Family experiences of the management of challenging behaviours after traumatic brain injury in the acute hospital setting

Abstract

Purpose

This study explored experiences of the management of challenging behaviours after traumatic brain injury (TBI) in the acute hospital setting from the perspectives of family members.

Materials and Methods

A qualitative, interpretive phenomenological approach was adopted involving semi-structured interviews with 10 family members. Interviews were transcribed and analysed using thematic analysis, with Ecological Systems Theory applied as a guiding framework to discuss findings and implications for practice.

Results

Four primary themes were identified: 1) The hospital environment; 2) Hospital staffing; 3) Identifying and preventing triggers, and 4) Family support and information.

Conclusions

This qualitative study highlights the need for further information, education, and support to families of patients with TBI in the acute setting. Further research investigating the implementation of best practice approaches for managing challenging behaviours practice in acute settings is needed to overcome the barriers of the hospital environment, inexperienced and inconsistent staffing, and difficulties identifying triggers within the acute hospital setting, experienced by families. Approaches for family involvement in behaviour management strategies, and facilitation of communication for people with TBI in the acute setting requires exploration.

IMPLICATIONS FOR REHABILITATION

• Families reported the hospital environment, inexperienced and inconsistent staffing, and difficulty identifying triggers were challenges in effectively managing challenging behaviours after traumatic brain injury (TBI) in the acute setting.

• Clinicians can support family involvement in preventative strategies with patients with TBI.

• Clinicians can enable quality of care by building rapport and providing compassionate care to patients with TBI.

• Families need more support and information during the acute stage of TBI in hospital settings.

Keywords:

• Traumatic brain injury
• behaviour
• challenging behaviour
• acute care
• hospitals
• family

Introduction

Managing behaviour changes following a traumatic brain injury (TBI) in the acute hospital setting can pose significant challenges. Challenging behaviour is a broad term encapsulating a range of behavioural changes, including agitation, verbal and physical aggression, irritability, disinhibition, perseveration, impulsivity, wandering and absconding, and emotional lability [1–4]. The term “challenging behaviours” encapsulates the broad range of behaviour changes after TBI. Recent studies have estimated 30-70% of patients with TBI exhibit challenging behaviours in the inpatient setting [3,5,6], with agitation prevalent in 44% of hospitalised patients with TBI in the early recovery phase [5]. Challenging behaviours after TBI are associated with risk of harm to the patient and staff, increased length of hospital stay, and poorer progress in rehabilitation and functional outcomes [1,4,6,7]. Challenging behaviours can also cause increased burden, emotional strain and distress, and lower quality of life and mood for family members of patients with TBI [8,9]. Challenging behaviours can persist beyond the early recovery and rehabilitative phases [10], impacting community integration and further family challenges in the community [11–14]. Consequently, families and caregivers of people with TBI are faced with a broad range of psychological, financial, familial and social difficulties [15–17].

Previous studies have explored family and caregivers’ perspectives of distress and challenges faced with survivors of TBI [12,16–21]. Findings have identified physical, cognitive and behavioural changes following TBI were associated with increased subjective burden and reduced quality of life in caregivers, with disruption of family functioning [9,13,17–19]. Families are impacted by the enduring and complex changes by TBI upon their relatives, which influences relationships and roles of family members [19,20]. The first-year post TBI, from acute to rehabilitation phases, are turbulent for families, with poor support exacerbating difficulties and isolation of family members [19,21].

Qualitative exploration of the experiences of challenging behaviours after TBI from families and people with TBI within the community setting has previously been conducted [14,22,23]. Previous findings have emphasised the need for increased support models, education and information to families [12–14,17,24]. There is a need to understand the impact of challenging behaviours from the perspectives of families to inform effective services, support and interventions to improve quality of life for people with TBI and their families [14,19,22,23,25].

Few studies have investigated the experiences of family members of patients of TBI in acute hospital settings. An integrative review exploring the experiences of nursing staff giving care, and patients and family members receiving care for people with TBI in hospital and rehabilitation settings highlighted the altered relationship dynamics within families, with recommendations for people with brain injury and their families to be formally included in care planning [24]. Furthermore, a previous review investigating the empowering support for families of brain injury patients in acute hospital care found families want involvement in comprehensive treatment planning; participation in their relative’s care; and competent interprofessional staff who support families and patients with trustful communication promoted the process of empowerment [26]. However, family member’s descriptions of their experiences of the management of challenging behaviours in the acute hospital setting have not been detailed. There is a need to further understand the experience of the management of challenging behaviours after TBI in acute hospital settings from the perspectives of families to inform improvements in services and care. Norup, Siert [9] found families of people with severe TBI in subacute rehabilitation settings experienced severely impaired quality of life and symptoms of anxiety and depression at the time of subacute admission. Abovementioned findings indicate a need for research to focus on developing and evaluating psychosocial interventions for families in the acute phase [9].

There is a dearth of literature investigating the experience of families relating to challenging behaviours after TBI in the acute hospital setting. The perspectives of family are pivotal to provide a greater understanding of recovery from an insider perspective, as they have knowledge of the preinjury person, and can assist services to better meet the needs of people with TBI [27], by providing effective support and interventions. Therefore, it is necessary to gain the family perspectives of current acute hospital practice of the management of challenging behaviours after TBI, to inform future opportunities for improvements in care to people with TBI within the acute setting.

Further research evidence is required for the efficacy of non-pharmacological and pharmacological strategies for managing challenging behaviours after acute TBI [28–31]. There are existing clinical practice guidelines for the management of challenging behaviours after TBI in inpatient settings [32]. A systematic review and quality appraisal of clinical practice guidelines for the management of challenging behaviour in inpatient settings found few guidelines were appraised as high-quality, with limited detail on how to implement recommendations into practice [32]. Gaining family insights, in addition to staff perspectives is critical to inform implementation strategies for future improvements to patients with challenging behaviours after TBI within the acute hospital context. Using a qualitative methodology, this study will address a gap in the literature and gain deep perspectives and insights from families of acute management of challenging behaviours after TBI. The aim of the current study is to examine the experiences of the management of challenging behaviours after TBI in the hospital setting from the perspectives of family members.

Materials and methods

Study design

This study used a qualitative interpretive phenomenological approach, allowing an in-depth understanding of the perspectives of family members of people with TBI of the management of challenging behaviours in the acute hospital setting [33]. Interpretive phenomenological approach (IPA) is a commonly used approach to explore perspectives and meaning from people’s lived experience [34–37], relevant to healthcare contexts [38–40]. An interpretive phenomenological approach is useful in examining contextual features of experience that might have direct relevance to healthcare practice [41]. Interpretive phenomenology findings can be linked to theoretical frameworks to explain concepts, ideas and beliefs. The Ecological Systems Theory (EST) [42] provided a guiding theoretical framework in this study, and was used to discuss the emerging themes. The Consolidated criteria for reporting qualitative research (COREQ) checklist [43] was used to ensure accurate completion and reporting of this study. Ethics approval was provided by the Southern Adelaide Clinical Human Research Ethics Committee (application no: 178.20), and informed consent was obtained from all participants.

Ecological systems theory

Bronfenbrenner’s Ecological Systems Theory [42] can be used to consider how the complex and dynamic factors of a person’s environment influences their experience [42]. The different levels of EST when considered in a hospital setting include the microsystem (interactions between the person/patient and other people in the acute ward including hospital staff, family members and other patients), the mesosystem (interactions between elements of the microsystem, for example interactions between different staff, between staff and family, and the dynamics of these interactions), the exosystem (the impact of formal structures and systems, for example ward layout, hospital procedures and ward routines), and the macrosystem (national health policies, legislation and cultural views).

The EST framework has been widely used in health and socio-ecological science to understand structural barriers relevant to complex interventions in healthcare [44–46]. Furthermore, EST has been used to identify ecological factors such as social and physical environments that influence systems, services and policies for recovery and participation after brain injury [47,48]. The EST was applied as a guiding framework in this research by considering how the ecological levels influence the management of challenging behaviours following TBI in an acute hospital setting. Themes presented in the results and consideration of the wider literature are examined within the discussion using EST.

Participants and setting

Inclusion criteria required that participants were over 18 years of age, able to communicate in English, and had an adult family member who exhibited challenging behaviours during their acute hospital admission following TBI during their early recovery phase (first 0-6 months). Challenging behaviour exhibited during the acute hospital admission included behaviour changes such as agitation, verbal and physical aggression, irritability, disinhibition, perseveration, impulsivity, wandering and absconding [2]. Patients with TBI had been admitted one of two major trauma hospitals in South Australia following the acute injury. Upon discharge from the acute hospital setting, patients with TBI were transferred to the state-wide specialised subacute brain injury rehabilitation unit.

Seven interviews were conducted with 10 participants whose family member experienced challenging behaviours following TBI in the acute hospital setting. Interpretive phenomenological approach (IPA) is typically an approach that uses small samples sizes of 5-10 participants as a depth of meaning from lived experience is gained, thus our sample size was consistent with other IPA studies [49].

Sampling and recruitment

Participants were recruited purposively from a South Australian subacute brain injury rehabilitation service. A clinician external to the research team identified potential participants who met the inclusion criteria. The clinician provided family members of current and recently discharged TBI patients an information pack including an information sheet and consent form, and invited them to participate in the study. Participants were approached following or during their relative’s subacute rehabilitation stage to allow time/consideration for emotional responses to the acute trauma and recovery in the acute hospital setting, and to allow retrospective perspectives rather than reflection on the current situation. The clinician then informed the researcher of family members who were interested in participating, who were then contacted by the researcher. All participants provided informed written consent to participate following their receipt of participant information about the study.

Data collection

Semi-structured interviews were conducted to gain rich descriptions, perspectives, and experiences of participants [50]. An interview guide was developed by the research team based on their content and method expertise and confirmed prior to data collection. The interview guide is available in Appendix file 1. During the interview, the study rationale was explained and demographic information collected. Interviews lasted on average 60 min. Most interviews were conducted face to face at a health service or home setting. The interview format allowed for each interview to unfold to capture participants’ experiences and reflections of their relative’s challenging behaviour in the hospital setting. The researcher conducting the interviews defined challenging behaviours to participants as a preamble to the interview. Participants were asked what strategies worked well, and what was difficult for managing challenging behaviours following TBI in the hospital setting. The interview questions were open-ended with specific prompts used as needed to elicit more detailed responses. The researcher made reflexive notes throughout the interviews. No participants withdrew after consenting to participate.

Interviews were conducted from December 2021 – April 2022. Interviews were conducted at a time convenient to the participants. Interviews were either one-to-one or two-to-one if more than one family member was present (see Table 1 for relationships of participants to people with TBI). Two interviews were conducted via online virtual meeting as these participants lived rurally or interstate All interviews were conducted by HB, a PhD student and occupational therapist with clinical experience working with patients with brain injuries in the acute setting, and who had received training in qualitative research methods. HB was not previously known to any of the participants.

Table 1. Relationship of participants with the person with TBI and the time since injury.

Participant number	Relationship to family member with TBI	Time since family member’s TBI
1	Sister	11 months
2 and 3	Mother and Aunt	10 months
4	Mother	16 months
5 and 6	Mother and Father	9 months
7	Sister	9 months
8 and 9	Mother and Sister	15 months
10	Father	17 months

Data analysis

All interviews were audio-recorded and transcribed by a professional transcription service. All transcripts were de-identified using participant IDs and uploaded to Nvivo (version 12) [51] for analysis. Participants did not verify transcripts, but were sent a summary of results. For familiarity with the data [52], transcripts were thoroughly read and re-read by two researchers separately (MB, HB). Both researchers then independently coded the data inductively then categorised the data according to key terms [52,53]. Coding analysis was conducted on a case-by-case basis with an iterative focus on descriptive content of participants’ reported experiences. Codes were then inductively collated to broader categories to highlight participants’ experiences relative to the research objective [53]. Categories captured participant’s reported experiences of challenges and strategies that worked well for managing challenging behaviours after TBI in the hospital setting. All members of the research team (HB, MB, SCH, SG) then used an inductive analytical and data-driven approach to generate, review and confirm the final themes, content, titles and quotes [53]. Themes were summarised and presented as results, using quotes as data extracts to explain the themes [53]. For example, the first round code of “agitation and aggression can be unpredictable” was categorised to “difficulties identifying triggers” and subsequently included in the theme of “identifying and preventing triggers”.

The research team involved in data analysis consisted of multi-disciplinary practitioners in occupational therapy (HB, SG), disability studies (MB), and psychology (SCH). Members of the research team have a broad range of knowledge and experience in clinical rehabilitation for TBI, and implementation science. All members of the research team have knowledge and experience in qualitative research methodology, undertaking a reflexive approach to openness and sensitivity to the topic to minimise personal opinions [54]. The clinical, content and methodological experience of our research team enabled identification of factors impacting on TBI behaviour management in hospital settings experienced from the perspectives of family members.

Results

Ten participants shared their perspectives about seven people with TBI regarding to the management of challenging behaviours after TBI in acute settings. Table 1 outlines the relationship of participants with the person with TBI and the time since the initial injury resulting in the acute admission. The median time the participants’ family members experienced TBI prior to interviews being conducted was 11 months (range 9 – 17 months).

Four themes were identified: 1) The hospital environment; 2) Hospital staffing; 3) Identifying and preventing triggers, and 4) Family support and information. Each theme is described below with exemplar quotes. Each participant (P) has been assigned a participant ID number. Where participants used their family members’ names in quotes, these have been de-identified with “[family member with TBI]”.

The hospital environment

The acute hospital setting was described by participants as a noisy environment, triggering challenging behaviours due to overstimulation and lack of sleep. Hospital environments were described by participants as loud, with constant noises, bright lights, and frequent interruptions for medical or nursing interventions throughout the day and night. Participants described how the noise, overstimulation and interrupted sleep contributed to their family member’s agitation, frustration and aggression.

The only thing that got him frustrated and agitated sometimes, was the noise levels… he’d be like they’re out there in the hall talking and don’t they know we’re trying to sleep. And then sometimes it was other patients that might disturb him…He just wanted it quiet and…like there’s machines going out there and people walking up and down the corridors. (P4)

One participant described how their family member with TBI could move freely throughout the unsecured hospital ward and abscond via the stairwell: “he could freely run and he knew where the stairs were. I guess like he would run down four flights of stairs with ease to try and escape” (P1).

Environmental strategies described by participants included turning lights off, closing blinds or curtains, moving rooms away from noise, bringing in familiar items and photos, visitor restrictions, and limiting time for conversations to allow for rest. Despite implementing environmental strategies to reduce triggers for challenging behaviours, participants reflected on how the hospital was a noisy place and limiting the noise was difficult. As described by P10 “I did see that they had the blinds closed to keep the room dark. But the hospital’s a noisy place”.

Hospital staffing

Family members described the negative impact of hospital staff who lacked experience, confidence, and skills in understanding, anticipating and responding to challenging behaviours following TBI. However, participants deeply valued hospital staff who understood TBI, could build rapport and adopt a compassionate approach to supporting their family member. These are explored in the following sub-themes: 1) The impact of inexperience, and 2) Understanding, compassion and rapport.

The impact of inexperience

Participants described they could sense when staff were not confident or skilled in de-escalating or managing TBI challenging behaviours.

Some of the staff are really lovely and can manage and some aren’t so good and [family member with TBI] can sense that… I could see that where he was comfortable and he was more passive and then some would really upset him and then he’d get really angry and call them [profanity] this and that. (P2)

Families discussed times when they noticed hospital staff felt threatened, scared and lacked confidence when confronted with challenging behaviours (particularly aggression) from the person with TBI. At these times, participants described ‘avoidance of care’ where their family members received reduced quality of care, and were left medicated rather than finding someone the person with TBI could engage positively with

I think the hitting out and the agitation and that, they’re a bit scared and they tend to leave them more than try and actually get them to do stuff through the daytime I guess. They’re happy to leave them in bed because that’s easier…They get put in the too hard basket. (P7)

Some families noticed inexperienced hospital staff often reverted to reactive approaches, and immediately called for security guards for assistance. Families felt further effort could have been made to de-escalate, distract, and connect with the person with TBI.

The treatment from staff that knew versus treatment from staff that didn’t know were very, very different…The ones that knew, knew how to calm the situation, knew what was happening, so they wouldn’t add to the aggression or the frustration. Whereas the other ones were sort of like ready to code [call for security assistance] rather than try and work out what was happening. (P9)

One father described his concern in leaving his son in hospital when he did not feel confident with the nurse’s approach to his challenging behaviours.

I thought, if this nurse ain’t going to do anything while I’m here, what is she going to do if I’m not here? And how – my kid’s got a brain injury, and his leg’s bunged up. And he’s trying to get out of bed, and all she can do is push a button. I thought that’s not right. And I felt like I shouldn’t leave, because at least I was there to help if he tried to – if he got angry again (P10).

The need for further staff training and skill development was identified by some families “The hospital just didn’t have brain injury information - there’s just, the lack of skill, I think added so much to his agitation and his reactions” (P8). A need for staff with interests in TBI or a specialised practice of nursing for TBI behaviour management, was described by P2: “They need nurses who are interested in brain damage because it is quite unique… it needs to be specialised type nursing.”

Regular staffing shortages were identified as a significant concern. These resulted in casual staff, or staff from other wards and specialities called in to service the ward, or an absence of required staff for patients with TBI “At that time it was literally staff shortage. They did not have the staff to have one on one, there were days where they didn’t have the security rock up on time.” (P9).

P4 described the lack of rapport from inconsistent staffing frustrated and agitated their family member with TBI.

That was another thing that was very vital, was the inconsistency at times on the ward, of staff. You had your regular staff, but then you’d get a lot of temps that would come in to fill those shifts that people couldn’t make. He struggled mostly with them…because they didn’t know him. (P4)

Security guards were at times required to be involved in both supporting staff working with patients and supervising patients with challenging behaviours. Many participants described how security guards involved with people with TBI in the hospital setting needed more training and knowledge of TBI, challenging behaviours, triggers and de-escalation strategies, as described by P3 “They’re there for security, yes. But probably in this environment they need pre-training to better manage and understand patients [with brain injury].” (P3)

Hospital staff lacking the adequate skills and experience to effectively manage challenging behaviour was not the unanimous experience for all participants, or reflections of every hospital staff member by participants. Many participants also described the respect and compassion of hospital staff toward their family member with TBI.

Understanding, compassion and rapport

Participants felt staff who took a caring and compassionate approach were very important for their family member with TBI. When families reflected on those staff who did take a compassionate, calm approach to build rapport with the person with TBI, they expressed gratitude for their dedicated care.

There’s one guy he should be paid twice as much as anybody else, because no matter whether he was about to go on a break, or whether he was about to end his shift, or whatever, if [family member with TBI] needed something – a bit of attention to calm him down or whatever, he’d spend the time. (P10)

Staff who were able to communicate effectively, build rapport, and recognise emotions with the person with TBI, made them feel comfortable in receiving care and reduced challenging behaviours.

There was one male nurse there that was a younger guy and he got along brilliantly with [family member with TBI] as well because they would just chat. They would just banter about stuff and he was quite candid and open it was really good. [Family member with TBI] felt comfortable with him. (P1)

Some participants highlighted the importance of tailoring the staffing mix to suit relatable personalities between staff and patients, and avoid personality “clashes”. As described by P5 “the nurse, it’s more like a personality thing, so he doesn’t like him.”

Staff were highly regarded by participants when compassionately helping family members with TBI in a caring manner, whilst staying calm during stressful situations. Staff who understand challenging behaviours after acute TBI, who can build rapport and use compassion are critical.

Identifying and preventing triggers

Some participants acknowledged identifying their family member’s triggers to challenging behaviours could be difficult due to the unpredictable changes and escalation. When families or staff were unable to identify emotional and communication factors, this would escalate challenging behaviours. Opportunities for family involvement in behaviour management and to support communication were described by participants as effective strategies to identify and prevent triggers.

Difficulties identifying triggers

Participants described their family member with TBI would have fluctuating behaviour whereby their challenging behaviour would escalate in an unpredictable manner on a day-to-day basis; for example “it happens very quickly, he can be like really settled, he can be really good and then it’s like smack, he snaps” (P2). Unpredictable fluctuations of challenging behaviours were difficult when triggers were not identified by hospital staff. Participants described the lack of recognition of emotional factors associated with early TBI recovery contributed to escalating challenging behaviours in the hospital setting. As described by P2 “he’s still got those feelings and understandings and perhaps it’s not being recognised like that.” Many participants described that their family member with TBI would experience frustration, loneliness, anger and grief during their early recovery in the hospital setting. When hospital staff were not able to recognise these emotions, participants felt these emotional factors contributed to frustration and anger, and thereby triggered challenging behaviours.

A bit of anger at times which mostly I think comes from frustration in his particular case, he remembers so much of his life prior to the accident and the injury. And some frustrations of that he can’t do the same things. (P4)

Some participants described times when their family member with TBI was unable to communicate, or was overwhelmed with multiple questions, this would trigger challenging behaviours as a result of frustration.

Yeah, and not throwing two or three questions at him at once, which I found some staff would come in and they would be, like, ‘Do you want me to do this or this and that?’ You’d see him, like, that overwhelmed. (P4)

Participants described hospital staff’s difficulty in recognising triggers to challenging behaviours by not recognising emotional factors, frustration due to difficulty communicating, and the unpredictable nature of behaviour change after TBI.

Families involved in preventative strategies

Participants described how they would try strategies to reduce triggers to challenging behaviour for their family member while in hospital. These strategies included avoiding both particular conversations and arguments.

When I visited him as I said earlier it was a lot of, you just have to walk on eggshells so there were topics that triggered him. Like, you had to be very careful with what you said to him, and if you disagreed with him that would trigger him. So, you just had to just try and talk to him about generic stuff. (P1)

Some participants brought in activities to reduce boredom for their family member with TBI. These included puzzles, games, craft, watching favourite movies and listening to music. Participants felt it was helpful for staff to know the family member’s preferences for hobbies and leisure activities for diversion when challenging behaviours could escalate.

Staff, I think just them getting to know us, talking with us and listening to what we had to say that might help soothe [family member with TBI] or little strategies. Like sometimes when he’d get agitated – I’d be like look, just close your eyes and put on some music and just – and he’d be, like, ‘As long as it’s Eminem, it’s okay.’ (P4)

Participants also described sharing photos and familiar items with their family member with TBI. Although aware of avoiding overstimulation, some participants used photos to reminisce and generate conversations for diversion.

And his walls were decorated in – just one wall, because we wanted not a busy, busy room. So, he had these walls here that he looked at when he was in his bed, empty. But if he felt like looking at something. (P9)

Some participants felt when strategies to support communication were provided, this reduced aggressive outbursts of frustration from their family member with TBI. One participant brought in picture cards to enable her family member with TBI to communicate, which subsequently hospital staff started using as a communication strategy.

…the flash cards and I would show him those. And then they’re like [hospital staff], ‘oh, we’ll get some of those made up for his room’, and then they had it up on the wall, and so then they started saying, ‘[family member with TBI], are you thirsty, are you hungry?’ (P9)

Behaviours could change and escalate quickly, with staff and families having difficulty predicting triggers. Families felt it was helpful to be involved in preventative strategies, and to support the person with TBI to communicate in order to alleviate potential triggers.

Family support and information

Many participants described the extensive impact TBI has had on the wider family network. Participants reflected on how the TBI happened to one family member, but impacted on all family members including parents, siblings and children of the person with TBI.

It’s been hard. The accident happened to him but it also happened to us but in a different – we didn’t end up with the injuries. But it’s really hard, as a mum, to watch your son be like that and feel so helpless. (P4)

Many participants described there was little or no support for families in the acute setting after a relative had a TBI. Although some participants did state they received support from social work services at one acute hospital and psychology services at inpatient rehabilitation services, many participants suggested more support is needed for families in the early stage after TBI.

It took about eight months for them to even offer us any counselling because it’s caused a lot of issues. My mum is now on anti-depressants; my sister is depressed…It took a long time for them to get any support. That’s been hard and I think that was probably something that was overlooked… there is a huge hole for support for families and loved ones going through that, and I know there is only so many resources that can be put into some of this stuff, but like I think that’s really something that is completely overlooked is for families and loved ones. (P1)

Most participants also described a gap in information and education provided to family members about TBI and behaviour change in the acute stage in hospital settings with “no handouts or anything like that” (P7). Some participants relied on their own online web searching to gain information about TBI and behaviour change as described by P2: “I personally have done googling, but I haven’t had any information sheet”. One participant found she was “inundated and overloaded with information” (P4). The information was provided in pamphlets, verbal updates and emails, “but sometimes it would just like whoa, no, information overload” (P4).

Overall, participants described the need for more family support in the early stage of TBI recovery in the hospital setting. Additionally, participants felt there was a need for more tailored information about TBI in the acute setting, with the importance of consideration as to how the information was delivered to avoid overwhelming the family members.

Discussion

This qualitative study has enabled us to gain insight in the experience of the management of challenging behaviours after TBI in the hospital setting from the perspectives of family members. Four themes were identified: 1) The hospital environment; 2) Hospital staffing; 3) Identifying and preventing triggers, and 4) Family support and information.

Family members shared similar perspectives on the challenges of effective TBI behaviour management, including overstimulation and unsecured hospital environments; inexperienced staff; inconsistent and temporary or casual staffing; difficulty identifying triggers due to unpredictability and lack of identification of emotional and communicative needs by patients. Family members shared their perspective of the challenges of care delivered by inexperienced staff; inconsistent, temporary or casual staffing within the acute hospital setting. This finding reflects commonalities with previous studies exploring acute staff’s perspectives of effective management of challenging behaviours after TBI and caring for patients with TBI [55–57]. Lack of knowledge, training, limited staffing and resources have been found to be barriers for nurses caring for patients with TBI [24,56–58]. Provision of staff training and skill development, provision of information and resources, with ongoing supervision and support to staff are strategies that may improve staff’s agency in effectively managing challenging behaviours [20,24,55,58].

Family members felt challenging behaviours after TBI can contribute to distress to family members and family relationships. This finding reflects outcomes of previous studies that have explored the emotional distress, reduced quality of life of family members and the impact on psychosocial and family functioning as a result of a family member with TBI [9,14–17,19–21,25]. Family members expressed there is a lack of support and information for family members of people experiencing challenging behaviours after TBI, with more support to families in the acute phase of TBI recovery needed. The lack of support and information correlates with previous findings based in subacute and community settings [11,13,14,16,20]. This study supports the findings of others for further research to support families and caregivers of people with TBI [14,17,19,22,23,25]. Furthermore, there is an urgent need for to develop and provide support and information relating to TBI and challenging behaviours to families during the acute admission after TBI. Tailored adaptation of information and support is required as patients with TBI transition from acute care to subacute rehabilitation and community integration, to minimise distress to families throughout the continuum of care [59].

Family members described strategies that worked well in the hospital setting to minimise triggers and effectively manage challenging behaviours, including familiar items and low stimulation environments; staff who provide compassionate and respectful caring approaches; family involvement in preventative strategies, and providing opportunities for communication for the patient with TBI [26]. To our knowledge, there is a lack of qualitative studies whereby family members have highlighted the difficulties of the hospital environment, management of behaviour triggers with family involvement in TBI behaviour management in the acute setting. However, these findings do support clinical practice guideline recommendations outlining the importance of modifying the environment, balancing stimulation levels, promoting a safe environment, identifying and addressing triggers, and promoting family involvement in care to patients with challenging behaviours in the acute phase of TBI [60–62]. There is a need for individualised, iterative and ongoing identification of external stimuli, antecedents and triggers to challenging behaviours, with appropriate and individualised management approaches from multi-disciplinary teams [63]. Opportunities to support improvements in TBI behaviour management in the acute setting should include family involvement, skilled staff, positive staffing considerations and strategies for communication for people with TBI.

Factors influencing behaviour management following TBI in the acute hospital setting: applying an Ecological Systems Theory lens

Findings of this study can be considered against the levels of systems within the EST proposed by Bronfenbrenner [42]. In applying the EST to our results, multi-system factors can be identified which influence behaviour management following TBI in the acute hospital setting.

Influences at the microsystem level involve the quality of interactions between the person with TBI, their immediate family and hospital staff within the acute hospital ward. Staff and families directly involved in strategies to identify triggers, engaging directly with the person with TBI in preventative strategies and interactions to promote communication appear at the microsystem level. In our data, the microsystem may be closely associated with the challenges of hospital staff’s inexperience, lack of skills in understanding TBI and managing challenging behaviours, which participants described negatively impacted the family member with TBIs challenging behaviours. Also within the microsystem level, were the interactions participants and their family members had with hospital staff who provided compassionate, care and built rapport with their family member with TBI. Engaging with the patient with TBI in a compassionate manner to understand them as a person, is a critical factor to understanding their behaviour changes and effective management of challenging behaviours.

The mesosystem is closely associated with interactions between elements of the microsystem. From our data, the mesosystem relates to the dynamics of interactions between the person with TBI, their families, and the wider networks of hospital staff within the hospital environment. Within an acute hospital setting, the mesosystem influences can include the dynamics of interactions between families and hospital staff to support the person with TBI with challenging behaviours. Based on our data, mesosystem interactions are influenced by family involvement in strategies to identify emotional and communication factors, triggers and preventative strategies of escalating challenging behaviours. Hospital staff collaboratively engaging with families can be helpful to identify and trial personalised preventative strategies to support the person with TBI.

Exosystem influences are the structures within a healthcare organisation, for example hospital environments, procedures and routines. The overstimulation within the acute hospital environment; limited staffing resources, and hospital funding for staffing availability are challenges within the exosystem that influence the management of challenging behaviours following TBI in the acute hospital setting. The lack of support and information provided to families during the acute stage of TBI relate to exosystem routines and procedures within the acute hospital setting. Adapting procedures for staff to consistently provide support and information to families during the acute stage of TBI is needed.

Societal, cultural, and political factors can influence at the macrosystem level. Although findings from this study are not broadly attributed to the macrosystem, the healthcare policies, standards, clinical practice guidelines and funding for future research can be applied for future improvements to managing challenging behaviours after TBI in acute settings. Furthermore, hospital funding to support staffing and resources for effective, best-practice behaviour management following TBI would be an influential macrosystem factor for future improvements to care to patients with acute TBI. Future research is required addressing the contextual barriers relating to the multiple ecological factors within the acute hospital setting. To overcome these multifaceted ecological barriers, research incorporating implementation frameworks with tailored implementation strategies are required for successful and sustained improvements in this area of practice [64,65]. Based on the findings of this study, the approaches to improve the management of challenging behaviours after TBI in acute settings, need to incorporate strategies that address the hospital environments (mesosystem); improving staffing knowledge and skills (microsystem); consistent staffing workforce (exosystem); and providing support and information to families (exosystem) are factors that need to improve over time.

Strengths and limitations

This study utilised a robust qualitative methodology, providing a novel perspective from families about care received in the acute setting after a family member has experience challenging behaviours after TBI. Families found it helpful to be involved in care to their relative with TBI in the acute setting. Families want to be involved in the complex care of managing challenging behaviours within acute settings. With inconsistent and varying staff rostered to patients in acute care, family involvement can support consistent and person-centred strategies provided to patients throughout their admission. This study highlights the importance of family involvement in person-centred TBI acute care to identify preventative strategies for challenging behaviours.

Some limitations should also be addressed. This study was conducted during COVID-19 pandemic whereby the impact of reduced workforce and hospital demand could have influenced participant’s perspective on the challenges in the delivery of care during their family members admission with TBI. Interviews were completed with 10 participants in one state in Australia, limiting the generalisability of the results.

Conclusion

This qualitative study summarises the experience of the management of challenging behaviours after TBI in the acute hospital setting from the perspectives of family members. Findings highlighted the challenges of care including the hospital environment, inexperienced and inconsistent staffing, and difficulty identifying and managing triggers. Strategies that enabled quality of care, as described by families, were modifying the stimulation of the hospital environment, compassionate and caring staff who built rapport with patients, opportunities for communication and family involvement in patient care. Families described a lack of information and support in the acute phase of TBI in the hospital setting. There is a need for further research in clinical practice to evaluate tailored information to families during the acute recovery phase of TBI within hospital settings. Future research is warranted, to evaluate the translation of evidence into practice to address the ecological system challenges of the hospital environment, inexperienced and inconsistent staffing, the difficulties identifying and managing triggers, and the lack of information and support to families. Care to patients with TBI in the acute setting should promote family involvement, and strategies for communication for people with TBI.

Acknowledgements

The authors wish to acknowledge Dr Simon Mills who assisted in participant recruitment for this study. We sincerely thank the families who participated in the interviews for this study. This study was supported by grant funding received from the Lifetime Support Authority of South Australia (R21011).

Disclosure statement

The authors report there are no competing interests to declare.

Data availability

The data that support the findings of this study are available from the corresponding author, [HB], upon reasonable request.

Additional information

Funding

Lifetime Support Authority of South Australia (R21011)

Appendix File 1

1. Tell me a bit about your family member’s experience in hospital with challenging behaviours in the early stage of recovery from TBI

2. How was you family member’s challenging behaviour managed?

3. What worked well for managing challenging behaviours within the hospital setting?

4. How did the ward environment influence effective management of challenging behaviours?

5. What seemed to trigger challenging behaviours? How were triggers identified?

6. In your experience what could have worked better in managing challenging behaviours in the acute hospital setting for your family member after their TBI?

7. Did you receive any information or education about challenging behaviours or behaviour management after TBI in the acute hospital setting?

8. Do you have any additional thoughts you would like to share?