Reporting of use of coercive measures from a Dutch perspective

2017 ◽  
Vol 11 (2) ◽  
pp. 65-73 ◽  
Author(s):  
Brenda Frederiks ◽  
Baukje Schippers ◽  
Moniek Huijs ◽  
Sofie Steen

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.

2019 ◽  
Vol 20 (4) ◽  
pp. 162-178
Author(s):  
Aoife Mahon ◽  
Elizabeth Tilley ◽  
Gurch Randhawa ◽  
Yannis Pappas ◽  
Jitka Vseteckova

Purpose Individuals with intellectual disability(ies) are living longer contributing to an overall increase in the average age of caregivers. The purpose of this paper is to review the literature on the physical, social and psychological needs of ageing carers of individuals with intellectual disability(ies) in the UK. Design/methodology/approach A scoping review framework was used to identify literature from eleven databases, the grey literature and the references lists of relevant studies. Only primary research studies that discussed the needs of non-professional carers, aged 65+ years old, of individuals with intellectual disability(ies) in the UK were included. No date restrictions were applied. Thematic analysis was used to narratively synthesise findings. Findings Six studies were included. Five key themes were identified: Living with fear, lack of information, rebuilding trust, proactive professional involvement and being ignored. Housing and support information is not communicated well to carers. Professionals require more training on carer needs and trust must be rebuilt between carers and professionals. Proactive approaches would help identify carer needs, reduce marginalisation, help carers feel heard and reduce the risk of care crisis. Greater recognition of mutual caring relationships is needed. Originality/value This review highlighted the needs of older caregivers for individuals with intellectual disability(ies) as well as the need for more high-quality research in this field. The information presented in this review may be considered by primary care providers and funding bodies when planning future support for this growing population of carers.


2021 ◽  
Vol 15 (1) ◽  
pp. 20-32
Author(s):  
Gregg Harry Rawlings ◽  
Christopher Gaskell ◽  
Keeley Rolling ◽  
Nigel Beail

Purpose The novel coronavirus and associated restrictions have resulted in mental health services across the UK having to adapt how they deliver psychological assessments and interventions. The purpose of this paper is to explore the accessibility and prospective acceptability of providing telephone and videoconference-mediated psychological interventions in individuals with intellectual disabilities. Design/methodology/approach As part of a service evaluation, a mixed-methods questionnaire was developed and completed by clients who had been referred for psychological therapy at an adult intellectual disabilities’ community health service in the north of England. All clients were assessed using the Red/Amber/Green (RAG) system by a consultant clinical psychologist for risk and potential suitability for indirect service delivery given their ability and needs. Findings Overall, 22 clients were invited to take part, of which, only seven (32%) were accepting of telephone or videoconference-mediated psychological therapy. Most of the clients were unable to engage in video-conference therapy and therefore, only suitable for phone therapy. This paper presents the remaining findings and discusses the clinical implications and unique considerations for intellectual disability services drawing on the existing literature. Originality/value This is the first paper that the authors are aware of, examining videoconference-mediated psychological therapy in this population. It is hoped the data will be used to help inform practice or policy when using such therapeutic approaches in adults with an intellectual disability.


2017 ◽  
Vol 46 (8) ◽  
pp. 1475-1492 ◽  
Author(s):  
Hannah Meacham ◽  
Jillian Cavanagh ◽  
Amie Shaw ◽  
Timothy Bartram

Purpose The purpose of this paper is to examine how HRM practices enhance and/or impede the employment, participation, and well-being of workers with intellectual disabilities in three hotels located in Australia. Design/methodology/approach The research employs a case study methodology, including interviews with three HR managers, three department managers, 17 workers with intellectual disabilities, and focus groups of 16 supervisors and 24 work colleagues. Findings The research found that the opportunities to participate in work are driven primarily by developing a social climate that enables social cohesion through the altruistic motives of managers/supervisors and reciprocal relationships. Originality/value The findings lend support for the importance of both formal and informal HR practices, such as inclusive recruitment and selection, mentoring, and training and development, as well as individualised day-to-day support provided by supervisors and colleagues, to improve the participation and well-being of workers with an intellectual disability.


2018 ◽  
Vol 24 (6) ◽  
pp. 366-382 ◽  
Author(s):  
Ruth Northway ◽  
Stuart Todd ◽  
Katherine Hunt ◽  
Paula Hopes ◽  
Rachel Morgan ◽  
...  

Background People with intellectual disability are believed to be at risk of receiving poor end-of-life care. Nurses, given their advocacy role and duty to provide compassionate end-of-life care, have the potential to change this situation but research regarding this aspect of their role is limited. Aims This paper thus seeks to answer the question ‘How and when are nurses involved in providing care at end of life for people with intellectual disability?’ Methods A total of 38 intellectual disability care providers in the UK providing support to 13,568 people with intellectual disability were surveyed. Data regarding 247 deaths within this population were gathered in two stages and subsequently entered into SPSSX for analysis. Results Findings revealed that the majority of deaths occurred between the ages of 50 and 69 years, the most commonly reported cause of death being respiratory problems. Both community and hospital-based nurses were involved in supporting individuals during their final 3 months of life, and sometimes more than one type of nurse provided support to individuals. Generally nursing care was rated positively, although room for improvement was also identified. Conclusions Nurses are involved in supporting people with intellectual disability at end of life and appropriate education is required to undertake this role. This may require change in curricula and subsequent research to determine the impact of such change on nursing support to this population.


2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Jacques Bellavance ◽  
Morin Diane ◽  
Catherine Mello

Purpose The behavioral phenotype of fragile X syndrome (FXS) and intellectual disability (ID) proposed by Hagerman et al. (2009) was primarily based on data from male children and teens. The purpose of this study was to promote a better understanding of how this condition manifests in adults. Design/methodology/approach A total of 18 men of FXS were paired with men with Down syndrome on the basis of age and level of ID. A screening checklist was created on the basis of existing scales and the Hagerman et al. (2009) behavioral phenotype and completed by care providers. Findings Five of the 12 features of the phenotype were significantly more present among men with FXS than in men with Down syndrome. Originality/value This study provides partial confirmation for Hagerman et al.’s (2009) behavioral phenotype of FXS among men with moderate ID and identified some traits that warrant further investigation.


2014 ◽  
Vol 8 (4) ◽  
pp. 237-247 ◽  
Author(s):  
Trine Lise Bakken ◽  
Vibeke Gjersoe ◽  
Espen Matre ◽  
Tone Kristiansen ◽  
Arvid Ro ◽  
...  

Purpose – The purpose of this paper is to describe and discuss interventions of stabilisation of emotions and behaviour in adults with post-traumatic stress disorder (PTSD). This topic is understudied in persons with intellectual disability. Design/methodology/approach – The aim of this study was to investigate interventions of stabilisation in persons with more severe intellectual disability; i.e. persons with moderate or severe intellectual disabilities. Five patients in a specialised psychiatric inpatient unit for patients with intellectual disabilities were included. Information about treatment of the patients was collected through case files, observations, and interviews. The authors of this paper followed a training programme for trauma therapists in addition to the inpatient treatment of the five patients. Findings – Six main areas of stabilisation of emotions and behaviour were identified: validation, anxiety relief, treatment of depressed mood, increased mastering of daily activities, protection against anxiety triggers, and facilitated staff communication. Protection from anxiety triggers seems to be a core element of milieu therapy interventions. Interventions for neurotypical PTSD patients, such as exposure therapy may be contraindicated for patients with more severe intellectual disabilities. Originality/value – Research on interventions of stabilisation towards adults with more severe intellectual disabilities is still in its infancy. The case reports may help milieu therapists to facilitate interventions towards patients with moderate or severe intellectual disabilities.


2019 ◽  
Vol 13 (5) ◽  
pp. 204-215
Author(s):  
Mahesh Odiyoor ◽  
Samuel Joseph Tromans ◽  
Regi T. Alexander ◽  
Srinaveen Akbari ◽  
Gill Bell ◽  
...  

Purpose The purpose of this paper is to provide a professional consensus position with regard to the provision of specialist inpatient rehabilitation services for people with intellectual disability (ID), autism and mental health, behavioural or forensic needs in the UK. Design/methodology/approach The concept of rehabilitation is discussed, as well as the functions and goals of specialist inpatient rehabilitation services with regard to the aforementioned contexts. Current use of rehabilitation beds is considered, both on a regional and national scale, as well as various outcome measures, including effectiveness, patient safety and patient experience. Findings There is a clear need for specialist inpatient rehabilitation services, though historically there have been instances of inappropriate admissions, as well as lengthy inpatient stays that could have been significantly reduced with the right type of community support package. Such services should be subjected to rigorous measurement of outcome measures, to determine that patients within such services are receiving a consistently high standard of care. Additionally, amendments to current legal frameworks should be considered, with a view to accommodating for individuals with capacity who require continuous community-based supervision. Originality/value To the best of the author’s knowledge, this is the first article detailing a professional consensus position for specialist inpatient rehabilitation services for people with ID, autism and mental health, behavioural or forensic needs.


Author(s):  
Sarah Ashworth ◽  
Krista Jansen ◽  
Lydia Bullock ◽  
Paul Mooney

Purpose The purpose of this paper is to describe a feasibility study into the development and pilot of a psychoeducational group for people with intellectual disability and co-morbid mental disorder (including mental illness and personality disorder) within forensic settings. Design/methodology/approach “Mind Matters”, a psychoeducational programme for people with an intellectual disability and co-morbid mental disorders is a group based programme in a medium secure hospital, adapted and developed to be suitable for people with intellectual disability therapist multidisciplinary approach was key to its development. An open group on a 16-bedded ward for individuals with mild to moderate intellectual disability and co-morbid mental illness was delivered over a six-week period. Findings The group was positively received in pilot by participants and members of the clinical teams. Attendance and engagement of participants were key measures of the success of the programme. In addition to the apparent increased social skills and motivation to engage with future psychological intervention. Practical implications The authors believe that this approach benefitted both the group members and staff on ward, reinforcing strategies for maintaining positive mental health. It also stimulated engagement, discussion about mental disorders including mental illness, personality disorder and intellectual disabilities. Originality/value This paper shows how a psychoeducational approach to mental disorder and mental health in individuals with an intellectual disability is possible, beneficial and well received.


2014 ◽  
Vol 8 (6) ◽  
pp. 351-353 ◽  
Author(s):  
Iona Campbell

Purpose – The purpose of this paper is to describe a medical student's experience of undergraduate teaching in intellectual disabilities. Design/methodology/approach – This paper presents the reflections of a medical student on the undergraduate intellectual disability teaching. It describes experiences of a placement in this field, and how it may influence future practice. Findings – It is apparent that exposure to intellectual disability training in the undergraduate curriculum can be limited. Much of the work in this area highlights the negative consequences of this when it comes to medical care for individuals with intellectual disabilities. This paper proposes that positive changes may be achieved, by providing medical students with more training in this area. Originality/value – By reflecting on an individual experience through medical school, this paper highlights the positive impact that teaching on intellectual disability can have on medical students, suggesting its value in the undergraduate curriculum.


BMJ Open ◽  
2019 ◽  
Vol 9 (11) ◽  
pp. e032861 ◽  
Author(s):  
Rory Sheehan ◽  
Angela Hassiotis ◽  
André Strydom ◽  
Nicola Morant

ObjectivesUnderstanding patient and carer perspectives is essential to improving the quality of medication prescribing. This study aimed to explore experiences of psychotropic medication use among people with intellectual disability (ID) and their carers, with a focus on how medication decisions are made.DesignThematic analysis of data collected in individual semistructured interviews.Participants and settingFourteen adults with ID, 12 family carers and 12 paid carers were recruited from specialist psychiatry services, community groups, care providers and training organisations in the UK.ResultsPeople with ID reported being highly compliant with psychotropic medication, based on a largely unquestioned view of medication as important and necessary, and belief in the authority of the psychiatrist. Though they sometimes experienced medication negatively, they were generally not aware of their right to be involved in medication decisions. Paid and family carers reported undertaking a number of medication-related activities. Their ‘front-line’ status and longevity of relationships meant that carers felt they possessed important forms of knowledge relevant to medication decisions. Both groups of carers valued decision-making in which they felt they had a voice and a genuine role. While some in each group described making joint decisions about medication with psychiatrists, lack of involvement was often described. This took three forms in participants’ accounts: being uninformed of important facts, insufficiently included in discussions and lacking influence to shape decisions. Participants described efforts to democratise the decision-making process by gathering information, acting to disrupt perceived power asymmetries and attempting to prove their credibility as valid decision-making partners.ConclusionsStakeholder involvement is a key element of medication optimisation that is not always experienced in decisions about psychotropic medication for people with ID. Forms of shared decision-making could be developed to promote collaboration and offer people with ID and their carers greater involvement in medication decisions.


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