Best practice recommendations on the application of seclusion and restraint in mental health services: An evidence, human rights and consensus-based approach.

WHAT IS KNOWN ON THE SUBJECT?: Seclusion and restraint still regularly occur within inpatient mental health services. The Council of Europe requires the development of a policy on for instance age limits, techniques and time limits. However, they only define the outer limits of such a policy by indicating when rights are violated. Within these limits, many choices remain open. Staff and service managers lack clarity on safe and humane procedures. Research literature provides limited and contradictory insights on these matters. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: The study resulted in 77 best practice recommendations on the practical application of restraint and seclusion as last resort intervention in inpatient youth and adult mental health services, including forensic facilities. To our knowledge, this is the first study in which the development of recommendations on this topic is not only based on scientific evidence, but also on an analysis of European human rights standards and consensus within and between expert-professionals and experts-by-experience. This approach allowed to develop for the first time recommendations on time limits, asking for second opinion, and registration of seclusion and restraint. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: The 77 recommendations encourage staff to focus on teamwork, safety measures, humane treatment, age and time limits, asking for second opinion, observation, evaluation and registration when applying seclusion and restraint as last resort intervention. The implementation of the best practice recommendations is feasible provided that they are combined with a broad preventive approach and with collaboration between service managers, staff (educators) and experts-by-experience. Under these conditions, the recommendations will improve safety and humane treatment, and reduce harm to both service users and staff. ABSTRACT: INTRODUCTION: Seclusion and restraint still regularly occur within inpatient mental health services. Professionals lack clarity on safe and humane procedures. Nevertheless, a detailed policy on for instance age limits, techniques and time limits is required. AIM: We developed recommendations on the humane and safe application of seclusion, physical intervention and mechanical restraint in inpatient youth and adult mental health services, including forensic facilities. METHOD: After developing a questionnaire based on a rapid scientific literature review and an analysis of human rights sources stemming from the Council of Europe, 60 expert-professionals and 18 experts-by-experience were consulted in Flanders (Belgium) through a Delphi-study. RESULTS: After two rounds, all but one statement reached the consensus-level of 65% in both panels. The study resulted in 77 recommendations on teamwork, communication, materials and techniques, maximum duration, observation, evaluation, registration, second opinion and age limits. DISCUSSION: Combining an evidence, human rights and consensus-based approach allowed for the first time to develop recommendations on time limits, asking for second opinion and registration. IMPLICATIONS FOR PRACTICE: When combined with a preventive approach and collaboration between service managers, staff (educators) and experts-by-experience, the recommendations will improve safety and humane treatment, and reduce harm to service users and staff.

Meaningful moments of interaction with people with profound intellectual disabilities: Reflections from direct support staff.

BACKGROUND: High-quality, affective relationships are built on meaningful moments of interaction, which are challenging for support staff to establish with people with profound intellectual disabilities. Therefore, we explored what makes a moment of interaction meaningful to support staff and what circumstances facilitate meaningful moments of interaction taking place. METHOD: Five direct support staff took part in unstructured, in-depth interviews. The interviews were analysed using interpretative phenomenological analysis (IPA). Member checks were also conducted. RESULTS: Support staff experienced moments of interaction as meaningful because they felt a connection with a person with profound intellectual disabilities and/or they had the feeling of being meaningful for this person. Staff-related and contextual circumstances facilitating meaningful moments of interaction to take place were described. CONCLUSIONS: Meaningful moments of interaction are highly valued by support staff, who believe these moments are valued by persons with profound intellectual disabilities as well. Implications for daily practice are described.

In search of a novel way to analyze early communicative behavior.

The aim of this study was to develop a coding scheme that enables researchers and practitioners to conduct a detailed analysis of the communicative behavior of young children with significant cognitive and motor developmental delays. Currently, there is a paucity of methods to do conduct such an analysis. For the study, video observations of three different scenarios from 38 children with significant cognitive and motor developmental delays aged between 12 and 54 months, were used. Findings from the video observations served as the primary means for development of the coding scheme, which comprises three main categories - context, partner behavior, and individual behavior - and several subcategories. The coding scheme was used to document the early expressive communicative behavior of persons with significant cognitive and motor developmental delays in a detailed manner. This fine-grained information is necessary to differentiate children based on their communicative abilities, to monitor their communicative development longitudinally, and to inform person-centered communicative interventions.

Psychological eHealth interventions for people with intellectual disabilities: A scoping review.

BACKGROUND: The use of eHealth, which has accelerated in the wake of the COVID-19 pandemic, could contribute to the access to tailor-made psychological interventions for people with intellectual disabilities. METHOD: A scoping review was conducted on peer-reviewed studies between 1996-2019. RESULTS: Thirty-three studies reported on the use of psychological eHealth interventions focused on mental health problems and/or challenging behaviour. The vast majority of these studies reported on interventions that were delivered at the individual level. The context in which these interventions were delivered varied, primarily ranging from the home setting to residential settings, as well as day or activity centres and schools. The studies described various types of interventions: telehealth interventions, computerized cognitive behavioural therapy, and interventions focused on (social) learning principles targeting challenging behaviour. CONCLUSIONS: eHealth provides new opportunities for both therapists and lay-therapists to deliver psychological interventions. Future studies should focus on the effectiveness of psychological eHealth interventions.

Looking back, looking forward: Methodological challenges and future directions in research on persons with profound intellectual and multiple disabilities.

BACKGROUND: Within the context of the Special Interest Research Group (SIRG) on Persons with Profound Intellectual and Multiple Disabilities (PIMD), researchers often discuss the methodological problems and challenges they are confronted with. The aim of the current article was to give an overview of these challenges. METHODS: The challenges are centred on six topics. These reflect the main components of a study's design: (a) participant demarcation, (b) participant recruitment, (c) data collection and instruments, (d) data analysis, (e) ethics/including the "voice" of persons with PIMD and (f) theoretical models. RESULTS: Next, to describing the specific challenges, possible solutions and pathways to address them are discussed. These are illustrated by recent studies by the authors and other researchers in the field. CONCLUSIONS: The current contribution wants to stimulate further discussion and exchange of ideas, and the development of creative research techniques.

Assistive technology for persons with profound intellectual disability: a european survey on attitudes and beliefs.

BACKGROUND: Persons with profound intellectual disability (PID) are mostly not able to use assistive technology (AT) independently. Caregivers play an important mediating role in implementing AT in the daily life of persons with PID. Both first-order barriers, extrinsic to caregivers, and second-order barriers, intrinsic to caregivers, influence the attitudes and behaviors of caregivers with regard to AT-use. It could be asked if increased knowledge on and experience with AT may impact the effect of first- and second-order barriers. This study investigated how knowledge and experience influence the professional caregivers' beliefs about which factors may impact the AT use in persons with PID and their intentions to use AT for persons with PID. METHODS: A questionnaire on the experienced limitations and successes in using AT was developed. The questionnaire was send to professionals working with or responsible for persons with PID in various countries in Europe. In total the answers of 195 respondents were included in this study. RESULTS AND CONCLUSIONS: This study's results demonstrate that AT is used for various reasons in persons with PID, mostly to support communication and interaction or for fun or relaxation. Based on the answers of the respondents can be concluded that both experience and knowledge of caregivers seem to influence first- and second-order barriers. Besides, a possibility to overcome the second-order barriers is to provide professionals with possibilities to increase their knowledge and experience.IMPLICATIONS FOR REHABILITATIONAT for persons with PID is mostly used for communication and interaction or for fun and relaxation.Professional caregivers belief that AT-use may positively influence various aspects in the life of persons with PID, especially communication and interaction, active engagement and participation in activities, and self-esteem of the person.Caregivers need to have sufficient experience in order to rate the barriers of AT-use as less limited in the group of persons with PID.In order to overcome the barriers experienced in implementing AT in persons with PID, knowledge of caregivers is essential.

eHealth in the support of people with mild intellectual disability in daily life: A systematic review.

BACKGROUND: eHealth has recently made rapid progress in care, support and treatment. However, studies on the use of eHealth to support people with a mild intellectual disability in daily life are limited. A systematic review was conducted to provide an overview of this use of eHealth. METHODS: Seven databases were searched for relevant studies and assessed according to the PRISMA guidelines. Descriptive analyses were deployed using the Matching Person to Technology model to evaluate the key areas contributing to successful eHealth use. RESULTS: Most of the 46 studies included were small-scale case studies and focused on using eHealth to acquire daily living skills and vocational skills. In addition, several studies focused on eHealth use for self-support in daily living, and three studies focused on remote professional support. CONCLUSIONS: eHealth offers opportunities to support people with mild intellectual disability in various different contexts of daily life. Scientific research on this topic is in its early stage, and further high-quality research is needed.

Peer Interactions among Children with Profound Intellectual and Multiple Disabilities during Group Activities.

BACKGROUND: Children with profound intellectual and multiple disabilities (PIMD) meet other children with PIMD in day care centres or schools. This study explores the peer-directed behaviours of children with PIMD, the peer interaction-influencing behaviour of the direct support workers and the children's positioning. METHOD: Group activities for children with PIMD initiated by a direct support worker were video-recorded. The behaviour and positioning of the children and the behaviour of the direct support workers were coded. RESULTS: Limited peer-directed behaviour of the children with PIMD and peer interaction-influencing behaviour of the direct support workers are observed. Weak associations were found between the positioning or peer interaction-influencing behaviours and the behaviour of children with PIMD. CONCLUSIONS: Children with PIMD show social interest in each other during group activities. More knowledge is needed to create an environment which facilitates peer-directed behaviours of persons with PIMD.

Fear of movement in cancer survivors: validation of the modified Tampa scale of kinesiophobia-fatigue.

OBJECTIVE: To date, there is no validated questionnaire to assess fear of movement in cancer survivors. We aim to validate the modified Tampa scale of kinesiophobia-fatigue (TSK-F) in Dutch cancer survivors participating in a rehabilitation programme. We first select the optimal model for cancer survivors. Subsequently, stability, internal consistency, and construct validity of the optimal model is tested. METHODS: A sample of 658 cancer survivors participating in a rehabilitation programme was included. Out of nine models derived in chronic pain and chronic fatigue patients, the optimal model of the TSK-F was selected in a calibration sample (n1 = 329) using confirmatory factor analysis. Stability of the derived optimal model was confirmed in a validation sample (n2 = 329). Internal consistency and construct validity were assessed in the full sample. RESULTS: The 11-item two-factor model of the TSK-F was the best-fitting model for cancer survivors and it seemed to be invariant for sex and cancer diagnosis. Internal consistency of the model was acceptable (Cronbach's alpha between 0.62 and 0.74). Construct validity was illustrated by significant associations between TSK-F total and TSK-F somatic focus with perceived global health status (EORTC-QOL-C30) and fatigue (FACT-F) (p<0.001). CONCLUSIONS: The adjusted 11-item TSK-F consisting of two subscales 'somatic focus' and 'activity avoidance' seems to be a robust and valid tool in measuring fear of movement in cancer survivors with an acceptable internal consistency. Further psychometric testing of the TSK-F in cancer survivors is recommended. In the future, TSK-F scores may be used to customise rehabilitation programmes in cancer survivors.