Processes for identifying and managing traumatic brain injury in the justice sector

Design

Justice sector staff were invited to participate in interviews between 1 March 2022 and 22 June 2022 in Aotearoa/New Zealand. Nine staff expressed an interest in taking part in the study and nine completed the interview. An interpretive descriptive (Thorne et al. 1997; Thorne 2008) approach was adopted. A key strength of this approach is the generation of practical recommendations that, in the context of this study, could inform initiatives to support TBI care reform within the justice sector.

Approval to undertake this study was obtained through the Auckland University of Technology Ethics Committee on 23 February 2022 (AUTEC Reference number 21/431) and Department of Corrections Research and Evaluation Steering Committee (RESC; approved 20 May 2021).

Recruitment

Justice sector staff with an interest in TBI were invited to participate in the study using a study recruitment flyer and email that were disseminated through the Department of Corrections. All staff who expressed interest in participating had the opportunity to talk about the study and were screened for eligibility. To be eligible to take part participants needed to: (i) be currently working within the justice sector and (ii) work in a position where they provided clinical care or oversight to people within the service. If eligible, a study information sheet was emailed to provide more detailed information about what would be involved. Following agreement to take part, a time was arranged to conduct the interview either in person or via Zoom, based on participant preference. Written informed consent was obtained prior to conducting the interview.

Data collection

A semi-structured interview approach (Robson 2002; Hofisi et al. 2014) with probing questions was used to explore perceptions and experiences about how TBI was managed and what could be improved (Table 1). Interviews were conducted by one researcher (L.W.) and were audio recorded and transcribed verbatim.

Data analysis

Transcripts were anonymised and uploaded into NVivo software (ver.12) for analysis. First, two analysts (L.W. and J.C.) independently open coded the transcripts inductively using a semantic and latent level interpretation of the text. Second, codes were clustered into higher-order sub-themes and themes representing concepts (Coffey and Atkinson 1996; Patton 2002). These were then organised into a conceptual framework representing TBI care in the justice sector and factors influencing change. Third, the two independently derived frameworks were compared and contrasted for areas of overlap and non-overlap. A meeting between the analysts (L.W. and J.C.) and A. T. as arbiter was conducted to develop an overarching composite framework. This process was dynamic, with sub-themes and themes being explored, altered and removed as needed (Thorne et al. 1997). Fourth, remaining interview transcripts were coded by L.W. into the composite framework, which was further refined in discussion with the research team (A.T. and J.C.) if there were any changes needed.

Theme 1. Need to know about current and historical TBIs

Participants, in both clinical and non-clinical roles, saw value in being aware of an individual’s TBI as it influenced how they would work with an individual.

You might think somebody’s been non-compliant. But they’re not, their brain’s fried, or scrambled, and not through drug use, or anything like that, but they’re suffering from a brain injury that you haven’t identified or are not aware of before. They can’t keep their appointments, you know, they constantly forgetting things they forget to ring you and tell you, they can’t come in and report, so it can have a really negative effect on their compliance level. If you don’t understand what you’re dealing with, you know, like, if you knew they had a brain injury, you’d be more tolerant, you’d try and find ways to do things differently suggest things, you know maybe a notebook or I’ll text you or, you know, a lot of other things to help them and to support them to get to where they need to be, versus you’re just being ignorant, noncompliant. (P5)

When asked about how TBIs were identified, participants focused more on identification of historical TBIs as they felt this was important to inform how they worked with a person. Participants suggested that there were multiple opportunities to ask about historical injuries early in the individual’s journey in the justice sector. If a consistent process were to be implemented, this would allow for the system to put the support, resources and expertise in place as soon as possible to support the individual. Clinical staff found historical TBI history information useful when assessing new injuries.

What would be extremely helpful is that when people come into contact with the justice sector, at the first point of contact, that there is an assessment of their level of function including fetal alcohol, brain injury, mental health, addiction, in that cohort of conditions could then determine a treatment pathway for the individual rather than a criminal pathway. (P2)

When asked about if there was a specific process that was followed after identification of a TBI, such as specific questions or tests, no consistent process was described by any of the participants. In reaction to historical injuries, one psychologist reported utilising questions from the Ohio State University TBI Identification method, however noted that they were more interested in the impact of the injuries on the person’s life and ability to function currently than in the specific details of the injuries sustained as elicited by the tool.

…just the basic head injury question. Have you ever had a head injury or loss of consciousness? Those questions that really were around the same types of questions and the Ohio State TBI screen, we just brush over those just to get the idea of any head injuries. (P4)

Participants referred to processes that were working well for other health conditions that could be used to inform a process for brain injury.

So if you think of somebody with an addiction pathway, there were assessment tools to use when they’re acutely unwell. This assessment tools to determine the level of withdrawal. There are assessment tools to determine the level of addiction and pathways of support. And then there’s residential and funded treatment and health professionals with specific roles supporting their treatment for their addiction. And it doesn’t seem to be that level of pathway for a person with brain injury. (P2)

Theme 2. Need to address factors affecting reporting of new injuries

Inter-staff communication was noted by participants to be important in identifying TBIs. Specifically, nurses relied on custodial staff to notice if a possible injury had occurred and communicate their concerns as nurses were often not in close proximity to the prisoners, unless seeing them for medication rounds or for scheduled check-ups.

Custodial staff are extremely good at notifying Health if they have any concerns about the wellbeing of the people that they’re looking after. And they are that first point of contact as far as response. (P2)

However, concerns were raised by participants about what happened if an incident had not been witnessed by staff or there were no obvious signs of injury such as bruising.

…these guys can get hit in the head and not let us know. It would have to be upon them to report it to us for us to actually take any action… (P6)

In these situations, participants mentioned that people in their care may not feel comfortable approaching staff and that fear of potential repercussions may prevent people coming forward.

Some people may, may be very scared. And they may openly say they’re scared and they need to be moved to a different unit, maybe where there’s more supervision… but other people may not speak up. (P7)

Another participant added that asking for help could be perceived as a sign of vulnerability, also acting as a barrier to identifying injuries.

It’s not an environment where people are encouraged to show signs of weakness, or vulnerability. So that isn’t always necessarily shared with the health team or the custodial team if there is a problem… (P2)

Some participants felt that some areas of how quality was measured in service delivery could be better aligned with other cultural worldviews. For example, two participants felt that evaluation criteria (assessments, outcomes, view of ‘success’) were not sensitive to different perspectives of ‘success’.

I think a bigger question is, does our westernised health model fit everybody’s health needs? (P1)

Theme 3. Need for clear healthcare pathways

All participants described that following recognition of a new suspected TBI, individuals were referred to a clinician (such as a nurse or general practitioner; GP) for initial assessment, diagnosis and were taken to the emergency department if needed. In prison, the person would be taken to the healthcare team; in the community, the person would be encouraged to make an appointment with their GP. However, the process for historical injuries of concern was much more varied. Several participants described referring the person to the mental health team or psychology team for review.

…if we felt something was a little bit off, we’d get the mental health clinicians involved because obviously…we have no ability to fully assess somebody or you know, suss out is this a brain injury or is this mental health? (P3)

However, the mental health practitioner in the study noted that they did not receive specific referrals for suspected TBI and did not feel confident to assess an individual with TBI. Consequently, onward referrals to other providers such as GPs or neuropsychologists were practiced.

…a referral will never be made specifically for brain injury… But then there’s some head injuries in there [referrals they do receive] … we will refer on, either to the GP or, or to the forensic team, which has a psychiatrist and sometimes the psychologist that that could, could possibly help. (P7)

Participants felt that communication between nurses and custodial staff was strong. However, other participants expressed uncertainty around what their or others roles were and what to do if they became aware of a suspected TBI that could be impacting a person in their care.

The custody staff might have a protocol where if somebody did get, like, hit in the head they would have to go, but I’m not really sure. (P6)

Participants reported that accessing healthcare providers and services for TBI, irrespective of their role, culture and location, was difficult. Participants stated that it was difficult to identify TBI rehabilitation service providers in their area and would like clearer guidance on how to get people access to the care that they needed. Participants advocated that health pathways were critical to providing appropriate health care yet TBI-relevant pathways were often unavailable or difficult to access.

People should also be able to access services without having to go through a convoluted referral process… we don’t have access to a neuro psychologist or a formalised pathway for access to concussion clinics or brain injury NZ, to provide any additional support… Some sites access Brain Injury NZ on release and discharge for people when they’re going into their home but not always within the prison environment. (P2)

Some participants also noted individuals can, and do, decline assessments following an injury. Some staff members had strategies for if individuals declined assessments such as conducting passive observations of the individual to ensure their condition was not worsening. However, it was not clear if this was consistently practiced as a formalised process.

Quite often, some of the people in our care are reluctant to be assessed and decline to be assessed… so we record how they are engaging, what they look like, what their gait and movement is like, and also speech. So that there is still a form of assessment occurring to determine how, or what plan we might need to put in place for that person. (P2)

Theme 4. Need for communication across the justice and healthcare sectors

Some participants found it challenging that an individual’s health and corrections data were often not linked between services or shared. This was a barrier to participants’ ability to review information about an individual’s TBI history, even if the information had been recorded at an earlier timepoint. Participants working with individuals in the community also reported that obtaining a health history of an individual in the justice sector was challenging because their health history often did not follow them into community services.

But it’s nine times out of ten when these guys come into this program we’re the ambulance at the bottom of the cliff, and we’re the ones that have to start climbing back up onto the cliff, to keep these guys to where we need them to get, whereas if we knew about it, we could have the process put in place before they come to the program. (P9)

Participants also noted difficulty sharing an individual’s health history both within prison departments and between the justice sector and community services. For example, some participants found it difficult to know if an individual had an active injury claim, or what the outcome of the claim was.

I’m aware that if a person on the community presented to the GP with an injury they get a letter back from ACC [Accident Compensation Corporation], saying that your claim has been accepted or declined. But for some reason, we don’t seem to have that process occurring. (P2)

Participants found it useful when they were aware of what services or supports an individual had accessed previously, including before they entered the justice system. Participants felt that they would make an effort to re-engage with these services if they were aware of them.

…they’ve had previous, previous supports in the future from, you know, a Brain Injury Association, or a social worker or something like that, you know, that we can sort of re-tap into. (P5)

Participants also relied on communication from external agencies to support health and/or justice sector staff to take care of, or understand, a person’s health history.

But a lot of the time, they’ve already got social workers assigned to them that are working with them, so the social worker will most often just reach out to us and say, Hey, I’m working with such and such, I understand they’re being released to you. Or we find out through the people in our care, they’re getting medication, or their social worker’s, picking them up and bringing them into appointments or, you know, that sort of thing. So that’s sort of how we access it. (P5)

Theme 5. Need to upskill people across the justice sector

Participants noted that there was a need to be proactive in asking about possible injuries due to low awareness of brain injury in the population.

They don’t know what a head injury is. That’s why, [you need to ask] were you in a fight lately? Oh, did you get hit in the head? …you need to build a good rapport with them to be asking some of these questions. (P6)

However, in order to know how to ask about brain injury, there needed to be more workforce knowledge (for example, the prison health team, custodial and probation staff) around TBI. Participants wanted more information on key signs of an injury and the impact a history of TBI can have on current functioning and behaviour. Other suggested strategies to improve workforce knowledge around TBI, including training to identify a possible TBI, training to discern between TBI and other conditions (e.g. mental health), and training to support a person with TBI.

…now and then we have a psychologist will attend various sort of trainings on traumatic brain injury. People have done some study into the area and present the findings, but that’s just part of your profession as opposed to the actual job itself, and I think it needs to be sort of like formal, you know, formal, formal training, I think formal understandings, of systems and process to deal with that. (P4)

Some participants had taken the need to provide better TBI care into their own hands. One participant noted their team was currently in discussions about care pathways for individuals in their care who may have TBI.

…we’re currently discussing that, as a team, a pathway to, to support people, we suspect might have a brain injury. (P7)

However, one participant noted that implementing process change would be challenging due to clinical staff already operating at capacity and having to deal with other priorities such as their COVID-19 response. It was suggested that the appointment of an appropriate change champion or specialised staff would help facilitate process change.

If you can get a really good nurse to be the subject matter expert, to get those processes in place to make sure that there’s no gaps in the process. And that then they can let, not do everything, but make sure that everything gets done by their colleagues and support their colleagues as they’re learning the new process. (P1)

Overarching theme: the need for a national process

All participants acknowledged that there was a need to make improvements in how TBIs were identified and managed across the justice sector. Participants emphasised a need for national-level guidance to support the implementation of standardised practices across different areas of the justice system.

There’s a whole group of people at national office that you know, you know, if we, if we got the processes in place, so that the monitoring could be done. At national office, for example, you know, like, so they could run data to say, you know, how many people have got, you know, mild concussion or significant TBIs? And what have we put in place to help support them? (P1)

At the same time, participants also acknowledged that current TBI statistics were under-reported, which made it harder to advocate for change because there was no appropriate reference or baseline point. One participant noted that updating the current patient management system within a prison would require support from a national level due to the prohibitive cost of upgrading. Participants wanted better monitoring and surveillance using standardised outcome measures to monitor progress at an individual and service-level.

We get some good data out, you know, so we know we’re on the right track or whether do we need to tweak you know, the questions we’re asking or the processes we’re putting in place. (P1)

A common discussion point was that the processes for managing individuals with TBI in the justice sector could be improved by standardising and formalising the processes for all staff. Participants felt this could be achieved by the development and maintenance of a clear, national process for TBI care.

…there hasn’t been a focus on let’s look at brain, traumatic brain injuries. We’ve never had of, there’s no, specific focus in prison to look at that. And I do think that we, you know, we discussed it in our team, and we do think that there’s a lot of work in this space to be done to identify these things. (P7)

Strengths and limitations

A key strength of this study is the representation of professionals encompassing clinical and non-clinical roles. All study participants identified opportunities to strengthen how TBI is managed specifically in the New Zealand justice sector, including the need to understand individuals’ health histories, inclusive of their TBI history. Another strength of this study was the analytical approach we used to analyse the data, which initially involved the development of two independent frameworks that were later integrated, with arbitration, into a single composite framework. However, our study is not without limitations. Despite our recruitment efforts, we acknowledge that the convenience sampling approach used in this study may limit the diversity of perspectives gathered from the interviews. For example, we were unable to recruit the full spectrum of clinical (e.g. nurses, GPs) and non-clinical actors (e.g. police, justice, policymakers) and individuals engaged in the justice sector. We also have limited information about the justice sector’s workforce characteristics, which precludes our ability to judge the representativeness of our sample. Due to these limitations, we caution the transferability of our findings into settings where individuals’ right to accessing care and mechanisms for healthcare provision may differ.