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Table 20 Educational Interventions for Caregivers of Individuals with an ABI

Author Year Country Study Design Sample Size Methods Outcome
Sinnakaruppan et al. (2005) Scotland RCT PEDro=5 N=83 Population: Head Injury=41, Caregivers=42; Gender: Male=41, Female=42. Participants With Head Injuries (n=41): Age Range=21-63yr; Range of Time Post Injury=2-94mo; Severity: Moderate=22, Severe=19. Intervention: Caregivers and patients were randomly assigned to an educational training program covering memory, executive function and emotions led by a neuropsychologist (Treatment, 8 x 2.5 hr sessions) or a waitlist (Control). Outcome Measures: Hospital Anxiety and Depression Scale (HADS), General Health Questionnaire-28 (GHQ), Rosenberg Self-Esteem Scale, COPE Scale, Functional Independence Measure (FIM), Rivermead Behavioural Memory Test (RBMT), Behavioural Assessment of Dysexecutive Syndrome (BADS), Weschler Adult Intelligence Scale-Third Edition (WAIS). 1.       For caregivers, the Treatment Group had significantly decreased GHQ-Depression scores than Controls (p=0.044), but no significant differences were found on the HADS. 2.       For patients, the mean change improvements were significant in only the Treatment Group for HADS anxiety (p=0.008) and depression (p=0.017). On all GHQ subscales, the Treatment Group had significantly greater mean changes than the Controls (p<0.05). 3.       Total FIM mean differences were greater for caregivers in the Treatment Group than in the Control Group (p=0.036). 4.       Caregivers in the Treatment Group had greater improvements in seeking instrumental social support (p=0.04) and behavioural disengagement (p=0.016) than Controls. 5.       Patients in the Treatment Group showed greater mean score changes on the WAIS vocabulary (p=0.02), RBMT profile (p=0.04) and screening (p=0.034), and BADS (p=0.043) than Controls.
Carnevale et al. (2002) USA RCT PEDro=5 N=27 Population: Caregivers Of Individuals With ABI; Mean Age=47.5 yr. Intervention: Participants and their caregiver (27 pairs) were randomly assigned to the control group (n=10), education group (2 hr/wk, 4 wk; n=8) or education plus behavioural management group (n=9). The intervention (8 wk) was the development and implementation of individualized treatment plans. Outcome Measures: Questionnaire on Resources and Stress for Families with Chronically Ill or Handicapped Members (QRS), Adapted Version of the Maslach Burnout Inventory (MBI). 1.       *Limited statistics provided in study. After adjustment for baseline burden and stress ratings, an analysis of covariance found that there were no significant differences after treatment on the QRS and MBI.
Fortune et al. (2016) Ireland PCT Ninitial=113, Nfinal=76 Nfollow-up=61 Population: Caregivers For Patients With ABI. Treatment Group (n=75): Mean Age=52.08yr; Gender: Male=11, Female=64; Relation: Parent=33, Spouse/Partner=35, Child=5, Sibling=2. Control Group (n=38): Mean Age=52.68yr; Gender: Male=8, Female=30; Relation: Parent=19, Spouse/Partner=15, Child=1, Sibling=3. Intervention: Caregivers were allocated to a receive educational training sessions on a variety of subjects pertaining to caring for an individual with an ABI (Treatment) or a wait-list (Control). Outcomes were assessed before and after intervention, and at 3 mo follow-up. Outcome Measures: Caregiver Strain Index (CSI), Perceived Criticism Scale (PCS), Hospital Anxiety & Depression Scale (HADS). 1.        The Treatment Group showed significant improvement in CSI (F=3.97, p=0.02), PCS-Caregiver (F=9.54, p=0.001), and PCS-Patient (F=6.02, p=0.003) compared to Controls after treatment and at follow-up. 2.       No significant difference in HADS was found between groups after treatment or at follow-up.
Goodwin et al. (2016) United Kingdom Pre-Post N=66 Population: ABI; Mean Age=40yr; Gender: Male=41, Female=25; Mean Time Post Injury=3yr. Intervention: Patients and caregivers were recruited and assessed before and after rehabilitation. Caregivers were provided with education on the consequences of ABI. Outcome Measures: Dysexecutive Questionnaire (DEX), Carer Strain Index (CSI). 1.        Participants showed significant improvement on all DEX subscales after rehabilitation (p<0.05): Behavioural/Emotional (t=4.63), Executive Function (t=4.14), and Metacognitive (t=5.74). 2.        Caregivers showed significant improvement on two CSI subscales after rehabilitation of participants (p<0.05): Time/Practical (t=3.85) and Personal/Emotional (t=3.82). Improvement on the Personal/Role subscale was not statistically significant (t=1.90, p=0.63).
Morris (2001) United Kingdom Pre-Post Ninitial=33, Nfinal=27 Population: Caregivers Of Individuals With Head Injury; Age Range=16-65yr; Gender: Male=6, Female=27; Relation: Parent=20, Spouse=12, Sibling=1. Intervention: Caregivers were provided with an information booklet and completed questionnaires at 2 time points 4wk apart. Participants were divided into Group 1 (n=11, caring for someone 2-9mo post injury), or Group 2 (n=22; caring for someone ≥1yr post injury). Outcome Measures: General Health Questionnaire (GHQ), Hospital Anxiety and Depression Scale (HADS). 1.       Changes in scores on the GHQ and HADS were not statistically significant when data for both groups were analyzed together or separately. 2.        Group 1 showed a statistically significant reduction on the GHQ social dysfunction subscale (p<0.05).
Brown et al. (2015) USA RCT PEDro=8 NInitial=257, NFinal=215 Population: TBI=144, Family Members Of Individuals With TBI=113 Treatment Group (n=129): Mean Age=48.6yr; Gender: Male=51, Female=78; Mean Time Post Injury=>1yr; Severity: Moderate-to-Severe=69. Control Group (n=128): Mean Age=47.2yr (19.9, 86.4); Gender: Male=46 Female=82; Mean Time Post Injury=>1yr; Severity: Moderate-to-Severe=75 Intervention: Participants were randomly allocated to a curriculum-based or self-directed advocacy training group that focused on: ·         Gaining skills to access services, funding and other supports for living and working ·         Gaining skills to increase self and community awareness about TBI ·         Initiating and tracking service and policy changes ·         Improving the ability of others to obtain access to community life and successful living Both groups met on the same day once per month for 4mo. Outcome measures were assessed prior to participation in the first program or self-directed training sessions and at the end of the last training session. Outcome Measures: Written self/systems advocacy, Verbal self/systems advocacy, Advocacy Behaviour Rating Scale (ABRS). 1.        Curriculum based training in advocacy skills did not significantly improve behavioural measures of advocacy skills compared to self-directed training (ABRS; p>.05). 2.       When groups were combined and intervention type was not considered, behavioral measures of advocacy significantly improved post intervention (ARBS; p<.001).
Geurtsen et al. (2011) Netherlands Pre-Post NInitial=41, NFinal=38   Population: Caregivers Of Individuals With Chronic ABI=41; Mean Age= 47.9±8.3yr; Gender: Male=13, Female=28, Relationship to Patient: Parent=33, Spouse=6, Sibling=2 Intervention: Participants took part in the Brain Integration Program. Caregivers received individual education about brain injury and its behavioural consequences. They also received psychosocial support through individual counselling and information from rehabilitation nurses through regular phone calls, when necessary. Outcome measures were assessed at inclusion (T0), the start of the treatment 3mo later (T1), the end of the treatment (T2) and 1yr follow-up after the end of treatment (T3). Outcome Measures: Involvement Evaluation Questionnaire for Brain Injury (IEQ-BI), General Health Questionnaire (GHQ), Family Assessment Device (FAD) 1.        Participants showed significant improvement in emotional burden at follow-up compared to at inclusion (IEQ-BI Sum score; p=.004; IEQ-BI Tension subscale; p=.048; IEQ-BI Worrying subscale; p=.028, IEQ-BI Urging subscale; p=.001). 2.        Participants showed significant improvement in psychological health at 1yr follow-up (GHQ; p=.016). 3.        No significant changes were found immediately after treatment for any outcome measures (p>.05).
Sander et al. (2009) USA Post-Test NInitial=15, NFinal=15 Population: Caregivers Of Individuals With TBI=15 (Caring For A Patient With Severe TBI=9); Median Age=45yr; Gender: Female=12, Male=3; Relationship with Patient: Parent=11, Spouse/Significant Other=3, Other=1 Intervention: Participants completed six web-based videoconference sessions that combined didactic education and interactive problem-solving. The sessions were administered on an individual basis and addressed the following types of neurobehavioural problems post TBI: ·         General education on TBI and its consequences ·         Reduced awareness ·         Reduced memory and attention ·         Changes in language and social communication ·         Reduced initiation and organization ·         Changes in emotions and behaviour Outcome measures were assessed immediately following training and at an average of 18mo after training. Outcome Measures: Satisfaction survey, follow-up interview with questions about the helpfulness of the intervention. 1.        Participants’ overall satisfaction and comfort with the training was high, with 75-100% of participants indicating that the amount of information presented in each session was “just right” and each program session was helpful. 2.        Participants perceived that they gained knowledge that was applicable to the everyday problems being experienced. 3.        At follow-up, all participants reported having used the knowledge gained to help cope with problems and all had referred to the written materials at least once since the training.