Turner Et Al 2009 - Brain Injury

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Profiling early outcomes during the transition from hospital to home after brain injury Benjamin Turner a; Jennifer Fleming ab; Petrea Cornwell ab; Terry Haines ab; Tamara Ownsworth c a School of Health and Rehabilitation Sciences, the University of Queensland, St Lucia, Queensland, Australia b Princess Alexandra Hospital, Woolloongabba, Queensland, Australia c School of Psychology, Griffith University, Nathan, Queensland, Australia Online Publication Date: 01 January 2009

To cite this Article Turner, Benjamin, Fleming, Jennifer, Cornwell, Petrea, Haines, Terry and Ownsworth, Tamara(2009)'Profiling early

outcomes during the transition from hospital to home after brain injury',Brain Injury,23:1,51 — 60 To link to this Article: DOI: 10.1080/02699050802635257 URL: http://dx.doi.org/10.1080/02699050802635257

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Brain Injury, January 2009; 23(1): 51–60

Profiling early outcomes during the transition from hospital to home after brain injury

BENJAMIN TURNER1, JENNIFER FLEMING1,2, PETREA CORNWELL1,2, TERRY HAINES1,2, & TAMARA OWNSWORTH3 1

School of Health and Rehabilitation Sciences, the University of Queensland, St Lucia, Queensland, Australia, Princess Alexandra Hospital, Woolloongabba, Queensland, Australia, and 3School of Psychology, Griffith University, Nathan, Queensland, Australia

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(Received 28 February 2008; revised 19 September 2008; accepted 13 November 2008)

Abstract Primary objective: To profile early outcomes during the transition from hospital to home for individuals with acquired brain injury (ABI) and their family caregivers. Research design: Prospective longitudinal study with data collected at three time points: pre-discharge and 1- and 3-months post-discharge. Methods and procedures: Participants included 26 individuals with ABI and 26 family caregivers, who were assessed on measures of global functioning, psychosocial reintegration, health-related quality-of-life and emotional well-being. Changes in outcomes over time and group comparisons were examined using repeated measures ANOVAs with relevant post-hoc analyses. Results: Participants typically demonstrated improved global functioning and psychosocial reintegration during the transition period, with closer alignment of perspectives (i.e. comparisons between self-ratings of participants with ABI and ratings of family caregivers) at 3-months post-discharge on the occupational activities and living skills domains. Additionally, levels of depression and stress reported by participants with ABI were observed to increase over time. Conclusions: Collectively, the results highlight the critical nature of the transition phase for psychosocial reintegration and emotional adjustment and support the need for holistic approaches to transition-specific interventions. Keywords: Acquired brain injury, transition

Introduction Successful community reintegration is commonly identified as a primary goal of rehabilitation programmes for individuals with acquired brain injury (ABI) [1–3]. However, despite the emphasis placed upon community reintegration by rehabilitation service providers, many individuals with ABI continue to experience difficulties in managing the impact of injury-related deficits and the loss of meaningful life roles during the transition from hospital to home [4]. Transitions, which are defined in the literature as changes from one life phase,

condition or status to another [5], occur throughout all aspects of the rehabilitation continuum after ABI. While each transition is of importance, the transition from hospital to home marks a critical point in an individual’s recovery as it heralds the commencement of the community reintegration process [4, 6, 7]. Given this, it is important to examine early outcomes for individuals with ABI during the transition from hospital to home. In a recent literature review, Turner et al. [8] identified that the transition phase is typically perceived as an exciting yet difficult time for

Correspondence: Benjamin Turner, PhD Candidate, Division of Occupational Therapy, School of Health and Rehabilitation Sciences, Therapies Building (84a), The University of Queensland, St Lucia, 4072, Queensland, Australia. Tel: þ61 7 3346 7469. Fax: þ61 7 3365 1622. E-mail: [email protected] ISSN 0269–9052 print/ISSN 1362–301X online ß 2009 Informa Healthcare Ltd. DOI: 10.1080/02699050802635257

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individuals with ABI and their family caregivers. The review highlighted personal (e.g. level of disability), family (e.g. availability to provide support) and professional factors (e.g. access to post-discharge therapy services including follow-up support programmes and transitional living programmes) that impact upon the transition process. It was recommended that further research examine transition outcomes and explore individuals’ lived experiences in order to conceptualize the transition phase within the rehabilitation continuum and facilitate both the evaluation of common intervention strategies and the development of innovative/tailored intervention approaches [8]. Previous research has also examined a variety of post-discharge outcome domains for individuals with ABI and their family caregivers, such as global functioning (e.g. abilities/impairments), psychosocial functioning, health-related quality-of-life, self-awareness and emotional well-being outcomes [2, 3, 9–11]. In general, there is consensus in the literature that many individuals experience difficulties within each of these domains of functioning after discharge from hospital. For example, LippertGruner et al. [11] investigated global functioning outcomes 1–2 years after severe traumatic brain injury (TBI) (n ¼ 51) and found that although 80% of participants reported being independent of care 2-years post-injury, more than half reported ongoing sensorimotor, behavioural, speech, visual motor and/ or auditory disturbances. Psychosocial functioning has been discussed extensively in the literature as an important outcome variable to consider when evaluating the success of the rehabilitation process after ABI [2, 10, 12, 13]. For example, in a retrospective cohort study of individuals with TBI (n ¼ 7612), McCarthy et al. [2] found that 29% of participants reported poor psychosocial health 1-year post-injury (e.g. unemployment, social isolation, etc.). In a separate study, Klonoff et al. [10] found that 14% of individuals with ABI (n ¼ 93) were not involved in competitive work 1–7 years post-discharge from a holistic milieuoriented neurorehabilitation programme, with 19% not being in a stable relationship and 27% not driving at follow-up. Klonoff et al. [10] concluded that clinicians need to ensure that individuals’ psychosocial health needs are addressed during the post-acute phase in order to facilitate successful community reintegration. In a qualitative study of the transition from hospital to home involving 13 individuals with ABI and 11 family caregivers, Turner et al. [4] noted that the transition phase was characterized by the development of greater self-awareness of deficits. The study demonstrated that many participants reported feeling ‘shocked’ upon returning home

and finding that their expectations of life returning to normal were not met during the first year postdischarge. In contrast, family caregivers tended to have more realistic expectations [4]. Other studies have highlighted these different perspectives through demonstrating discrepancies in ratings between individuals with ABI and their family caregivers on rehabilitation outcome measures [14–16]. The literature further highlights that there is an association between greater self-awareness and favourable rehabilitation outcomes [16]. Despite this, improved self-awareness of deficits has also been shown to be associated with higher levels of emotional distress [4, 14, 17]. It appears that emotional distress increases as individuals develop greater awareness of the impact of their disability over time through participation in meaningful life roles. Managing emotional distress, including depression, anxiety and stress, has been shown to be a major challenge for individuals with ABI and their family caregivers, with reported long-term implications [9, 18–21]. While the literature provides valuable information concerning community reintegration outcomes after discharge from hospital for individuals with ABI, research to date typically explores outcomes beyond 6-months post-discharge [2, 3, 9–11, 21] and therefore does not capture individuals’ initial functioning and adjustment during the first few weeks and months at home. Furthermore, studies adopting a retrospective approach to data collection [2–4] are potentially compromised by participants’ abilities to recall and reflect upon their transition experiences. Given the importance of the transition phase in the rehabilitation continuum and in view of the limitations of the current literature, further research is warranted to examine outcomes for individuals with ABI during the initial transition phase from hospital to home. The primary aim of this study was to profile early outcomes of individuals with ABI within the areas of global functioning, psychosocial reintegration, health-related quality-of-life and emotional wellbeing during the initial transition phase from hospital to home. The main objectives of the study were: (1) to profile and compare perceived changes in global functioning and psychosocial functioning during the transition phase from the perspectives of individuals with ABI and their family caregivers; (2) to profile changes in health-related quality-of-life of individuals with ABI during transition; and (3) to profile changes in emotional well-being of individuals with ABI during the transition phase. It was predicted that ratings of global functioning and psychosocial reintegration would differ between individuals with ABI and their family caregivers and would change over time. It was also predicted that levels of emotional well-being and health-related

Profiling early outcomes during the transition from hospital to home after brain injury quality-of-life would change across the transition period.

Method Design This study employed a prospective longitudinal design with data collected from participants with ABI and their family caregivers at the following time points during the transition phase: pre-discharge and 1- and 3-months post-discharge.

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Participants Participants were recruited from an inpatient ABI rehabilitation unit at a major metropolitan hospital on a consecutive discharge basis over a recruitment period of 5 months. Participants were screened by a healthcare professional according to the following inclusion criteria: (1) diagnosis of ABI as documented in a medical report; (2) expected to return home upon discharge from inpatient rehabilitation; (3) aged 16 years or older; (4) adequate English

communication skills to complete a series of questionnaires; and (5) capacity to provide informed consent. Individuals were excluded if: (1) they had a pre-morbid neurological condition or psychiatric disorder; or (2) were expected to be discharged to a destination other than a home environment such as a residential care facility. During the period of recruitment, a total of 47 individuals were discharged from the rehabilitation unit. Of these, 10 individuals self-discharged against medical advice, six did not provide informed consent and five did not meet the inclusion criteria of the study. Individuals with ABI who provided informed consent were asked to identify a suitable family member to participate in the study. Nominated family caregivers were then contacted by a member of the research team, who explained the details of the study and sought informed consent from caregivers. In total, participants included 26 individuals with ABI and 26 family caregivers. Family caregivers included 13 spouses/partners, 11 parents and two siblings. A summary of key demographic and injury-related information about participants is provided in Table I.

Table I. Demographic and injury-related information of participants with ABI and their family caregivers. Participants with ABI F (%) or M (SD), Range

Family caregivers F (%) or M (SD), Range

18 (69.2) 8 (30.8) 35.89 (14.90), 17–63

9 (34.6) 17 (65.4) 46.15 (10.63), 24–61

Relationship status (at time of first assessment) In a relationship (married/defacto) Not in a relationship

19 (73.1) 7 (26.9)

21 (80.8) 5 (19.2)

Pre-injury occupational status Employed Unemployed Home duties Student

23 (88.5) – 1 (3.8) 2 (7.7)

23 (88.5) 2 (7.7) 1 (3.8) –

10 (38.5)

7 (26.9)

7 (26.9) 7 (26.9) 2 (7.7)

6 (23.1) 4 (15.4) 9 (34.6)

21 (80.8) 4 (15.4) 1 (3.8) 85.85 (76.85), 22–318 141.31 (150.29), 35–776 8.23 (4.34), 3–15 41.78 (27.40), 12–107 4.5 (1.61), 2–8 114.47 (11.32), 77–125

– – – – – – – – –

Gender Male Female Age (years)

Level of education Grade 10 or below (i.e. middle school or 10 years of formal education) Completed high school TAFE/trade qualifications University–undergraduate Cause of injury Traumatic Brain Injury Aneurysm/Stroke Encephalopathy Length of stay in inpatient rehabilitation (days) Length of stay in hospital (days) Initial GCS score (n ¼ 22) Length PTA (days) (n ¼ 18) DRS (discharge) FIMTM total score (discharge)

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Length of stay in hospital refers to total length of stay including intensive care, acute care and inpatient rehabilitation. DRS ¼ Disability Rating Scale [36]. FIM ¼ Functional Independence Measure [36].

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Measures

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Participants were assessed on four measures chosen to assess outcomes within the areas of global functioning, psychosocial reintegration, healthrelated quality-of-life and emotional well-being by self-report and/or significant other report. Mayo-Portland Adaptability Inventory-4 (MPAI-4). The MPAI-4 [22] is a self-report questionnaire that provides a measure of an individual’s global functioning within the following three domains: abilities; adjustment; and participation. The questionnaire consists of 29-items which are rated on a 5-point scale from 0, which indicates no problems in functioning, to 4, which indicates a severe problem that interferes with activities more than 75% of the time. The MPAI-4 items explore a range of physical, cognitive, emotional, behavioural and social problems that individuals may encounter after ABI. Lower scores indicate improved functioning within the respective domains. Sound psychometric properties have been recorded for the MPAI-4, including satisfactory internal consistency by Rasch analysis (person reliability ¼ 0.88, item reliability ¼ 0.99) and traditional psychometric indicators (Cronbach’s alpha ¼ 0.89) [22]. Sydney Psychosocial Reintegration Scale (SPRS). The SPRS [23] is a 12-item questionnaire that compares an individual’s current level of psychosocial reintegration with pre-morbid levels within the following three domains of everyday living: occupational activities; interpersonal relationships; and independent living skills. The questionnaire is self-administered and can be completed by individuals with ABI and their family caregivers. Each item is rated on a 7-point scale from 0, which indicates an extreme change between current and pre-morbid functioning, to 6 which indicates no change in functioning. Higher scores indicate greater levels of psychosocial reintegration. The SPRS has recorded strong psychometric properties with high internal consistency (Cronbach’s alpha ¼ 0.90) and inter-rater reliability (ri ¼ 0.95) [23]. EQ-5D. The EQ-5D [24] is a standardized selfreport questionnaire that measures health-related quality-of-life. Participants with ABI in this study completed the visual analogue scale (VAS) component of the EQ-5D. The VAS asks participants to rate their health-related quality-of-life on a scale of 0–100, where 0 indicates the individuals’ worst imaginable health-state and 100 indicates the individuals’ best imaginable health-state. The EQ-5D is a widely used health-related quality-of-life measure

that has sound psychometric properties including significant correlations with other head injury outcomes measures such as the Glasgow Outcome Score Extended (Spearman’s rho ¼ 0.43) [24]. Depression, Anxiety and Stress Scales (DASS). The DASS [25] is a 42-item self-report instrument that was selected for use in this study as it provides a measure of the three negative emotional states of depression, anxiety and stress. Furthermore, the respective domains of the DASS are supported by the tripartite model of depression and anxiety; and the tool has relatively few somatic and cognitive items that might overlap with the sequelae of ABI [25, 26]. Each of the three domains consists of 14 items that are rated on a 4-point scale which reflects the degree to which items applied to participants during the week prior to completion of the questionnaire. A score of 0 indicates that the statement did not apply to the participant at all, whereas a score of 3 indicates that the statement applied very much or most of the time. Scores for each of the domains of the DASS can be categorized as normal, mild, moderate, severe and extremely severe [26]. Sound psychometric properties have been reported for the DASS with high internal consistency (Cronbach’s alphas of 0.97, 0.92 and 0.95 for the depression, anxiety and stress domains, respectively) and concurrent validity [25]. Procedure The ethics committees of the participant recruitment site and a university approved the study. After providing informed consent, participants completed the assessment measures at specific time intervals throughout the transition phase. Both groups of participants (i.e. individuals with ABI and their family caregivers) completed the SPRS and the MPAI-4 at the pre-discharge and 3-month postdischarge assessments. Family caregivers rated both of these measures according to their perspectives of how well the participant with ABI was functioning at the time of the assessment. Additionally, participants with ABI completed the EQ-5D and the DASS at the pre-discharge and the 1- and 3-month postdischarge assessments. Proxy caregiver ratings were not obtained for the EQ-5D or the DASS due to the subjective nature of the constructs assessed by these measures. The initial pre-discharge assessments were conducted at the site of participant recruitment during the week prior to the individuals’ discharge from hospital. Post-discharge assessments were conducted either in person at the site of participant recruitment or in the participants home or via telephone contact for individuals living in regional and rural areas. Participants living in regional and

Profiling early outcomes during the transition from hospital to home after brain injury rural areas were mailed a copy of the assessment measures prior to the actual assessments being conducted via telephone.

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Data analysis The first objective of the study was investigated using 2  2 repeated measures ANOVAs to examine: (1) the main effect of time (pre-discharge vs. 3-month assessment); (2) the main effect of perspective (participants with ABI vs. family caregivers); and (3) interaction effects between time and perspective on the various domains of the SPRS and MPAI-4 [27]. Post-hoc paired t-tests were conducted to examine specific changes in scores over time and between the perspectives of participants with ABI and their family caregivers when significant interaction effects were observed [27]. Objectives two and three of the study were investigated using one-way repeated measures ANOVAs to examine changes over time in participant VAS scores on the EQ-5D and for each of the domains of the DASS. Post-hoc paired t-tests were conducted to examine specific changes over time for each of the three assessed time points. Huynh-Feldt corrected p-values are reported for all repeated measures ANOVAs to control for violations of sphericity [28].

Results Global functioning Mean MPAI-4 domain scores for participants with ABI and as perceived by their family caregivers at each of the assessed time points are displayed in Figure 1. A series of 2  2 repeated measures ANOVAs found a significant main effect of time for the participation domain (df ¼ 1, 25; F ¼ 5.52; p ¼ 0.027), indicating improved functioning within this domain over time (i.e. reporting of fewer problems over time). Furthermore, significant main effects of perspectives between participants with ABI and their family caregivers were identified on all three domains (df ¼ 1, 25; F  13.26; p  0.001), with participants with ABI reporting fewer problems than family caregivers at both assessment points. Additionally, a significant interaction effect was found for the abilities domain (df ¼ 1, 25; F ¼ 6.18; p ¼ 0.019). Post-hoc paired t-tests confirmed significant differences between the ratings of participants with ABI and their family caregivers on the abilities domain at the pre-discharge and the 3-month post-discharge assessments (df ¼ 25, t  3.02, p  0.006), with participants reporting fewer problems than family caregivers at each of the assessed time points. While no statistically significant difference in the scores of participants with ABI was

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observed over time for the abilities domain, a paired t-test highlighted a significant improvement in scores (i.e. reporting of fewer problems) over time for family caregivers on this domain (df ¼ 25, t ¼ 2.49, p ¼ 0.027). Psychosocial reintegration Figure 2 displays mean SPRS domain scores of participants with ABI and as perceived by their family caregivers at each of the assessed time points. Results of the 2  2 repeated measures ANOVAs found significant main effects of time for the occupational activities (df ¼ 1, 25; F ¼ 25.11; p < 0.001) and living skills domains (df ¼ 1, 25; F ¼ 17.12; p < 0.001), indicating improved functioning within these domains over time. Significant main effects of perspective (i.e. comparisons between the perspectives of participants with ABI and their family caregivers) were found on all three domains (df ¼ 1, 25; F  8.98; p  0.001), with participants with ABI rating their own functioning higher than caregiver ratings on each of the domains at both time points. Additionally, significant interaction effects of time and perspective were found on the occupational activities (df ¼ 1, 25; F ¼ 6.18; p ¼ 0.019) and living skills domains (df ¼ 1, 25; F ¼ 10.29; p < 0.005). Post-hoc paired t-tests conducted for the occupational activities domain highlighted significant improvements in domain total scores over time for both participants with ABI (df ¼ 25, t ¼ 2.67, p ¼ 0.013) and their family caregivers (df ¼ 25, t ¼ 5.21, p < 0.001); along with a significant difference in the perspectives of participants with ABI and their caregivers at the pre-discharge assessment (df ¼ 25, t ¼ 4.16, p ¼ 0.003). However, no significant difference was found between the two groups at the 3-month post-discharge assessment. For the living skills domain, post-hoc paired t-tests revealed a non-significant trend for improved scores over time for participants with ABI (df ¼ 25, t ¼ 1.89, p ¼ 0.070) and significant improvement in scores over time for family caregivers (df ¼ 25, t ¼ 4.69, p < 0.001). Significant differences in the perspectives of participants with ABI and their family caregivers on the living skills domain were also found at the pre-discharge assessment (df ¼ 25, t ¼ 4.87, p < 0.001), but not at the 3-month postdischarge assessment. Health-related quality-of-life Participants’ mean scores on the VAS component of the EQ-5D increased slightly at the 1-month (M ¼ 76.39, SD ¼ 17.57, range ¼ 40–98) and 3-month (M ¼ 75.69, SD ¼ 15.24, range ¼ 50–98) post-discharge assessments compared with predischarge ratings (M ¼ 71.27, SD ¼ 18.85,

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Participants with ABI

Abilities

Family Caregivers Results displayed reflect mean scores plus and minus one standard deviation.

Occupational Activities

25 Participants with ABI

20 Family Caregivers

15

Results displayed reflect mean scores plus and minus one standard deviation.

10 5 0 25

15 10 5 0 25

Living skills

20

Participation

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Adjustment

Relationships

20

15 10 5 0

Pre-discharge

3-month

Figure 1. Global functioning outcomes of participants as recorded on the MPAI-4.

range ¼ 30–100). However, these differences in mean scores were not significant (df ¼ 2, 50, t ¼ 1.14, p ¼ 0.320). Emotional well-being Table II provides a summary of participant scores according to the clinical severity levels recorded for the DASS [18]. The table highlights that there was a trend for fewer individuals with ABI to be classified into the ‘normal’ category for the depression domain over time (pre-discharge ¼ 89%; 1-month ¼ 65%; and 3-month ¼ 50%). On the anxiety domain, the proportion of individuals with ABI classified as ‘normal’ was similar between the pre-discharge (81%) and the 1- and 3-month post-discharge assessments (69% and 73%, respectively). Fewer individuals were classified as ‘normal’ at the 1- and 3-month post-discharge assessments (77%) as compared to pre-discharge (96%) on the stress domain.

Pre-discharge

3-Month

Figure 2. Psychosocial reintegration outcomes of participants as recorded on the SPRS.

Figure 3 displays mean DASS scores for participants with ABI at each of the assessed time points. Results of the 1  3 repeated measures ANOVAs conducted to examine changes over time in DASS scores highlighted significant increases in scores over time for participants with ABI on the depression (df ¼ 2,50, F ¼ 5.51, p ¼ 0.007) and stress (df ¼ 2,50, F ¼ 4.67, p ¼ 0.015) domains. Post-hoc paired t-tests identified significant increases over time in depression and stress scores between the predischarge and 1-month post-discharge assessment (df ¼ 25, t  2.74, p < 0.01) and the pre-discharge and 3-month post-discharge assessment (df ¼ 25, t  2.89, p < 0.001), but not between the 1-month and 3-month post-discharge assessment.

Discussion This study aimed to profile early outcomes within the four areas of global functioning, psychosocial

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Table II. Emotional well-being outcomes of participants with ABI according to the DASS clinical severity levels.

Depression Normal (0–9) Mild (10–13) Moderate (14–20) Severe (21–27) Extremely severe (28þ) Anxiety Normal (0–7) Mild (8–9) Moderate (10–14) Severe (15–19) Extremely severe (20þ) Stress Normal (0–14) Mild (15–18) Moderate (19–25) Severe (26–33) Extremely severe (34þ)

Pre-Discharge F (%)

1-Month F (%)

23 (88.5) 2 (7.7) – – 1 (3.8)

17 (65.4) 3 (11.5) 4 (15.4) – 2 (7.7)

13 5 4 4

21 (80.8) 3 (11.5) 2 (7.7) – –

18 2 5 1

(69.2) (7.7) (19.2) (3.8) –

19 (73.1) 1 (3.8) 4 (15.4) – 2 (7.7)

25 (96.2) – – 1 (3.8) –

20 1 1 4

(76.9) (3.8) (3.8) (15.4) –

20 2 2 1 1

reintegration, health-related quality-of-life and emotional well-being during the initial transition phase from hospital to home for individuals with ABI. The results highlighted that, while participants demonstrated improved psychosocial reintegration during the 3-month transition period, global functioning outcomes and self-reported health-related quality-of-life remained relatively stable. Participants with ABI also reported experiencing increased levels of depression and stress after discharge. The first objective was to profile outcomes in global functioning as measured by the MPAI-4 and psychosocial functioning as measured by the SPRS. No significant improvements in either self-reported or caregiver-reported global functioning outcomes were observed during the 3-month transition period other than increased participation levels. Increased participation levels between pre- and post-discharge recordings are to be expected given the fundamental environmental differences of the hospital and home settings. Despite this, the findings related to global functioning suggests that injury-related deficits, including physical limitations and psychological adjustment issues, continue to impact upon functioning during the initial period following hospital discharge; a view that is consistent with previous outcome-based studies [3, 9, 11]. Previous research on long-term outcomes highlights that the recovery of global functioning (e.g. changes in motor and cognitive abilities) typically decreases during the later stages of recovery as an individual’s condition stabilizes [29]. However, the finding that reported participation levels increased during the transition period, despite the absence of gains in physical function and adjustment, indicates that, following discharge from hospital, individuals with ABI begin

3-Month F (%)

(50) (19.2) (15.4) (15.4) –

(76.9) (7.7) (7.7) (3.8) (3.8)

to reintegrate into their daily activities in the home and community with some measure of success. Level of psychosocial reintegration on the SPRS was also profiled for the first objective, demonstrating improvements within the areas of occupational activities and living skills over the transition period. This is to be expected as individuals resume participation in important daily tasks such as general household activities, work and leisure pursuits [14, 17]. Participation in these tasks is also likely to have been facilitated by a change in environment (i.e. hospital vs. home/community), with the home/ community environment providing greater opportunities for engagement in meaningful activities [30]. Despite these improvements, all participants reported experiencing some form of psychosocial dysfunction at the 3-month post-discharge assessment (e.g. unemployment, social isolation, relationship strain, etc.). While previous research has acknowledged poor long-term psychosocial outcomes for individuals with ABI [2, 4, 10], this study shows that these problems are present during the initial 3-months after discharge from hospital. The first objective of the study also involved comparing the perspectives of individuals with ABI and their family caregivers concerning global functioning and psychosocial reintegration outcomes. The results demonstrated closer alignment of perspectives between individuals with ABI and their family caregivers for the occupational activities and living skills domains of the SPRS at the 3-month post-discharge assessment compared to predischarge, but not for the interpersonal relationships domain of the SPRS or for any of the domains of the MPAI-4. Typically, participants with ABI rated themselves as having better global functioning and

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Depression

Participants with ABI

Stress

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Anxiety

Results displayed reflect mean scores plus and minus one standard deviation.

Pre-Discharge

1-month

3-month

Figure 3. Emotional wellbeing outcomes of participants as recoded on the DASS.

psychosocial reintegration outcomes than family caregiver ratings. If it is assumed that the family caregiver is providing a more objective or accurate rating of the individuals function [15, 16], these findings suggest that individuals with ABI experience ongoing self-awareness deficits during the transition phase. Previous research has highlighted that the transition phase is characterized by the development of greater self-awareness of deficits [4, 14, 31]. While the results of this study partly support this view, the findings also suggest that awareness develops within specific domains of functioning that appear to be more related to task performance, such as living skills or work activities, than specific performance components (e.g. physical or cognitive functioning). Task-specific awareness may have improved as individuals participated in daily tasks within the home or community environment and subsequently received feedback through either internal (e.g. thoughts and feelings) or external (e.g. observations

of others) mechanisms concerning the success of task completion [14, 31]. Despite this, it appears that participants with ABI experienced difficulties with generalizing this feedback to the underlying performance components required for task completion, as indicated by the lack of convergence of perspectives identified over time on the domains of the MPAI-4. The second objective was to profile changes in the health-related quality-of-life of individuals with ABI during transition. The results highlighted that participants did not display any significant change in self-reported health-related quality-of-life during the initial 3-month transition period. Although health-related quality-of-life has been identified in the literature as a difficult domain to both measure and interpret given the subjective nature of the construct [32, 33], the EQ-5D has been identified as a valid and reliable instrument when utilised in studies of individuals experiencing numerous health concerns [32–34]. Of importance to note in this study was that scores did not significantly improve between pre-discharge and post-discharge ratings for participants with ABI. While previous research has not specifically examined pre- and post-discharge health-related quality of life comparisons for the ABI population, the literature does suggest that improved health-related quality-of-life would be anticipated after discharge from hospital [4, 8]. It is possible that increased emotional distress (i.e. depression and stress) and greater awareness of activity limitations may have impacted participants’ perceptions of their health-related quality-of-life. The final objective of this study was to profile changes over time in emotional well-being outcomes for individuals with ABI during the transition phase. The results demonstrated increased levels of depression and stress for participants with ABI during the 3-month transition period. These findings support previous literature in highlighting the often poor emotional well-being outcomes experienced by individuals with ABI [4, 9, 18–20]. In particular, the proportion of participants reporting some level of depression had increased to half of the sample by 3-months post-discharge, with many (31%) experiencing depression at moderate or severe levels. Although elevated anxiety and stress levels were less prevalent, these problems were also reported by a proportion of participants. The high levels of emotional distress shown in this study indicate the need for screening during the transition period to identify individuals at risk and the provision of early psychological support for those not coping. While this study provides, to the authors’ knowledge, the first profile of early transition outcomes for individuals with ABI, some methodological limitations need to be acknowledged. First, the sample size

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Profiling early outcomes during the transition from hospital to home after brain injury may have limited the statistical power of the study. Despite this, in order to provide an accurate profile of early outcomes, robust repeated measures analyses were used along with the reporting of conservative p-values (i.e. Huynh-Feldt corrected p-values). These measures strengthen the validity of the findings and enable the results to be interpreted with statistical confidence. Second, this study only investigated the perspectives of individuals with ABI and their family caregivers during the first 3-months post-discharge. Incorporating the perspectives of a third party (e.g. healthcare professionals) and lengthening the period of follow-up to 6- and/or 12-months would have enabled a more comprehensive examination of transition outcomes. Third, while the chosen method of data collection for this study (i.e. completion of standardized questionnaires) enabled the profiling of outcomes, other techniques such as qualitative data collection methods may yield more in-depth information concerning early transition outcomes for individuals with ABI and their family caregivers. Several findings are pertinent to clinical practice, namely that the transition phase is one of re-engagement in the participation of home, community and productive activities; and is a time when greater self-awareness develops. Furthermore, this study highlights that the transition phase is a period of risk for depression and other indications of emotional distress. The results reinforce the need for holistic and intensive post-discharge rehabilitation services during the initial transition phase to facilitate further rehabilitation gains, assist individuals in managing the impact of injury-related deficits during daily task performance and to provide emotional and psychological support. Despite this, previous research has highlighted that many individuals with ABI experience difficulties in accessing post-discharge rehabilitative support during the transition phase, including delays between inpatient and outpatient/community-based services [4, 35]. Clinical interventions aimed at improving selfawareness prior to and initially following discharge from hospital may also assist in improving emotional and psychological outcomes during the transition phase for individuals with ABI and facilitate further rehabilitation gains [16]. Further transition-specific research is necessary to examine key outcomes including associations between various outcomes during transition (e.g. how does emotional well-being impact on psychosocial functioning?) and predictors/facilitators of specific outcomes (e.g. what factors are predictive of higher levels of emotional distress?). It is also recommended that future prospective studies incorporate a 6- and/or 12-month follow-up in order to examine the relative stability of outcomes over time.

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Additionally, qualitative research exploring key issues during transition may yield more in-depth information regarding the experiences of individuals and their caregivers, thus extending current conceptualizations of the transition phase.

Conclusion This study examined the initial phase of transition from the inpatient rehabilitation setting to home for a sample of individuals with ABI using a range of selfreported and caregiver-reported measures. Profiles of early outcomes showed improved psychosocial functioning over time along with greater alignment of perspectives for the occupational activities and living skills domains. Individuals with ABI also experienced increasing levels of depression and stress during the transition phase. While previous research has explored aspects of the transition process, to date few researchers have explored early outcomes during the initial 3-months post-discharge. The implications of findings for clinical practice relate to the need for holistic and intensive post-discharge rehabilitation services to support individuals’ needs in the areas of psychosocial, emotional and global functioning during the transition phase.

Acknowledgements The completion of this study was supported by an Australian Post-graduate Award held by the first author. The authors would also like to gratefully thank the staff in the Brain Injury Rehabilitation Unit at the Princess Alexandra Hospital. Our gratitude is also extended to the participants and their families. Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

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