University of South Wales
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Article Title: An exploratory study of Behavioural Specialist experiences of involving service users in the development of their positive behavioural support plans
Authors: Krueger, B., Northway, R.
Journal: Journal of Intellectual Disabilities
Citation: Kruger, B& Northway, R2017, 'An exploratory study of behavioural specialists' experiences of involving service users in the development of their positive behavioural support plans'Journal of Intellectual Disabilities. DOI:10.1177/1744629517730658
Copyright Information
Krueger, B., Northway, R., An exploratory study of Behavioural Specialist experiences of involving service users in the development of their positive behavioural support plans, Journal of Intellectual Disabilities. Copyright © 2017 (Copyright Holder). Reprinted by permission of SAGE Publications.
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Abstract
There is limited research that explores the experiences of how Behavioural Specialists actively involve people with a learning disability and challenging behaviour in the development of their Positive Behaviour Support (PBS) plan. Accordingly, this exploratory research study aimed to explore this little understood area of practice.
Methods:The study included semi-structured interviews comprised of nine Behavioural Specialists in three focused groups across two health boards. A descriptive thematic analysis study. Findings: Three major themes and eleven minor themes were identified illustrating how people with learning disabilities and behaviours that challenge were involved in developing their PBS Plan. Significantly, the themes illustrated the complexity of truly involving service users in the process. Conclusion:Inclusion for people with a learning disability and behaviours that challenge in their PBS plan pose significant challenges. Person-centred care struggles to be truly embedded in the PBS model.
Key words
Positive Behaviour Support, Behavioural Specialists.
There has been a growing recognition given to the use of Positive Behaviour Support (PBS) in supporting people with a learning disability who present with behaviours that challenge. A fundamental principle of PBS is the active involvement of the person themselves throughout all stages. This study aims to understand how practitioners achieve this in their daily practiceand focused on Behavioural Specialists who are the lead clinicians that implement PBS in practice.
Background and Context
Healthcare Strategic and Guidance and Practice
Over the last 15 years there has been a gradual but significant drive by the National Health Service (NHS) to make services person-centred and engage and empower patients in their healthcare (Department of Health (DH) 2000; The Scottish Government 2001; Welsh Assembly Government (WAG) 2007; and DH 2009b). There is increasing evidence that patient involvement improves health outcomes and clinical efficiency and safety (DH 2008). Notably, many patients are increasingly well informed and are demanding active involvement (Larsson et al., 2007 and Hayes 2015); wishing to improve their knowledge of their own health (Dierckx et al., 2013). Often involvement promotes confidence, autonomy and facilitates an equal relationship with professionals (Larsson et al., 2007).Consequently, a number of government policies have been launched to promote patient participation in their care and treatment (DH 2012; and DH 2013). A number of these policy initiatives have been introduced to actively promote the inclusion of people with a learning disability in their healthcare (WAG 2007; and DH 2009a). Often this population still largely remain excluded from their healthcare (DH 2001; and DH 2009a) and have a different experience than other patients (Public Health Wales 2014).More so,for marginalised and vulnerable groups such as people with a learning disability and additional complex health needs and behaviours that challenge (Hoole and Morgan 2011).
Positive Behaviour Support (PBS) and Practice
In the last twenty-five years there has been widespread acceptance that Positive Behaviour Support (PBS) is an effective approach in supporting individuals with a learning disability who present with behaviours that challenge (Dunlap et al., 2008; McGrath 2013; and DH 2014). Accordingly, interest in this field has expanded considerably with a number of published studies offering greaterawareness and understanding of the benefits of this approach (Allen et al., 2005; Baker and Allen 2012; Gore et al., 2013). People with a learning disability who display such behaviours as physical aggression, property damage or self-injury frequently pose many challenges in the development, commissioning and provision of service (DH 2007). The impact of having behaviours that challenge is many and varied; and, can affect the individuals themselves, carers and those who commission and deliver services (Allen 2009). Historically it has been customary to support these individuals by a range of restrictive and aversive practices. For many, this resulted in experiencing approaches such as punishment, physical, mechanical and/ or chemical restraint and seclusion (Allen et al., 2005; Chan et al., 2012; Lowe et al. 2005; and Vause et al. 2009). The therapeutic value and ethical appropriateness of these approaches have been brought into question, many suggesting these practices were abusive and dehumanising and even dismissive of a person’s human rights (Chan et al., 2012; and Webber et al. 2014). The Human Rights Act 1998 sets out fundamental rights and freedoms that everyone in the United Kingdom are entitled to (Equality and Human Rights Commission 2017). Article 3: Prohibition of Torture; and Article 5: The Right to Liberty (Equality and Human Rights Commission 2017) are significantly impacted when practices such as physical and chemical restraint and seclusion are enforced. Significantly, it has been suggested these practices do not address the underlying issues of the behaviours, or even provide or meet the needs of the individual (Webber et al., 2011). Chan et al., (2012) further indicates these approaches contribute to poorer outcomes such as, reduced quality of life and social exclusion.
PBS represents a melding of values,theory and evidence which aims to achieve lifestyle changes and improve quality of life. Its intention is the bringing together of key policy values that subscribes to the principles of normalisation, person-centred planning and self –determination in conjunction with Applied Behavioural Analysis (Gore et al., 2013; and DH 2009a). It aims to increase quality of life for people with a learning disability and behaviours that challenge in their own communities and networks and simultaneously decrease challenging behaviours (Carr et al., 2002). Consistent with person-centred values, PBS necessitates active engagement and co-operation from the individual (Carr et al., 2002). It states the individual themselves are the key decision makers, definers of goals and parameters within the PBS approach(Dunlapet al., 2008).
Person- Centred Planning and Practice
Across the United Kingdom (UK) person-centred planning (PCP) has gained much interest in the delivery of healthcare. A number of government policies has been aimed at PCP (DH 2012; and Care Act 2014). PCP is an approach that puts the individual at the centre of their care focusing on their wishes and needs from their perspective and encouraging services to be shaped around the needs of the person (Gluyas 2014). Significantly, it places the person in the context of their family, friends and community; and builds on what is important to the person and their capabilities (DH 2003), aiming to empower individuals and encourage self-determination (The National Autistic Society 2015). Unfortunately, despite legislation and guidance (DH 2012b; and Care Act 2014) this remains an ideal rather than reality for many (Institute of Health Research 2005) more so for those individuals with more complex needs (Parr 2012).
The Institute of Health Research (2005) examined the challenges that PCP has experienced in its implementation suggesting a lack of training and experience in PCP across learning disability services. And a substantial scale of change is required in the delivery, planning and how power is used by professionals and services. This view is also supported by Duffy (2004) who argues there is a tension between ‘what is right for the individual’and ‘what is right for the clinician’ and clinicians remain dominant and very much in control (Martin and Carey 2009). Osgood (2005) has emphasised tension may arise between organisations and service users in the implementation of PCP as often professionals and services are paternalistic. Whereas PCP focuses on capabilities, strengths and autonomy of the individual. Despite these challenges research (Barton 2012; and Smith and Carey 2013) has shown a number of positive outcomes for people with learning disability when PCP has been implemented. The Institute of Research (2005) suggests there is an improvement in both quality of life and how support is delivered. Furthermore, studies have shown that patients who receive person-centred care are well-informed and supported and are more likely to trust their clinician and make healthier choices(Richards and Coulter 2007 and Coulter 2012). Therefore, professionals and services must shift in their decision-making and trust that individuals can determine their own path (institute of Health Research 2005)
In practice, many clinicians would consider their practice to be person-centred and inclusive however this can be a struggle (Fred 2010). This tension between practice and philosophy pose a number of areas for clinicians to consider when delivering sustainable person-centred approaches through the medium of PBS. PBS advocates: only when a valid and comprehensive understanding of the person and their needs have been achieved will PBS be effective (Dunlap 2001).If the person’s needs are met, then quality of life will improve and ultimately behaviours that challenge will diminish (Carr et al., 2002). Inherently this must include the person’s voice. It is incumbent on us as professionals to create conditions and opportunities for active participation and collaboration. Encouragingly this is now being recognized and accepted and that service users are ‘expert of their own lives’, and their views and beliefs may differ from paid staff (Duke and Sweeney 2009). Unfortunately, even though PBS advocates PCP there appears to be no studies undertaken in how people with learning disabilities are truly involved or consulted in respect of the development of their plan. Furthermore, there appears to be no studies asking how professionals involve service users in the development of their PBS plan.
Study Design
The study aimed to understand Behavioural Specialists experiences of involving service users in the development of the PBS plan. The research question;‘what is going on here’, sought to allow new possible theories to emerge.
Data Collection
Data was collected through focus groups using a semi-structured approach. Each focus group was recorded using a digital voice recorder with participant consent and transcribed for a detailed analysis to occur. The length of the focus groups: group 1 –90 minutes, group 2 –60 minutes and group 3 –45 minutes.
A topic guide and an interview schedule with open questions was used to steer the focus groups. The topic guide had 5 themes, the background of the Behavioural Specialists, background of the service users, background of PBS in each team, contact or involvement with the service users and the health perspective and support available. This approach encouraged participants to explore and share their experiences and perceptions (Matthews and Ross 2010). These were undertaken by the author with venue, day and time selected by participants.
Participants
The final number of the focus groups was 3 taken from two Local Health boards in Wales. It was felt these participants held the necessary experiences and provided opportunity for diversity and differing perspectives (Meadows 2003). All the Behavioural Specialists worked in community behaviour support teams that were established to support individuals with learning disabilities and behaviours that challenge and their families. All the community behaviour support teamsemployed the PBS model in their practice. The teams included many different professionals and covered large geographical areas. Individuals presented with significant and complex behaviours and comorbid conditions.All referrals came from the local Community Learning Disability Team and length of engagement varied from several weeks to several years.
Please see Table 1 for the inclusion criteria and Table 2 for the participant characteristics.
Insert Table 1: Inclusion criteria
Insert Table 2:Demographics of the participants
Data Analysis
A thematic analysis was used in the study. Esmaeili et al., (2014) suggests this approach is being applied more often in healthcare to explore key issues of individuals in groups. It is ideal when little is understood of the phenomena (Vaismoradi et al., 2013). Fugard and Potts (2015) suggest it is perfect for small size samples as this allows for the preservation of the individual focus. It enables the actual behaviour, attitudes or motives of the participants to be studied and understood and hence generates new theories and themes (Minichello et al., 2004).
The data was digitally recorded during the focus groups. The first phase of the data analysis was for the researcher to be familiar with the data generated. The recorded data was transcribed into written form. The transcript was written as a ‘verbatim account’. The second phase of the data analysis generated initial codes (Braun and Clarke 2006). There were three transcripts generated from the data and a general list reflecting ideas and themes developed. All three transcripts were also given to the researcher’ssupervisor to analyse independently. Once themes and ideas were identified discussions commenced between the researcher and the supervisor.Initial code ideas developed. A third phase of interpreting the data occurred. A further credibility check was undertaken with the researcher’s supervisor. The final phase refined the codes and major themes and minor themes developed.
Ethics
Ethical approval was sought and granted from the (removed for peer review) Ethics Committeeand the respective Research and Development Departments of the health boards.
Findings
There were 3 major themes and 10 minor themes identified from the findings; these are provided in Table 3. The minor themes need to be understood in relation to their major theme. To illustrate the findings verbatim extracts will be presented.
Insert Table 3: Major and Minor Themes
Theme 1 - The Communication Process
This theme demonstrates the significant challenges participants experienced in the communication process with service users. All participants described a number of major challenges and barriers in overcoming these. Often service users had limited or diminished communication ability and as such this affected how the practitioners shared information.
Understanding individual ability-All practitioners highlighted the importance of developing a good understand the person’s communication ability and being adaptable in their interaction style. Adaptation of materials to aid communication was a priority. Spending time with people was a key factor in the approach.
BS 1 “cos obviously it depends on the skills of the individual……accessing that level of understanding for that service user”
BS 9 “understanding that person how they communicate, how to communicate with that person … their communication is very limited even with adapted forms of communication”
Using alternative approaches-To overcome these challenges practitioners needed to be creative and flexible utilising a number of augmentative and alternative approaches. Written and visual material was changed to be accessible in an aid to meet individual need. These included; use of photographs, pictures and communication symbols, accessible chunks of information, reduction of complex language and human support.
BS 1 “Talking mats jointly with SALT”
BS 5 “video to model specially non verbal interaction style with a client at the moment”
BS 8 “a range of tools, systems, communications……..we try to apply that as best we can but we individualise it for the service user concerned”, “leaflet with pictorial visual support”
Avoiding distress-Practitioners were very aware of how an individual’s emotional well-being can have a negative effect on their ability to communicate effectively. Practitioners recognised individuals may be experiencing high levels of anxiety and distress and may not necessarily wish to discuss their health needs. Many practitioners expressed worries of further increasing service users’ distress levels or triggering a behavioural incident.
BS 4 “discussing certain parts of their history or things that are triggers will trigger,”
BS 8 “also the timing of how you do it really. If someone is having a bad day you are not going to want to”, “I wouldn’t want that person to become distressed”
Theme 2 - Complicating Factors
The data demonstrated that involving service users in the development of their PBS plans was complicated by a number of factors. All service users’ needs were described asbehaviourallycomplexand intense with additionalneeds such as, mental health difficultiesor/ and autism. These additional needs had a significant impact and further reduced an individual’s cognitive ability, communication and their emotional well-being.
Complexity of need-Practitioners were required to meet a range of multiple needs that were diverse, broadand unique to the individual. Frequently practitioners were supporting a range of professionals and carers which was resource intensive. Repeatedly placements were at risk of break down or significant risk of harm was being posed to the person and/ or their carers. Consequently, there was urgency and expectation to accept the referral and immediately provide intensive support. Preventing harm and addressing the behavior was of significant priority and as such practitioners had little opportunity to focus on service user involvement.
BS 8 “I have got one person in residential school who is an adult and he will be leaving that school very very soon who is extremely problematic, complex mental health needs, complex challenging behaviour, autism”
BS 9 “It’s those behaviours that are most frequent, or intense or severe and then there is a risk of placements breaking down, family placements breaking down, school placements breaking down”
Time/ resources-Within two of the focus groups participants discussed a demanding and increasing caseload. Frequently practitioners were under pressure to respond quickly and efficiently. Resources required for service users for one team was an area of concern and one participant felt involving service users was both timely and intensive. Many expressed that they did not have the time or resources to focus on service user involvement.