Stakeholders’ perspectives on how to improve the support for persons with an intellectual disability and challenging behaviors: a concept mapping study

Abstract

Introduction: People with an intellectual disability (ID) are at risk of developing challenging behavior. Although previous research provided important insights into how to support people with an ID and challenging behavior, it remains unclear what various stakeholders consider to be the most essential aspects to further improve their support. Method: Statements regarding aspects perceived necessary to improve the support to people with an ID and challenging behavior were collected in focus groups. Afterwards participants individually prioritized and clustered these statements, resulting in concept maps for people with an ID, direct support workers, and psychologists. Since only three relatives participated in the entire concept mapping procedure, no concept map could be composed based on their input. Results: Participants generated 200 statements. In the concept map of clients, statements were mentioned regarding relational aspects, providing clarity and structure, characteristics of support staff, and professional attitude of direct support workers. Direct support workers provided statements related to their own personal competencies, the necessity of feeling supported and appreciated, and a physical safe environment. Psychologists provided statements regarding their support for direct support workers, the support for the clients, the perspective on the client, and their role as psychologists. Conclusion: The results of this study may be a starting point to foster increased evidence based practice for the support for persons with an ID and challenging behavior. Moreover, it provides opportunities to create care founded on mutual attunement, based on listening to each other's ideas and insight into perspectives and needs of various stakeholders.

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

“…This underlines the relevance of involving different participant groups in research. Overall, our results confirm outcomes of research that it is important to invest in building relationships between service users and support staff (e.g., Nijs et al, 2021 ; Olivier‐Pijpers et al, 2020a ). This includes respect, trust, and getting to know each other well.…”

“…For example, they reported that support staff need to be experienced (life as well as work experience), confident, have a low level of expressed emotions (e.g., show no fear), and stay calm in case of tension. These characteristics are in line with research about support to service users with intellectual disability who display challenging behaviour (Nijs et al, 2021 ; Willems et al, 2016 ). Nearly all the statements of service users applied to activities and interpersonal relations with a direct impact on the service user, described by Bronfenbrenner as the microsystem (Bronfenbrenner, 1994 ).…”

“…Concept mapping is a structured, stepwise, participatory method that combines qualitative and quantitative research components (Trochim, 1989). It is a suitable approach to integrate the perspectives of individual group members into shared visual maps (Burke et al, 2005; Kane & Trochim, 2007), also in the field of intellectual disability (e.g., Nijs et al, 2021). The method consists of five steps: (1) preparation, (2) brainstorming, (3) clustering and prioritising of statements, (4) statistical analyses, and (5) interpreting the maps.…”

“…Several factors have been reported that may affect the quality of support and/or the occurrence of challenging behaviour displayed by people with intellectual disability. At the level of support staff, many studies have found that positive meaningful interactions and high‐quality interpersonal relationships between support staff and people with intellectual disability can reduce challenging behaviour and improve support (e.g., Nijs et al, 2021 ; Olivier‐Pijpers et al, 2020a ). These interpersonal relationships appear to be affected by various factors.…”

“…Effective leadership, as well as a positive organisational culture with shared values, also appear to contribute to high‐quality support (e.g., Bigby et al, 2015 ; Gomes & McVilly, 2019 ). Furthermore, coaching, support, and appreciation of support staff have been shown to enhance the support of people with intellectual disability who show challenging behaviour (Nijs et al, 2021 ; Olivier‐Pijpers et al, 2018 ).…”