Providing person-centred care to older people with intellectual disabilities during the COVID-19 pandemic: experiences of direct support workers.

Background: Although the current preventive measures relating to COVID-19 can lead to challenges in the daily work of direct support workers (e.g. keeping 1.5 m distance), it remains vital to uphold the principles of person-centred care when working with older people with intellectual disabilities. The current study explores the extent to which direct support workers have been able to apply a specific form of person-centred care (i.e. integrated emotion-oriented care, or IEOC) when working with older people with intellectual disabilities during the COVID-19 pandemic. Method: Six direct support workers from five facilities serving older people with intellectual disabilities in the Netherlands participated in this qualitative study. They participated in a two-hour focus group, which was transcribed verbatim, and the transcript was analysed thematically. Results: Three themes emerged: (i) the negative impact of changes due to the COVID-19 measures on service users; (ii) the adaptation of direct support workers to changes due to the COVID-19 measures; and (iii) putting the needs and wishes of service users first. Conclusion: This study provides first impressions into the experiences of direct support workers providing person-centred care to older people with intellectual disabilities during the COVID-19 pandemic.

Setting up a new team of support staff for people with mild intellectual disability or borderline intellectual functioning and severe challenging behaviour: A concept mapping study.

BACKGROUND: Studies about teams of staff supporting people with intellectual disability have focused on team performance of existing teams. This study aimed to examine important factors in the process of setting up a new team of support staff. Specifically, we considered the process for a team that supports service users with mild intellectual disability or borderline intellectual functioning who display severe challenging behaviour from the orthopedagogical perspective (i.e., with a focus on contextual factors). METHOD: Three participant groups (service users, support staff, and professionals supporting a team) participated in a concept mapping procedure, including generating statements in interviews and focus groups, sorting, and rating. An expert group interpreted the results. RESULTS: Important factors to one or more groups were: service users and support staff getting acquainted early, team safety, social support, a shared vision, and a positive reputation of the new home. CONCLUSIONS: Four core outcomes were addressed that may help service organisations to provide an environment matching the needs of service users who show severe challenging behaviour from the start.

Attitudes towards sexuality and related caregiver support of people with intellectual disabilities: A systematic review on the perspectives of people with intellectual disabilities.

BACKGROUND: Sexual health remains at risk for people with an intellectual disability. Attitudes towards sexuality, its support and education have an important role in promoting sexual health. The current review aims to provide an overview of the current research on supportive and restrictive attitudes towards sexuality and its support of people with intellectual disabilities themselves. METHOD: A systematic review was conducted, searching across eight databases. The quality of the studies was assessed with the Mixed-Method Appraisal Tool. RESULTS: Six themes emerged from the data: sexual behaviour, sexual identity, intimate relationships, barriers to sexual expression, sex education and support by caregivers. Supportive and restrictive attitudes were reported throughout. CONCLUSIONS: Attitudes regarding sexuality of people with intellectual disabilities are heterogeneous and people with intellectual disabilities seem to be able to express their sexual desires, needs and attitudes. Findings allow for improved individual support and in-depth research questions.

Psychosocial interventions for older people with intellectual disabilities and the role of support staff: A systematic review.

BACKGROUND: The life expectancy of people with intellectual disabilities has increased. The implications of ageing have resulted in changes in their support needs and challenges to support staff. Access to evidence based strategies for support staff providing care to elderly with intellectual disabilities remains scarce. A systematic review was conducted to provide an overview of available psychosocial interventions. METHODS: Four databases were searched and assessed according to the PRISMA guidelines. A narrative, integrative method of analysis was conducted to synthesise quantitative and qualitative data. RESULTS: The 36 studies included in the review reported on interventions aimed at either identifying and meeting the needs or perceptions of older individuals or at improving their behaviour and skills. Furthermore, the role of support staff in the implementation of interventions was either active, assisting or undefined. CONCLUSIONS: This overview of studies could contribute to the existing body of knowledge and help to optimise psychosocial support for a growing population.

Stigma research in the field of intellectual disabilities: a scoping review on the perspective of care providers.

Care providers are key agents in the lives of individuals with an intellectual disability (ID). The quality of their support can be affected by manifestations of stigma. This scoping review was conducted to explore studies that provide indications of care providers' stigmatization of people with ID. Methods: A structured search was made in four databases to identify relevant studies in English-language peer-reviewed journals. Records were systematically and independently screened by the researchers. Results: The 40 articles included in this review were mainly conducted in Western countries and used Likert-type self-report measures of explicit attitudes. Stigmatization seemed more distinct concerning people with high support needs. The few studies on public stigma preliminary suggest that staff may also stigmatize people with ID based on other social identities. Regarding the support of structural stigma, staff reported skepticism regarding community inclusion for people with high support needs, and tended to be ambivalent about the protection-or-empowerment balance in the support of people with ID. Possible indications of stigmatization regarding sexuality were found on specific issues, such as self-determination and privacy. Agreement of staff with certain rights did not necessarily lead to staff acting in accordance with such rights. Conclusion: Indications of stigmatization of people with ID by care providers were found. Stigmatizing attitudes might affect the quality of care providers' support. Potential leads for future interventions concern creating awareness, sharing power, addressing diagnostic overshadowing, and providing explicit policy translations. Directions for future research concern strengthening the methodology of studies and enriching the studied topics.

Writing about stress: the impact of a stress-management programme on staff accounts of dealing with stress.

BACKGROUND: Helping staff serving clients with intellectual disability and challenging behaviour to cope with stress has implications for their own well-being and for the lives of those they support. METHOD: This study examined staff members' views of stress and the effectiveness of a stress-management intervention. Effectiveness was assessed using written assignments regarding stress management, and changes in views presented were tested in a pre- and post-test control group design. RESULTS: In the first phase, a content analysis was conducted across groups, which revealed that participants expressed a broad variety of views about stress and coping mechanisms, with considerable individual differences. In the second phase, a more fine-grained quantitative analysis was conducted to assess training effectiveness. Results showed an increase in the proportion of coping strategies referred to by the experimental group post-training. This positive change remained at follow-up. CONCLUSIONS: The results of the content analysis and the outcome data have implications for staff training.

Evaluating staff training: taking account of interactions between staff and clients with intellectual disability and challenging behaviour.

BACKGROUND: Hastings (2010) has recently emphasised 3 aspects in the training of staff who serve clients with mild to moderate intellectual disability and challenging behaviour (CB): Staff attitudes, self-awareness, and clients' perspectives. This study investigates whether programs include these aspects. METHOD: A systematic search yielded 11 relevant articles. RESULTS: Generally, all programs aimed to improve staff knowledge and skills. Client variables concerned frequencies and severities of CB. None of the studies included clients' perspectives or staff attitudes and self-awareness. CONCLUSIONS: The fact that staff attitudes and awareness or clients' perspectives were not among the main goals of the training studies suggests that recent views of effective treatment of CB are not yet the object of scientific study. Given the acknowledgment of these aspects, it is warranted that future research focuses upon these recent insights.

Quantitative and qualitative processes of change during staff-coaching sessions: an exploratory study.

Staff training is one of the interventions that managers can embed in their organizations to help staff improve their professional competences related to challenging behaviour of clients with intellectual disabilities. Individual coaching adds learning opportunities that are feasible but difficult to achieve in an in-service setting. In the present study, we have followed the coaching process of three staff members. Based on differences in the Linell balance of power across sessions, we explored the question: do different coaching processes have similar patterns in the development of dominance and coherence in interactions between coach and staff? Additionally, a qualitative approach was conducted to illustrate and enrich the meaning of quantitative outcomes. Processes were different regarding the balance of power at the start of the coaching, probably due to differences in resistance and insecurity. As a consequence of different starting points and differences in learning styles, each coaching process had its unique development over time. At the end, all dyads were comparable in the sense that all dyads were highly satisfied about the outcomes and process of coaching. This is in line with similar levels of power at the end of the coaching sessions suggesting equal contributions and leadership. The present findings suggest some relevant competencies of coaches within health-care services. Due to the small number of participants, the results have to be interpreted with caution. The present study provides suggestions for future research and clinical practice.

Verbal and nonverbal emotional behaviour of staff: a first attempt in the development of an observation instrument.

It is common to use questionnaires and interviews to assess the emotions of staff who serve clients with intellectual disabilities. Remarkably, observations of actual staff behaviour and assessments of nonverbal expressions are usually not involved. In the present study, we have made a first start in the development of an observation instrument that registers both verbal and nonverbal expressions of emotion. Following extensive literature reviews, interviews with clinical experts and pilot observations, we have created an observation system and observed a team of staff members during a period of three months. Results revealed sufficient to good interrater reliabilities regarding the observation of the three forms of emotional expression: body movement, facial expression, and verbal utterances. Low levels of explained variances between the different forms of expression showed that predictive values were weak. This means that there is a surplue value of the observation of nonverbal emotional expressions as compared to existing instruments that base their assessment on verbal and/or written responses only.

Long-term effectiveness of the response restriction method for establishing diurnal bladder control.

The long-term effectiveness of the response restriction method for establishing diurnal bladder control was assessed with 48 participants with intellectual disabilities. Intervals of assessment ranged from 28 to 66 months across the individuals following initial baseline. Difference scores in terms of the mean number of toileting accidents per hour were related to participants' stereotypic behaviour and their housing conditions, as these were hypothesized to differentially influence the maintenance of diurnal bladder control. It was found that (a) across all participants there was a statistically significant decrease of the mean number of toileting accidents during follow-up as compared to initial baseline (b) stereotypic behaviour failed to be related to maintenance of bladder control, and (c) housing condition was significantly related to the above dependent variable, in that those living in a residential facility were more likely to wear a diaper again as compared to those living with their family. Implications for the clinical practice are discussed.

Training staff serving clients with intellectual disabilities: a meta-analysis of aspects determining effectiveness.

The last decades have seen increased emphasis on the quality of training for direct-care staff serving people with intellectual disabilities. Nevertheless, it is unclear what the key aspects of effective training are. Therefore, the aim of the present meta-analysis was to establish the ingredients (i.e., goals, format, and techniques) for staff training that are related to improvements of staff behaviour. Our literature search concentrated on studies that were published in a period of 20 years. Fifty-five studies met the criteria, resulting in 502 single-subject designs and 13 n>1 designs. Results revealed important information relevant to further improvement of clinical practice: (a) the combination of in-service with coaching-on-the-job is the most powerful format, (b) in in-service formats, one should use multiple techniques, and verbal feedback is particularly recommended, and (c) in coaching-on-the-job formats, verbal feedback should be part of the program, as well as praise and correction. To maximize effectiveness, program developers should carefully prepare training goals, training format, and training techniques, which will yield a profit for clinical practice.