Applying the principles of trauma-informed care in intellectual disability services
Intended for healthcare professionals
Evidence and practice    

Applying the principles of trauma-informed care in intellectual disability services

Katherine Dewey Assistant psychologist, learning disabilities, Southern Health NHS Foundation Trust, Southampton, England
Sarah Horsley Consultant clinical psychologist, learning disabilities, Southern Health Foundation Trust, Southampton, England

Why you should read this article:
  • To be aware that the prevalence of traumatic or adverse life events is high among people with intellectual disabilities

  • To understand that trauma-informed care is based on the rationale that in healthcare services there is the potential for traumatisation or retraumatisation in people who have been exposed to traumatic events

  • To recognise what trauma-informed care looks like in intellectual disability services, including the barriers to and enablers of implementation

Traumatic events are associated with actual or threatened risk to life, serious injury or sexual violence. The prevalence of traumatic events is particularly high among people with intellectual disability. Trauma-informed care is an important yet unresearched area in intellectual disability services. This article outlines the principles of trauma-informed care and considers how these can be applied in practice to people with an intellectual disability. The authors discuss the limited literature on the implementation of trauma-informed care in intellectual disability services, which is primarily drawn from case studies or non-empirical research. The article includes two examples of trauma-informed care implemented in intellectual disability settings and outlines areas for future research.

Learning Disability Practice. doi: 10.7748/ldp.2022.e2179

Peer review

This article has been subject to external double-blind peer review and checked for plagiarism using automated software

Correspondence

katherine@dewey.net

Conflict of interest

None declared

Dewey K, Horsley S (2022) Applying the principles of trauma-informed care in intellectual disability services. Learning Disability Practice. doi: 10.7748/ldp.2022.e2179

Published online: 28 April 2022

Introduction

Traumatic events, also known as adverse life events, are associated with actual or threatened risk to life, serious injury or sexual violence. People may be exposed to these events directly, for example by witnessing and/or experiencing them, or indirectly, for example because a close friend or family member has experienced or witnessed them (Muldoon et al 2019). After experiencing traumatic events, some people may develop symptoms such as flashbacks or nightmares and physical sensations such as pain. The effect of trauma is often persistent and can manifest in many facets of a person’s life, influencing their perspective and presentation (Brown et al 2012). The Diagnostic and Statistical Manual of Mental Disorders describes several conditions that fall under the category ‘trauma and stress-related disorders’, including post-traumatic stress disorder, acute stress disorder, adjustment disorder and unspecified stress disorders (American Psychiatric Association 2013).

The prevalence of adverse life events is relatively high in the general population. A nationally representative survey of English residents aged 18-69 years (n=3,885) found that the prevalence of childhood sexual, physical and verbal abuse was 6.3%, 14.8% and 18.2% respectively (Bellis et al 2014). The prevalence of adverse life events is higher in people with intellectual disabilities (Wigham and Emerson 2015). Morris et al (2020), for example, found that people with a developmental condition are more likely to experience adverse childhood experiences, such as physical abuse, emotional abuse and exposure to domestic violence. In their study of 36 adolescents with developmental conditions, 33 (92%) had experienced at least one adverse childhood experience and 21 (58%) had experienced four or more.

This is important to recognise as people with a history of traumatic life events have an increased risk of becoming distressed or retraumatised by healthcare experiences (Sweeney et al 2016). To mitigate this risk, healthcare services can adopt a trauma-informed care approach. Trauma-informed care is based on the rationale that in healthcare services there is the potential for traumatisation or retraumatisation of people who have been exposed to adverse life events (Butler et al 2011). Trauma-informed services recognise the effect of traumatic experiences and are sensitive to the potential for trauma-related issues to emerge in their patients, while trauma-informed care acknowledges a person’s presentation and behaviours as coping strategies and asks what has ‘happened to’ rather than what is ‘wrong with’ them (Butler et al 2011). Additionally, trauma-informed care ensures that all aspects of an organisation’s policies, practices and procedures reflect sensitivity to trauma (Butler et al 2011).

Despite the prevalence of traumatic life experiences among the general population, trauma-informed care has not been widely researched or implemented in healthcare settings (Reeves 2015). There is even less research about trauma-informed care in intellectual disability teams.

This article explores what trauma-informed care looks like in intellectual disability services by considering the principles of trauma-informed care and the barriers to its implementation in these settings. It includes summaries of two case studies, one that described the successful implementation of trauma-informed care in an intellectual disability service (Goad 2021) and another that described how one service user benefited from a ‘systemic formulation’ drawing on trauma-informed care principles (Gregson and Delaney 2021). Systemic formulation involves viewing and understanding a person’s presentation in the context of relationships and the system around them (Gregson and Delaney 2021).

Key points

  • The prevalence of exposure to traumatic events is disproportionately higher for people with an intellectual disability

  • People with a history of traumatic life events have an increased risk of becoming distressed or retraumatised by healthcare experiences

  • To mitigate the risks of retraumatisation, healthcare services can adopt a trauma-informed care approach

  • Trauma-informed care should be reflected in national and local policies, and procedures to standardise practice

  • Staff training is essential to increase understanding of trauma-informed care

Principles of trauma-informed care

Fallot and Harris (2009) outlined five principles of trauma-informed care in the general population: safety; trustworthiness; choice; collaboration; and empowerment. Keesler (2014) extended these principles to consider intellectual disability populations specifically.

Keesler (2014) stated that in intellectual disability organisations safety can be achieved through training direct care staff in crisis prevention and intervention, providing staff with debriefing following crises and educating people with intellectual disabilities proactively in social skills, self-advocacy and issues related to sexuality. Keesler (2014) also suggested managers should take proactive measures to ensure staff are fully trained in the needs of the people they are assigned to support before working with them, rather than encouraging staff to read relevant documentation when they have the time.

Trust is a critical component of a person’s healing and sense of safety after experiencing trauma (Butler et al 2011). Keesler (2014) explained that for people with intellectual disability trust can be formed through sensitive, consistent and reliable interactions with professionals involved in their care.

Choice is integral to a person’s quality of life, particularly in the intellectual disability field (Keesler 2014). However, there are barriers that prevent people with intellectual disability from exercising choice, including concern about a person’s vulnerability and limited decision-making capacity and the risks involved in making choices, for example when making decisions about complex medical treatment (Curryer et al 2015). Training is essential to educate staff about how to support people with intellectual disability to enhance their decision-making skills and abilities (Keesler 2014).

Collaboration plays an important role in trauma-informed care. Care plans should be developed collaboratively between staff and service users and incorporate service users’ preferences as much as possible. Power dynamics between staff and service users are important to consider in the context of boundaries. An over-involved approach, for example, can result in staff blurring the boundaries and crossing into a friendship rather than a professional relationship when attempting to meet a service user’s request. Conversely, staff who adopt an under-involved approach may appear to act ‘coldly’ by focusing on safety, risk and restriction (Hamilton 2010). Staff need to be able to reflect on their boundaries with service users and be adaptable and resilient when developing relationships (Jaques et al 2018). Collaboration could involve staff working with service users to complete certain tasks, such as household chores, rather than service users relying on staff to complete tasks for them (Keesler 2014).

Empowerment is the final principle of trauma-informed care. Service users and staff can feel empowered through recognising their own strengths and abilities which, in turn, might help them to solve challenges and overcome obstacles using their own resources (Keesler 2014).

Barriers to implementing trauma-informed care in intellectual disability services

The ability to recognise and assess trauma in individuals is the first step in providing trauma-informed care (Reeves 2015). However, research indicates that mental health professionals do not often enquire about a person’s history of traumatic exposure (Cunningham et al 2016). Among professionals, barriers to this enquiry include (Mansfield et al 2017):

  • Lack of confidence in how to enquire about trauma.

  • Lack of confidence in how to respond to and manage disclosures effectively.

  • Lack of awareness of protocols to follow after the person has made a disclosure.

  • Lack of awareness of resources to support the person who has made a disclosure of traumatic experiences.

These barriers could be exacerbated when working with people with intellectual disabilities, as healthcare practitioners may be unsure how to navigate clients’ cognitive and communication challenges (American Psychiatric Association 2013).

Another barrier to implementation of trauma-informed care specific to intellectual disability services is a fragmented referral system. In their qualitative study with practitioners from specialist intellectual disability services, Truesdale et al (2019) found that traumatic stress was often not the primary reason for a person’s referral to these services and appeared to go unreported and therefore untreated. Instead, commonly reported reasons for referral included assessment and management of behaviour that challenges. This suggests that traumatic events are not routinely assessed and links are not made to clinical histories (Truesdale et al 2019).

Moreover, while there is a clear conceptualisation and diagnosis of trauma for the general population (American Psychiatric Association 2013), there is a risk that trauma diagnoses are missed in people with an intellectual disability because of diagnostic overshadowing (McLennan 2018). Diagnostic overshadowing in this context refers to a situation where a person’s mental and physical symptoms are wrongly attributed to their intellectual disability (Javaid et al 2019).

In intellectual disability settings there are challenges related to the recruitment and retention of staff, in part due to the challenge of working with service users with complex presentations, particularly in terms of behaviours that challenge, which can contribute to staff burnout and increased staff turnover (Judd et al 2017, Ryan et al 2021). This makes it challenging to achieve the organisational and workforce consistency required to implement an effective trauma-informed care model, which depends, in part, on staff trained in the concept and with whom service users are familiar and believe they can trust.

Literature on trauma-informed care

There are a limited number of studies that focus on the implementation of trauma-informed care in intellectual disability services, therefore evaluating its effectiveness is challenging. However, there is evidence of success of trauma-informed care in non-intellectual disability populations. Cadman et al (2012), for example, found that providers with an in-depth knowledge of trauma symptoms were better equipped to support women who had experienced sexual abuse to manage distress during provision of healthcare. Meanwhile, a synthesis of the literature on trauma-informed care for survivors of physical and sexual abuse (Reeves 2015) found that a trusting provider-patient relationship can help to achieve balanced relationships and empower patients to discuss traumatic experiences.

While this research in non-intellectual disability populations is promising, it is critical that future studies evaluate the implementation of trauma-informed care in intellectual disability services specifically. One such study, by Keesler and Isham (2017), evaluated an organisation’s attempt to develop a trauma-informed day service in an intellectual disability setting using a mixed methods design, involving secondary data analysis and semi-structured interviews. The authors found a significant reduction in behaviour that challenges, aggression and when-required medication. The study also revealed staff satisfaction with work experiences and that they believed they could make a positive difference to service users. Staff also experienced personal growth (Keesler and Isham 2017).

Other research of this topic in intellectual disability services is largely non-empirical or based on case studies. A summary of two such case studies are outlined below.

Implementing trauma-informed care in a learning disability service

Goad (2021) wrote a reflective account of her trust’s experience of introducing a trauma-informed care model in one learning disability service. This experience involved four stages: developing awareness; developing the identity of trauma-informed care; empowering staff through a framework of language; and developing the vision.

‘Developing awareness’ involved assessing staff in a learning disability team’s readiness for change and identifying potential challenges to implementing trauma-informed care. Some examples of the questions used to identify potential challenges were:

  • What is the team’s understanding of trauma-informed care?

  • How closely aligned are staff members’ own professional models with a trauma-informed care model of understanding human distress?

  • How can we find ways to engage with people and get them excited about the possibilities of trauma-informed care for our services and for themselves?

  • What are the main barriers to change?

The learning disability team members started generating conversations about trauma-informed care in a curious and sensitive way which, in turn, began to integrate trauma-informed care into the team’s culture and ethos. Goad (2021) stressed that actively listening to and acting on what team members had to say was important in terms of developing a culture that was ready to embrace change.

‘Developing the identity of trauma-informed’ care meant demonstrating how trauma-informed care complemented the agenda of the trust’s intellectual disability service while, at the same time, highlighting how it was different enough to be a worthwhile investment. A series of questions was asked to formulate the identity of trauma-informed care in the organisational culture:

  • What are the important agendas and priorities in our team and organisation?

  • Do these agendas align or clash with trauma-informed care?

  • How might differences and similarities be managed?

  • What are the core values underpinning our own, our team’s and our organisation’s values and how do they fit with trauma-informed care?

The next stage focused on ‘empowering staff through a framework of language’. Goad (2021) explained the importance of developing a shared language that ensured staff felt empowered to share their ideas for change. It is important to encourage the use of non-pathologising language – that is, language that does not use clinical labels – as this aligns with the trauma-informed care ideology of ‘understanding what happened to you’, not ‘what is wrong with you’. A one-day training session, which included the theory of trauma-informed care and a reflective space in which staff could share their views on introducing a trauma-informed care model into their service, was delivered using a staff-led, bottom-up approach, which has been shown to be more effective than imposing change on staff (West et al 2014).

‘Developing the vision’ was approached through a model that incorporated objectives developed by staff which provided direction for the team. The model comprised six objectives:

  • Raising awareness of trauma-informed care.

  • Training intellectual disability staff in the principles of trauma-informed care and ensuring their access to trauma-informed supervision.

  • Developing accessible literature for service users, carers and providers.

  • Addressing systems and processes to incorporate trauma-informed care into everyday processes and procedures.

  • Prioritising staff support and well-being.

  • Environments become trauma-informed so that staff and service users feel safe.

For each objective, ‘quick wins’ were developed to maintain staff morale and enthusiasm for the initiative, as well as long-term goals.

This case study is one of the first accounts of a trust’s experience of transforming its intellectual disability service to become trauma informed. Goad (2021) acknowledged that, while it is likely the trust made mistakes during the process, risks must be taken to allow for the possibility of change.

Using a trauma-informed approach in practice

Gregson and Delaney (2021) reflected on their experiences of using a trauma-informed, systemic team formulation approach to support Jane – not her real name – a woman with intellectual disabilities and a history of trauma. The following brief overview demonstrates how they adopted a ‘trauma lens’ and the positive outcomes of this approach.

An assessment was undertaken involving an in-depth review of Jane’s clinical care records. From this a timeline of events was developed and initial hypotheses were discussed. This initial review revealed that Jane had experienced much trauma and loss throughout her life.

A consultation session was held with Jane’s staff team during which the initial formulation and hypotheses were shared and further information about Jane was gathered. Jane’s history of trauma was discussed with her staff team, particularly in relation to how this may have shaped the way she interpreted information – for example, she believed that ‘the only time people care is when I am not doing well’ –and how she viewed herself. Following this consultation, a tentative systemic formulation was developed by Gregson and Delaney which was then shared with Jane’s staff team during a systemic formulation session. This involved discussing Jane’s history and how this may have affected how she saw herself and the world around her. The shift in focus to understanding Jane’s experience through a trauma framework supported staff to develop alternative ideas about and explanations for her behaviours. Instead of regarding Jane as ‘the issue’, staff began to understand how the system around her, including themselves, affected her (Gregson and Delaney 2021).

Discussion

Keesler (2014) recommended that intellectual disability services adopt a trauma-informed care framework. While some of the literature indicates that intellectual disability services may already use practices that align with the principles of trauma-informed care (Keesler 2020), organisations such as the Department of Health and Social Care should develop standards for service providers to use when working with people with intellectual disability who have experienced trauma that affects their behavioural presentation. Further, individual service providers should incorporate these standards into local operating policies. Clear policies increase staff understanding and cooperation and ensure that practice is safe and effective (The Tavistock and Portman NHS Foundation Trust 2022). NHS trusts also need to develop clear local policies in intellectual disability services that outline the steps required to create services that adhere to the five principles of trauma-informed care. This would ensure that services are standardised, of high quality and can be tested and improved.

Trauma must be accurately assessed and appropriate interventions implemented. To achieve this, intellectual disability services should use an appropriate psychometrically validated tool to assess trauma. One example is Wigham et al’s (2011) Lancaster and Northgate Trauma Scales (LANTS) which was developed as a measure of trauma for people with mild to moderate intellectual disabilities. Wigham et al (2011) recognised the need to develop a measure comprising a self-report to gather information on a person’s subjective internal state and an ‘informant version’ to mitigate potential challenges of using self-report with people with intellectual disabilities – for example, if the person finds understanding or communicating information challenging this could affect the validity of their report. The measure has been shown to have good psychometric properties, including internal and test-retest reliability, as well as convergent and construct validity (Hall et al 2014). Implementing standardised tools is crucial to enable clinicians to develop tailored intervention plans that are based on a trauma framework.

According to Schoech (2017) there is a lack of training on trauma-informed care for clinicians who work with people with an intellectual disability, which can hinder their timely recognition of trauma in this population which, in turn, is a barrier to implementing appropriate interventions. Keesler (2016) found that training in trauma-informed care can improve staff understanding of trauma in people with an intellectual disability, particularly in terms of how it may affect their presentation. However, Keesler also found that few staff recognised the intended effect of trauma-informed care on them and focused predominantly on the effect on service users. Training, therefore, should emphasise both aspects of trauma-informed care.

To address issues related to staff recruitment and retention and potential burnout in intellectual disability services, an integrated approach to trauma-informed care should be adopted involving collaboration between health services, local councils and clinical commissioning groups.

Future research should address several areas. The tools used to assess people with an intellectual disability for trauma, such as LANTS (Wigham et al 2011), must be evaluated for factors such as test-retest reliability, interrater reliability and construct and content validity. This is crucial to ensure that trauma is recognised and to enable implementation of appropriate interventions. Research should also use outcome measures to evaluate the effect of training staff in trauma-informed care on factors such as their understanding of the concept, organisational culture and outcomes for service users.

At present there is no standard method of implementing trauma-informed care in intellectual disability services. However, once this practice has been established, randomised controlled trials should be conducted to provide high-quality, reliable data about the efficacy of trauma-informed care in this setting.

Conclusion

While trauma-informed care in intellectual disability services is a relatively new area of research, it is crucial to enable the timely recognition of trauma in people with an intellectual disability and implementation of appropriate interventions. It is important that trauma-informed care is reflected in national and local NHS policies and procedures to ensure practice is standardised and to develop clear guidelines for staff. All services that use a trauma-informed care framework should document the process to contribute to understanding of trauma-informed care, particularly the benefits and potential barriers to implementation. Staff training is essential to increase understanding of trauma-informed care and to shift organisational culture to align with the five principles of trauma-informed care.

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