University of South Wales Open Access Repository
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, R 2017, '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 InformationKrueger, 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
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practitioners achieve this in their daily practice and 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).
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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 greater awareness 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
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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 (Dunlap et 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
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(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)
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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
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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 teams employed
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.
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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’s supervisor 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
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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
Committee and 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
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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
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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 as behaviourally complex and intense with additional needs such as,
mental health difficulties or/ 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, broad and 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.
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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.
BS 1 “so it depends on complexity at the moment. We are working closely
with the …………. project around here, so we are having bigger number”
BS 3 “I think that is about a resource issue………. I think one of the biggest
barriers is the time it takes to set this up”
Cognitive ability- All of the participants demonstrated a good understanding of the
importance of service users’ involvement. Also, all participants recognised the
severity of the learning disability would affect their ability to meaning fully engage.
Practitioners expressed greater challenges in involving service users who were less
able or had severe or profound learning disabilities. In that, understanding the
information being shared, service users’ ability to communicate with others and the
ability to acquire new skills were diminished. Often practitioners focus was involving
carers or professionals rather than service users themselves.
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BS 3 “He is well involved in all that but that is because his abilities are
probably a lot greater than others on our caseload”
BS 8 “person’s level of cognitive understanding really or the severity of their
learning disability”
Theme 3 - Focus on the Individual
This study reveals the definition and the scope of PBS appears to be the same
across the two health boards. All focus groups utilised theory and evidence base in
the delivery of PBS. However, the implementation did vary across the two health
boards.
Observations and assessments- Two groups relied heavily on the assessment
process to inform their practice and decision making whereas, the third group
focused heavily on interventions involving learning opportunities and skill
development for the service user. For two of the groups the primary use of applied
behavioural analysis to assess and support behavioural change was of significant
importance. These evidence based approaches, such as observations and
behavioural assessments enabled practitioners to develop a comprehensive
understanding of the person’s behaviour. Dissimilarly the third group focused more
heavily on multi-component interventions, which included skill teaching for the
service user and considering ways of enhancing the person’s quality of life.
BS 5 “increase the functional equivalent adaptive skills teaching”
BS 8 “comprehensive functional analysis assessments of the service user,
getting a good understanding of the behaviour”
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Multi-Disciplinary Team (MDT) working- Collaboration with carers and other
professionals was a substantial aspect of the Behavioural Specialist’s role. All three
focus groups emphasised the importance of partnership, cooperation and
collaboration with families, paid carers and colleagues. Many participants felt that
without this level of multi-disciplinary involvement from the support network they
would not be able to develop a comprehensive and fitting PBS plan.
BS 1 “our assessments are not only based on the team’s assessments……
your OT assessments………. your SALT assessment, we’re all writing,
coming together, our PBS plans come together”
BS 2 “lots of our service users have the MDT involved SALT, OT when
gaining information”
BS 7 “a lot of my work is with the staff gathering information”, “the parents of
some of the clients who have PMLD to give us the right information and
enough information that we can do a good support plan”
Collaborating with carers- The collaborative approach also included the ability to
develop carers’ knowledge and skills. Participants discussed the importance of
developing multi-component interventions over the long term with carers that were fit
for purpose.
BS 5 “increasing people’s basic knowledge and their ability to apply that
knowledge”
Practitioners also experienced tensions when working in partnership with carers as
this could cause conflict. Participants struggled to maintain focus on the service
users’ needs due to the needs of the carers.
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BS 4“it can be quite difficult when you get into the position when you seem to
be there more for the staff”
One to one interaction- Developing a professional relationship with the service user
to enable their participation was a key aspect for one of the focus groups. One to
one interaction was an integral part of their role which facilitated assessments,
relationship building and the teaching of new skill and abilities. All practitioners
valued their time with services users and some suggested it was the most rewarding.
Practitioners would adapt their interpersonal skills and approach to meet the needs
of the service users.
BS 2 “Its very person centred, person centred”, “we could be doing this with
all the people working with that person”
BS 4 “I want to get to know them on a more personal level so feel more
comfortable with me being there”
BS 5 “Intensive direct contact as well really and wherever someone is actively
able to participate in generating, whether it’s the entire plan with support or
partial bits of the plan we would be directly working with them at the point as
well”
BS 6 “whilst I’m on the floor playing lego, it’s wonderous”, “it it’s more jovial”
Discussion
PBS has had widespread acceptance as an effective approach for people with a
learning disdability and behaviours that challenge (McGrath 2013 and DH 2014). A
key value of PBS is PCP. PCP has gained much intrest in healthcare; with
increasing evidence that service user involvment in their healthcare improves health
outcomes and clincial efficiency (DH 2008b).
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One of the main themes in this study identified several constraints in the
communication process for people with a learning disability and for the practitioners
themselves. This has also been recognised in the literature. Hagan and Thompson’s
(2013) case study suggest people with a learning disability experience severe
communication difficulties on a daily basis. Consequently, adults with a learning
disability rely heavily on their relationship with family and paid carers to enable their
health needs to be meet (Kyle et al., 2009). This was more apparent for the less able
service users who had significant difficulty in process and understanding the
information being shared; and being able to verbally communicate their views and
wishes. Though these difficulties were acknowledged these specific challenges
were not explored in depth in any of the focus groups. Practitioners recognised the
need for augmentative and alternative communication strategies as well as the
complexity of the information and the importance of joint decision making. However,
this recognition also informed how professionals would involve service users in the
development of their PBS plans. This understanding became a barrier and often
participants were not able to recognize the value and impact of having greater
involvement of service users in their PBS plans. Choice and participation was
constructed in a limited way particularly for individuals with more significant
disabilities. Enabling active contribution and meaningful involvement remains a
challenge for many practitioners (Hagan and Thompson 2013 and Gowland 2011).
Walmsley (2004) explores the challenges faced when translating information
suggesting, there is a limit to the extent of which complex information can be
conveyed and complexity are invariably lost. Skillful communication is clearly
required from practitioners. Several studies have highlighted carers’ and
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professionals can over estimate individuals’ level of understanding and fail to match
the communication methods to their needs (Bradshaw 2001). Koski and Launonen
(2012) advocate ‘skillful communication’ is a professional competence that requires
special training and only when practitioners use a ‘facilitating communication style’
will mutual understanding be achieved. Human support was also discussed;
spending time with the person and understanding and interpreting their preferred
communication style. Human support is time intensive and can be costly. Many
practitioners felt immense pressure to resolve the challenges being faced by carers
and services or did not fully appreciate the importance of one to one support,
particularly for individuals with severe or profound learning disabilities.
Complex needs and how to meet these needs of the service users’referred was
significant in the findings. Recently reports (DH 2009a and DH 2007) have
suggested health professionals play an important part in providing specialist
provision into support services (McKenzie 2009) All service users posed significant
challenges to their local services and professionals requiring intensive support with
skilled clinicians. Clinicians needed to be creative and inclusive in their approach
enabling families, carers and services to fully participate. These findings are
consistent with previous research indicating specialist teams with professional
expertise often provide a service to those with the most severe, enduring and
complex behaviours that challenge (Ingram and Lovell 2011 and McKenzie and
Paterson 2010). Literature has shown that individuals who are placed out of area are
frequently more challenging than other populations in residential care (Beadle-Brown
et al., 2006). Positively, for two groups there was a drive to bring people back home
rather than supporting out-of-area placements however practitioners expressed a
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significant increase of complexity and demands to caseloads to support this shift in
practice.
To make services person-centred and engage and empower patients in their
healthcare and are key drivers in NHS directives and policy (DH 2009b and WAG
2007). The study revealed tension between including the person’s ‘voice’ or offering
real choices and control for the person. Often, best interest decisions were the
‘norm’ regardless of the person’s ability. Professionals must presume capacity
unless it has been established that the person lacks capacity (Mental Capacity Act
2005). However, this was not necessarily embedded in practice and often
practitioners referred to person-centred support when individualized care was being
provided. These findings are comparable with literature. Dowling et al., (2007),
literature review proposes client centeredness is very evident in practice whereas the
implementation of person-centred planning is very slow and has not yet been fully
integrated in healthcare. This suggests an imbalance of power and the control and
influence remain firmly with the professionals (Hoole and Morgan 2010). Jingree et
al., (2006) study conclude this is not uncommon and express staff may unwittingly
disempower individuals despite their best efforts to increase control, choice and
independence.
Duty of care versus the implementation of person- centred planning was a struggle
for practitioners. Salmon et al., (2013) phenomenological study dicuss how practice
changes can present with signifcant challenges for staff particulary in how to balance
choice and autonomy without fear of litigation. Veselinova (2014) emphasises duty of
care will only be breached if an action or an ommission causes loss or harm which
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would have been forseen. Therefore it is crucial practitioners possess a robust
knowldge of the peron’s informed wishes and choices. The findings demonstrated
expressed anxiety and responsibility about increasing service users’distress and
having a negative effect on their welfare if involvement occurred. Many held the
view active participation would increase the likelihood of a behavioural incident and
increase risks for the person or those supporting the individual. Comparable to
literature the findings revealed practitioners were unaware how their own behaviour
and attitudes may either diminish or promote autonomy (Jingree et al., 2006) as their
priority was not to breach their duty of care.
Literature clearly recognises collaborative working as a fundamental feature to good
quality practice in healthcare (Griffin 2015 and Ndoro 2014). Ndoro (2014) through
critical examination suggests there are a number of advantages to collaborative
working for practitioners. These include; cross fertilisation of ideas and skills,
broader repertoire of knowledge and expertise and improved communication
amongst practitioners. James (2013) suggests collaboration between professionals
and carers is paramount as it prevents difficulties for carers and improves practice
for practitioners. These findings are comparable to the study and integral to the PBS
process. PBS has always embraced active participation from significant others, and
views these individuals as active partners (Carr et al., 2002). Encouragingly many
practitioners recognized the value of a collaborative approach. All members
expressed seeking support and advice from colleagues as essential and extremely
beneficial hence, developing their own knowledge, expertise and confidence. One
focus group discussed having an experienced and knowledgeable team member
they could draw upon as well as accessing support from the community learning
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disability team. Using the knowledge and skills of carers and colleagues who know
the person well appeared to be an integral part of the development of PBS plans.
Interestingly all the focus groups emphasised getting to know the person well to
develop the PBS plan. All of the participants felt this was central to their role and
crucial in the development of a PBS plan fit for purpose. Though different
participants achieved this differently either through discussion and formal
assessments with carers. Some of the participants sought to spend time with the
person to develop a professional relationship and getting to know the person well.
Limitations
The findings of this study begin to provide an understanding of the experiences of
how Behavioural Specialists actively involve people with a learning disability and
behaviours that challenge in the development of their PBS plans. However,
limitations of the study should be acknowledged. The use of thematic analysis
method can be criticized as similar to other qualitative research methods for being
anecdotal, subjective and unempirical which are not generalisable (Parahoo 2006).
Nevertheless, thematic analysis does not claim scientific laws but rather an
understanding of meaning and experiences ascribed by an individual (Braun and
Clarke 2006). In one of the groups, a senior staff member was present and this may
have inhibited the participants’ responses. Ideally the groups should have been
composed of strangers to prevent inhibitions of answer (Doody 2013).
Unfortunately, this was not possible and the group was fully aware. It was ensured
all participants were comfortable and had the opportunity to contribute (Doody 2013).
A further limitation of the study was one focus group had only recently fully
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implemented the PBS model in clinical practice and consequently at an early stage
of development. Consequently, practitioners were not confident in their
implementation of the model and not all aspects were in place. Hence, their
experiences were limited and as such, the transferability could be questioned to
other populations. Despite this, encouragingly many of their initial experiences did
correlate with the other two focus groups.
This study must recognize the lack of involvement of individuals with a learning
disability within this piece of research. However, this study has demonstrated this is
a neglected step in both practice and research. Therefore, it is recommended
researchers recognize and readdress this situation.
Conclusion
To conclude, communication for and with people with a learning disability continues
to pose challenges in practice particularly for those individuals with a severe or
profound learning disability. As a result, there needs to be an acceptance in practice
of the challenges faced in translating complex information. PCP needs to be truly
established in services and by practitioners. Research needs to include a larger
sample of Behavioural Specialists from across the United Kingdom. Importantly,
research should readdress the lack of involvement for people with learning
disabilities. Client involvement should be the focus of further studies. This will not
only enable an understanding of their experience from their perspective, but also
ensure a truly collaborative approach.
Declaration of Conflicting Interests
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The author(s) declared no potential conflicts of interest with respect to the research,
authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or
publication of this article.
Tables
Table 1: Inclusion criteria
Inclusion for Behaviour Specialists Exclusion for Behaviour Specialists: Are currently undertaking this role
within a learning disability behaviour healthcare team.
Are utilising the PBS model in their daily practice.
Hold an active case load and develop and implement PBS plans.
Over the age of 18 years.
The role is not in a specialist behaviour healthcare team.
Not employing the PBS model in their practice.
Do not have an active caseload.
Table 2: Demographics of the participants
Group One Two ThreeNumber of participants in each group
4 3 2
Males 1 1 2
Females 3 2 0
Length of time in post
6 months to 4 years 6 months to 10 years 4 years to 10 years
Qualifications in PBS 1 Applied Behaviour
Analysis
3 2
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3 No qualifications
Qualifications 3 Psychology Degree
1 Teaching
Professional
2 Health Care
Professional
2 Health Care
Professional
Team composition 1 Unqualified
(1 participant had a
teaching and
psychology)
2 Qualified Nurses
1 Qualified
Occupational Therapy
2 Qualified Nurses
Table 3 – Major and minor themes
Major theme Minor theme
The communication process Understanding individual ability
Using alternative approaches
Avoiding distress
Complicating factors Complexity of need
Time/resources
Cognitive ability
Focus on the individual Observations and assessments
MDT working
Collaborating with carers
One to one interaction
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