Content area
Purpose
The purpose of this paper was to investigate the utility of including emotional development (ED) assessment into a Positive Behaviour Support (PBS) approach in clinical practice with a patient with an intellectual disability (ID) and challenging behaviour.
Design/methodology/approach
Interviews were conducted with four staff involved in the care of the patient. The interviews were transcribed and analysed using thematic analysis and three reflective sessions were completed with the lead psychologist of the service.
Findings
Using thematic analysis, four themes were identified: getting everyone around the table: a collaborative approach, complementary approaches: a feedback loop, helping to make sense of the individual and ensuring a voice for service users.
Research limitations/implications
This was a case study selected from routine clinical practice and as such generalisability may be limited. This case study was designed as an exploration of the potential benefits of incorporating ED alongside PBS for ID and provides a basis for future research.
Practical implications
This study highlights the value of integration of ED assessment for people with ID and challenging behaviour within a healthcare team.
Originality/value
There is a lack of literature relating to ED and challenging behaviour within an ID population, particularly exploring ED within a PBS framework. This study provides a starting point for exploring how practice can be improved through incorporating ED assessment for individuals with ID and challenging behaviour.
Introduction
Positive behaviour support (PBS) is a multifaceted framework developed to support people with an intellectual disability (ID) (also referred to as a learning disability) who present with challenging behaviour (Gore et al., 2013). PBS applies the principles of applied behaviour analysis through evidence-based interventions and is commonly used within ID services (Cooper et al., 2019; Gore et al., 2013; Lewis et al., 2021). The overarching aim of PBS is to improve quality of life for the individual and system around them through reducing challenging behaviours and educating caregivers (Goh and Bambara, 2012; Gore et al., 2013). PBS is one of the leading interventions for working with individuals with ID and challenging behaviour in the UK (LaVigna and Willis, 2012; Royal College of Psychiatrists, British Psychological Society, and Royal College of Speech and Language Therapists, 2007). However, there have been mixed findings relating to the efficacy of PBS in reducing challenging behaviour. Multiple randomised controlled trials of PBS-based staff training for adults with ID found that there was no significant reduction in challenging behaviour compared to treatment as usual (Bosco et al., 2019; Hassiotis et al., 2018). Thus, questions have been raised as to the efficacy of PBS interventions.
As behaviour is driven by our emotions, it is important to consider that weaknesses of PBS may be related to a lack of consideration of emotional development (ED) level (Izard, 2009). ED can refer to an increase in the ability to experience, express and understand a range of emotions across the life span, and to be able to process and cope with these effectively and appropriately. It has consistently been found that ED can be at a lower level than cognitive development in an ID population (Došen, 2014; Sappok et al., 2014; La Malfa et al., 2009; Sterkenburg et al., 2021; Vandevelde et al., 2016). Discrepancies between chronological and ED age in ID could be attributed to experiences of trauma, which subsequently cause challenging behaviour. A causal relationship between challenging behaviour and trauma has been established in the literature (McNally et al., 2021), and we know that those with ID are at a significantly higher risk of experiencing trauma. A systematic review and meta-analysis by Fang et al. (2022) estimated that one third of children with a disability, including ID, are victims of violence. Research has also demonstrated that one in three adults with an ID will experience sexual abuse in adulthood, and that there is a further increase in sexual abuse towards those with an ID in institutionalised settings (Tomsa et al., 2021). A meta-analysis by Hughes et al. (2012) reported that adults with ID had a 1.6-fold higher risk of exposure to violence compared to adults without ID. Despite the evidence for a significantly higher prevalence of trauma in an ID population and the impact this has on challenging behaviour, the influence of trauma on ED has not been substantiated. Individuals with ID who cannot regulate their emotions independently in line with their chronological stage of ED present with higher levels of challenging behaviour as a way of expressing their needs (Emerson et al., 2014; Hermann et al., 2022; Sappok et al., 2012a, 2012b). It has consequently been raised that ED, alongside cognitive development, should be assessed in those with ID (Došen, 2007; Flachsmeyer et al., 2023). Due to the aforementioned limitations, ED work could therefore add value to PBS.
One method of assessing ED is using the Scale of Emotional Development–Short (SED-S), a third-party measure used to assess ED in people with ID (Sappok et al., 2016). The SED-S is a robust measure which has been validated by Sappok et al. (2020) and Sterkenburg et al. (2021) in samples of individuals with ID, giving it a strong empirical basis. Assessing ED can contribute to a clearer understanding of the causes of challenging behaviour, and better meet an individual’s needs (Sappok et al., 2016). Early assessment of the emotional needs of an individual with ID, particularly if they are presenting with challenging behaviour, can allow for early detection of mental health problems and effective interventions, as well as contributing to the individual’s overall wellbeing (Flachsmeyer et al., 2023). Individual therapeutic recommendations can be derived from the SED-S and used for support planning. Community Learning Disability Teams (CLDTs) in our local region have commenced using the SED-S as part of their work, but our service has only recently started incorporating ED assessments as part of the PBS pathway to understand challenging behaviour and enhance a PBS approach.
The following is a case study of psychology professionals introducing ED into a PBS approach led by ID nurses. This service development project was identified as a way to work towards trauma-informed care within the service and Trust. The authors felt that acknowledging ED needs within an ID service would contribute to more trauma-informed and holistic support.
Background information
The patient was a 56-year-old male with mild/moderate ID, anxiety and obsessive-compulsive disorder diagnoses. He was living in independent supported living with 24/7 1:1 support and attended a day provision throughout the week. He had experienced a significant amount of physical, financial, and emotional abuse throughout his life. He had also experienced multiple bereavements in his immediate family, including by suicide. The patient had previously been detained in a specialist ID mental health hospital following attempts to end his life.
Referral
He was referred to CLDT by his consultant psychiatrist due to concerns from support staff around the patient’s frustrations, and a lack of understanding of this was threatening his connections with staff in his placement. His referral was allocated to the enhanced PBS team and led by an ID community nurse, who made an additional referral to the psychology service.
Assessment and intervention
PBS followed by SED-S assessment work was completed with the care team. A PBS plan, escalation curve, and SED-S report were disseminated to the staff team through multi-agency feedback sessions. Supervision sessions were also offered to support staff, and two sessions were held for two months after the main pieces of work had been completed. The patient was discharged following nine months in the service.
Interviews
Participants were identified through their involvement with the service and this patient and were approached by the lead author following the completion of work. Semi-structured interviews were held individually in person with the direct care provision staff, and a group interview was held for the two NHS professionals. Interviews lasted between 25 and 50 min. The same topic guide was followed for the support staff, and a different one used for NHS staff. The questions were aimed to prompt reflection on the usefulness of PBS and SED-S assessments, the methods of combining the two pieces of work, as well as any increase in knowledge, understanding or confidence as a result of using the SED-S. Interviews were audio recorded and automatically transcribed using Microsoft Teams. The data was then transcribed and analysed using inductive thematic analysis using the six stages outlined by Braun and Clarke (2006). Following this, sessions were held with the psychology lead in the service to reflect on the content of interviews. The lead author and psychology lead held three in-person reflective sessions, which involved listening to the audio recordings and making notes regarding the themes then discussing these.
Trustworthiness of data
To ensure credibility, the lead author spent prolonged time with participants throughout the clinical work to build rapport and understand their perspectives and opinions better. Moreover, themes identified by the lead author were then compared to themes identified independently by the co-author to ensure triangulation of the data.
Confirmability was ensured through peer debriefing processes with colleagues. The authors sought feedback on identified themes from colleagues to validate interpretations in light of potential personal biases. The reflective sessions were additionally used to reflect on the authors’ personal thoughts and biases when reviewing the transcripts and how this could influence the analysis of the data. For example, assuming that current maladaptive behaviour was influenced by past trauma. Moreover, the authors acknowledged comments which contrasted with the codes or themes and discussed rationale for these comments.
Ethics
Ethical approval was provided by the NHS institution and registered as a quality improvement project with the Trust. Each participant who was interviewed was provided with an information sheet about the project, how their data would be stored and informed consent was gained.
Qualitative interviews
The analysis highlighted four central themes: getting everyone around the table: a collaborative approach, complementary approaches: a feedback loop, helping to make sense of the individual and ensuring a voice for service users.
Getting everyone around the table: a collaborative approach
All participants discussed how productive a collaborative multi-agency approach was whilst completing the PBS and SED-S work. The notion of agencies collaborating to ensure a holistic approach to care was particularly highlighted as a positive outcome:
I think from my perspective it's about that holistic view of the person […] it was great to get sort of all parties together and discuss the work that we had done and the findings of the of the work and how that can be used to support the service user better. P3
So, when we all got to sit round the table and notice the different behaviours and things that was that was really useful […] I think the more people involved, the better. P4
You know it's nice to be able to impact the whole of somebody's life. You know, this person obviously lives at this home, goes to this day centre, has this social worker […] that was good to have so much involvement from so many different areas of his life. P2
There's something about that multi agency working and I think that's incredibly important in PBS cases […] PBS work shouldn't be about just purely developing the plan, it should be about that shared understanding […] and definitely thinking about emotional development is really important [in PBS cases]. P3
Although participants accepted there was more effort in getting all agencies together, it was acknowledged that it was important to take the time to reflect and “get around the table”:
I think it's just taking the time to sort of sit down and analyse a lot of the, you know, a lot of the things that occur in service, you're not really having that time to decompress it or to even to talk to colleagues about it or even go over it. So I think having, you know, having a time to just sort of really dive into it is what kind of opened maybe my thoughts to anyway. P4
Complementary approaches: a feedback loop
Participants indicated that completing the ED and PBS work in combination allowed the PBS plan to inform the SED-S work and vice versa. It was then suggested that through this feedback loop, both pieces of work are enhanced by one another to produce more successful outcomes. It was also suggested that the SED-S and PBS had different uses that both contributed towards effective support and care for the patient and worked well together:
It is useful [PBS plan], but I guess this [SED-S] kind of informs this [PBS plan] and vice versa. P1
I suppose the PBS plan is the thing that is almost like guiding the care plan. So if you had a SED-S report, but that wasn't reflected in the PBS plan, I don't think you've got a good PBS plan, because you've got something missing. The SED-S needs to be informing the PBS strategy […] before you develop your [PBS] interventions, you need to understand someone’s developmental age. P3
I think they kind of feed into each other and you can see how it's triggers and how he behaves links directly into the SED-S. P4
But yeah for day-to-day running of the service, I'd say we can use it [SED-S] to just sort of direct our thinking […] the behaviour curve it is much is much easier to give to new staff […] the service user is quite complex and his behaviours, but that's [PBS plan] what I'd be showing new starters. Whereas this [SED-S] is useful for long term for long-term staff. P4
It was suggested that using an exclusively PBS approach would have been limited, in this case:
I think, and particularly it goes back to the SED-S, purely just the PBS plan that we did was limited […] I think the PBS plan by itself is a bit of a limited tool P3
Helping to make sense of the individual
A recurring theme was that looking at an individual’s ED allowed staff to contextualise their challenging behaviour and understand the function and cause of maladaptive behaviours or communication (Figure 1):
We certainly have learned about how he struggles to express emotions or something's not going his way, he struggles to deal with that and I guess we've kind of got a more applied context as to why that's happening […] This [SED-S] provides so much more context to the service user, and being able to understand that is useful […] P1
I think that adds more depth to a piece of work and more value and because you're not just thinking about why behaviour happens and what you do to stop that behaviour, you're starting to look at the context around why someone might be using some maladaptive strategies. P3
I know that there's a lot more to it than just picking an age number. There's so many different factors to it [emotional development], and it's not as simple as just putting one age number on a person. P1
More broadly speaking, there were also suggestions of how adverse life experiences and trauma can influence a person’s ED, and therefore their presentation. It was therefore highlighted as an important consideration when working with patients who present with challenging behaviour:
So particularly thinking of, you know, experiences of trauma and of abuse, looking at how they change someone's life experiences across the age range, so thinking about that development […] P3
Allowing staff to “make sense of” the patient appeared to encourage an increase in compassion and acknowledgement of the impact of adverse life experiences on the patient’s presentation:
I would hope that there's something about building that idea of compassion […] I think what's really important is to be able to describe the areas where there is a deficit and maybe have a look beyond the SED-S why there's a deficit in the area. So, you know, is this about an experience of trauma and that's why the person is struggling with relationships for example? P3
I think it's been trying to be more empathetic, trying to get a deeper understanding as to why an individual […] is making the choices they make and the behaviour they exhibit. But I think it's quite easy just to get bogged down in in generalisations and I think it was really important to focus on an individual and how they're interpreting the world and how we can relate to that and cope with that. P4
It also raised questions about the relationship between ED and trauma, and what this means in terms of an individual presenting with challenging behaviour:
How does emotional development work sit alongside trauma and kind of, you know, adverse childhood experiences? How does it sit alongside emotional regulation? P3
Ensuring a voice for service users
Finally, the potential limitations of the SED-S were discussed by all participants, particularly in terms of lack of direct involvement of patients in the assessment:
So yes, but you know it is his meeting and his voice is important to an extent […] I don't know, was it a conscious decision not to include the service user in any of this or is that just the way that it goes? P1
If you can involve the service user if that's possible, you know maybe not in this service user’s case. But obviously if you want to do it with other people in the future then it could be quite useful umm to have them involved even just to get an idea of what they're like. P4
Furthermore, there were concerns that information regarding ED age equivalent levels could be used incorrectly to misrepresent the individual:
I just hope that it wouldn't be used wrong, you know, like in terms of, he acts like a kid, he can't get past that […] I would just worry that you know a lot of stress will be put on well he functions as a four-year-old, five-year-old or whatever […] having that attitude wouldn't be great, I don't think. P2
If you did, just put the one age and […] sort of did everything based on that kind of age group, because you would probably end up getting challenging behaviour because […] why [are] they treating me like I'm a child here when I've got adult understanding of this? P4
Case reflections from interviews
Following interviews with participants, each audio recording was listened to, and both researchers independently made notes to discuss. The first interview with P1 indicated to us that this participant was utilising the ED and PBS work to implement changes in practice following the work. P1 provided examples of how their service has integrated recommendations from the SED-S such as the importance of role modelling and not directly challenging the patient. P1 spoke about when the patient is “in the green” [regulated] they are empowering him to have more freedom to dictate what and how he would like to do activities. We reflected how important empowering the patient was and the idea of collaborating with them, but also collaboration between professionals. We liked when P1 described how they would “guide him” instead of forcing things on the patient, and that through this improved communication between professionals, services have been able to better communicate with the patient and avoid more challenges or confrontations. The lead psychologist also highlighted the significance of the lead author explaining that the SED-S age equivalent levels were used cautiously and that these were not intended to be perceived as derogatory towards the patient. Naming this explicitly seemed important to ensure again that the patient’s voice was not overpowered. Overall, from this interview what stood out were the changes in thinking and understanding which have consequently led to positive changes in staff practice and attitudes towards the patient.
Interview two was with P2 and P3, who were NHS professionals. We discussed the significance of ID nurses and support workers acknowledging the weaknesses of PBS, despite this being their model of practice. They acknowledged that the SED-S added insight into life experiences and trauma which would not necessarily be included in standard PBS practice. From this, it appeared that staff were able to understand why the patient struggled and therefore increased the value of the work for stakeholders and the patient. It was apparent that P2 and P3 shared P1’s concerns around the potential misinterpretation of developmental age equivalent levels, and the impact this could have on attitudes towards a patient. Although this wasn’t an issue in this case, we discussed how important it is to hold in mind for future work. Another significant conversation was around acknowledging that these participants regarded the SED-S as complex or abstract compared to PBS work. Not only was the SED-S viewed as complex, but participants also acknowledged the complexity of the patient. We reflected on how his life experiences, trauma, and mental health difficulties all fed into his presentation, and spoke about how additional and potentially more “complex” measures may be necessary in certain cases to optimise the outcomes and enhance PBS plans.
Finally, from the interview with P4 what stood out to us was the increase in empathy and empathic language being used. They spoke about how understanding how behaviour and feelings interact, through the ED and PBS work, enabled them to empathise with the struggles the patient experiences. A phrase we highlighted was when P4 stated that they “worked for the patient”. To us, this seemed important as it felt that P4 was continually working for the patient’s benefit, and to help evolve their own understanding of the patient. Furthermore, we acknowledged that P4 appeared conscious of the language they used when referring to the patient and the age equivalent developmental levels. As this participant had worked with the patient the longest, we felt they were able to appreciate the variability in development and abilities. It felt validating for us to see how effectively P4 used the ED information from the SED-S to disseminate within their practice. P4 made an interesting point about using the PBS plan and escalation curve more with new staff members during their induction, but that they would use the SED-S report for longer-term staff. We reflected that it seemed P4 was indicating that staff need to have a good understanding of the patient and their behaviour before they are able to understand the context underlying the behaviour and how this relates to ED. This was interesting in informing how we could pitch the ED and PBS work depending on the role or experience of the staff member.
Reflecting on the wider piece of work, the authors discussed the value of thinking about ED needs for people with ID and how best to meet their needs. The authors reflected their own anxieties surrounding the risk of infantilising people with ID, but also the risk of overestimating ED and therefore overlooking needs. This case reflection highlighted the importance of establishing developmentally appropriate expectations and subsequent effective interventions, and ensuring that the care matches the emotional needs of an individual with ID (Sterkenburg et al., 2021). Considering attachment difficulties within this framework is also essential to appropriately support someone within their zone of proximal development (Vygotsky, 1978), to prioritise optimal independence whilst also supporting ED needs.
Discussion
The purpose of this case study was to gain insight into NHS professionals’ and direct support staff’s perspectives regarding the use of assessment of ED, using the SED-S, alongside PBS in clinical practice. The emerging themes suggested that the SED-S and PBS encouraged a collaborative approach, enhanced each other in terms of increasing positive outcomes, and helped staff to make better sense of the patient. Further sub-themes identified that the SED-S and PBS ensured a holistic approach as well as prioritising time to reflect together as professionals. Furthermore, the SED-S enabled an increase in compassion for support staff and ensured they were working with an awareness of the patient’s trauma, which provided context for the PBS plan.
Implications for clinical practice
This information provides valuable insight into PBS and ED work for people with ID who present with challenging behaviour. There is a lack of research into ED in individuals with ID, and formal ED assessments have not been standard practice within our service. Participants stated that understanding ED allowed for an increase in compassion towards the patient and enabled professionals and staff to become more aware of the influence of trauma on his presentation. This had a positive influence on ensuring services are working in a trauma-informed manner and enabled compassionate care.
Although this case study has focused on ED assessment integrated with PBS, it is valuable to consider the use of ED assessment as a standalone intervention. Within the service, PBS and behavioural interventions have been standard practice, but it is paramount to consider the appropriateness of PBS for all individuals with ID. Behaviour that could be viewed as “challenging” can instead be in keeping with the person’s ED age equivalent level, and thus, require ED assessment and support instead of behavioural intervention work. This raises wider issues around the potential over-reliance on behavioural change work for people with ID, which can fail to ensure practice is trauma-informed and person-centred.
The qualitative information gathered will support future practice within the service, particularly looking at the theme getting everyone around the table: a collaborative approach. This theme suggested that the multi-agency approach enabled professionals from all aspects of the patient’s life to contribute to a holistic understanding of the patient and their difficulties. This allowed for a deeper understanding of the patient’s presenting difficulties and an insight into how historical trauma can manifest in current presentation (Sappok et al., 2012a, 2012b). This is particularly pertinent given the focus of the Trust and wider NHS to move towards ensuring care is trauma-informed in recent years.
Despite the strengths of the SED-S, one theme focused on potential limitations of the measure. Ensuring a voice for service users was identified by all participants as a significant limitation of the SED-S. As the SED-S is a third-party measure, there is no direct involvement with the patient and therefore relies on the system around the individual to give their opinions on ED.
Professionals reflected their concerns that the ED age equivalent levels could be misinterpreted if not correctly explained or disseminated. The SED-S can be used as a corrective measure to prior over-estimation of abilities, which can ensure there is the correct level of support for people with ID based on their accurate ED level. Participants stressed how important the feedback sessions were to correctly explain the information in the SED-S report and to generate a shared understanding of the results, which also allows for re-formulation of the patient’s presentation based on accurate information about ED level and abilities. This information can be used to support colleagues with assessments to determine necessary support for people with ID.
Limitations
As the lead author completed the assessment and interventions as well as conducting the interviews with staff, under supervision of the psychology service lead, there is potential for bias. Participants may not have felt as able to communicate their opinions and therefore the qualitative results may not be as representative of potentially more negative opinions. In future, it would be better to have an impartial interviewer to prompt honest feedback. However, it was an achievement to conduct the research in a busy NHS service. It is also important to consider the methodological limitations of a case study, including generalisability of findings. It is hoped that this case study offers a basis for future research to build upon.
Future research
This case study highlights the need for further investigation of ED within an ID population. More specific research could aim to develop a deeper understanding of the influencing factors of ED in an ID population. For example, how trauma can impact ED and influence an individual’s current presentation and challenging behaviour. If this relationship was explored further, it would enable professionals to become more aware of how adverse life experiences can influence ED to ensure clinical practice is trauma informed. Leading directly on from this case study, we would look to apply the SED-S with more cases within our service and to be able to compare the experiences of other professionals. Moreover, the SED-S has the potential to be used as a measure of change to highlight an individual’s ability to develop emotionally through interventions.
Conclusions
The findings from this case study provide support for involving ED assessment in interventions for people with ID. The SED-S was found to be a useful measure to provide context for challenging behaviour and PBS interventions. Using this case study as a basis for future research into ED and associated factors such as trauma will help to enhance clinical practice. Considerations should be made into the level of involvement for the patient and to ensure that there is still a voice for them within the work. Overall, there are useful learning points for clinical practice and future research.
The authors would like to thank Dr Kelly Cocallis for her considerable support with this project. The authors have no potential conflicts of interest in relation to this paper.
Figure 1Thematic map depicting the four main themes and sub-themes
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