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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, 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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