factors as decisive for assessing whether a measure constitutes involuntary care. This in turn, therefore, has consequences for whether such incidents should be reported. Research limitations/implications: Many concepts in the new Dutch Care and Coercion Act (Wet zorg en dwang) are not formally defined. Instead, the legislator has left it to those in the field to decide how they should be interpreted. This prompted many questions from those attending the expert meeting and in our own analysis. The researchers could possibly have resolved this confusion during the meeting by formulating more detailed definitions of terms such as “resistance” and “involuntary care” beforehand. The disadvantage of this, however, would have been that those attending the meeting would have had no opportunity to define the terms on the basis of their own expertise. As a result, the researchers have obtained all relevant information comprehensively to use as the input for the next step of the research, which employs the Delphi method. Practical implications: This viewpoint emphasises the need to take a wide range of factors into account throughout the process in order to establish whether care can be seen as involuntary. The researchers regard the care providers’ expertise in dealing with these factors – client factors, and behavioural or environmental factors, for example – as being of essential importance if care is to be recognised as involuntary and reported as effectively as possible. Therefore, the researchers discuss whether the legal position of clients is protected if care providers register only those forms of involuntary care where there is obvious resistance. In this case, many forms of resistance are overlooked, which may be to the detriment of the legal protection of clients with intellectual disabilities. However, the system in the UK shows that it can be quite complicated to develop a clear definition of involuntary care that is usable in practice, without giving rise to an enormous amount of bureaucracy and thus distracting from the real issue: protecting the legal position of clients with an intellectual disability. Originality/value: Academic papers clearly demonstrate that external reporting of involuntary care has not yet become properly established, either in the Netherlands or elsewhere, such as in the UK. This paper seeks to provide insights into new Dutch legislation about external reporting of involuntary care. By organising a meeting with experts, the factors that have so far acted as obstacles in the reporting of involuntary care are problematized. The findings of this paper will help to further the process of developing an effective system for reporting involuntary care. (Publisher abstract)
Perceptions and expectations of regular support meetings between staff and people with an intellectual disability
- Authors:
- REUZEL Ellen, et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 42(2), 2017, pp.142-150.
- Publisher:
- Taylor and Francis
Background: Client-centred models of care emphasise the importance of collaborative working between staff and clients with an intellectual disability (ID). How people with an ID perceive the nature of their engagement with staff is relatively unknown. This study investigated the perceptions of staff and people with an ID about the goals for their meetings and what aspects of the meetings they viewed as important. Method: Interviews were carried out with 9 client–staff dyads. Prior to their meeting, staff and clients were asked about their expectations. Afterwards, both parties were asked about what they believed happened during the interaction. The participants’ answers were subjected to a thematic analysis. Results: People with an ID appreciated the opportunity to tell their story and valued reliable, practical support and advice. A trusting relationship was important to both clients and staff. Only staff viewed promoting clients’ autonomy as important. Conclusion: Staff and people with an ID appear to differ in their expectations and perceptions regarding regular support meetings. (Edited publisher abstract)
The nature and rate of behaviour that challenges in individuals with intellectual disabilities who have hearing impairments/deafness (a longitudinal prospective cohort survey)
- Authors:
- BUSKERMOLEN Willem Meindert, HOEKMAN Joop, ALDENKAMP Albert Pierre
- Journal article citation:
- British Journal of Learning Disabilities, 45(1), 2017, pp.32-38.
- Publisher:
- Wiley
Background: In this article, the authors describe a study of the prevalence of behaviour that challenges and which internal factors are related to behaviour that challenges in 21 people (fourteen are male, seven are female, varying in age from 12.4 to 42 years; mean 26.6, SD 7.27) with intellectual disabilities who have hearing impairments. Materials and Methods: Data were obtained by recording behaviour on a daily basis during one year using the ‘Individual Behaviour Observation and Rating Scale’ that was developed especially for this study. Results: It was found that 100% of the participants in this study showed behaviour that challenges, although this was not observed every day in each participant. Prevalence rates during a year varied from 1.8% to 77.3%. On average, the prevalence rate was 28.9%. The auhtors found a significantly negative correlation between behaviour that challenges and delay of communication as well as the level of social independence. They also found that in people with autism spectrum disorder, the prevalence of behaviour that challenges was significantly higher than in people without autism spectrum disorder. The level of intellectual disability as well as the level of hearing impairments was not related to the prevalence of behaviour that challenges. Conclusion: Because there are several patterns of increasing and decreasing behaviour that challenges throughout the day, it is not possible to draw one conclusion on this issue for the whole group. However, where certain individual patterns can be recognised, it is possible to make individual plans for the clients. This could mean an improvement in daily care and as a result an improvement in the quality of life for people with intellectual disability who have hearing impairments. Implications for clinical practice are discussed. (Edited publisher abstract)
Personality and behavioural changes do not precede memory problems as possible signs of dementia in ageing people with Down syndrome
- Authors:
- BLOK J.B., SCHEIRS J.G.M., THIJM N.S.
- Journal article citation:
- International Journal of Geriatric Psychiatry, 32(12), 2017, pp.1257-1263.
- Publisher:
- Wiley
Objective: The objective was to find out whether changes in personality and adaptive functioning or memory processes decline first in ageing people with Down syndrome. Methods: The authors measured these variables cross-sectionally in a Dutch sample (22 to 62 years of age) of 68 institutionalised people with Down syndrome. Results: The scores on all the variables except one of the temperament scales were found to decline gradually with increasing age, but deterioration of episodic memory started earlier. Conclusions: The authors argued that a subset of their sample suffered from dementia. Furthermore, the data suggested that immediate memory impairment is one of the earliest signs of the disease in people with Down syndrome, just as it is in the general population. (Edited publisher abstract)
Safety first! The topic of safety in reversed integration of people with intellectual disabilities
- Authors:
- VENEMA Eleonora, VLASKAMP Carla, OTTEN Sabine
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 14(2), 2017, pp.146-153.
- Publisher:
- Wiley
Background: Physical integration is believed to be a precondition for social integration. One might expect that in so-called reversed integration, where people without intellectual disabilities (ID) actively choose to live next to people with ID, conditions for physical integration are more optimal, and social integration is enhanced. If this hypothesized benefit of reversed integration settings indeed holds, however, is yet unknown. Specific aims: The aim of the present study is to examine barriers for social integration of people with intellectual disabilities (ID). In this context, the present article focuses on the role of safety and safety concerns. Method: A semi structured interview was conducted with 28 direct support professionals (DSPs), 25 family members, and 25 neighbours, aimed at their attitude toward social integration in a reversed integration neighbourhood. Several topics were dealt with, like the neighbourhood and contact between people with ID and neighbours. There were no explicit questions about safety in the interview. Findings: The topic of safety was spontaneously mentioned 90 times by 26 DSPs, 15 times by 9 neighbours, and 36 times by 18 family members. Three main themes were found in the total group of statements touching upon the issue of safety: environmental aspects, client characteristics, and working conditions. The most often mentioned sub-themes were the openness of the neighbourhood and the traffic. Discussion: In reversed integration, safety is still a highly relevant topic and of great concern for the DSPs and the family members. DSPs are more concerned with controlling risks and keeping everybody safe than looking at the opportunities the new environment offers, like enhancing social integration. (Edited publisher abstract)
Alleviating parenting stress in parents with intellectual disabilities: a randomized controlled trial of a video-feedback intervention to promote positive parenting
- Authors:
- HODES Marja W., et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 30(3), 2017, p.423–432.
- Publisher:
- Wiley
Background: Adapted parenting support may alleviate the high levels of parenting stress experienced by many parents with intellectual disabilities. Methods: Parents with mild intellectual disabilities or borderline intellectual functioning were randomised to experimental (n = 43) and control (n = 42) conditions. Parents in both groups received care-as-usual. The experimental group also received an adapted version of video-feedback intervention for positive parenting and learning difficulties (VIPP-LD). Measures of parenting stress were obtained pre-test, post-test and 3-month follow-up. Results: Randomisation to the experimental group led to a steeper decline in parenting stress related to the child compared to the control group (d = 0.46). No statistically significant effect on stress related to the parent's own functioning or situation was found. Conclusions: The results of the study suggest the feasibility of reducing parenting stress in parents with mild intellectual disability (MID) through parenting support, to the possible benefit of their children. (Edited publisher abstract)