Personality & behaviour changes following spinal cord injury: self perceptions--partner's perceptions

There has been little specific investigation of personality and behaviour changes following spinal cord injury (SCI) and only limited consideration of the possible impact of concurrent traumatic brain injury (TBI). By mail-out questionnaire, we evaluated personality and behaviour changes in a married group (n = 9) with traumatic SCI, who knew their partners prior to injury, and who had not been identified as having concurrent TBI on referral to the Canadian Paraplegic Association. Both the person with SCI (and the partner) completed the revised Adjective Checklist and by their combined report, there were significant personality and behaviour changes. Unexpectedly, five individuals described post-traumatic amnesia (PTA) > or = 3 days. Subsequently, participants' reports were further divided into two groups--"longer PTA" and "shorter PTA". The "longer PTA" group self-reported less change and more positive change than did their partners. The "longer PTA" partners described changes that are consistent with the profile of TBI. The "shorter PTA" group described themselves more negatively than did their partners. Given the size of the groups (n = 5, n = 4), these findings are presented to illustrate trends and to stimulate further research.     

Parental distress, parenting practices, and child adaptive outcomes following traumatic brain injury

Moderate and severe pediatric traumatic brain injuries (TBI) are associated with significant familial distress and child adaptive sequelae. Our aim was to examine the relationship between parental psychological distress, parenting practices (authoritarian, permissive, authoritative), and child adaptive functioning 12-36 months following TBI or orthopedic injury (OI). Injury type was hypothesized to moderate the relationship between parental distress and child adaptive functioning, demonstrating a significantly stronger relationship in the TBI relative to OI group. Authoritarian parenting practices were hypothesized to mediate relationship between parental distress and child adaptive functioning across groups. Groups (TBI n = 21, OI n = 23) did not differ significantly on age at injury, time since injury, sex, race, or SES. Parents completed the Brief Symptom Inventory, Parenting Practices Questionnaire, and Vineland-II. Moderation and mediation hypotheses were tested using hierarchical multiple regression and a bootstrapping approach, respectively. Results supported moderation and revealed that higher parental psychological distress was associated with lower child adaptive functioning in the TBI group only. Mediation results indicated that higher parental distress was associated with authoritarian parenting practices and lower adaptive functioning across groups. Results suggest that parenting practices are an important area of focus for studies attempting to elucidate the relationship between parent and child functioning following TBI.     

Zarit Caregiver Burden Interview: Development,reliability and validity of the Chinese version

Aims: To develop a specific scale used in measuring caregiver burden in China, and to evaluate its reliability and validity. Methods: Participants from the First and Second Affiliated Hospital of China Medical University and the Hospital of Tiefa Coal Industry Group completed the Chinese version of the Zarit Caregiver Burden Interview. Results: A total of 523 caregivers were included. The internal consistency of the Zarit Caregiver Burden Interview was high (Cronbach's α 0.875). The item–total correlations were all statistically significant (P < 0.01). Confirmatory factor analysis confirmed the five factors of the Zarit Caregiver Burden Interview in this study, and the goodness‐of‐fit indices reported for this 5‐factor model all fell within the acceptable range. Conclusions: The Chinese version of the Zarit Caregiver Burden Interview is reliable and valid for use. This study has important implications for burden measurement in Chinese caregivers.     

A transdiagnostic investigation of emotional distress after traumatic brain injury

Emotional distress after traumatic brain injury (TBI) often presents as a range of neurobehavioural and emotional reactions rather than distinct disorders. This study adopted a transdiagnostic approach with the aim of identifying psychological processes common to depression, anxiety and global distress after TBI. Fifty participants with TBI (aged 19–66 years, 12–65 months post-injury) completed measures of threat appraisals and avoidance behaviour (Appraisal of Threat and Avoidance Questionnaire), self-discrepancy (Head Injury Semantic Differential Scale III), emotion dysregulation (Difficulties in Emotion Regulation Scale), worry (Penn State Worry Questionnaire), negative self-focused attention (Self-Focus Sentence Completion) and emotional distress (Depression Anxiety Stress Scales and Brief Symptom Inventory). Significant correlations were found among the proposed transdiagnostic variables (rs?=?.29–.82, p?sr²?=?.12–.17). Such findings indicate the need for interventions to target difficulties in identifying and regulating emotions after TBI to facilitate emotional adjustment.     

阿尔茨海默病照料者的负担及相关因素研究

目的探讨影响阿尔茨海默病（AD）患者照料者负担的相关因素。方法选择来自记忆障碍门诊的不同严重程度AD患者及其照料者各190例,收集人口学资料,用Zarit照料者负担问卷评估照料者负担;用简易智力状态检查（MMSE）、日常生活能力量表（ADL）、神经精神科问卷（NPI）、临床痴呆严重度评定量表（CDR）评估患者的认知损害程度、日常生活能力、精神行为症状及疾病的严重程度,进行一系列相关分析。结果照料者负担Zarit评分6-47分,平均（21.73±8.02）分,Zarit分值与MMSE、ADL、NPI评分及病程的相关系数r值分别为-0.428、0.495、0.59及0.283（P〈0.01）。女性Zarit值（24.28±8.44）分高于男性（19.91±7.2）分（t=3.83,P〈0.01）。结论阿尔茨海默病照料者负担与患者认知损害的严重程度、病程、日常生活能力、是否合并精神行为异常及照料者性别有关。     

Sexuality in individuals with traumatic brain injury and their partners

Whilst previous research has detailed the impact of TBI on an individual’s sexuality, few studies have investigated couples’ sexuality where one partner has sustained a TBI. The study assessed sexual function in individuals with TBI and their partners. Fifty five individuals who had sustained TBI and their partners completed the Derogatis Interview for Sexual Function—Self Report (DISF-SR). All participants scored below the 50th percentile in relation to norms. Whilst participants with TBI obtained lower T-scores than partners on all subscales (except for sexual behaviour/experiences where scores were equivalent), as well as the total score, none of these differences was significant. Item analysis indicated that female participants with TBI reported significantly lower scores than female partners on frequency of having normal lubrication. Normative comparisons revealed that approximately one-third of individuals with TBI and one-fifth of their partners scored below the second percentile. Given the high frequency of sexual problems in individuals with TBI, which also impact their partners, addressing sexual problems should be a priority in rehabilitation and beyond.     

Posttraumatic amnesia and recall of a traumatic event following traumatic brain injury

The relationship between posttraumatic amnesia (PTA) and symptoms of posttraumatic stress disorder (PTSD) was examined in 282 outpatients at a mean of 53 days after traumatic brain injury (TBI). Patients were assessed for TBI severity, intrusive and avoidant PTSD-type symptoms, and psychological distress, and were stratified into four comparison groups by duration of PTA. Levels of PTSD-type symptoms and psychological distress did not differ significantly between groups. Even patients with PTA >1 week reported intrusive and avoidant PTSD-type symptoms. However, when patients were stratified into those with PTA of <1 hour or >1 hour, the former were more likely to report such symptoms. TBI patients with brief PTA are more likely to experience PTSD-type reactions, but severe TBI with prolonged PTA is not incompatible with such reactions in a subset of patients. Possible mechanisms that could account for this finding are discussed.     

Relationship of race/ethnicity to caregivers' coping, appraisals, and distress after traumatic brain injury

The objective of the current study was to determine the relationship between race/ethnicity and caregivers' coping, appraisals of the caregiving role, and distress after traumatic brain injury (TBI). Participants were 195 caregivers (75% white; 25% black/Hispanic) of persons with TBI who were admitted to comprehensive inpatient rehabilitation at one of three participating centers and were followed up at 1 year after injury. Caregivers completed interview and self-report questionnaires, including the Ways of Coping Questionnaire, Caregiver Appraisal Scale, and Brief Symptom Inventory. Compared to whites, blacks/Hispanics reported lower levels of education, lower annual household income, and were more likely to be caring for an extended family member. After adjusting for relationship to the person with injury, age, education and income, race/ethnicity significantly predicted caregivers' use of the coping strategies distancing and accepting responsibility. Blacks/Hispanics made greater use of these strategies compared to whites. Blacks/Hispanics also showed more traditional beliefs regarding the caregiving role. Race/ethnicity was not predictive of distress. However, an interaction was noted between race/ethnicity and caregiver ideology. For Blacks/Hispanics, more traditional ideology was associated with increased distress. Future research using a larger sample of non-whites and including measures of acculturation is warranted.     

Validating a Cantonese short version of the Zarit Burden Interview (CZBI-Short) for dementia caregivers

Objectives: The present study aimed to develop and validate a Cantonese short version of the Zarit Burden Interview (CZBI-Short) for Hong Kong Chinese dementia caregivers.

Methods: The 12-item Zarit Burden Interview (ZBI) was translated into spoken Cantonese and back-translated by two bilingual research assistants and face validated by a panel of experts. Five hundred Chinese dementia caregivers showing signs of stress reported their burden using the translated ZBI and rated their depressive symptoms, overall health, and care recipients' physical functioning and behavioral problems. The factor structure of the translated scale was identified using principal component analysis and confirmatory factor analysis; internal consistency and item-total correlations were assessed; and concurrent validity was tested by correlating the ZBI with depressive symptoms, self-rated health, and care recipients' physical functioning and behavioral problems.

Results: The principal component analysis resulted in 11 items loading on a three-factor model comprised role strain, self-criticism, and negative emotion, which accounted for 59% of the variance. The confirmatory factor analysis supported the three-factor model (CZBI-Short) that explained 61% of the total variance. Cronbach's alpha (0.84) and item-total correlations (rho = 0.39–0.71) indicated CZBI-Short had good reliability. CZBI-Short showed correlations with depressive symptoms (r = 0.50), self-rated health (r = ?0.26) and care recipients' physical functioning (r = 0.18–0.26) and disruptive behaviors (r = 0.36).

Conclusions: The 12-item CZBI-Short is a concise, reliable, and valid instrument to assess burden in Chinese dementia caregivers in clinical and social care settings.     

Initial examination of the psychometric properties of the short Hebrew version of the Zarit Burden Interview

Objectives: Given the sharp increase in individuals with cognitive and physical impairments, the evaluation of burden has become common in both caregiving research and clinical practice. The Zarit Burden Interview (ZBI) is the first and one of the most commonly used measures of caregiver burden. This study examines the psychometric properties and factor structure of a Hebrew version of Bédard et al.'s [Bédard, M., Molloy, D.W., Squire, L., Dubois, S., Lever, J.A., & O’Donnell, M. (2001). The Zarit Burden Interview: A new short version and screening version. The Gerontologist, 41, 652–657] short ZBI scale (ZBI-HS).

Methods: A total of 148 primary caregivers of individuals with cognitive and/or physical impairments completed the ZBI-HS. The factor structure of the ZBI-HS was assessed using exploratory factor analysis (EFA) and concurrent validity was examined.

Results: The EFA supported the two-factor structure as reported by Bédard et al. (2001 Bédard, M, Molloy, DW, Squire, L, Dubois, S, Lever, JA and O’Donnell, M. 2001. The Zarit Burden Interview: A new short version and screening version. The Gerontologist, 41: 652–657. [Crossref], [PubMed], [Web of Science ®] [Google Scholar]). Concurrent validity was supported by the ZBI-HS negative association with caregivers’ well-being and positive association with caregivers’ distress over behavioral problems of care-recipients.

Conclusion: These findings suggest that the short version of the ZBI-HS can be used as an effective tool for measuring caregiving burden.     

Traumatic brain injury caregivers: A qualitative analysis of spouse and parent perspectives on quality of life

The objective of this qualitative study was to examine how family caregivers of individuals with traumatic brain injury (TBI) describe their quality of life in the context of their caregiving role. Fifty-two caregivers of adults with moderate or severe TBI (n?=?31 parents, n?=?21 partners/spouses; 77% female; mean age?=?57.96 years, range?=?34–78 years) were recruited from three data collection sites to participate in focus groups. Thematic content analysis was used to identify two main meta-themes: Caregiver Role Demands and Changes in Person with TBI. Prominent sub-themes indicated that caregivers are (1) overburdened with responsibilities, (2) lack personal time and time for self-care, (3) feel that their life is interrupted or lost, (4) grieve the loss of the person with TBI, and (5) endorse anger, guilt, anxiety, and sadness. Caregivers identified a number of service needs. A number of sub-themes were perceived differently by partner versus parent caregivers. The day-to-day responsibilities of being a caregiver as well as the changes in the person with the TBI present a variety of challenges and sources of distress for caregivers. Although services that address instrumental as well as emotional needs of caregivers may benefit caregivers in general, the service needs of parent and partner caregivers may differ.     

The burden of spousal caregiving: A preliminary psychometric evaluation of the German version of the Zarit Burden Interview

Objectives: Despite a rapid increase in studies dealing with dementia caregivers in Europe, a valid German version of the most widely used measurement of caregiver burden (Zarit Burden Interview) has not yet been published. The purpose of this study is to evaluate the psychometric properties of the German Zarit Burden Interview (G-ZBI).

Method: Twenty-eight community-dwelling older couples with the husband suffering from dementia and the wife being the primary caregiver participated in this study. The G-ZBI and related constructs were assessed in order to test for reliability and construct validity.

Results: The G-ZBI revealed psychometric properties comparable with those of the original instrument and empirically validated translations. Results demonstrated high internal consistency (Cronbach's α 0.92) and good validity due to strong correlations with caregiver life satisfaction and depression, as well as patients’ dependency, neuropsychiatric symptoms, and dementia severity.

Conclusion: The psychometric qualities of the G-ZBI indicate that it is both a reliable and valid instrument to assess caregiver burden and to detect highly stressed individuals.     

Shenjing shuairuo and the DSM-IV: diagnosis, distress, and disability in a Chinese primary care setting

This study examines diagnostic concordance, symptomatology and disability among Chinese patients with shenjing shuairuo, ICD-10 neurasthenia, and DSM-IV diagnoses. Patients (N=139) with unexplained somatic complaints completed the Structured Clinical Interview for DSM-III (SCID), the Brief Symptom Inventory (BSI), and the Short Form 36 (SF-36). Shenjing shuairuo could be reclassified as DSM-IV undifferentiated somatoform disorder (30.6%) and somatoform pain disorder (22.4%); however, 44.9% did not qualify for a core DSM-IV diagnosis. Concordance of neurasthenia and shenjing shuairuo was significant (p < .001). Symptom distress and disability was similar to that reported by patients with somatoform and anxiety disorders. Within the Chinese context, shenjing shuairuo describes a heterogeneous group with clinically significant levels of disturbance and disability.     

Comparison of caregiver responses to English and Hebrew language versions of an abridged Zarit Burden Interview

The provision of informal care to infirm family members is of central importance to social gerontology; concomitantly, caregiver burden is a topic of considerable research interest. To this end, psychometrically sound instruments are required to advance cross-national research. The current study builds upon previous research examining the reliability and validity of responses to a brief Hebrew language version of the Zarit Burden Interview. For this study, factorial validity of responses to this instrument is examined relative to a representative English Canadian sample of caregivers. Invariance analyses comparing English and Hebrew responses support a 2-factor model of burden (role strain, personal strain); furthermore, invariance analyses comparing responses indicate that caregivers interpret and respond to the majority of items in a consistent manner. This finding suggests reliable translation of items from English to Hebrew. Caregiver burden is discussed in the context of changing demographics and the growing prevalence of disorders affecting older adults.     

Family caregiver burden and quality of home care in the context of the Long-Term Care insurance scheme: an overview

This review outlines the findings of 22 studies conducted between 1997 and 2005 by Arai and 19 collaborators regarding caregiver burden and assessment of quality of home care for the elderly. The published research covers the following: cross‐sectional studies on caregiver burden; changes in caregiver burden; appropriateness of the Long‐Term Care insurance assessment scheme; attitudes towards caregiving among caregivers; the development of the short Japanese version of the Zarit Caregiver Burden Interview (J‐ZBI_8); and the effectiveness of service use in reducing caregiver burden and development of a Home Care Quality Assessment Index (HCQAI).     

Longitudinal study of objective and subjective cognitive performance and psychological distress in OEF/OIF Veterans with and without traumatic brain injury

Objective: To describe changes in post-deployment objective and subjective cognitive performance in combat Veterans over 18 months, relative to traumatic brain injury (TBI) status and psychological distress. Method: This prospective cohort study examined 500 Veterans from Upstate New York at four time points, six months apart. TBI status was determined by a structured clinical interview. Neuropsychological instruments focused on attention, memory, and executive functions. Subjective cognitive complaints were assessed with the Neurobehavioral Symptom Inventory (NSI). A psychological distress composite included measures of post-traumatic stress disorder (PTSD), depression, and generalized anxiety. Results: Forty-four percent of the sample was found to have sustained military-related TBI, 97% of which were classified as mild (mTBI), with a mean time since injury of 41 months. Veterans with TBI endorsed moderate cognitive symptoms on the NSI. In contrast to these subjective complaints, mean cognitive test performance was within normal limits at each time point in all domains, regardless of TBI status. Multilevel models examined effects of TBI status, time, and psychological distress. Psychological distress was a strong predictor of all cognitive domains, especially the subjective domain. Substantial proportions of both TBI+ and TBI? groups remained in the clinically significant range at the initial and final assessment for all three distress measures, but the TBI+ group had higher proportions of clinically significant cases. Conclusions: Objective cognitive performance was generally within normal limits for Veterans with mTBI across all assessments. Psychological distress was elevated and significantly related to both objective and subjective cognitive performance.     

Assessment of Caregiver Inventory for Rett Syndrome

Rett syndrome (RTT) requires total caregiver attention and leads to potential difficulties throughout life. The Caregiver Burden Inventory, designed for Alzheimer disease, was modified to a RTT Caregiver Inventory Assessment (RTT CIA). Reliability and face, construct, and concurrent validity were assessed in caregivers of individuals with RTT. Chi square or Fisher’s exact test for categorical variables and t tests or Wilcoxon two-sample tests for continuous variables were utilized. Survey completed by 198 caregivers; 70 caregivers completed follow-up assessment. Exploratory factor analysis revealed good agreement for physical burden, emotional burden, and social burden. Internal reliability was high (Cronbach’s alpha 0.898). RTT CIA represents a reliable and valid measure, providing a needed metric of caregiver burden in this disorder.     

The Carers' Needs Assessment for Dementia (CNA-D): development, validity and reliability

BACKGROUND: A variety of interventions are available to support the caregivers of dementia patients. For the purposes of service planning, we developed an instrument to assess the needs of these caregivers and to determine whether needs are met. The reliability and validity of this new instrument was also investigated. METHODS: The development of the Carers' Needs Assessment for Dementia (CNA-D), was based on in-depth interviews and a focus group. The combined inter-rater and test-retest reliability was investigated among 45 dementia caregivers. Correlations of the CNA-D with the Zarit Burden Inventory were used to analyze concurrent validity. Content validity was investigated by performing a separate survey among 40 caregivers and 40 professionals. RESULTS: The CNA-D is a semi-structured research interview including 18 problem areas. For each problem area, the CNA-D offers several possible interventions. The relevance of the problem areas and the interventions (content validity) was confirmed by most of the study participants. Significant positive associations were found between the total score of the Zarit Burden Inventory and the number of problems and the number of unmet needs according to the CNA-D. The agreement between the interviewers was "excellent" (kappa above 0.75) in 73.7% of the problem areas and in 69.9% of the interventions. CONCLUSIONS: The CNA-D is a valid and reliable instrument for comprehensively assessing the needs of dementia caregivers.     

Burden and coping strategies in mothers of patients with schizophrenia in Japan

Aim:  The present study was conducted to identify factors contributing to burden of care in 57 mothers caring for patients with schizophrenia.
Methods:  Members of the Federation of Families of People with Mental Illness in Nagasaki Prefecture were evaluated using well-validated scales to evaluate burden of care (eight-item short version of the Japanese version of the Zarit Caregiver Burden Interview), general health status (General Health Questionnaire 12-item version), difficulty in life, coping strategies, emotional support, and understanding of mental illness and disorders.
Results:  Burden of care was significantly associated with general health status and difficulty in life.
Conclusion:  On multiple regression it was found that 'social interests' and 'resignation', both of which are the subscales of coping strategies, exerted significant and independent effects with respect to burden of care.     

Psychological distress and burden among female partners of combat veterans with PTSD

Psychological distress among cohabitating female partners of combat veterans with posttraumatic stress disorder (PTSD) was examined in a cross-sectional study using a modified version of the Health Belief Model. A convenience sample of 89 cohabitating female partners of male veterans in outpatient PTSD treatment was interviewed by telephone using a structured interview. Partners endorsed high levels of psychological distress with elevations on clinical scales at or exceeding the 90th percentile. Severe levels of overall psychological distress, depression, and suicidal ideation were prevalent among partners. Multivariate analyses revealed that perceived threat, recent mental health treatment, and level of involvement with veterans predicted global partner psychological distress. Partner burden was predicted by partner self-efficacy, perceived threat, barriers to mental health treatment, and partner treatment engagement. These findings are compelling since they demonstrate that partners of veterans with combat-related PTSD experience significant levels of emotional distress that warrant clinical attention. Psychological distress and partner burden were each associated with a unique combination of predictors, suggesting that although these constructs are related, they have distinct correlates and potentially different implications within the family environment. Future research should examine these constructs separately using causal modeling analyses to identify modifiable targets for interventions to reduce psychological distress among partners of individuals with PTSD.