Improving services for patients with disorders of consciousness post acquired brain injury: evaluation of family and staff education packages in a neurosciences unit
Erin Kelly
A B * , Maeve O’Neill C , Emma Finch A B D E and Anna O’Gorman F
A
B
C
D
E
F
Abstract
International guidelines recommend a specialised, multidisciplinary approach to optimise outcomes post disorders of consciousness (DoC), with family education the cornerstone of management. Despite this, multidisciplinary staff report reduced confidence and skill in the management of patients with DoC, and education provision to families is inconsistent. This study aimed to evaluate the effectiveness of DoC education packages in enhancing self-perceived knowledge, confidence and skill of staff and families surrounding acute DoC management.
Standardised education packages were developed and delivered to: (1) neurosciences staff, and (2) families of patients with DoC. Pre and post education surveys were used to measure family and staff self-perceived knowledge, confidence and skill in management of patients with DoC. Non-parametric statistics were utilised to analyse the quantitative data, whereas thematic analysis was used to analyse open-ended responses.
Twenty-six family members and 86 health professionals were recruited. There was a statistically significant improvement across all areas of self-perceived knowledge, confidence and skill post introduction of the education packages (all P < 0.05), with the packages perceived as beneficial. Thematic analysis identified six themes and 12 subthemes.
DoC family and staff education packages can enhance family and staff self-perceived knowledge, confidence, and skill surrounding management of patients with DoC.
Keywords: acute, assessment and management, confidence, disorders of consciousness, family education, intervention, knowledge, sensory stimulation, staff and family, staff education.
Introduction
The burden of acute severe acquired brain injury (ABI) is well recognised within recent literature, not only for its impact on patients and families, but also for the subsequent impact on the healthcare system and society (Fitzgerald et al. 2020). According to the Australian Institute of Health & Welfare, head injuries, including traumatic brain injuries, resulted in 406,000 emergency department presentations, 142,000 hospitalisations and 2400 deaths in Australia in 2020–2021 (Australian Institute of Health and Welfare 2023). Due to advances in medical interventions and life sustaining therapies, many patients, who would have previously had an increased mortality rate, are surviving post severe ABI (Golding et al. 2025). Consequently, there has been a proportionate rise in the number of patients presenting with a disorder of consciousness (DoC; Graham et al. 2015; Giacino et al. 2018, 2020). DoC is an umbrella term for a spectrum of neurological disorders occurring post severe ABI, consisting of coma, unresponsive wakefulness state (UWS), otherwise known as vegetative state (VS), and minimally conscious state (MCS). DoC are characterised by impairments in wakefulness (otherwise known as arousal, affecting sleep/wake cycle) and awareness (degree of interaction with surroundings, such as ability to recognise environment and communicate), and are caused by trauma, vascular event, hypoxia, inflammation or infection, or other neurological disorders. A prolonged disorder of consciousness (PDOC) is classified as when a patient continues to demonstrate absent or reduced awareness for 28 days or longer since the onset of ABI (Royal College of Physicians 2020). Patients presenting in an UWS have no awareness of themselves or their environment, but display a sleep–wake cycle and reflexive behaviours, such as spontaneous eye opening, teeth grinding, and non-purposeful crying and laughing (Laureys et al. 2010; Graham et al. 2015). Patients in a MCS demonstrate significantly altered consciousness with inconsistent, but clearly discernible evidence of awareness of themselves or their environment, with reproducible non-reflexive behaviours observed (Giacino et al. 2018; Royal College of Physicians 2020).
Patients diagnosed with a DoC are typically hospitalised for extended periods due to the severity of their brain injury. This imposes a significant cost to the healthcare system. Each traumatic brain injury in Australia is estimated to have a lifetime cost of $2.5 million for moderate brain injuries and $4.8 million for severe brain injuries (Department of Health and Aged Care 2019). Giacino et al. (2012) highlight the significant financial, emotional and ethical strains the severe functional disability associated with PDOC places on caregivers and society. From both an economic and patient perspective, it is therefore crucial that the appropriate treatment and specialised rehabilitation of this population is delivered to promote meaningful recovery (Oberholzer and Müri 2019; Turner-Stokes et al. 2023). This further supports the need for early, best practice DoC assessment and management within the acute setting. Additionally, to guide prognostication and appropriate transfer of patients presenting with PDOC, prevention and treatment of typical associated complications, such as hypertonia and paroxysmal sympathetic hyperactivity, is crucial (Whyte et al. 2013).
Management of patients with DoC is specialised and challenging work that requires a cohesive, skilled multidisciplinary team (MDT) approach for best patient outcomes (Giacino et al. 2018). Over the past decade, there has been substantial growth in the field of research addressing DoC diagnosis, prognostication and recommendations for best practice management, including recent international practice guidelines from the UK, US and Europe (Giacino et al. 2020; Kondziella et al. 2020; Royal College of Physicians 2020). Despite improvements in DoC management internationally, Australian clinical guidelines remain outdated and uptake of best practice within Australian healthcare settings has lagged, with subsequent gaps in service delivery to patients presenting with DoC (National Health and Medical Research Council (Australia) 2008). Within acute hospital settings, which provide short-term treatment for urgent or severe medical conditions, this has anecdotally been attributed to the complex sequalae of DoC presentation post severe ABI, the rotational nature of allied health, nursing and medical staff working with this cohort and their families, as well as health professionals’ poor understanding of DoC and subsequent reduced confidence and skill regarding best practice assessment and management.
The previously mentioned gaps in service delivery and reduced understanding of DoC within Australian healthcare settings are problematic given international practice guidelines recommend timely assessment and accurate diagnosis as crucial for educating families regarding patients’ level of consciousness, informing prognostic counselling and guiding treatment decisions (Giacino et al. 2020; Kondziella et al. 2020; Royal College of Physicians 2020). Giacino et al. (2018) suggest that patients presenting with a DoC are likely to have a better chance of recovery if care is delivered in a specialised setting by knowledgeable and skilled clinicians who are aware of the risks associated with DoC and can initiate timely treatment. Several studies have found that early, routine neurobehavioural assessment performed by allied health staff utilising valid and reliable assessment tools is essential to assist diagnosis and prevent misdiagnosis (Eapen et al. 2017; Wannez et al. 2017; Giacino et al. 2020). Multiple studies have reported the importance of early distinction between UWS and MCS as a key predictive factor of recovery of consciousness and long-term prognosis (Schnakers et al. 2009; Lucca et al. 2019; Murtaugh and Shapiro Rosenbaum 2023). Staff knowledge gaps may lead to an underestimation or overestimation of prognosis due to lack of specialised knowledge and skill in DoC (Giacino et al. 2018). The rate of misdiagnosis of DoC is alarmingly high, with diagnostic error quoted across several studies as >40% (Schnakers et al. 2009; Giacino et al. 2020). This has been attributed to factors including the complex, multifactorial presentation of DoC patients, reduced clinician skill and experience in distinguishing behaviours indicative of awareness from reflexive, non-purposeful behaviours, and the lack of serial, standardised neurobehavioural assessments utilised by clinicians to clearly define and accurately diagnose DoC (Giacino et al. 2018; Royal College of Physicians 2020).
In terms of the families’ experience, the Royal College of Physicians (RCP) Guidelines (2020) highlight that families of these patients often experience severe distress requiring active and collaborative support from the MDT. Various studies highlight the extreme levels of psychological distress and emotional burden that caregivers of patients with PDOC experience due to the significant injury sustained by their loved one and uncertainty regarding recovery (Giovannetti et al. 2013; Chinner et al. 2022). Early education and family counselling from health professionals can assist families’ knowledge of their family member’s brain injury, reduce carer distress, increase understanding regarding resources available and typical care pathway for this population, as well as provide key therapy targets that families can participate in delivering (Gan et al. 2010; Giovannetti et al. 2013).
There is increasing literature supporting the early implementation of sensory stimulation, including auditory, visual, tactile, olfactory and gustatory stimulation, with patients with DoC as part of neurorehabilitation. Recent studies suggest that delivery of structured, multimodal, emotionally meaningful stimuli has the potential to promote neural plasticity, and increase arousal and awareness in patients with DoC (Abbate et al. 2014; Pape et al. 2015; Padilla and Domina 2016; Lijuan et al. 2018; Li et al. 2020; Moretta et al. 2024). Studies also suggest that patients presenting in a MCS demonstrate increased awareness in response to sensory stimulation (Lijuan et al. 2018), and that multi-sensory stimulation and neurobehavioural assessment delivered by or in combination with family members has an increased likelihood of increasing awareness for patients presenting with DoC (Abbasi et al. 2009; Adineh et al. 2022; Moretta et al. 2024).
The minimum competency recommendations for programs providing services for persons with DoC by Giacino et al. (2020) recommend clearly defined plans for staff education and training to ensure DoC assessment and management is provided in line with evidence-based practice. Facilitation of staff education and training requires close consideration of evidence-based adult learning theories and andragogy models, such as the ‘Adult Learning Model’ by Taylor and Hamdy (2013), to understand the ways in which adults learn and encourage effective uptake of clinical knowledge and practice. Opportunities for transformative and experiential learning, such as utilisation of education packages that require observational and reflective practice, are suggested as effective learning strategies for clinical learning (Taylor and Hamdy 2013).
Finally, recent literature supports the need for routine assessment and monitoring by healthcare professionals to assess the progress of patients with DoC and address their needs for rehabilitation (Pignat et al. 2016; Faugeras et al. 2018; Yelden et al. 2018; Giacino et al. 2020), further highlighting the need for staff education and training in best practice DoC assessment and management. However, current research does not measure the effects of timely education regarding DoC and sensory stimulation on family members’ knowledge and satisfaction, nor does it measure the impacts of a standardised staff education package, including a MDT management plan, on staff self-perceived knowledge, confidence and skill when working with this population within the acute setting.
Methods
Study design
A prospective, mixed methods, pre-post intervention study design was used, measuring family and staff perceptions of novel family and staff education packages addressing DoC assessment and management, with numerical and free-text responses collected from pre and post surveys.
Study setting
This pilot study was conducted in a 36-bed acute neurosciences unit at a tertiary, metropolitan public health hospital in Australia between July 2018 and August 2020. The neurosciences unit encompasses both neurosurgical and neurology patients, with varying degrees of ABI severity. Ethical approval was granted by the Metro South Human Research Ethics Committee (HREC/18/QPAH/184). Written informed consent was obtained from each participant in compliance with research ethics procedures.
Participants
Family member participants of patients with DoC were identified by the neurosciences MDT. As within the RCP guidelines (2020), the term ‘family’ for this study referred to those people who had a sufficiently close relationship to the patient to be actively involved in their recovery. The inclusion criteria for family member participants included having a loved one who was an acute inpatient in the neurosciences unit who had been identified by the MDT as presenting with a DoC or PDOC post severe ABI. There were no specific exclusion criteria, as surveys and education resources were able to be delivered to participants with English as a second language or non-English speaking background by an interpreter.
Staff member participants were recruited by the researchers through a convenience sample, dependent on allied health and nursing staff rotations in the neurosciences unit during the recruitment period. The inclusion criteria for staff participants were that they were from allied health and nursing staff professions working on the neurosciences unit at the recruiting hospital. Staff exclusion criteria included working outside of the neurosciences unit and in disciplines other than allied health or nursing.
Intervention
An education package model, combining both theoretical and practical learning opportunities, such as encouraging staff and family members to develop and deliver sensory stimulation plans and conduct neurobehavioural assessment, was chosen to draw on adult educational principles and instrumental learning theories, such as observational and experiential learning (Taylor and Hamdy 2013). Learning packages that encourage experiential and interactive learning have been found to be successful in embedding programs into everyday clinical care (Makhosazana Lungile et al. 2018). To develop the new intervention, which included the education packages and sensory stimulation resources, the researchers developed the resources based on international, evidence-based literature and guidelines, including the Royal College of Physicians guidelines (2020). Additionally, the researchers engaged in national benchmarking regarding best practice DoC assessment and management. The research team were granted permission by the director of a subacute brain injury unit in Victoria, which provides sensory stimulation and MDT management plans for patients with PDOC in the rehabilitation setting, to adapt certain resources for the acute hospital setting. PDOC resources, which were acquired through benchmarking and site visits to a specialist subacute brain injury unit, were referenced appropriately and adapted for the acute hospital setting. All additional resources were specifically developed for this research study independently by the researchers.
The family education package adapted and expanded for the acute setting included: (1) a sensory preference questionnaire, (2) a sensory stimulation plan and (3) a DoC management plan. The researchers also developed (4) a DoC family education handout, outlining DoC, MDT roles, and links to useful resources and websites.
The staff education package included: (1) attendance at a staff education in-service, where staff were trained about DoC, including differential diagnosis, best practice assessment and management for the acute setting (including administration of the Coma Recovery Scale-Revised and delivery of sensory stimulation), environmental considerations to reduce overstimulation, as well as the details of the MDT assessment and management guidelines, and the family education package using a standardised PowerPoint presentation, which was developed independently by the researchers, (2) staff education resources to assist assessment and management, such as a Coma Recovery Scale-Revised Quick Reference Guide, links to Coma Recovery Scale-Revised training and resources online, documentation autotext templates for the electronic medical record and key MDT phrases for family education, as well as (3) MDT assessment and management guidelines, which were adapted for the acute setting, and outlined best practice DoC assessment and management tasks, such as neurobehavioural assessment, sensory stimulation and family meetings. These MDT guidelines also provided recommendations for suggested timeframes for completion of these tasks within the acute neurosciences unit. These MDT guidelines provided recommendations, such as suggested timing to commence neurobehavioural assessment; patient considerations prior to commencing neurobehavioural assessment, such as medical stability and medication regimes; and suggested timing to conduct family meetings, commence sensory stimulation and MDT discharge planning discussions.
Fig. 1 provides a summary of the resources found in the staff and family education packages.
Procedure
The study involved evaluation of family members’ and staff’s self-perceived knowledge, confidence, and skill on DoC assessment and management at baseline, prior to the introduction of the new intervention (including the education packages and sensory stimulation resources), and re-evaluation of participants’ self-perceived knowledge, confidence and skill post introduction of the new intervention (see Table 1). The development and compilation of resources was completed by researchers E.K. and M.O., who at the time of the study, had >7 years of experience in managing patients presenting with DoC across the continuum within the intensive care, acute neurosciences and subacute brain injury rehabilitation units. Consumer feedback was sought from two family members of DoC patients pre intervention, and resources were piloted with family members and staff prior to the study and recruitment formally commencing. As outlined in Table 1, the researchers led the introduction of the staff education package on the ward, including delivery of regular DoC in-services to allied health and nursing staff. The staff in-service included details of the change in practice to be implemented, including the new family education package and MDT assessment and management guidelines. Allied health DoC change champions from speech pathology, occupational therapy and physiotherapy were identified as those with an interest in leading this change in practice for DoC patients and their families. Nursing DoC change champions were also identified to promote integration of sensory stimulation and DoC management plans into standard care. Subsequently, the family education package was implemented by staff on the ward and led by change champions from various allied health disciplines. The family members of patients with DoC were guided by the treating allied health professionals on how to deliver sensory stimulation personalised to their loved one. Table 1 provides an overview of the study procedure. The staff and family education packages (including the MDT management guidelines and sensory stimulation resources) clearly outline suggested timeframes for the intervention tasks, including staff commencing assessment, delivering family education and introducing sensory stimulation to families. These education packages and resources have been packaged for sharing and are available on request from the first author, as outlined below in future directions and supplementary materials.
Outcome measures
To determine the extent of the unmet needs of early family education and standardised multidisciplinary management with this population, staff and family member participants completed paper-based customised surveys. Participants rated their self-perceived knowledge, confidence and skill, on a 10-point Likert scale from ‘strongly disagree’ to ‘strongly agree’, in providing care to patients with DoC pre and post introduction of family and staff education packages.
Surveys to family members consisted of 11 (pre-survey) and 16 (post-survey) numerical and free-text response questions, and explored family’s knowledge and confidence regarding DoC and sensory stimulation, as well satisfaction with the level of education received from the allied health team pre and post intervention. Baseline outcome measures were collected from family members on admission of patient with DoC to the neurosciences unit via pre family education surveys. Post education surveys were collected from family member participants on discharge of the patient with DoC from the neurosciences unit.
The staff surveys consisted of 13 numerical and free-text response questions, and asked participants to rate their level of experience, knowledge, confidence and self-perceived skill in working with patients with DoC, assessing level of awareness, delivering sensory stimulation, and delivering education to families pre and post introduction of the staff education packages. Baseline outcome measures were collected from staff participants via pre education surveys prior to receiving the staff education via in-service, and post outcome measures were collected from staff participants on rotation from the neurosciences unit or at completion of the study if the staff member did not rotate. The post intervention surveys to staff participants also explored their overall satisfaction with the new family and staff education packages.
Data analysis
Survey data were downloaded into SPSS (IBM Corporation) and were plotted on a histogram to check for normality. As the numerical data were not normally distributed, non-parametric statistics (median, interquartile range (IQR), Wilcoxon signed-rank test) were conducted using SPSS to analyse the quantitative data collected from the pre and post education survey Likert scale responses. Statistical significance was set at P < 0.05.
Free-text comments from staff and family surveys were analysed using thematic analysis with an inductive approach, with the coding of responses driven by the content of the comments as per the six-phase approach of Braun and Clarke thematic analysis (2006). The free-text comments from both staff and family surveys were collated, repeatedly reviewed, and coded into groups by researchers E.K. and M.O. The codes were then grouped together to form themes and subthemes that best represented the survey free-text responses. Themes and subthemes were reviewed iteratively in relation to the free-text survey responses, and were modified as required. To ensure rigour, the themes and subthemes were reviewed and cross-checked by a third member of the research team (E.F).
Results
Participants
Eligible participants were the family members of patients admitted to an acute neurosciences unit with DoC and health professionals (allied health and nursing staff) working with this population in the Neurosciences unit. All participants were aged 18 years and over. Twenty-six family members (parents n = 10, spouses n = 10, siblings n = 4, children n = 2) and 86 health professionals (nurses n = 56, allied health n = 30) were recruited and completed pre education surveys. Due to difficulties with follow-up post the delivery of the education packages, only 14 family member participants (53.8%) and 69 health professional participants (80.2%) completed post education surveys.
During the data collection period, 26 family member participants (linked to 21 patients identified as presenting with a DoC who were admitted to an acute neurosciences unit) and 86 staff participants engaged in the study. The demographic characteristics of family and staff participants are presented in Table 2. Family member participants were predominantly women (n = 22, 84.6%), and their relationship status to a patient was largely parent (n = 10, 38.4%) or spouse (n = 10, 38.4%). The demographic characteristics for staff participants included profession and length of experience working with DoC patients and their families. There were 56 nursing staff (65.1%) and 30 allied health (34.8%) who consented to participate in the study. Of the 30 allied health, 17 were physiotherapists (56.6%), seven were speech pathologists (23.3%) and six were occupational therapists (20%). There was a mostly equal split of staff length of experience working with DoC, ranging from ‘no experience’ to ‘>10 years’ experience’; however, the greatest number of staff reported ‘no experience in working with patients with DoC’ (n = 18, 20.5%; Table 2).
| Characteristic | n | n (%) | |
|---|---|---|---|
| Family member participants (n = 26) | |||
| Gender | 26 | ||
| Male | 4 (15.3%) | ||
| Female | 22 (84.6%) | ||
| Relationship to patient | 26 | ||
| Parent | 10 (38.4%) | ||
| Spouse | 10 (38.4%) | ||
| Sibling | 4 (15.4%) | ||
| Child | 2 (7.7%) | ||
| Staff participants (n = 86) | |||
| Profession | 86 | ||
| Nursing staff | 56 (65.1%) | ||
| Allied health | 30 (34.8%) | ||
| Physiotherapy | 30 | 17 (56.6%) | |
| Speech pathology | 7 (23.3%) | ||
| Occupational therapy | 6 (20%) | ||
| Length of experience working with DoC | 86 | ||
| No experience | 18 (20.5%) | ||
| 1–6 months | 12 (13.6%) | ||
| 6–12 months | 13 (14.8%) | ||
| 1–3 years | 13 (14.8%) | ||
| 4–6 years | 8 (9.1%) | ||
| 7–10 years | 9 (10.2%) | ||
| >10 years | 13 (14.8%) | ||
Quantitative survey data
As shown in the graphs pictured (Figs 2, 3), there was a statistically significant improvement across all areas of self-perceived knowledge, confidence, and skill for both family and staff post introduction of the education packages (all with P < 0.05). Exact comparison data, including pre and post medians, IQRs, and P-values, are available in supplementary online material. The difference in numerical survey data post the new intervention is hypothesised to be due to the education packages having a direct impact on the participants’ self-perceived knowledge, confidence and skill. It is acknowledged that there may have been additional contributing factors that were not investigated that may have contributed to this difference.
Staff numerical survey results pre and post education. AH, allied health; edn, education; FM, family member.
Family numerical survey results pre and post education. AH, allied health; edn, education; FM, family member.
Fig. 2 demonstrates the pre and post numerical staff survey results collected from the 10-point Likert scale responses. There was a notable increase in staff self-reported knowledge of DoC and sensory stimulation post receiving education, with a median response of 3 out of 10 pre education and a median response of 9 out of 10 post education (P < 0.001). There was also a significant increase in staff self-reported confidence in providing education to family members regarding DoC (P < 0.001). Staff also reported a significant increase in understanding how to deliver sensory stimulation and at what frequency (P < 0.001).
Fig. 3 outlines the pre and post numerical survey results for family member participant surveys. There was a significant increase in family member participants’ self-reported understanding of DoC and sensory stimulation post receiving the family education package (P < 0.001). Significant increases were also reported in verbal and written education on DoC and sensory stimulation delivered to families by allied health. There was a median of 1 out of 10 regarding written education on sensory stimulation received on the pre surveys, and a median of 9 out of 10 on the post survey results (P < 0.001). Additionally, there was a median response of 9 out of 10 from family members regarding their ability to ask questions of staff regarding DoC management post the new intervention.
Qualitative free-text survey results
Statements from staff and family member participants in the free-text survey questions provided rich additional data regarding perceptions of the new education packages in increasing self-perceived knowledge, confidence and skill in DoC management. Additionally, free-text responses provided recommendations for improving, maintaining and sustaining education and training.
Thematic analysis of the free-text staff survey responses identified three themes and six subthemes. See Table 3 for themes, subthemes and supporting statements from staff.
| Theme | Subthemes | Representative free-text responses | |
|---|---|---|---|
| Impact of staff education on staff confidence and self-perceived skill | Increase in confidence in DoC, SS and education | ‘I have felt much more comfortable in my dealing with patients in regards to sensory stimulation and education their families.’ (NS1) | |
| ‘Felt very supported and am now much more confident with this patient population.’ (AH2) | |||
| ‘Overall, I think the project is addressing a gap in practice and approach for these patients, which is great to see. I feel on a busy acute ward (e.g. neurosurgery), it can be challenging to see patients regularly to monitor changes, and complete sensory stimulation and education. I have felt supported by the AH project team and local allied health when working with this patient group. I also feel joint assessment and therapy (e.g. PT/OT/SP) is beneficial in discussing strategies and checking in re: assessment of changes.’ (AH18) | |||
| ‘The in-service was easy to follow and relevant to our caseload. The examples used helped me to understand how to apply the sensory stimulation activities to patients and the importance of individualisation of programs.’ (AH29) | |||
| Lacking confidence despite in-service | ‘Loved the in-service given with the SS that we can provide to our patients. However, not confident enough to provide education to FM, as I’m not sure what to educate them on and how to educate them. Great in-service with Qs answered.’ (NS38) | ||
| ‘I believe that I can easily follow the patient’s individualised sensory stimulation plan that has been outlined by AH, but I don’t feel overly confident in facilitating/providing education on this. This could be partly because I still feel as though I am a novice nurse and while we have many patients that fit this category, I haven’t had the opportunity to nurse them consistently. Another contributing factor could be that there are usually multiple nursing duties that are required for these patients and that we aren’t afforded the time to engage in dedicated sensory stimulation, that perhaps this is done incidentally in our interactions with them.’ (NS4) | |||
| Staff rotations impact on maintenance of skill and confidence | ‘After I did my education/attended in-service, I had a few appropriate pts. However, shortly afterwards I rotated caseloads and have not had any suitable pts since (~6 months). This has impacted my retention of the information and accordingly, my confidence in this area’. (AH7) | ||
| Elements of education packages that were ideal from staff perspective | Useful resources and training for staff and families | ‘Table, pamphlets and individual patient plans are useful for staff, patient’s family, visitors and carers.’ (NS19) | |
| ‘The in-service that I attended was very helpful and informative about DOC and stimulation plans.’ (NS52) | |||
| ‘Practical observations very helpful to see how to communicate with patient.’ (AH2) | |||
| ‘Fantastic in-services, addressed all points. Now it’s a matter of exposure to this patient population. Maybe a multiple choice quiz to consolidate. Great to have a copy of In-service as patient examples and sensory stim tasks.’ (AH24) | |||
| ‘I found the hands-on patient learning very helpful in applying the evidence/theory into practice.’ (AH11) | |||
| Elements of staff education and training to improve | Frequency of training – request for refresher training | ‘It has been a while since training. Would be good to do some more on different activities.’ (NS6) | |
| ‘Would love if you could send me the in-service PowerPoint to refresh my memory.’ (NS26) | |||
| ‘Refresher course for understanding level/disorder of consciousness should be considered regularly yearly.’ (NS36) | |||
| ‘I got a lot out of the in-service about this, but feel like I need further education or direction for resources to view.’ (NS54) | |||
| Type of training – request for practical training | ‘I think some more education and some consistent nurse-input is required to gain more understanding. Perhaps if nurses could come to low level MDT in gym (dependent on staffing situation on ward) or maybe a more hands-on in-service? Not trying to have a go or be negative, just some people learn better with hands-on experience. Great job guys!’ (NS15) | ||
| ‘Would suggest allowing participants to assist with sensory planning session for experience.’ (AH2) | |||
| ‘Would benefit from the training/education sessions potentially providing opportunity to demonstrate the sensory stimulation options (have real-life examples videos or either practice on each other i.e. how to approach the patient, how to apply the stimuli, for how long do you wait for a response, how many repetitions); practice the wording or watch video of the MDT or singular therapist/nurse explaining sensory stimulation education to a family member to increase confidence, as very confronting situation if not exposed to it before.’ (AH23) |
DoC, disorders of consciousness; SS, sensory stimulation; AH, allied health; FM, family member.
Staff participants described their overall satisfaction with the staff education package, reflecting that attending the staff in-service and accessing resources increased their self-perceived knowledge, confidence and skill in delivery of best practice DoC assessment and management, including sensory stimulation family education. However, there were also comments from two nursing staff participants regarding ongoing reduced confidence in providing education to family members regarding DoC and sensory stimulation despite attending the staff in-service, which one nurse attributed to being a novice nurse and limited time to engage in dedicated sensory stimulation due to multiple nursing cares. In addition, an allied health participant reflected on the impact of staff rotations on applying knowledge to practice, and maintaining confidence and skill in DoC assessment and management post receiving education and training.
When reflecting on the newly implemented staff and family education packages, staff participants expressed that they found the in-services, and the staff and family education resources (including individualised patient sensory stimulation plans) very helpful and informative for all staff, families and visitors. Allied health staff participants described the hands-on patient learning and practical observations as very helpful in applying the evidence/theory into practice.
Staff participants also provided several suggestions for optimising staff training and skill maintenance, such as offering regular refresher training, and more opportunities for practical training and observation of experienced staff.
Thematic analysis of the free-text family member survey responses identified three themes and six subthemes. Themes, subthemes and supporting statements from family members are presented in Table 4.
| Theme | Subthemes | Example representative free-text responses | |
|---|---|---|---|
| Family education was helpful in increasing family members’ knowledge and confidence surrounding DoC and SS | Increased awareness and understanding of DoC | Pre education: | |
| ‘When they said sedation will stop and they woke her I expected her to wake and no idea at the levels of consciousness involved.’ (FM1) | |||
| ‘I felt overwhelmed in ICU and couldn’t take in the information.’ (FM20) | |||
| ‘I felt I was told only a little of what I know since being in neurosciences. Felt helpless in ICU. Or maybe I was in shock from the accident.’ (FM21) | |||
| Post education: | |||
| ‘I wish I understood more about the GCS – I remember thinking what is it? They kept saying it was a 3.’ (FM17) | |||
| ‘I thought he was just going to wake up some day, so it was good.’ (FM17) | |||
| ‘When [patient] was in the ICU and they were going to wake him up and then he didn’t wake up as we would know and think, it was all systems panic. I know I asked questions time and time again about how ‘normal’ what was going on was, I did so much Googling to try and understand. What I eventually discovered was information contained in your patient information sheet. I was Googling things like ‘haven’t fully woken up from anaesthetic – why?’ ‘how long until anaesthetic wears off after operation?’ ‘awake but not aware’. It actually took a fair few searches to discover the term disorder of consciousness and minimally conscious state. For me personally this information sheet is perfect. And it gives you overall insight, not definite answers, for what was [patient’s] state. And that information sheds light on the process. It gave me relief when I finally understood some of the Google answers – so a sheet like this back in our ICU journey could have been amazing and so useful for us’ (FM18) | |||
| Increased awareness of what to do with their loved one (e.g. SS tasks) | Pre education: | ||
| ‘I know to talk to him about day. I wear perfume so he knows it’s me. Play music he knows and loves.’ (FM3) | |||
| ‘OT in ICU told us about talking to him, touch, music and to fill out the flower about him in ICU.’ (FM6) | |||
| ‘I would only know to try and trigger a physical response such as squeezing hand etc.’ (FM8) | |||
| ‘Talk to them, relay stories and encourage movements.’ (FM15) | |||
| ‘Reiki, kinesiology and verbal stimuli.’ (FM16) | |||
| ‘Rub his hands and feet. Squeeze my finger.’ (FM19) | |||
| ‘Due to COVID, we as a family cannot participate because of visiting restrictions.’ (FM24) | |||
| Post education: | |||
| ‘Rubbing in moisturiser, listening to music, smelling things, massages. Sensory stimulation I learnt best watching the staff and talking to them.’ (FM1) | |||
| ‘Familiar scents, photos, music, recorded voices (family).’ (FM3) | |||
| ‘Play music, show photos.’ (FM4) | |||
| ‘Play music, tell familiar stories, play TV shows, show football segments.’ (FM14) | |||
| ‘Stir memories and allow them to reminisce about their life.’ (FM19) | |||
| ‘Appreciate being given the opportunity to understand how we can help [patients] recovery. We all want to do everything we can to help him recover.’ (FM23) | |||
| Elements of family education that were ideal | Best part of education program | ‘Watching my daughter respond positively.’ (FM1) | |
| ‘Knowing what to do with touch and talking to him.’ (FM2) | |||
| ‘Think it’s all helpful and good. I liked the written stimulation plan, because I could show it to family and friends. Physio, speech pathologist and occupational therapist took time to explain things well and answer my questions.’ (FM3) | |||
| ‘Nothing in particular stands out, it was all good.’ (FM4) | |||
| ‘It [sensory stimulation plan] was great: everyone would read it. I’d tell my family and friends to read it – someone brought up perfume (his favourite) to help with stimulation. Friends and family knew his interests and what to talk about.’ (FM6) | |||
| ‘The written information. We appreciated the information as we had no experience with brain injury, and it was very stressful for the family.’ (FM9) | |||
| ‘It was very easy to follow. Was positioned in an area where everyone could read and where I could suggest they read and participate in.’ (FM14) | |||
| ‘For me personally this information sheet is perfect. And it gives you overall insight, not definite answers, for what was [patient’s] state.’ (FM18) | |||
| ‘There was so much help – really appreciate it.’ (FM19) | |||
| ‘Written program designed for [patient] to give us specific direction on how to help him.’ (FM23) | |||
| Positive perceptions of staff provision of education | Post education: | ||
| ‘Staff have been great! Really helping him. I felt it helps a lot with talking to him to help his understanding.’ (FM2) | |||
| ‘Physio, speech pathologist and occupational therapist took time to explain things well and answer my questions.’ (FM3) | |||
| ‘Physiotherapy was the best part of the program for [patient] we found. All allied health team were great; however, [patient] was stuck in neurosciences unit for too long while he waited for brain injury rehab.’ (FM10) | |||
| ‘We the family of [patient] are really happy for the support you done for our son, we will say thanks so much to whole team who do the services to [patient].’ (FM26) | |||
| Elements of family education to change | Suggestions for improving education program | ‘Receiving literature about levels of consciousness would be helpful.’ (FM1) | |
| ‘Provided written material early on arrival would be helpful, as it was difficult to explain to family the condition.’ (FM14) | |||
| ‘For the public health system I was pretty happy, I mean you could always have more.’ (FM17) | |||
| ‘Took a while for the program to be put together. More follow up to check how it was going.’ (FM23) | |||
| Considerations for staff provision of education | Pre education: | ||
| ‘I have received virtually no information from the allied health team. Actually, I have not been approached by the allied health team at all.’ (FM13) | |||
| ‘From the start they [the medical team] have strongly stated and repeatedly stated he will not recover, and this has caused significant distress to the family.’ (FM13) |
Note. DoC, disorders of consciousnes; SS, sensory stimulation; AH, allied health; FM, family member.
Family member participants reflected on the family education package, commenting that the family education handout was perfect in providing an overall summary of DoC, so that families are not relying on Google searches when their loved one does not ‘wake up’ on weaning of sedation in ICU. There were also numerous statements to support the reported increased understanding of sensory stimulation tasks post receiving education from staff, with a family member participant stating, ‘appreciate being given the opportunity to understand how we can help [patient’s] recovery’. [FM23]
When reflecting on the best part of the family education package, family member participants expressed that the entire program was helpful in improving satisfaction and understanding of DoC and brain injury at an extremely stressful time for the family of the patient with DoC. In particular, the family education handout and personalised sensory stimulation plans were identified as key resources that were useful in assisting family understanding of DoC and awareness of therapy tasks they could deliver to assist in their loved one’s recovery. One family member [FM14] referred to the resources as being ‘easy to follow’ and positioned in an optimal location so all family and visitors could read and engage appropriately with the patient with DoC. Family member perceptions of staff education were overwhelmingly positive, with participants describing their overall satisfaction with education received from the allied health team and support received from the entire MDT. Families reported they were grateful for the time taken by allied health to provide education and answer their questions surrounding DoC and their loved one.
Despite the majority of family member feedback being positive, one family member commented on the significant distress associated with receiving strong and repeated messaging from the medical team regarding lack of chance for recovery, and explained that they had not been approached by the allied health team on the pre education survey.
Discussion
This study explored clinicians’ and families’ perceptions of staff and family DoC education packages in increasing self-perceived knowledge, confidence and skill in early, best practice assessment and management of patients presenting with DoC post severe ABI within the acute hospital setting. Staff and family participants expressed that the education packages implemented were successful in increasing their self-perceived knowledge, confidence and skill in the delivery of best practice DoC assessment and management, with statistically significant improvements noted across all areas for both participant groups post receiving education. Participants also offered clear suggestions for optimising future iterations and implementation of DoC assessment and management resources, as well as initial considerations for future education and training to support sustainable implementation of education resources into standard care.
The results of this study demonstrated that a standardised staff education package on DoC assessment and management, including staff in-services, can significantly increase staff self-perceived skill and confidence across various areas, such as family education, neurobehavioural assessment of awareness and sensory stimulation. This aligns closely with Giacino et al.’s (2020) minimum competency recommendations for programs providing services for persons with DoC, suggesting that DoC programs need to have well-defined plans for staff education and training in place to ensure DoC assessment and management align with evidence-based practice. In addition, this study involved the introduction of standardised neurobehavioural assessments alongside staff training, which is well supported within the literature to increase diagnostic accuracy and prognostication for this cohort (Wannez et al. 2017; Giacino et al. 2018; Murtaugh and Shapiro Rosenbaum 2023).
To our knowledge, this is the first study to evaluate staff and family self-perceived knowledge, confidence, and skill in the early assessment and management of patients presenting with a DoC post severe ABI. Previous research has explored discipline-specific consensus ratings, such as Roberts and Greenwood (2019) who explored speech and language therapist best practice recommendations for patients in PDOC in the UK using a Delphi approach. The present study extended this evidence-base by exploring the impact of MDT staff and family education in DoC management. Specifically, the project delivered a standardised model of care on an acute neurosciences unit, in which the MDT and families both provided evidence-based DoC assessment and management in a supported and sharing environment (Giacino et al. 2018, 2020; Royal College of Physicians 2020).
In the present study, the reported increase in family satisfaction with education and support received from staff, as well as the rise in family knowledge of DoC and sensory stimulation, may have been related to the increase in written and verbal education delivered by staff to families regarding DoC and sensory stimulation. Family participants reported improved satisfaction with education and support, which aligns with international guidelines recommendations, suggesting that early collaborative support, education and prognostic counselling from staff to families is critical (Giacino et al. 2020; Royal College of Physicians 2020). This also aligns with findings from studies exploring carer burden and reduction in quality of life post diagnosis of a loved one with a DoC, suggesting early education and involvement of caregivers can assist with alleviating psychological distress (Giovannetti et al. 2013; Chinner et al. 2022).
Strengths and limitations
The present study had its strengths, but was also limited by several factors. Regarding strengths, the relatively large sample size of nursing and allied health staff across the 2-year data collection period allowed for greater representativeness of the qualitative and quantitative staff survey results. Additionally, the free-text questions within the staff and family surveys allowed participants to provide further perceptions about the new intervention, without being solely constrained to pre-defined numerical Likert scale options.
Regarding limitations, due to the COVID-19 pandemic, the final 6 months of recruitment and data collection were impacted by COVID visitor restrictions. Given one of the requirements of this study procedure was for staff to provide education to family members on DoC and sensory stimulation, to facilitate family members assisting in the delivery of sensory stimulation, the impact of visitor restrictions should be taken into account. Staff reported they were able to provide verbal education to families over the phone and send electronic or hard copies of written education; however, COVID restrictions impacted staff’s ability to demonstrate multi-sensory stimulation to families of patients with DoC during this period.
Additionally, as the aim of this study was to evaluate the effectiveness of the education packages in increasing participant self-perceived knowledge, confidence and skill, the current study was not embedded within established knowledge translation, implementation science or educational frameworks. Many interventions found to be effective in health research fail to translate into meaningful patient outcomes, which is often attributed to limited use of implementation theories by health professionals (Damschroder et al. 2022). To support translation of research into clinical practice, evaluation of setting constructs within an implementation science framework is required (Damschroder et al. 2022).
Critically, due to previously mentioned attrition, only 14 of the 26 family member participants (53.8%) and 69 of the 86 staff participants (80.2%) completed the post education surveys. Additionally, given the paper-based nature of the surveys, the survey questions were not mandatory which resulted in only 19/69 (27.5%) staff who completed post education surveys providing additional free-text comments. This may increase the risk of bias and limit the representativeness of the qualitative free-text staff responses. In contrast, the family free-text survey responses were much more representative, with 23 of the 26 (88.5%) family participants providing free-text responses. Finally, the single site, tertiary nature of this study may limit the generalisability of the study findings to other health services and facilities.
Future directions
Current findings will guide future iterations of DoC staff and family education, including expansion of DoC assessment and management resources for the acute hospital setting to improve its feasibility, sustainability and generalisability. The current resources referenced throughout this study have been further developed and expanded upon to investigate within an implementation study against an implementation science framework. The subsequent implementation study aimed to measure staff and family uptake and fidelity to DoC assessment and management resources (including skills learnt in staff and family education) as standard care, and to explore staff and family’s perceptions surrounding sustainability of implementation of the resources. This approach will assist with integration and adoption of DoC assessment and management resources across various hospitals and health services across the country. The staff and family education packages, including DoC assessment and management resources, which have been referenced throughout this study, have been published for sharing with other hospitals and health services, and are available on request from the first author. Future research could also explore the critical ingredients in staff and family DoC education packages regarding best practice DoC assessment and management within the acute hospital setting, to further optimise practice.
Conclusion
Data suggest that newly developed family and staff education packages can enhance family and staff self-perceived knowledge, confidence and skills surrounding management of patients with DoC. There was a statistically significant increase in post education survey results for both staff and family member participants. This study provides data regarding the previously unmet need of early education to family members regarding DoC and sensory stimulation, as well as the benefits of a standardised staff education package in increasing staff self-perceived knowledge, skill and confidence. Similar enhancements may be seen on other units that engage in uptake of the staff and family education program, facilitating consistent quality of care for this patient cohort and their loved ones.
Supplementary material
The DoC assessment and management resources within the family and staff education packages referenced throughout this study have been further developed and expanded upon for a Phase 2 implementation study. These resources are available on request via email from the first author. The staff and family surveys, and the complete quantitative comparison data, including pre and post medians, IQRs, and P-values, are available in supplementary online materials here. Supplementary material is available online.
Data availability
The data that support this study cannot be publicly shared due to ethical or privacy reasons and may be shared upon reasonable request to the corresponding author if appropriate.
Declaration of funding
This research received no specific grant from any funding agency, commercial or not-for-profit sectors. A 10-week part-time secondment to the Centre for Functioning and Health Research (CFAHR), Metro South Hospital and Health Service (MSHHS) allowed for complete data evaluation and publication of results.
Ethics
The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national and institutional committees on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008.
Acknowledgements
The authors thank participants for their contribution to the study. The authors also acknowledge Caulfield ABI Unit, Victoria, Australia, for resource sharing to allow adaptation of certain resources for the acute hospital setting. Finally, the authors thank the Centre for Functioning and Health Research (CFAHR), Metro South Hospital and Health Service (MSHHS) for funded time for publication of results.
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