Exploring the goals and outcomes of adults with severe acquired brain injury participating in an extended inpatient brain injury rehabilitation unit in Australia

Abstract

Purpose

To explore the rehabilitation goals and evaluate goal attainment outcomes of people with severe acquired brain injury (ABI), and investigate the relationship between goal engagement and goal attainment.

Materials and methods

Mixed-methods cohort study with twenty-nine adults with severe ABI in Australia. Demographic data, goal statements and pre-post program Goal Attainment Scale scores as well as Goal Engagement Scale scores were collected. Goals were coded using inductive content analysis and categorised by ICF component and domain. Goal attainment within ICF categories was described and compared using descriptive statistics. Pre-post program change in goal attainment was evaluated using Wilcoxon signed rank tests and correlations between goal engagement and attainment was explored using Spearman’s (rho).

Results

94% of 320 goals were categorised as ICF Activity and Participation. There was significant improvement in goal attainment between admission and discharge (z=-0.47, p < 0.01). There was no significant relationship between goal engagement and goal attainment however there was a positive association between engagement in goal setting at admission and discharge.

Conclusions: This interdisciplinary, inpatient rehabilitation program underpinned by key-worker facilitated person-centred, role-based goal setting resulted in goal attainment in chosen goals, which were primarily activity and participation-focused.

IMPLICATIONS FOR REHABILITATION

• Goal setting is a core rehabilitation practice and service delivery models that facilitate collaborative goal setting which engages patients, their significant others and health professionals as a team are necessary to enable person-centred care.

• Role-based goal setting effectively engaged patients with acquired brain injury and their families, facilitating goal setting and the formation of activity and participation-focused rehabilitation goals in this extended rehabilitation setting.

Keywords:

• Acquired brain injury
• goal setting
• rehabilitation
• goal attainment
• goal engagement

Introduction

Acquired brain injury (ABI) can occur due to various causes such as traumatic brain injury (TBI), brain tumour, and cerebrovascular accident (CVA) [1], and people with severe ABI commonly experience significant physical, cognitive and behavioural changes which often impact performance and participation in meaningful occupations such as community access, employment and maintaining social relationships [2–7].

Changes in cognitive, physical, behavioural and neurological sequelae have been widely reported to persist after severe ABI [7–9], necessitating support across the lifespan as recognised by rehabilitation funding models such as the lifetime care and support scheme [10–12]. Specialised rehabilitation delivered by a multi-professional team, using an individualised approach underpinned by person-centred goal setting is recommended in international guidelines and consensus statements [13–16]. In Australia, extended rehabilitation (ER), also referred to as slow stream rehabilitation, offers specialised, inpatient person-centred rehabilitation over an extended period of time [17, 18].

ER is comprehensive and individualised, inpatient rehabilitation delivered over a prolonged duration (6–24 months) for individuals with extended recovery times [18–20], and whilst recommended may not be universally available to all individuals with severe ABI. Individuals with severe ABI may make small but incremental functional gains over extended time periods with improvements not necessarily apparent in traditional inpatient rehabilitation settings where lengths of stay may be shorter [19]. ER has been shown to be a cost-effective model of service delivery [20] assisting people with severe ABI to maximise their independence and quality of life [18, 19]. However, brain-injury related changes such as communication and cognitive impairments (e.g., impaired self-awareness, memory), can be barriers to engagement in rehabilitation including core components such as goal setting and subsequent rehabilitation efforts [14, 21–23].

Goal setting has been depicted as the “cornerstone” of rehabilitation [24] as it can promote person-centred practice by making the patient’s priorities the central focus of the rehabilitation team’s efforts [25, 26]. The involvement of significant others has also been identified as a key component [27, 28] to support involvement in goal setting and rehabilitation. However, the involvement of significant others in rehabilitation goal setting may vary [27] which may be due to differences in perspectives between rehabilitation staff, patients and their families, [15, 22, 23, 29]. Research has shown that therapeutic relationships can be strengthened when goal setting is underpinned by person-centred approaches [14, 15, 22, 29–32]. A systematic review and meta-synthesis by Plant et al. [15] explored barriers and facilitators to goal setting in stroke rehabilitation. They noted that tailoring the goal setting process by actively involving the patient and family through frequent communication and providing stroke education during rehabilitation facilitated goal setting. A Cochrane review published in 2015 synthesised the evidence for goal setting with adults receiving disability-related clinical rehabilitation. The review concluded that due to the wide range of goal setting approaches and methods used across studies, there was low quality evidence supporting goal setting for improving outcomes [33]. A further, more recent systematic review investigated the impact of goal setting on engagement and rehabilitation outcomes after ABI [23]. The results showed that active participation in goal setting had positive impacts on engagement during rehabilitation [23].

Whilst some research has explored the relationship between engagement in goal setting and rehabilitation outcomes, there is a small body of research exploring the level of patient and family engagement in goal setting [21, 25, 29]. Turner-Stokes et al. [25] investigated the relationship between patient and family engagement in and satisfaction with goal planning, goal attainment and functional gains during rehabilitation in younger adult patients with complex neurological disabilities (n = 83). Results showed that patient engagement was strongly correlated with heightened satisfaction with goal setting and greater goal attainment and functional gains post-discharge [25]. A later study by D’Cruz et al. [29] sought to build on this by exploring the level of engagement of patients with moderate to severe ABI during goal setting, and the experiences of patients, family members and clinicians involved. They found that perceptions of goal engagement varied between the three key stakeholders, and future research exploring engagement in goal setting for this population was warranted [29]. Building on this, Jenkins et al. [34] noted that collaborative person-centred approaches to goal setting supported children with ABI and their families to be actively engaged in goal setting to generate meaningful goals. The current study seeks to extend on research in the field of ABI by exploring the relationship between patient and family engagement in goal setting and outcomes.

Exploring the goals of people undergoing rehabilitation can potentially inform rehabilitation practice so that it is focused on the patient’s perceived individual needs and priorities. Additionally, the broader exploration of goals across a service can inform wider service delivery priorities to facilitate service planning and potentially support goal setting. For example, previous studies have explored patient’s goals in various service settings and used this information to develop goal menus. Turner-Stokes et al. [26] sought to develop a structured approach to goal setting for inpatient programs providing rehabilitation services to people with prolonged disorders of consciousness (PDOC), developing a structured goal menu to facilitate rehabilitation goal setting by categorising 661 goals of 162 people with ABI. This research found 18 common goal categories that formed the basis of a goal menu, providing a framework to support rehabilitation goal setting with people with PDOC. Similarly, Borgen et al. [35] investigated and compared goal attainment across different functional domains following an individualised, goal-oriented and home-based intervention for individuals with TBI (n = 59). Goals were categorised into functional domains according to previously described target outcomes [36] and the International Classification of Functioning, Disability and Health (ICF). The team identified goals in 20 categories across four domains including cognitive difficulties, physical/somatic difficulties, emotional difficulties and social function and participation. Results also indicated that goal attainment was high for this community-dwelling sample of people with TBI, with 91.4% of the 151 goals achieved or exceeding the expected level by program end [36]. The ICF framework has also been used in other studies as a means of mapping rehabilitation goals for children with ABI. Studies by Kelly et al. [37] and McCarron et al. [38] both mapped rehabilitation goals set in the context of paediatric ABI according to the ICF framework. Kelly et al. [37] found that goals were most commonly set in the domains of mobility, self-care and communication in a residential rehabilitation unit setting, while McCarron et al. [38] noted that the wide range of goals set by young people with ABI through a community rehabilitation service required an individualised and interdisciplinary approach. These previous studies exploring the nature of goals of people with ABI have been conducted with children with ABI [37, 38], adults with ABI living at home in the community [35] and people with PDOC [26]. The current study aimed to extend this literature by exploring the nature of goals with adults with severe ABI in an extended, inpatient rehabilitation setting.

In the service setting where this research took place, an interdisciplinary team of health professionals specialising in neurological rehabilitation delivered person-centered care. Service delivery was underpinned by a novel, role-based goal setting approach. This approach was designed to engage the person with ABI and their family in goal setting to elicit meaningful, person-centred goals. This role-based approach was based on the Model of Human Occupation [39], designed to explore important life roles as a basis for identifying activity and participation-focused goals linked to the person’s valued roles [40]. An interdisciplinary rehabilitation team approach was employed [40, 41] in accordance with international guidelines and consensus statements [13, 16], facilitated by a key-worker model whereby one team member was responsible for facilitating and coordinating goal setting with the patient, family and clinical team. Embedded as routine practice in this setting was the use of Goal Attainment Scaling (GAS) to monitor and measure attainment of program goals [42], and use of the Goal Engagement Scale (GES) to monitor and optimise patient and family engagement in the goal setting process [25], which are explained in the next section. This study used routinely collected data to explore goal attainment, patient and family engagement in goal setting and the relationship between engagement and goal setting in ER, specifically aiming to:

1. Describe the nature of rehabilitation goals identified according to the ICF and overall goal attainment in goal areas;

2. Evaluate change between pre- and post- rehabilitation in goal engagement and goal attainment; and

3. Explore the relationship between goal engagement and goal attainment.

We hypothesised that we would find significant improvements in goal attainment post program, high levels of patient and family engagement and a significant positive relationship between goal engagement and goal attainment.

Materials and methods

The current study was a cohort study, analysing routinely collected data using quantitative and qualitative methods. This paper was part of a larger overarching project which also explored the role-based goal setting approach from the perspectives of patients, families and clinicians within an ER unit in Australia. The study received ethical clearance from The University of Queensland Human Research Ethics Committee (approval number 2017000383) and Metro South Human Research Ethics Committee (approval number HREC/16/QPAH/805) prior to study commencement. Written consent was obtained prior to participation. The RECORD reporting guidelines, designed to guide the reporting of observational studies using routinely-collected health data, were used to direct the reporting of this study [43].

Extended rehabilitation unit

The rehabilitation unit was an 8-bed, inpatient unit providing extended post-acute rehabilitation services to adults with severe ABI in a metropolitan area of Australia. Various health professionals were employed in different capacities based on the full-time equivalent workload of 1.0. The team comprised allied health assistants, dietitian, music therapist, neuropsychologist, nursing staff, occupational therapist, physiotherapist, recreation officer, rehabilitation consultant, social worker, and speech pathologist. This unit is part of a continuum of specialised Brain Injury Rehabilitation Services, ranging from post-acute to community-based services. It is designed to support and provide rehabilitation to individuals with ABI, recognizing the needs of those with severe ABI who may require ER [1].

The role-based goal setting approach

The goal setting approach was facilitated by a key-worker using a structured and inclusive approach where the life roles identified as important to the patient, guided the goals that were set. Meaningful and important goals that were elicited from discussions about the person’s life roles, were negotiated and agreed upon by the patient, family and treating rehabilitation team. Rehabilitation goals were routinely documented to represent the minimum expected outcome. To ensure that the agreed goals were important to the patient, goal importance was rated by patients (or family members where patients are unable to rate importance themselves) on admission, on a scale from 0 (not important) to 3 (highly important). The GAS-light approach was followed to measure progression of goal attainment from admission to discharge [44], while patient and family engagement was monitored and rated by the treating team using the GES [25]. A further, detailed description of the role-based goal setting approach and model of care is described elsewhere [40, 41].

Participants

Eligible participants were adults admitted to the unit over a 40-month period. Informed written consent was obtained prior to the collection of routinely collected data to address the aims of the study. Of the 31 patients admitted to the unit during this period, 29 provided consent to participate.

Measures

Goal attainment scaling

GAS is an individualised measure of goal outcomes designed to objectively determine within-person change on a 5-point scale ranging from −2 (much less than expected performance) to +2 (much more than expected performance), with a score of 0 representing the expected level of performance at program completion [41]. While the GAS possesses strengths as an objective measure for assessing the attainment of individualised goals, it has faced criticism on psychometric grounds. A number of critiques have been raised, including the potential for the expected level of achievement to be set "too low"/“too easy.” Recommendations have been made to address these potential limitations and ensure the validity of outcomes, including implementing training and evaluating the quality of GAS appraisal [45–48]. The GAS enables evaluation of longitudinal, within-subject change and comparison of performance between individuals due to the calculation of a GAS T-score, with a T-score of 50 representing the overall expected level of performance [49]. More recently, a modified approach (GAS-light) which is less time-consuming and designed for use by clinical teams, involves pre-defining the expected outcome and scoring baseline performance [44] while maintaining the psychometrics of the GAS [50–52]. In this unit, the GAS-light method was used and patient goals were weighted by the treating team to reflect goal importance (scale of 0–3) and difficulty (0–3) when calculating T-scores as per the guidelines by Turner-Stokes [44]. Strategies implemented in this setting to prevent the establishment of achievement levels that were either “too easy” or “too challenging” included: engaging neurorehabilitation clinicians with extensive experience in this field, adopting a team consensus method for determining the “zero” level that involved patients and families (when feasible), rather than relying on an individual’s judgment alone, and conducting staff training that encompassed a buddy system and regular reviews of attainment levels. GAS scores on admission and discharge were routinely entered by clinical staff into a GAS excel spreadsheet which automatically calculated GAS T-scores [44].

Goal engagement scale

Turner-Stokes et al. [25] introduced the GES to complement the use of the GAS-light. Initially implemented in a cohort of 83 individuals, predominantly with acquired brain injuries undergoing specialised inpatient neurorehabilitation, including those with severe impairments, the GES aimed to evaluate patient and/or family engagement in goal planning. The level of engagement in goal setting is rated on a simple 6-point scale with descriptors at each level ranging from 0 (cannot engage in goal setting at any level) to 6 (excellent engagement, fully independent in goal monitoring and setting their own goals) which can be rated by the patient, family member or by the treating team. Preliminary validity of the Goal Engagement Scale has been shown in a study conducted by Turner-Stokes and colleagues [25]. In the current study, documented GES data was used to describe patient and family engagement in goal setting, whereby the treating team members rated the GES (patient and family) on admission and discharge during team meetings.

Data collection

Demographic and diagnostic information routinely captured in the clinical record was collected. This included age, ethnicity, years of education, occupation, rehabilitation length of stay, diagnosis and/or injury information, plus length of post-traumatic amnesia (PTA) and Glasgow Coma Scale (GCS) score where applicable. Rehabilitation goals, admission and discharge GAS ratings for each rehabilitation goal, overall GAS-light T-scores and GES ratings on admission and discharge were collected from clinical records.

Data analysis

GES scores, GAS T-scores and demographic data were tabulated and transferred into SPSS 28 [53]. Documented rehabilitation program goals for each participant were also tabulated using Microsoft Excel 2016 for categorisation into goal domains. Participant demographic and injury data were summarised using descriptive statistics (e.g., means, standard deviations and frequencies). To address the aim of describing and categorising program goals, each goal was coded using an inductive content analysis approach [54] and categorised using the ICF as a framework on two levels: by broader ICF component (either body functions, body structures, activities and participation, or environmental factors), and by the relevant ICF domain under each component. Two members of the research team independently open coded each goal and categorised each goal by ICF domain and component to avoid bias. Codes were compared between the two independent raters, discrepancies identified, discussed with and resolved by a 3^rd independent rater during team consensus meetings (ED, MH and AT). The inductive content coding of goals was used to summarise the nature of the goals in each ICF component. To describe goal attainment according to the ICF, the goals were grouped into ICF domains and their respective components. The level of goal attainment was then summarised and tabulated by the number and percentage of goals below, at or above the expected level of achievement, by domain and component. The Kruskal Wallis test was considered to explore the differences in goal attainment between the various ICF components and domains as applied by Borgen et al. [35], however, the assumption of independent observations was not met as the same participants had goals across multiple components and domains [55].

To address the aim of evaluating change in goal attainment at program end, the differences between GAS T-scores on admission and discharge were determined using Wilcoxon signed ranks tests. This test was also applied to explore patient and family engagement between admission and discharge. The non-parametric Wilcoxon signed ranks test was chosen due to the ordinal nature of the GAS and GES data. Descriptive statistics (median and interquartile range) were used to describe GAS T-scores and patient and family GES scores consistent with non-parametric statistical approaches. To explore the relationship between family and patient goal engagement and goal attainment, Spearman’s (rho) correlations were used as a non-parametric correlational test for this ordinal data. The protocol may be shared on request by contacting the authors, and all requests for access to raw data would be contingent upon further approval by the relevant human research ethics committee.

Results

Demographic and diagnostic characteristics have been tabulated in Table 1. Injury severity, according to the GCS and/or PTA duration for those with TBI diagnosis is not reported as this data was not consistently routinely documented in the clinical record.

Table 1. Participant demographic and diagnostic characteristics.

	n (%)
Gender, male	13 (44.8)
Age, M (SD)	41.3 (12.1)
Years of education, M (SD), (missing n = 8)	12.1 (2.4)
Pre-injury occupation (missing n = 1)	28 (96.6)
Professional	5 (17.2)
Technician and trade worker	6 (20.7)
Community and personal service worker	2 (6.9)
Labourer or Sales worker	3 (10.3)
Student	2 (6.9)
Primary caregiver	2 (6.9)
Unemployed	8 (27.6)
Ethnicity (missing n = 2)	27 (93.1)
Oceanian	22 (75.9)
Northwest European, South-east Asian, North-east Asian and People of the Americas	5 (17.2)
Diagnosis
TBI	11 (37.9)
Mechanism of Injury
Motor vehicle accident	5 (17.2)
Motor bike accident	2 (6.9)
Fall, sporting injury or unknown cause	4 (13.8)
Stroke	8 (27.6)
Type of stroke
Ischemic	2 (6.9)
Hemorrhagic	3 (10.3)
Subarachnoid hemorrhage	2 (6.9)
Unknown	1 (3.4)
Hypoxic brain injury	2 (6.9)
Vascular Malformation	4 (13.8)
Encephalitis	1 (3.4)
Meningioma	1 (3.4)
Aneurysm	2 (6.9)
Time since injury/illness in days, M (SD)	139 (62.6)
Length of extended rehabilitation stay in days, M (SD)	213.6 (75)

There were 320 rehabilitation goals documented across the 29 participants with each participant having, on average, 11 goals documented (between 5–17 goals per participant) as shown in Table 2. The vast majority of goals were Activity and Participation ICF component level goals (94%), with most of these goals relating to the ICF domains of self-care (24%), mobility (18%), domestic life (14%), communications (13%) and community, social and civic life (12%). The nature of the goals relative to the ICF components and domains are described in Table 2 along with example goal statements.

Table 2. Level of goal attainment in goal areas categorised according to ICF components and domains.

ICF component and		Frequency goals	Achieved below expected level	Achieved expected level	Achieved above expected level
domains	Nature of goals (example goal areas)	n (%)	n (%)	n (%)	n (%)
ICF Activities and Participation		302 (94.4)	56 (18.5)	173 (57.3)	73 (24.2)
Self-care	Showering, dressing, toileting, grooming, eating, exercise. (I will be able to put on shoes and socks by myself using adaptive aids/techniques and Velcro shoes)	76 (23.8)	9 (11.8)	48 (63.2)	19 (25)
Mobility	Walking, standing, completing transfers, ambulating in a wheelchair. (I will be able to transfer on and off the toilet with assistance)	59 (18.4)	18 (30.5)	24 (40.7)	17 (28.8)
Domestic Life	Meal preparation, laundry, cooking, cleaning, gardening, shopping and money handling (I will be able to dust and tidy up (including making my bed) from a seated position with aids as needed)	44 (13.8)	5 (11.4)	30 (68.2)	9 (20.5)
Communications	Reading, understanding and writing information, conversing with family and friends, discussing or explaining the impact of ABI with others (To be able to read and follow my daily schedule so that I know what my family and I have on each day)	42 (13.1)	6 (14.3)	23 (54.7)	13 (31)
Community, social and civic life	Participating in sporting or social activities (e.g., men’s shed, church, sailing) or hobbies (e.g., golf, fishing, creative pursuits) (I will be able to go fishing seated in my wheelchair with the help of one person)	39 (12.2)	7 (18)	22 (56.4)	10 (25.6)
Major life areas	Living at home independently, parenting and pre-morbid work activities, managing finances (I will be able to complete a basic construction task with minimal assistance from helper)	13 (4.1)	2 (15.4)	11 (84.6)	0 (0)
Learning and applying knowledge	Journaling, using strategies to improve sleep and coping, decision making, organising activities (I will be able to use strategies to assist with my overnight sleep, e.g., altering the time I go to bed or reading in a different chair, most nights of the week)	12 (3.8)	6 (50)	6 (50)	0 (0)
General tasks and demands	Making and keeping appointments, planning and following a routine, adapting to life (I will establish a daily routine for home with my partner prior to discharge)	9 (2.8)	3 (33.3)	4 (44.5)	2 (22.2)
Interpersonal interactions and relationships	Spending time and connecting with family (children, partner etc.) at home or in the community (I will have a regular date night with my partner)	8 (2.5)	0	5 (62.5)	3 (37.5)
ICF Body Functions and Structures		17 (5.3)	2 (11.8)	10 (58.8)	5 (29.4)
Digestive, metabolic and endocrine system	Managing continence and swallowing (I will eat and drink enough and will be able to enjoy foods of my preference using safe swallowing strategies)	4 (1.3)	0 (0)	1 (25)	3 (75)
Genitourinary and reproductive functions	Maintaining continence, managing catheter (I will be continent in the daytime 80% of the time with aids and a regular routine)	8 (2.5)	1 (12.5)	5 (62.5)	2 (25)
Mental Functions	Using strategies to regulate emotions, being aware of and communicating needs (I will be able to sustain attention to reading my novel for at least 30 min)	3 (0.9)	1 (33.3)	2 (66.7)	0 (0)
Neuromusculoskeletal and movement-related structures	Stabilising items on table using right arm (I will be able to use my right arm to stablise items on the table (e.g., hold a plate while I eat, hold my paper while I write)	1 (0.3)	0 (0)	1 (100)	0 (0)
Voice and speech functions	Practicing and use of strategies to improve speech (Improve clarity of my speech)	1 (0.3)	0 (0)	1 (100)	0 (0)
ICF Personal and Environmental Factors		1 (0.3)	0	0	1 (100)
Products and Technology	Having the home environment ready for discharge (I will have my home suitably prepared for when I discharge)	1 (100)	0 (0)	0 (0)	1 (100)
Total		320	58 (18.1)	183 (57.2)	79 (24.7)

Across most of the goal domains, goal attainment for almost a quarter of all goals exceeded expectation, with approximately 80% of goals either achieved or exceeding the expected level of goal attainment. Interestingly, 50% of goals in the ICF subdomains of learning and applying knowledge fell below expectation; along with mobility (31%), general tasks and demands (33%) and mental functions (33%). According to the GES, only one patient did not have family involved in the goal setting process, with the remaining 28 patients having family members engaged to varying degrees. The median patient engagement rating was 3 (range = 0–5, IQR = 3) on admission and 3 – good engagement (range = 0–5, IQR = 3) on discharge and the median family engagement rating was 3 – good engagement (range = 0–5, IQR = 3) on admission and 2 – moderate engagement (range = 0–5, IQR = 4) on discharge (see Table 3).

Table 3. Change in patient and family goal engagement and goal attainment between admission and discharge.

	Admission	Discharge		Wilcoxon signed-ranks test
Parameter	Median (IQR)	Median (IQR)	Change	z-value	p-value
Goal Engagement (n=-28, missing = 1)
Patient	3 (1–4)	3 (1–4.75)	Increase n = 10	−0.27	0.79
			Decreased n = 8
			Unchanged n = 10
Family	3 (2–5)	2 (1–5)	Increased n = 3	−1.50	0.13
			Decreased n = 7
			Unchanged n = 18
GAS T-score	24.48 (21.2–28.2)	52.93 (46.5–58.3)	27.54 (21.7–32.5)	−4.7	<0.01*

* Significant change from pre to post based on Wilcoxon signed-rank tests, p < 0.05.

There were no statistically significant changes in overall patient and family GES scores between admission and discharge according to Wilcoxon signed-rank tests (patient: z=-0.27, p = 0.79; family: z=- 1.5, p = 0.13). Overall, the median GAS T-score on admission was 24.5 (range = 18.76–34.26, IQR = 7.0) which increased to 52.9 (range = 37.10–74.80, IQR = 11.81) on discharge, indicating, that on average, participants slightly exceeded their expected level of attainment for their rehabilitation goals by discharge. There was statistically significant improvement in overall GAS T-scores between admission and discharge according to the Wilcoxon signed-rank test (z = 4.7, p < 0.01).

With regards to the relationship between level of goal engagement and goal attainment, there was a statistically non-significant, weak to moderate positive relationship between patient GES scores and GAS T-scores on admission and discharge (see Table 4). Similarly, there was a negligible to weak negative and non-significant relationship between family GES scores and GAS T-scores on admission and discharge. There were moderately significant relationships between engagement on admission and discharge for both patients (r = 0.6, p = 0.01) and family (r = 0.8, p = 0.01).

Table 4. Relationships between patient and family goal engagement at admission and discharge and goal attainment.

		Patient engagement (GES) (n = 28, missing = 1)		Family engagement (GES) (n = 28, missing = 1)
		Admission	Discharge	Admission	Discharge
Patient GES on discharge	Coefficient	0.57**
	Significance	0.01
Family GES on admission	Coefficient	0.10	0.02
	Significance	0.61	0.91
Family GES on discharge	Coefficient	0.19	0.23	0.78**
	Significance	0.33	0.23	0.01
Goal Attainment (GAS T-score)	Coefficient	0.08	0.32	−0.2	−0.26
	Significance	0.70	0.10	0.31	0.19

Note: **Correlation is significant at the ≤ 0.01 level (2-tailed).

Discussion

This study aimed to illustrate the nature of goals set by individuals with severe ABI participating in an inpatient, interdisciplinary, ER program underpinned by role-based goal setting, to report on goal attainment, and to explore the relationship between patient and family engagement in goal setting and goal attainment. The findings indicated that the vast majority of goals (almost 95%) elicited by the role-based goal setting approach fell under the Activities and Participation component of the ICF. The findings indicate high levels of goal attainment between admission and discharge with 81% of patients achieving or exceeding expected goal outcomes. Our second hypothesis was not supported as no significant relationship between goal engagement and goal attainment was found. There was however a positive association between patient and family engagement in goal setting at admission and at discharge.

Previous research has explored the use of the ICF framework to describe the nature of goals for individuals with ABI in various settings [35, 37, 38]. Of note, Kelly et al. [37] found that 82% of 860 goals collaboratively set with 122 children with ABI and their family members in a residential rehabilitation unit fell under the Activities and Participation component. Interestingly, when McCarron et al. [38] mapped 326 goals from 98 young persons in a specialist community neuropsychological rehabilitation service onto the ICF Child and Youth Version, 52% of goals fell under Activities and Participation (n = 232), with 94% of participants having at least one activity and participation-focused goal. The proportion of activity and participation level goals in these two paediatric ABI studies was lower than the proportion in this current study. One possible explanation could be that adult and paediatric ABI populations have different needs and considerations in their rehabilitation journey. Furthermore, the person-centred goal setting approach used in the current study was underpinned by a philosophy of identifying key patient roles and establishing goals to achieve participation in those meaningful roles [39, 40], which may explain the elicitation of a higher proportion of activity and participation-focused goals compared to other studies.

While the benefits of person-centred goal setting have been established in the literature [41, 56, 57], clinicians often perceive the practice to be time-consuming which can be a barrier to implementation in practice [15]. A solution proposed by Yip et al. [58] was the development of goal menus that capture the goals typically set by patients in a specific population. In the field of upper limb spasticity management, Ashford et al. [59] completed a multi-centre analysis of goal areas in upper limb spasticity internationally. They mapped a total of 1623 goals from five published studies onto the ICF in order to identify six main goal areas for managing upper limb spasticity in clinical practice worldwide. Similarly, in the field of PDOC, Turner-Stokes et al. [26] have developed a structured goal menu through analysis of goals, finding 18 categories relevant to this clinical population. Whilst goal menus may guide goal setting, they should be used cautiously so as not to detract from person-centred goal setting where the patient and family can be engaged and involved in identifying and deciding on goals that are individualised, important and relevant to them. The current study has laid some foundations for potential future work in the context of inpatient ER for individuals with ABI by reporting on goals categorised according the ICF components and associated domains. The identification of meaningful activity and participation goals, which were the majority, was likely facilitated by focusing goal setting on roles that patients hoped to fulfil upon their return to community [40]. The domains of self-care, mobility, domestic life, communication and community life were highlighted as priority goal areas for patients with ABI in this ER setting.

Interestingly, the current study found that a large number of rehabilitation goals were set across the relatively small number of participants. The number of goals per participant is notably higher (average of 11) compared to research in other rehabilitation settings and populations [26, 35, 37, 38, 52]. Furthermore, a previous study by Doig et al. [24] exploring perspectives of people with TBI and their family members who received a community-based, goal-directed occupational therapy program found that there was a preference to work on one goal at a time over addressing multiple goals concurrently. The larger number of goals per participant in this ER setting may be attributed to several factors, including the utilisation of the role-based goal setting approach and the extended duration of stay in the ER setting. This extended time frame may allow for addressing a wider range of goals over a lengthier period compared to traditional inpatient rehabilitation units. [18, 19]. Moreover, the role-based goal setting approach focused on increasing participation across roles identified as important to the person, and the process facilitated goal setting discussions with patients and families about multiple role domains. This may have led to goals or multiple goals being set related to each of the respective roles.

In another cohort study looking at ABI rehabilitation outcomes within an ER setting in Australia [60], clinically significant functional gains were identified, with nearly half of the patients achieving or exceeding their goals on discharge. This current study has demonstrated similar findings related to goal attainment for patients with ABI. Borgen et al. [35] recently used a similar methodology to explore an individually tailored, home-based intervention for 59 patients with TBI, reporting high levels of goal attainment, with 93% of participants attaining their goals by the end of the intervention. While goal attainment in this current study was lower (81%), one possible explanation is that the familiarity of the home environment in the home-based rehabilitation context may have facilitated patients in achieving context-specific, role-based goals, particularly activity and participation goals. It is possible that working towards the attainment of a variety of activity and participation goals may be restricted in an inpatient setting when compared to a community setting as the ability to carry out daily activities is closely tied to one’s environment and social connections [61]. With the myriad of biopsychosocial changes experienced by people with ABI, the familiarity and consistency of the home environment is likely to be a highly influential factor potentially supporting the attainment of activity and participation goals [62].

Studies have also found goal attainment in paediatric ABI populations [37] to be lower (70%) than in the current study. One possible explanation is that, comparatively a greater proportion of goals for children with ABI were related to mobility and cognition [37, 38], whereas in the current study, proportionally lower levels of goal attainment were observed for mobility and learning and applying knowledge compared to other ICF domains. Kelly et al. [37] also found goal attainment in those domains were lower compared to the activity-based and social participation-focused goals. This is congruent with existing knowledge about the impacts of ABI on physical and cognitive functioning [63, 64]. Higher goal attainment in activity and participation-focused goals could also be explained by the rehabilitation approach. For example, employing compensatory approaches such as the use of supports or learning and applying strategies or modified approaches to enable participation in activities rather than a focus on remediation. After ABI, people commonly experience a process of adapting to their new reality [65], choosing to focus on the occupations or goals that bring hope and meaning in their new reality [66].

This study also explored the relationship between patient and family engagement in goal setting and goal attainment, finding no signification association between these factors. Previous research has noted that client involvement in goal setting supports person-centred rehabilitation practice [56], and a study of patient engagement in goal setting in an inpatient ABI rehabilitation sample (n = 83) found a strong positive correlation between goal attainment and functional gain [25]. Although there was not a significant positive relationship shown between engagement in goal setting and goal attainment in the current study, the engagement levels of patients and family members in the goal setting process was, on average, high to begin with and was maintained on discharge. The person-centred, role-based goal setting approach could have facilitated patients and family members to remain engaged throughout their stay in the unit.

Strengths and limitations

A limitation of this study was that it took place at a single inpatient ER unit with a small sample of patients. Thus, the findings may have limited generalisability as they may not be representative of the wider population of people with severe ABI. The GES is a single-item rating scale and its reliability and validity as a measure of engagement is not widely established. A further limitation is related to the use of routinely reported clinical data recorded in clinical records, which resulted in some missing data. Whilst assessment data collected and recording routinely by multiple clinicians may pose limitations on validity, this was mitigated to some extent by embedded training for staff in the assessment and scoring of the GAS (scaling and determining GAS levels). Additionally, resources and structured processes for documenting and scoring the GAS were established to facilitate consistency. Furthermore, GAS goals and GES ratings were determined by consensus during rehabilitation team meetings rather than by individual clinicians. Future research should explore larger samples, or where possible, multi-site studies or pooled data across multiple sites to achieve larger datasets and sample sizes. Despite its limitations, a strength of this study is that it is the first to describe and classify the rehabilitation goals and goal attainment for a cohort of people with severe ABI in an extended, inpatient rehabilitation unit.

Future directions

This paper adds to the existing body of literature by articulating the nature of goals set by patients with severe ABI which may potentially guide goal setting and rehabilitation planning in these settings. Further research is needed in larger and more diverse samples in this population. While 320 goals were elicited, only 29 participants were recruited by this study. Considering the importance of patient and significant other’s engagement in goal setting [14, 23, 29], there is a need for research that delves into the nature of this engagement and enhances the reliability and validity of tools used to measure it. The conflicting findings of the current study compared to existing research on the relationship between goal engagement and goal attainment indicate the necessity for further investigation in this area. This paper was part of a larger overarching project evaluating and exploring this role-based goal setting approach in an ER unit in Australia. Associated research has explored clinicians’ perspectives on this process [41], however, future work should explore the patient and family member’s experiences and perspectives to inform service delivery models.

Conclusion

This study offers insights into the goals elicited, goal attainment and engagement of people with severe ABI participating in an inpatient ER program underpinned by interdisciplinary, role-based goal setting. The majority of patients attained their predominantly activity and participation-focused goals by discharge. Further investigation is required to explore the relationship between goal engagement and goal attainment and associated patient and family members perspectives.

Acknowledgements

The authors would like to thank the patients involved in the study. The authors would also like to thank the staff at the extended rehabilitation unit for their contributions to this research study.

Disclosure statement

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Additional information

Funding

This work was supported by a Hopkins Centre Interdisciplinary Translation Research Grant (2017); the funding source had no involvement in study design, data collection, data analysis or in writing of the findings or decision to publish the findings.