“I feel like just a normal person now”: An exploration of the perceptions of people with intellectual disabilities about what is important in the provision of positive behavioural support

Abstract

Accessible Summary People with a learning disability do not always get good support We wanted to know what they thought about positive behavioural support They told us many important things about good and bad support Good support included being treated as a human being, having a good and full life and being helped with behaviour and skills. Abstract BackgroundThere is a growing evidence base about the effectiveness of positive behavioural support (PBS) in relation to behaviours that challenge (CB). There is, however, limited research from the perspective of individuals receiving this support. The objective of this qualitative study was to obtain the views of participants with an intellectual disability about what was important to them in relation to receiving PBS. Materials and methodsSeven participants with an intellectual disability, recruited via support organisations in the North East of England, gave their views about their support through interviews (n = 3) and a focus group (n = 4). Data were collected between April and June 2016 and were analysed using thematic analysis. ResultsFour themes were identified: the importance of being treated as a human being; the wider impact of PBS; the contrast of PBS with previous experiences of support; and the beneficial impact of positive support. PBS was valued for its wide impact on quality of life, with a reduction in CB being just one of many important aspects. ConclusionThis study highlights the importance of including service user perspectives and quality‐of‐life indicators in research which evaluates service provision and support.

“Look, all our hard work is paying off”: A qualitative evaluation of a system‐wide, workforce development model to promote positive behavioural support

“…First, that it was underpinned by a systemic WFD framework that recognized the range of stakeholders and factors that influence behaviour and culture change (McNall, 2012). Second, that the development of the programme was evidence-based, and, in particular, that it reflected the aspects that people with an intellectual disability and/or autism and their families identified as being components of good quality care (McKenzie et al, 2017(McKenzie et al, , 2018. In addition, it was based on an assessment of the WFD needs of organizations who were and/or would be delivering PBS in the region (McNall et al, 2016).…”

“…The development of the guide was informed by a number of factors including research and guidelines which highlighted the areas that might be expected to change if PBS was being used consistently and well, for example improved quality of life, changes in staff practice, reduction in CB (Dench, 2005;Hassiotis et al, 2018;MacDonald et al, 2018;McGill et al, 2018; Positive Behavioural Support Coalition UK, 2015); a scoping exercise that had highlighted some of the areas for change that were perceived as important to health and social care providers in the area (McNall et al, 2016), and research which had explored the factors that were important to people with an intellectual disability and their families in respect of good quality support (McKenzie et al, 2017(McKenzie et al, , 2018.…”

“…Others have highlighted that systemic factors such as managerial inconsistency in accommodating for the increased workload of those volunteering to train (Hassiotis et al, 2018), lack of time to discuss behaviour support plans in team meetings (McKenzie, MacLean, Megson, & Reid, 2005) In 2018, a comprehensive PBS programme was developed in the North East of England. This was underpinned by a WFD model (McNall, 2012), and shaped by the results of an earlier WFD needs assessment of the existing PBS practice and requirements in the area (McNall, McKenzie, & Branch, 2016), as well as research into what people with an intellectual disability and their families (McKenzie et al, 2017(McKenzie et al, , 2018 considered to be good quality support, with a focus on PBS. The programme, a collaboration between NHS organizations, a local university and other stakeholders involved the development of three accredited PBS programmes, offered free of charge to staff in social care organizations who provided support to people with an intellectual disability and/or autism; and three WFD manager roles.…”

People with Learning Disabilities and Smartphones: Testing the Usability of a Touch-Screen Interface

“…Second, as with the studies by McKenzie et al [32] and Ho et al [33] cited earlier, the study relied on gatekeepers to interpret a given participant profile. Archibald and Munce [49] describe how gatekeepers may limit access to potential participants to those of their choice, such as those likely to have 'an above average understanding of the [research] instead of participants with a more typical profile' (p. 35).…”

“…Potential candidates who fulfil the inclusion criteria are identified by the employees of the organisation who work closely with them' (p. 93). Similarly, McKenzie et al [33], in an examination of positive behavioural support, describe how staff at participating organisations 'approached individuals who they thought might be interested'. Participants were requested who were 'aged 18 or over and had intellectual disability; … displayed CB [Challenging Behaviour]; [and] were able to give informed consent' (p. 3).…”