NeuroRehabilitation - Volume 27, issue 1

Authors: Arango-Lasprilla, Juan Carlos | Kreutzer, Jeffrey

Article Type: Editorial

DOI: 10.3233/NRE-2010-0576

Citation: NeuroRehabilitation, vol. 27, no. 1, pp. 1-3, 2010

Authors: Gan, Caron | Gargaro, Judith | Brandys, Clare | Gerber, Gary | Boschen, Kathryn

Article Type: Research Article

Abstract: There is a dearth of support for family members who assume caregiving responsibilities following acquired brain injury (ABI). This qualitative study broadens the understanding of ABI caregiver support needs through data triangulation from multiple interview sources across different settings. Thirty-nine caregivers across urban and rural settings in Ontario participated in focus groups. Interviews focused on ABI support services received, their utility, access barriers, needed supports, and suggestions for service delivery. Key informant interviews were also held with four US researchers funded through the TBI Model Systems, one Canadian provincial government health official, and representatives from 11 Ontario ABI programs including …two brain injury associations. Interviews focused on existing or proposed caregiver programs and gaps in services. A coding framework was developed through content analysis, centring on five themes: coping, supports that worked, supports needed, barriers, and ideal world recommendations. Perspectives from those involved in receiving, providing and researching caregiver interventions following ABI were synthesized to provide a thorough, detailed depiction of the ongoing support needs of caregivers. This convergence of evidence underscores that caregiver support needs transcend geographical boundaries and must be comprehensive, accessible, long-term, and encompass education, emotional, and instrumental support. Recommendations for ABI caregiver support services are offered. Show more

Keywords: Acquired brain injury, family needs, caregiver support, focus groups

DOI: 10.3233/NRE-2010-0577

Citation: NeuroRehabilitation, vol. 27, no. 1, pp. 5-18, 2010

Authors: Kreutzer, Jeffrey S. | Stejskal, Taryn M. | Godwin, Emilie E. | Powell, Victoria D. | Arango-Lasprilla, Juan Carlos

Article Type: Research Article

Abstract: Objective: To describe and compare caregivers’ and patients’ helpfulness and goal attainment ratings of the Brain Injury Family Intervention (BIFI), and qualitatively evaluate their perceptions of most important things learned. Methods: 76 caregivers and 76 patients with acquired brain injury participated in the BIFI, a structured family intervention program which includes educational, skill building, and psychological support components. Outcome measures were obtained following each of the five intervention sessions and following completion of the entire program. Results: Session helpfulness ratings for caregivers and patients were uniformly high as were ratings of the extent to which session …goals were met. Between group comparisons did not indicate differences for individual session helpfulness or goal attainment ratings. Qualitative analysis of most important things learned provided corroboratory evidence that BIFI topics were relevant and consistent with program goals. Conclusions: The present investigation provides evidence that the BIFI is perceived as helpful and that treatment methods facilitate achievement of goals. The investigation also suggests that investigators may benefit from using mixed methods to evaluate outcomes, complementing traditional quantitative methods with qualitative approaches. Show more

Keywords: Traumatic brain injury, caregivers, family intervention, family therapy

DOI: 10.3233/NRE-2010-0578

Citation: NeuroRehabilitation, vol. 27, no. 1, pp. 19-29, 2010

Authors: Butera-Prinzi, Franca | Charles, Nella | Heine, Kate | Rutherford, Brenda | Lattin, Diane

Article Type: Research Article

Abstract: Introduction: The Family To Family Link Up Program (f2f Link Up) is a pilot program aimed to promote connections between families who have a family member with an Acquired Brain Injury. Methods: A total of 46 families participated in the program coordinated by The Bouverie Centre in Melbourne Victoria. Link-Ups, involving one or several sessions with members from two or more families. Link-Ups were conducted by Victorian metropolitan and regional ABI workers who were trained as Link-Up facilitators. A co-operative inquiry action research methodology was used to provide insights into the development and implementation of the program. Qualitative …and quantitative data were collected from families and facilitators on the effectiveness of the program and their experience of each Link Up session. Results: Evaluation of the program showed positive impacts for both families and facilitators and provided useful feedback on program implementation issues, benefits and constraints of the program. Conclusions: The opportunity to meet other families in brief, time-limited contacts with a trained facilitator is a useful and needed addition to a range of supports that might assist families caring for a member with an acquired brain injury. Show more

Keywords: Family support, community program, brain injury

DOI: 10.3233/NRE-2010-0579

Citation: NeuroRehabilitation, vol. 27, no. 1, pp. 31-47, 2010

Authors: Chronister, Julie | Chan, Fong | Sasson-Gelman, E. Joy | Chiu, Chung-Yi

Article Type: Research Article

Abstract: The purpose of this study was to determine the degree to which stress-coping variables contribute to quality of life (QOL) among caregivers of individuals with traumatic brain injury (TBI). This study examined the direct effects of the following variables: functional competency, caregiving appraisal, coping, perceived social support, and family needs on QOL. In addition, the unique variance accounted for in QOL by each set was investigated, and whether perceived social support, coping, and family needs mediate or moderate the relationship between caregiving appraisal and QOL. The sample consisted of 108 caregivers recruited from support groups who were predominantly white females. …The majority of care-recipients had a severe head injury. Measures administered were the Interpersonal Support Evaluation List, Family Needs Questionnaire, Modified Caregiving Appraisal Scale, and the World Health Organization Quality of Life – Brief Version. Results showed that the full model accounted for 68% of the variance in QOL; caregiving appraisal, perceived social support and family needs remained significant after other stress-coping variables were partialled; and of these sets, emotional social support, social needs, and perceived burden were the significant individual predictors. Emotional social support and social needs mediated the relationship between perceived burden and QOL. Show more

DOI: 10.3233/NRE-2010-0580

Citation: NeuroRehabilitation, vol. 27, no. 1, pp. 49-62, 2010

Authors: Wade, Shari L. | Walz, Nicolay C. | Cassedy, Amy | Taylor, H. Gerry | Stancin, Terry | Yeates, Keith Owen

Article Type: Research Article

Abstract: Introduction: Research suggests that pediatric TBI results in injury-related stress and burden and psychological distress for parents. However, existing studies have focused almost exclusively on mothers, so that we know relatively little about the impact of childhood TBI on fathers. Specific aims: The aims were to prospectively examine differences in maternal and paternal response to early childhood TBI over time relative to a comparison cohort of mothers and fathers of children with orthopedic injuries (OI). Methods: The concurrent cohort/prospective research design involved repeated assessments of children aged 3–6 years with TBI or OI requiring hospitalization and …their families. Shortly after injury and at 6, 12, and 18 months post injury, parents of 48 children with TBI (11 severe and 37 moderate) and 89 with OI completed standardized assessments of injury-related stress and burden, parental distress, and coping strategies. Mixed models analyses and Generalized Estimating Equations examined differences in maternal versus paternal burden, distress, and coping over time. The analyses included interactions of parent sex with group (severe TBI, moderate TBI, OI) and time since injury, to examine the moderating effects of injury severity on parental response to injury over time. Results: Fathers were more likely than mothers to use denial to cope following moderate and severe TBI, but not OI. Conversely, mothers were more likely to prefer acceptance and emotion-focused strategies than fathers regardless of the type of injury. The use of active coping strategies varied as a function of injury type, parent sex, and time since injury. Fathers reported greater injury-related stress and distress than mothers over time, with pronounced differences in the severe TBI and OI groups. Conclusions: Mothers and fathers appear to respond differently following TBI. The different types of responses may serve to exacerbate emerging family dysfunction. Show more

DOI: 10.3233/NRE-2010-0581

Citation: NeuroRehabilitation, vol. 27, no. 1, pp. 63-72, 2010

Authors: Livingston, Lee A. | Kennedy, Richard E. | Marwitz, Jennifer H. | Arango-Lasprilla, Juan C. | Rapport, Lisa J. | Bushnik, Tamara | Gary, Kelli W.

Article Type: Research Article

Abstract: Objective: To determine predictors of family caregiver life satisfaction at one and two years after traumatic brain injury (TBI). Methods: Prospective collaborative longitudinal study of 336 family members caring for individuals with TBI participating in the National Institute on Disability and Rehabilitation Research (NIDRR) designated TBI Model Systems of Care (TBIMS). Survivors’ medical and demographic information was obtained from the TBIMS database. Follow-up interviews were completed with both survivors and family caregivers at 1 year and 2 years post injury. The primary outcome variable, caregiver life satisfaction, was measured with the Satisfaction with Life Scale (SWLS). …Results: Repeated measures ordinal logistic regression showed that survivors’ functional status at discharge, drug use, and neurobehavioral problems were significant predictors of family caregivers’ life satisfaction at 1 and 2 years post injury. Conclusions: Family members of individuals with TBI often experience reduced life satisfaction in the first 2 years following their relatives’ TBI. Psychiatric and neurobehavioral problems, such as drug use and depression, as well as motor dysfunction in survivors may be important contributors to decreased life satisfaction among their caregivers. Show more

Keywords: Traumatic brain injury, caregivers, life satisfaction, family functioning

DOI: 10.3233/NRE-2010-0582

Citation: NeuroRehabilitation, vol. 27, no. 1, pp. 73-81, 2010

Authors: Arango-Lasprilla, Juan Carlos | Plaza, Silvia Leonor Olivera | Drew, Allison | Romero, Jose Libardo Perdomo | Pizarro, Jose Anselmo Arango | Francis, Kathryn | Kreutzer, Jeffrey

Article Type: Research Article

Abstract: Objective: 1) To determine the most frequent needs in a group of family caregivers of individuals with spinal cord injury in Neiva Colombia; 2) to describe caregivers’ psychosocial functioning; and 3) to examine the relationship between caregiver needs and caregiver psychosocial functioning. Design: Cross-sectional. Participants/Methods: 37 caregivers completed a caregiver needs questionnaire composed of 27 questions (1–5 scale) and 9 sub-scales (emotional, information, economic, community, and household support, respite, physical health, sleep, and psychological health). The Patient Health Questionnaire (PHQ-9) was used to measure caregiver depression, the Zarit Burden Interview (ZBI) measured stress, the Interpersonal Support …Evaluation List Short Version (ISEL-12) measured social support, and the Satisfaction With Life Scale (SWLS) was used to assess satisfaction with life. Results: Information, economic, emotional, community support, and respite needs were most frequently reported among this group of Colombian caregivers. Forty-three percent of the family caregivers reported some level of depression, 68% reported being overwhelmed by their caretaking responsibilities, and 43% reported dissatisfaction with their lives. Information, emotional, economic, physical, sleep, and psychological needs were positively correlated with depression and burden. Those with more household, physical, sleep, economic, and psychological needs had less satisfaction with life and social support. Caregivers with more community and respite needs had less social support, while those with more emotional needs had less satisfaction with life. Caregivers with more respite needs had more burden and those with more household needs had more depression. Conclusion: Approximately half of the sample reports some level of burden, depression, or being dissatisfied with life. Psychosocial functioning was related to various family needs. Further longitudinal research is needed to determine whether caregivers with more needs report worse psychosocial functioning or if those with worse psychosocial functioning report more needs. Show more

Keywords: Spinal cord injuries, caregivers, outcome assessment

DOI: 10.3233/NRE-2010-0583

Citation: NeuroRehabilitation, vol. 27, no. 1, pp. 83-93, 2010

Authors: Clark, Allison N. | Sander, Angelle M. | Pappadis, Monique R. | L.Evans, Gina | truchen, Margaret A. S | Chiou-Tan, Faye Y.

Article Type: Research Article

Abstract: The purpose of the current study was to investigate the contribution of caregivers' characteristics to health service utilization by minority persons with first episode stroke. Participants were 61 primary caregivers of minority persons (41% African American; 59% Hispanic) with first episode symptomatic stroke consecutively admitted to an inpatient rehabilitation unit at a county hospital. Caregiver characteristics included resources for daily living, general health, social support, and health beliefs. Health service utilization was defined as the percentage of medical and therapy appointments attended for the first 6 months following discharge from inpatient rehabilitation. There was no difference in percentage of appointments …attended between African American and Hispanic caregivers. There was a significant difference between caregivers on the External Control by Powerful Others subscale of the Multidimensional Health Locus of Control Scale (MHLC), with Hispanic caregivers reporting a greater belief that powerful others exerted control over their health. There was a trend for Hispanics to score higher on the External Control by Chance subscale of the MHLC. Results of logistic regression analyses indicated that persons with stroke were less likely to attend appointments if their caregiver believed that health was related to chance factors. These results suggest that caregiver health beliefs play an important role in patient adherence to medical recommendations. Education of caregivers may result in improved follow-through with medical recommendations. Show more

Keywords: Stroke, caregivers, health service utilization, race/ethnicity

DOI: 10.3233/NRE-2010-0584

Citation: NeuroRehabilitation, vol. 27, no. 1, pp. 95-104, 2010

Authors: Ramkumar, Neeta A. | Elliott, Timothy R.

Article Type: Research Article

Abstract: Family caregivers of persons following neurotrauma function as de facto extensions of our health care system. Their challenges may result in negative consequences for their physical and mental health, which directly impacts the well-being of their care-recipient. In this paper, we survey current practices in providing caregiver support, outline considerations for developing collaborative interventions, and make recommendations for assessing intervention effectiveness consistent with the nature of the adjustment processes among caregivers and care recipients.

Keywords: Caregivers, neurotrauma, spinal cord injury, brain injury, rehabilitation

DOI: 10.3233/NRE-2010-0585

Citation: NeuroRehabilitation, vol. 27, no. 1, pp. 105-112, 2010