The views of carers about support for their family member with an intellectual disability: With a focus on positive behavioural approaches

Abstract

This qualitative study explored the views of family carers about the support that their adult children with an intellectual disability had received in relation to their behaviour that challenged. There was a particular focus on positive behavioural support (PBS), although some participants spoke more generally in terms of positive approaches.Semi-structured interviews with eight family carers were analysed using inductive thematic analysis. Four key themes were identified. Good support, of which PBS was an example, was seen as both having reduced behaviours that challenged and having a wider positive impact on the quality of life of the individual and their families. Key features highlighted were: technical knowledge and skill; a strong value base of warmth, acceptance and respect; a collaborative, consistent approach; open communication;and the extension of support to the family carer when needed. It was recognised that there is a need for broad systemic change and for the application of a workforce development model that takes account of the needs of staff, carers and those working in wider systems that have contact with people with an intellectual disability. K E Y W O R D Sadult learning disability services, behaviour change, carers, challenging behaviour | INTRODUCTIONBehaviours that challenge are thought to be prevalent among 10%- There is, however, to the authors' knowledge, no research which explores the views of family carers in relation to their adult family member receiving PBS. The present study aims to address this gap in the literature. Specifically, the study aimed to understand more about how family carers conceptualised PBS and how they had experienced this in relation to their family member. | METHODS | DesignThe study adopted a contextualist approach which gives weight to individuals' subjective experiences within the social context that shapes how they give meaning to them (Willig, 1999). Inductive thematic analysis was chosen because it is largely non-theoretical and is not underpinned by a particular epistemological stance (Braun & Clarke, 2006). The study received ethics approval from the first author's educational establishment. | ParticipantsParticipants were recruited using purposive sampling via support and advocacy organisations in the North of England which provide support to people with intellectual disability. Purposive sampling was chosen because we were interested in particular characteristics of the participants, i.e. their experiences of support that their family member had received. Three interviews and one focus group were conducted, based on the expressed preferences of the participants. Five of the participants (three interviewees and two focus group members) had adult children with intellectual disability and behaviour that challenged. The remaining three focus group members had experience of support for a family member with intellectual disability which was not specifically named as PBS, but was viewed as "positive" and contrasted with past experiences of unhelpfu...

“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.…”

“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

“…These values are not new and reflect some of the key principles of normalisation (Wolfensberger, ) and subsequent frameworks that were developed to evaluate good quality support, such as the “Five Accomplishments” (O'Brien, ). These values are also seen as important by family carers of their adult children with intellectual disability who display CB (McKenzie et al., ).…”

Experiences of parents who support a family member with intellectual disability and challenging behaviour: “This is what I deal with every single day”

“…Within the research addressing family experiences of caring for a family member with a disability (see for example Cummins, 200;McConkey, 2005;McKenzie, Mayer, Whelan, McNall, Noone & Chaplin, 2017;Plant & Sanders, 2007;Storr, 2014;Thompson-Janes, Brice, McElroy, Abbott & Ball, 2014) a small subset of studies focuses on the experiences of families whose family member not only has intellectual disability but also challenging behaviour (see for example Hatton, Emerson, Kirby, Kotwal, Baines, Hutchinson, Dobson & Marks, 2010;Maes, Broekman, Došen, & Nauts, 2003;McGill, Tennyson, & Cooper, 2005;McGill, Papachristoforou, & Cooper, 2006). While a number of these studies identify the challenges and strains of these families, few show the detail of what family members do on a day-to-day basis to navigate their lives.…”