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Sentinel Events During the Transition From Hospital to Home: A Longitudinal Study of Women With Traumatic Brain Injury

Published:February 05, 2015DOI:https://doi.org/10.1016/j.apmr.2014.07.428

      Highlights

      • Few studies consider the hospital-to-home transition process for women with traumatic brain injury.
      • We collected prospective data from 25 women at discharge and then 1, 3, and 6 months later.
      • We describe sentinel life events reported by women with traumatic brain injury during the transition phase.
      • Two events—reduced therapy access and return to activity—influenced community integration.
      • About one third of women had clinically significant depression, anxiety, or stress symptoms.
      • Examining life events (eg, returning to work) may facilitate successful transitions.

      Abstract

      Objective

      To describe the occurrence of sentinel events and their influence on community integration of women with traumatic brain injury (TBI) transitioning from hospital to home. Design: A longitudinal study was completed with data collected before and at 1, 3, and 6 months after hospital discharge.

      Setting

      Brain injury rehabilitation unit and acute neuroscience ward.

      Participants

      Women (N=25) with severe TBI (aged between 17 and 50 years; duration of posttraumatic amnesia ranged from 1 to 123d). Sixteen family caregivers also participated.

      Interventions

      Not applicable.

      Main Outcome Measures

      Community integration was measured using the Mayo-Portland Adaptability Inventory. Depression, anxiety, and stress were measured using the Depression Anxiety Stress Scale. The Sentinel Events Questionnaire was used to record life events that potentially influence the transition process.

      Results

      Most women (>16 at each time point) experienced mild to moderate impairments in psychosocial integration. A third of the sample reported symptoms of depression (n=8), anxiety (n=9), and stress (n=7) that exceeded clinical cutoff levels on at least 1 occasion. At 6 months, 3 women reported clinically significant depression and anxiety (12%) and 2 reported significant stress levels (8%). Positive sentinel events such as return to meaningful occupation were common (n=14). Negative sentinel events were also quite common. For example, reduced access to therapy, reported by 10 women, was associated with poorer participation levels.

      Conclusions

      These findings suggest that the presence of sentinel events influences the transition experiences of women with TBI in this sample. Rehabilitation should consider the occurrence and impact of sentinel events because this may facilitate successful transitions.

      Keywords

      List of abbreviations:

      ABI (acquired brain injury), DASS (Depression Anxiety Stress Scale), MPAI (Mayo-Portland Adaptability Inventory), PTA (posttraumatic amnesia), SEQ (Sentinel Events Questionnaire), TBI (traumatic brain injury)
      Transition from hospital to home is recognized as a critical phase of health care delivery
      • Kripalani S.
      • Jackson A.T.
      • Schnipper J.L.
      • Coleman E.A.
      Promoting effective transitions of care at hospital discharge: a review of key issues for hospitalists.
      and, in survivors of traumatic brain injury (TBI), represents a time of enormous adjustment during which they and their family members develop greater awareness of changes in their roles, relationships, and abilities.
      • Turner B.J.
      • Fleming J.M.
      • Ownsworth T.L.
      • Cornwell P.L.
      The transition from hospital to home for individuals with acquired brain injury: a literature review and research recommendations.
      Understanding what occurs during this time is fundamental to ensuring optimal community integration,
      • Kersel D.A.
      • Marsh N.V.
      • Havill J.H.
      • Sleigh J.W.
      Psychosocial functioning during the year following severe traumatic brain injury.
      • Tate R.L.
      • Simpson G.K.
      • Soo C.A.
      • Lane-Brown A.T.
      Participation after acquired brain injury: clinical and psychometric considerations of the Sydney Psychosocial Reintegration Scale (SPRS).
      yet there is a dearth of research addressing this time period for individuals with TBI. This study focuses on describing transition outcomes for women with TBI.
      Transitioning from a patient at a hospital to a person living in his/her own home involves a change in and/or resumption of preinjury roles and responsibilities, and the process is influenced by life events.
      Investigating the life events that occur during the transition from hospital to home for survivors of TBI may provide contextual information that explains outcomes including community integration.
      • Turner B.J.
      • Fleming J.M.
      • Ownsworth T.L.
      • Cornwell P.L.
      The transition from hospital to home for individuals with acquired brain injury: a literature review and research recommendations.
      It may also suggest avenues for rehabilitation that will ultimately improve community integration outcomes. To date, longitudinal studies of individuals with TBI have focused on measuring outcomes at specific points in time (typically from at least 1-y postinjury), but have not described the life events affecting the transition process.
      It is well known that during the first 6 months after TBI, individuals with moderate to severe TBI have lower levels of productivity as well as lower levels of home and social integration.
      • Corrigan J.D.
      • Smith-Knapp K.
      • Granger C.V.
      Outcomes in the first 5 years after traumatic brain injury.
      • Turner B.
      • Fleming J.
      • Cornwell P.
      • Haines T.
      • Ownsworth T.
      Profiling early outcomes during the transition from hospital to home after brain injury.
      • Willemse-van Son A.H.
      • Ribbers G.M.
      • Hop W.C.
      • Stam H.J.
      Community integration following moderate to severe traumatic brain injury: a longitudinal investigation.
      Although some improvements have been observed in community integration over longer time periods, average scores remained lower than those measured preinjury.
      • Corrigan J.D.
      • Smith-Knapp K.
      • Granger C.V.
      Outcomes in the first 5 years after traumatic brain injury.
      Other studies have noted additional challenges associated with the transition from hospital to home. For example, one study found that individuals with acquired brain injury (ABI) report higher levels of depression and stress at 3-month postdischarge than during hospitalization.
      • Turner B.
      • Fleming J.
      • Cornwell P.
      • Haines T.
      • Ownsworth T.
      Profiling early outcomes during the transition from hospital to home after brain injury.
      Although these investigations provide important information on outcomes after discharge from hospital, they do not describe sentinel events, that is, events other than discharge itself that may influence the level of community integration occurring in the transition period.
      In our previous work examining sentinel events in the context of transition,
      • Nalder E.
      • Fleming J.
      • Foster M.
      • Cornwell P.
      • Shields C.
      • Khan A.
      Identifying factors associated with perceived success in the transition from hospital to home after brain injury.
      • Turner B.
      • Fleming J.
      • Cornwell P.
      • et al.
      A qualitative study of the transition from hospital to home for individuals with acquired brain injury and their family caregivers.
      we defined these as either positive or negative events that arise in the life course of individuals with TBI.
      • Nalder E.
      • Fleming J.
      • Foster M.
      • Cornwell P.
      • Shields C.
      • Khan A.
      Identifying factors associated with perceived success in the transition from hospital to home after brain injury.
      • Nalder E.
      • Fleming J.
      • Cornwell P.
      • et al.
      Recording sentinel events in the life course of individuals with acquired brain injury: a preliminary study.
      On the basis of our pilot work,
      • Turner B.
      • Fleming J.
      • Cornwell P.
      • et al.
      A qualitative study of the transition from hospital to home for individuals with acquired brain injury and their family caregivers.
      we identified critical events to be included in the Sentinel Events Questionnaire (SEQ): positive sentinel events such as returning to meaningful occupation, resumption of independence in the home, and return to independent use of transportation and driving; and negative sentinel events such as financial strain (eg, borrowing money, loss of employment income, accessing welfare or savings plans), relationship breakdown, accommodation change, and difficulty accessing therapy services.
      • Nalder E.
      • Fleming J.
      • Foster M.
      • Cornwell P.
      • Shields C.
      • Khan A.
      Identifying factors associated with perceived success in the transition from hospital to home after brain injury.
      • Nalder E.
      • Fleming J.
      • Cornwell P.
      • et al.
      Recording sentinel events in the life course of individuals with acquired brain injury: a preliminary study.
      However, one limitation of this work is that we did not investigate how sex and/or gender influences the occurrence and lived experiences of these events.
      Although women represent one third of all individuals with TBI, there is a paucity of evidence characterizing their transition process from hospital to home. Links between sex, gender, and health are well established in the literature.
      • Krieger N.
      Genders, sexes, and health: what are the connections—and why does it matter?.
      In one study, women at least 5 years post-TBI were more likely to report poor overall health, problems with emotional well-being, fatigue, and reproductive problems than were their healthy counterparts.
      • Colantonio A.
      • Mar W.
      • Escobar M.
      • et al.
      Women’s health outcomes after traumatic brain injury.
      Differential patterns in symptom severity have also been noted. For example, men have been reported to have greater impairments in executive functioning and memory
      • Niemeier J.P.
      • Marwitz J.H.
      • Lesher K.
      • Walker W.C.
      • Bushnik T.
      Gender differences in executive functions following traumatic brain injury.
      • Ratcliff J.J.
      • Greenspan A.I.
      • Goldstein F.C.
      • et al.
      Gender and traumatic brain injury: do the sexes fare differently?.
      whereas women report higher levels of fatigue, anxiety, and depression.
      • Englander J.
      • Bushnik T.
      • Oggins J.
      • Katznelson L.
      Fatigue after traumatic brain injury: association with neuroendocrine, sleep, depression and other factors.
      • Liossi C.
      • Wood R.L.
      Gender as a moderator of cognitive and affective outcome after traumatic brain injury.
      It is therefore reasonable to hypothesize that women may have unique experiences when transitioning from hospital to home and that these should be identified and addressed to provide optimal rehabilitation. It is also important to examine how sex and gender influence outcomes for family caregivers. Disrupted family functioning has been shown to have a greater negative impact on male caregivers,
      • Anderson M.I.
      • Simpson G.K.
      • Morey P.J.
      The impact of neurobehavioral impairment on family functioning and the psychological well-being of male versus female caregivers of relatives with severe traumatic brain injury: multigroup analysis.
      and gender of the TBI survivor (ie, female) has been linked to poorer family system functioning.
      • Gan C.
      • Campbell K.A.
      • Gemeinhardt M.
      • McFadden G.T.
      Predictors of family system functioning after brain injury.
      In this study, we analyzed the occurrence of sentinel events during the transition from hospital to home and the influence of these events on transition outcomes in a sample of women with TBI. Our primary purpose in this research was to generate hypotheses regarding the transition experiences of women with TBI, which would lead to future investigations of sex and gender differences needing consideration during rehabilitation and during the transition period. Specific research questions were as follows: (1) What is the pattern of occurrence of sentinel events during the transition from hospital to home for women with TBI? (2) What are the outcomes for women with TBI and their family caregivers during the transition from hospital to home? and (3) Is there a connection between the occurrence of sentinel events and community integration? No specific hypotheses were formulated given the exploratory nature of this study.

      Methods

      Design

      Data for this hypothesis-generating study were collected as part of a larger prospective longitudinal cohort study investigating the transition from hospital to home.
      • Nalder E.
      • Fleming J.
      • Foster M.
      • Cornwell P.
      • Shields C.
      • Khan A.
      Identifying factors associated with perceived success in the transition from hospital to home after brain injury.
      The transition phase is hereafter defined as extending from hospital discharge to 6 months after community reentry. Quantitative data were collected in the week leading up to discharge, which became the baseline measure, and then at 1, 3, and 6 months later. Relevant hospital and university ethics committees approved this study.

      Sample

      Data from a sample of 25 women with TBI who had participated in a larger earlier study were examined. Participants in the larger study
      • Nalder E.
      • Fleming J.
      • Foster M.
      • Cornwell P.
      • Shields C.
      • Khan A.
      Identifying factors associated with perceived success in the transition from hospital to home after brain injury.
      were recruited consecutively and prospectively at the time of discharge from an acute neuroscience ward (providing acute stroke, neurosurgery, and neurology services) and an inpatient rehabilitation unit. Inclusion criteria were moderate or severe TBI, working age (between 18 and 60y), living in a community setting (ie, not discharged to a hospital or rehabilitation facility), and sufficient cognitive and communication skills to provide informed consent and participate in an interview. For this study, we added the additional inclusion criteria of being woman. Participants were excluded if they were in hospital for a period of <4 days (this time frame reflected local hospital protocols for the assessment of posttraumatic amnesia [PTA]) or if they had a mental health condition that impeded the provision of informed consent (eg, schizophrenia). Each participant was asked to identify a caregiver to participate in the study. The selected caregiver was the person who associated with them the most on a daily basis.

      Measures

      The Mayo-Portland Adaptability Inventory (MPAI)
      • Malec J.F.
      • Kragness M.
      • Evans R.W.
      • Finlay K.L.
      • Kent A.
      • Lezak M.D.
      Further psychometric evaluation and revision of the Mayo-Portland Adaptability Inventory in a national sample.
      was designed to capture the range of physical, cognitive, emotional, behavioral, and social problems that can arise after ABI. The measure has 3 subscales reflecting the International Classification of Functioning, Disability and Health
      • World Health Organization
      International Classification of Functioning, Disability and Health (ICF).
      : abilities (n=12 items), adjustment (n=12 items), and participation (n=8 items). Items are rated on 5-point scales, where 0 indicates total independence and 4 indicates a severe problem that interferes with activities >75% of the time. The MPAI has acceptable psychometrics
      • Malec J.F.
      • Kragness M.
      • Evans R.W.
      • Finlay K.L.
      • Kent A.
      • Lezak M.D.
      Further psychometric evaluation and revision of the Mayo-Portland Adaptability Inventory in a national sample.
      and allows for the conversion of raw scores into standardized T scores. Standardized scores of individuals with ABI and their caregivers are reported in this article.
      Levels of depression, anxiety, and stress for women with TBI and their family caregivers were measured with the 21-item short form of the Depression Anxiety Stress Scale (DASS).
      • Henry J.D.
      • Crawford J.R.
      The short-form version of the Depression Anxiety Stress Scales (DASS-21): construct validity and normative data in a large non-clinical sample.
      • Lovibond P.F.
      • Lovibond S.H.
      The structure of negative emotional states: comparison of the Depression Anxiety Stress Scales (DASS) with the Beck Depression and Anxiety Inventories.
      Participants rate the extent to which they have experienced symptoms of depression, anxiety, or stress (defined as increased tension
      • Lovibond P.F.
      Long-term stability of depression, anxiety, and stress syndromes.
      ) over the past week on a scale of 0 (none of the time) to 3 (most of the time). For each of the 3 subscales (depression, anxiety, stress), relevant item scores are summed and then multiplied by 2 to get a total score comparable to the full 42-item measure. Clinical cutoff scores are that a score of >9 indicates significant depression, >7 indicates significant anxiety, and >14 indicates significant stress. Research shows the DASS to have acceptable psychometric properties.
      • Dahm J.
      • Wong D.
      • Ponsford J.
      Validity of the Depression Anxiety Stress Scales in assessing depression and anxiety following traumatic brain injury.
      • Ownsworth T.
      • Little T.
      • Turner B.
      • Hawkes A.
      • Shum D.
      Assessing emotional status following acquired brain injury: the clinical potential of the depression, anxiety and stress scales.
      The process of transition was examined using the SEQ,
      • Nalder E.
      • Fleming J.
      • Cornwell P.
      • et al.
      Recording sentinel events in the life course of individuals with acquired brain injury: a preliminary study.
      which asks about the occurrence of 8 defined events and the date on which they transpired. Events include financial strain (borrowing money or sale of assets), relationship breakdown (relationship ending or loss of contact with a significant friend or family member), changing living situation (eg, returning to live with parents), difficulty accessing therapy services (being unable to access or continue with therapy despite wishing to do so), return to meaningful occupation (including paid employment, student, volunteer roles, childcare and/or caregiving responsibilities, and homemaking), able to stay at home alone for ≥4 hours, return to independent use of transportation (public transport or taxis), and return to driving (medical clearance to resume driving). Individuals can report multiple instances of each event and the dates on which they occurred. The SEQ also provides space for individuals to record other events deemed to have affected their life and transition. However, these data were not analyzed owing to the large variability in the data set. The SEQ was developed specifically to document the transition period of a population with ABI
      • Turner B.
      • Fleming J.
      • Cornwell P.
      • et al.
      A qualitative study of the transition from hospital to home for individuals with acquired brain injury and their family caregivers.
      and has been shown to have acceptable participant-proxy agreement for all items (>80%).
      • Nalder E.
      • Fleming J.
      • Cornwell P.
      • et al.
      Recording sentinel events in the life course of individuals with acquired brain injury: a preliminary study.
      Demographic details were also recorded. Variables included age, years of education, preinjury occupational status (paid work, unpaid work, or unemployed), relationship status, cause of injury, duration of PTA (measured using the Westmead Post-traumatic Amnesia Scale
      • Shores E.A.
      Further concurrent validity data on the Westmead PTA Scale.
      ), length of hospital stay, and relation to caregiver.

      Procedure

      Baseline assessments were completed in the hospital via interview with a member of the research team. Follow-up data collection occurred via telephone, in-person interview, or via returning written responses to questionnaires by e-mail or mail. In cases in which questionnaires were returned via e-mail or mail, a trained research assistant checked responses and participants were contacted to clarify responses as required. Demographic details were obtained by reviewing medical charts and through participant interviews. Women with TBI completed the MPAI, DASS, and SEQ, and caregivers rated their own well-being on the DASS and provided a proxy rating of the functioning of women with TBI on the MPAI.

      Planned analyses

      Descriptive statistics were used to analyze demographic variables, and Cohen's d statistic (the standardized measure of the difference between 2 means) was used as an indicator of effect size.
      To address the first research question, related to the pattern of occurrence of sentinel events for women with TBI in transition, descriptive statistics were used, including frequencies of occurrence and time until the event occurred.
      To address the second research question, related to transition outcomes for women with TBI and their caregivers, descriptive statistics were computed for the MPAI and DASS. A paired t test was used to compare self-ratings of the MPAI between individuals with TBI and their caregivers at each time point.
      To address the third research question, related to the influence of sentinel events on community integration, 2 linear mixed-effects models were used. Because the sample size precluded examination of all 8 events, 2 were selected for analysis to provide an example of how data pertaining to these events could be analyzed in future research. Having difficulty accessing therapy may facilitate community integration by providing a means of improving ability. Return to meaningful activity may influence community integration in several ways (eg, by increasing social integration, financial independence, or self-efficacy). Both models used scores on the MPAI participation subscale as the outcome variable and PTA as a covariate (to control for injury severity). Sentinel events were used as explanatory variables, coded according to whether they had been reported by participants on at least 1 occasion during the transition period. These analyses included data from each time point grouped by participant. Although missing data were present at each assessment, data were not imputed or excluded because participants returned to complete subsequent assessments. All data analyses were completed using Stata 11.
      • StataCorp
      Stata Statistical Software: Release 11.
      ,a

      Results

      Sample characteristics

      During the recruitment period, 218 individuals with TBI met the inclusion criteria for the larger study, 36 of whom were women (17%). Eight women declined to consent and 3 were lost to follow-up, resulting in a final sample of 25 women with TBI. This sample was compared with all nonrespondents on key demographic variables (age, gender, length of hospital stay; table 1). There were no differences in the proportion of women who consented and refused participation (n=36; χ22=1.03; φ=.04). In the entire sample, there was a moderate effect of age such that individuals declining consent were younger than those lost to follow-up (d=.58) and those who consented (d=.43). When looking only at women with TBI, the 3 women lost to follow-up were older (d=.39) and had a longer hospital stay (d=.61) than were women who declined to consent and those in the study. Demographic characteristics of the sample are summarized in table 2. Of the 16 caregivers identified by participants, 9 were men (56%).
      Table 1Comparisons of consenting and nonconsenting individuals
      Eligible participants were categorized into groups: those lost to follow-up, those who declined consent, those who participated (sample), and the subsample of women with TBI.
      VariableComplete CohortFemale Cohort
      Lost to Follow-Up (n=23)Refusal (n=60)Sample (n=135)Lost to Follow-Up (n=3)Refusal (n=8)Sample (n=25)
      Gender: female3 (13%)8 (13%)25 (19%)3 (100%)8 (100%)25 (100%)
      Age (y)41±9.430.4±10.935.6±12.737.7±6.733.5±14.133.3±10.9
      LOS (d)47.8±65.461.3±66.470.2±89.8140±119.789.4±111.680.3±86.7
      NOTE. Values are presented as mean ± SD or as n (%).
      Abbreviation: LOS, length of hospital stay.
      Eligible participants were categorized into groups: those lost to follow-up, those who declined consent, those who participated (sample), and the subsample of women with TBI.
      Table 2Demographic characteristics of the sample
      CharacteristicWomen With TBI (n=25)Caregiver (n=16)
      PTA duration (d)27.9±29.0 (1–123)NA
      Length of hospitalization (d)80.3±86.7 (4–394)NA
      Cause of injury
       MVC13 (52)NA
       Falls10 (40)NA
       Other
      Other = struck by falling tree branch and bicycle accident.
      2 (8)NA
      Age (y)33±10.9 (17–50)46.5±11.4 (26–65)
      Education (y)12±3.4 (6–21)13±2.6 (10–17)
      Preinjury occupation
       Paid employment15 (60)14 (88)
       Homemaker5 (20)1 (6)
       Student3 (12)0 (0)
       Unemployed2 (8)0 (0)
      One caregiver's occupational status was unknown.
      Gender: female25 (100)7 (44)
      Relation to women with TBI
       SpouseNA8 (50)
       ParentNA6 (38)
       Other
      Other = sibling and daughter.
      NA2 (12)
      NOTE. Values are presented as mean ± SD (range) or as n (%).
      Abbreviations: MVC, motor vehicle collision; NA, not applicable.
      Other = struck by falling tree branch and bicycle accident.
      One caregiver's occupational status was unknown.
      Other = sibling and daughter.

      Sentinel events present in the transition experiences of women with TBI

      All sentinel events included in the SEQ were present in the transition period and are listed in table 3, which are ordered in terms of their frequency of identification. The most frequently identified event, that of being able to stay alone at home, occurred for almost all women (23 of 25 [92%]) and early in the transition period (mean of 25.7d postdischarge). Returning to meaningful occupation, reported by 14 women (56%), was recorded if work, homemaker, and/or student roles were resumed in any capacity including full-time and other graded return to activity. Of those women who reported returning to meaningful activity, 12 (80%) returned to paid work, 2 (13%) resumed primary responsibility for homemaking duties, and 1 (7%) returned to studying. One woman who cited homemaking as her primary role before her injury resumed homemaking tasks and started a new paid job. The timing of sentinel events was extremely variable because all had large SDs. Changing living situation that showed the least variability ranged in timing from 1 to 63 days.
      Table 3Presence and timing of sentinel events occurring in the transition of women with TBI from hospital to home
      Sentinel EventParticipants Reporting EventPredischarge OccurrencesPostdischarge OccurrencesTotal OccurrencesTime to Event (d)
      Ability to stay alone at home23/25 (92)2242625.7±27.5 (1–99)
      Independence in transport use20/25 (80)1192045.3±36.5 (1–138)
      Return to meaningful occupation14/25 (56)0151566.6±61.1 (4–188)
      Reduced therapy access10/25 (40)2121453.0±75.4 (1–226)
      Living situation change8/25 (32)09916.0±22.8 (0.1–63)
      0.1 indicates that the event occurred on the day of discharge from the hospital. Predischarge occurrences of the event are not included in the time until event column. Some participants could not be interviewed until after the date of their 6-mo follow-up and that is why some events are reported to have occurred after 183d.
      Return to driving8/25 (32)088116.3±57.8 (55–225)
      Financial strain7/25 (28)291164.9±57.0 (1–179)
      Relationship breakdown6/25 (24)24653.3±52.6 (15–127)
      NOTE. Values are presented as mean ± SD, as n, or as n/N (%).
      0.1 indicates that the event occurred on the day of discharge from the hospital. Predischarge occurrences of the event are not included in the time until event column. Some participants could not be interviewed until after the date of their 6-mo follow-up and that is why some events are reported to have occurred after 183d.

      Transition outcomes for women with TBI and their caregivers

      Table 4 presents summary statistics for the MPAI and DASS for women with TBI and their caregivers. Average scores on the MPAI changed little over time (ie, the mean total score for women was 39.9 at baseline and at 6mo). At all time points, the highest scores were on the participation and adjustment subscales, indicating that women with TBI had greatest difficulties in these domains. At baseline, women with TBI had significantly lower scores on the MPAI ability (P=.02) and adjustment subscales (P=.03) than did their caregivers, which suggests that either individuals with TBI underreport or caregivers overreport problems during hospitalization. There were no significant differences between women with TBI and caregivers at each postdischarge time point.
      Table 4Psychosocial outcomes for women with TBI and caregivers
      MeasurePredischarge (n=22)1mo (n=18)3mo (n=24)6mo (n=19)
      Women
       MPAI total39.9±7.5 (18–51)39.6±7.7 (23–50)41.1±9.9 (18–55)39.9±8.4 (23–54)
      Abilities34.3±10.9 (7–49)37.0±9.6 (7–52)38.3±10.9 (20–59)37.0±10.1 (20–53)
      Adjustment37.1±10.4 (12–55)37.7±9.8 (12–49)38.8±13.7 (12–59)38.8±10.1 (12–52)
      Participation42.1±8.0 (20–58)37.9±12.6 (4–54)38.5±17.1 (4–64)39.1±13.3 (20–70)
       DASS total15.6±20.3 (0–94)13.1±13.9 (0–56)17.4±23.8 (0–96)14.6±15.4 (0–60)
      Depression5.2±7.7 (0–30)4.3±5.9 (0–24)6.0±9.9 (0–36)5.5±6.4 (0–24)
      Anxiety3.9±7.7 (0–36)3.9±5.5 (0–24)4.7±7.8 (0–32)3.2±5.7 (0–20)
      Stress6.5±7.4 (0–28)4.9±4.3 (0–18)6.7±8.3 (0–32)5.8±6.2 (0–20)
      Predischarge (n=12)1mo (n=16)3mo (n=14)6mo (n=9)
      Caregivers
       MPAI total44.8±4.7 (37–51)37.0±16.7 (−5–52)35.6±18.7 (5–53)40.6±10.8 (19–56)
      Abilities41.8±7.2 (25–52)34.6±12.1 (4–50)37.9±14.6 (4–56)40.2±11.0 (18–53)
      Adjustment44.3±4.4 (35–51)37.5±17.2 (6–53)37.3±19.4 (6–54)36.9±15.3 (12–56)
      Participation45.1±5.7 (35–53)40.4±9.5 (22–50)37.3±16.0 (10–63)38.6±12.9 (22–58)
       DASS total14.8±14.9 (0–41)14.1±14.9 (0–56)6.1±8.1 (0–22)10.7±9.7 (0–24)
      Depression4.3±7.3 (0–25)3.9±4.9 (0–16)1.5±1.9 (0–4)2.9±2.5 (0–6)
      Anxiety1.8±2.2 (0–7)1.9±2.4 (0–8)0.6±0.9 (0–2)0.7±0.9 (0–2)
      Stress8.8±8.5 (0–24)8.3±8.4 (0–32)4.1±5.9 (0–16)7.1±6.5 (0–16)
      NOTE. Scores presented are standardized T scores: 30–40, mild impairment; 40–50, mild to moderate impairment; 50–60, moderate to severe impairment; >60, severe impairment. Depression scores >9, anxiety scores >7, and stress scores >14 indicate clinically significant levels of the respective symptoms.
      For women with TBI, average scores on the depression and stress subscales appear to increase up to 3-month postdischarge before leveling off, whereas the average anxiety score continued to gradually increase over the 6-month period observed. Three-month postdischarge was when the highest number of women reported symptoms of depression (n=6 [24%]), anxiety (n=6 [24%]), and stress (n=4 [16%]) above a clinical cutoff. By 6 months, these numbers had slightly reduced; 3 women reported clinically significant depression and anxiety (12%), and 2 reported clinically significant stress levels (8%). For caregivers, average scores on all subscales decreased between discharge and 3 months and then increased between 3 and 6 months (see table 2). At each time point, <2 caregivers (13%) reported clinically significant depression, only 1 reported clinically significant anxiety (6%), and <3 noted clinically significant stress symptoms (18%). Eight of 16 caregivers reported clinically significant symptoms of depression, anxiety, and/or stress, and 4 of them were men.

      Impact of sentinel events on community integration

      Linear mixed-effects models explored the association between the occurrence of sentinel events and the level of participation of women with TBI, controlling for injury severity (PTA duration). Experiencing difficulty accessing therapy services was associated with reduced levels of participation in women with TBI (β=13.9; P<.01) and had a stronger association than did PTA duration (coefficient=.17; P=.01). Return to meaningful occupation was associated with higher levels of participation (coefficient=−9.6; P=.02) and also showed a stronger association than did PTA duration (coefficient=.13; P=.07).

      Discussion

      To our knowledge, this is the first study describing sentinel events and their relation to outcomes for women with TBI during the transition from hospital to home. Participants were recruited consecutively and followed prospectively during the 6-month transition period. All sentinel events as measured by the SEQ were present in the transition experiences of women with TBI. Indeed, some events such as financial strain and difficulty accessing therapy services occurred on multiple occasions to the same individual. Encouragingly, positive events such as being able to stay at home alone and return to independent use of transportation were common, reported by >20 women (>80% of the sample). Of particular importance, 10 women (40%) reported difficulty accessing therapy services and this was associated with poorer participation. Although the sample size in this study precludes definite conclusions, findings do allow for hypotheses and discussion regarding adjustment and sentinel events present in the transition experiences of women with TBI.
      Overwhelmingly, research on the transition phase has characterized it as a period of adjustment for individuals with TBI, calling for early intervention to prevent the onset of chronic psychological distress.
      • Turner B.J.
      • Fleming J.M.
      • Ownsworth T.L.
      • Cornwell P.L.
      The transition from hospital to home for individuals with acquired brain injury: a literature review and research recommendations.
      In this study, the DASS was used to collect data on depression, anxiety, and stress symptoms, with many women with TBI noting few symptoms. However, there was significant variability in the range of total DASS scores. Although some women reported no symptoms, a small number were experiencing very severe depression (n=3), anxiety (n=3), and stress (n=2) at 6 months. Given the small number of participants and the presence of missing data, trends in the prevalence and trajectory of distress symptoms should be interpreted with caution.
      Family members of individuals with TBI also experience difficulties in psychosocial adjustment. In contrast with other reports in the literature, <3 caregivers (18%) in this study noted symptoms of depression, anxiety, and stress that exceeded clinical cutoff scores.
      • Kreutzer J.S.
      • Rapport L.J.
      • Marwitz J.H.
      • et al.
      Caregivers’ well-being after traumatic brain injury: a multicenter prospective investigation.
      • Stevens L.F.
      • Arango-Lasprilla J.C.
      • Deng X.
      • et al.
      Factors associated with depression and burden in Spanish speaking caregivers of individuals with traumatic brain injury.
      In another study,
      • Stevens L.F.
      • Arango-Lasprilla J.C.
      • Deng X.
      • et al.
      Factors associated with depression and burden in Spanish speaking caregivers of individuals with traumatic brain injury.
      up to 51% of caregivers have been reported as experiencing depression and subjective burden. One difference is that the sample of caregivers in the present study had a higher proportion of male caregivers (9 of 16 [56%]) compared with the study
      • Stevens L.F.
      • Arango-Lasprilla J.C.
      • Deng X.
      • et al.
      Factors associated with depression and burden in Spanish speaking caregivers of individuals with traumatic brain injury.
      in which 51% of caregivers reported difficulties (12 of 49 [25%]). Consistent with previous research
      • Anderson M.I.
      • Simpson G.K.
      • Morey P.J.
      The impact of neurobehavioral impairment on family functioning and the psychological well-being of male versus female caregivers of relatives with severe traumatic brain injury: multigroup analysis.
      that has found gender differences in how caregivers cope with changes in family dynamics, these findings suggest that there may be gender differences in the psychosocial functioning of caregivers of individuals with TBI. Future studies should use a sex- or gender-based approach to further our understanding of how male and female caregivers experience the emotional adjustment associated with transitioning to a caregiver role.
      • Verbrugge L.M.
      The twain meet: empirical explanations of sex differences in health and mortality.
      Transition has also been linked to the development of self-awareness in individuals with brain injury.
      • Fleming J.M.
      • Winnington H.T.
      • McGillivray A.J.
      • Tatarevic B.A.
      The development of self-awareness and relationship to emotional functioning during early community reintegration after traumatic brain injury.
      Concurrently, some individuals also experience depression and anxiety, particularly where the awareness deficit has a psychological basis (ie, using denial as a coping mechanism).
      • Flashman L.A.
      • McAllister T.W.
      Lack of awareness and its impact in traumatic brain injury.
      • Prigatano G.P.
      • Klonoff P.S.
      A clinician’s rating scale for evaluating impaired: self-awareness and denial of disability after brain injury.
      Awareness of deficits is also known to emerge with time, and in this study there was greater convergence in MPAI ratings between women with TBI and caregivers after discharge from hospital. This may explain why average scores on the DASS for women with TBI were higher at 6-month postdischarge.
      • Fleming J.M.
      • Winnington H.T.
      • McGillivray A.J.
      • Tatarevic B.A.
      The development of self-awareness and relationship to emotional functioning during early community reintegration after traumatic brain injury.
      • Flashman L.A.
      • McAllister T.W.
      Lack of awareness and its impact in traumatic brain injury.
      Alternatively, the lack of agreement between individuals and caregivers at baseline may suggest that family members overreport impairments when experiencing higher levels of depression, anxiety, and stress. Regardless, the presence of emotional distress in some of the women with TBI and their family caregivers suggests the need for psychology and/or counseling services to adequately screen for and manage depression and anxiety symptoms during transition. This finding is supported by other studies in this area.
      • Turner B.J.
      • Fleming J.M.
      • Ownsworth T.L.
      • Cornwell P.L.
      The transition from hospital to home for individuals with acquired brain injury: a literature review and research recommendations.
      Our preliminary analyses of the associations between sentinel events and community integration suggest that this is an important area for future investigations. Owing to our small sample, we investigated these relationships for only 2 sentinel events (having difficulty accessing therapy and return to meaningful occupation) while controlling for injury severity. Both had a significant association with community integration as measured by the participation score of the MPAI. The use of mixed-effects models was important because they consider the individual variability in community integration (scores on the MPAI participation subscale) and changes in scores over time.
      Difficulty accessing therapy services was reported on at least 1 occasion during the transition period by 10 of the 25 women with TBI in our sample. Moreover, the timing of this event was extremely variable, suggesting that after hospital discharge women with TBI may have an ongoing risk of not being able to access services when they need or want to. Perhaps these findings reflect a more general trend of limited community-based care for individuals with TBI
      • Turner B.J.
      • Fleming J.
      • Ownsworth T.
      • Cornwell P.
      Perceived service and support needs during transition from hospital to home following acquired brain injury.
      or differences in the perception of service need because women have been reported to have different health-reporting behaviors than do men.
      • Verbrugge L.M.
      The twain meet: empirical explanations of sex differences in health and mortality.
      • Bounds T.A.
      • Schopp L.
      • Johnstone B.
      • Unger C.
      • Goldman H.
      Gender differences in a sample of vocational rehabilitation clients with TBI.
      Because research in TBI has predominantly used male samples, it is possible that the needs of women with TBI may not be reflected in current practices.
      • Colantonio A.
      • Harris J.E.
      • Ratcliff G.
      • Chase S.
      • Ellis K.
      Gender differences in self reported long term outcomes following moderate to severe traumatic brain injury.
      During the data collection period, there were no transitional rehabilitation services at the recruitment sites. In addition, case management, day hospital, and outpatient rehabilitation services were noted to be limited.
      • Turner B.J.
      • Fleming J.
      • Ownsworth T.
      • Cornwell P.
      Perceived service and support needs during transition from hospital to home following acquired brain injury.
      Transition is associated with role change and individuals with ABI have reported frustration at the inability to engage in meaningful occupations.
      • Turner B.
      • Ownsworth T.
      • Cornwell P.
      • Fleming J.
      Reengagement in meaningful occupations during the transition from hospital to home for people with acquired brain injury and their family caregivers.
      In this study, women with TBI noted lower participation in work and leisure on the MPAI, although more than half of the women in our sample (14 of 25 [56%]) reported on the SEQ that they had in some capacity resumed meaningful activities. The frequency of this event may be attributable to the broad definition of meaningful occupation including paid work, volunteer roles, and homemaker duties. Women in this sample who were able to resume meaningful activity also rated their community integration higher. Future research may test this association using more specific occupational definitions distinguishing between the type of roles and the extent to which individuals were able to return to that role in their previous capacity. This would enable rehabilitation to address the specific needs of women and men. For example, perhaps women with TBI are required to juggle multiple roles (eg, childcare and work), causing more difficulty in these tasks, or perhaps men experience more pressure to resume work sooner.
      • Kvam L.
      • Eide A.H.
      Gender differences in the importance of participation associated with injured workers/persons perceived barriers to returning to work in the context of vocational rehabilitation.
      A somewhat unexpected finding was that the average scores on the MPAI for women with TBI changed little over the course of the transition period. In another study,
      • Turner B.
      • Fleming J.
      • Cornwell P.
      • Haines T.
      • Ownsworth T.
      Profiling early outcomes during the transition from hospital to home after brain injury.
      average scores on the MPAI participation subscale have been shown as improving throughout the transition phase, although the sample in that study was predominantly men. This discrepancy suggests that longitudinal research is required to ascertain whether the time taken to resume meaningful activities or the success in resuming meaningful activities differs for men and women. Future research may also use mixed methodologies to determine whether self-reported differences in participation correlate with observed functional performance.

      Directions for future research

      This study intended to identify the transition experiences of women with TBI because of the dearth of research in this area. Future research, however, should compare the transition experiences of men and women with TBI. Sex (biological dimensions of being male or female) and gender (socially constructed dimensions of being male or female) have been inconsistently defined in research and at times used interchangeably.
      • Johnson J.L.
      • Greaves L.
      • Repta R.
      Better science with sex and gender: facilitating the use of a sex and gender-based analysis in health research.
      This growing understanding of the complexity of sex and gender is not routinely measured in health and rehabilitation research. Findings in this study suggest that future research should examine whether sex and gender influence the occurrence, timing, and appraisal of sentinel events, in particular events such as return to meaningful occupation, difficulty accessing therapy services, and return to independent use of transportation that were linked to community integration for women in this study. When considering events such as return to work and driving, 6-month postdischarge is a short time frame. Therefore, considering community integration for women with TBI over a longer time period and the extent to which transition experiences shape later outcomes is recommended.

      Study limitations

      Although we recruited participants consecutively and followed them prospectively, the large proportion of potential participants who did not consent or were lost to follow-up resulted in this sample being small. Part of our sample (28%) was recruited from an acute neuroscience ward. Recruitment in these settings is challenging given the high patient turnover and short length of admissions. Although the small sample in the present study limits generalizability, these data present new information on an underresearched group and highlight areas for future research.
      The small sample size and lack of data on the nature of cognitive and physical impairments in the sample limited our ability to undertake inferential analyses examining links between sentinel events and community integration. Univariate regression analyses were conducted owing to the small number of participants, increasing the potential for type I error in the mixed-effects models. However, the risk of error is mitigated to some degree by the nature of our study design, resulting in prospective cohort data.
      • Hosmer D.
      • Lemeshow S.
      Applied logistic regression.
      • Twisk J.W.
      Applied longitudinal data analysis for epidemiology.
      Future research should ideally also use longitudinal designs to examine changes that occur over time, and a larger sample characterized in terms of its cognitive and physical impairments. The MPAI, which measures the broad range of problems that people with ABI may encounter, would be useful to include in such research.
      The generalizability of these data may be compromised by the recruitment strategy whereby only 2 sites in a single urban setting in Australia were used. It may also be limited by observed differences between women with TBI lost to follow-up and the remaining sample. Moreover, only 16 caregivers were included, and the nature of their relationship to women with TBI varied. This may affect the generalizability of the findings and the value of the proxy report on outcome measures. Previous research has noted differences in the participant-proxy agreement on the basis of the nature of the relationship between individuals with TBI and their caregivers.
      • Dawson D.R.
      • Markowitz M.
      • Stuss D.T.
      Community integration status 4 years after traumatic brain injury: participant-proxy agreement.

      Conclusions

      Sentinel events are commonly reported and can have a significant influence on the transition process, including perceptions regarding community integration held by women with TBI. Future research using mixed methodologies should explore how perceptions of gender influence the experiences of women with TBI going through sentinel life events, including reengaging in meaningful activities and accessing rehabilitation. This will inform the establishment of individualized rehabilitation services that can facilitate successful transitions for women with TBI.

      Supplier

      • a.
        StataCorp LP.

      Acknowledgments

      We thank Tamara Ownsworth, PhD, Terry Haines, PhD, and Melissa Kendall, PhD, Lesley Chenoweth, PhD, and Linda Worrall, PhD, for providing their input in the research design and in obtaining grant funding.

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