TBI Rehabilitation and The Family

Transcription

1 TBI Rehabilitation and The Family Allison N. Clark, PhD Baylor College of Medicine TIRR Memorial Hermann March 16, 2011

2 Impact of TBI on the Family Emotional distress 1,2 Perceived stress and burden Depression Anxiety Disruption of family systems functioning 3,4 Family roles Communication Marital satisfaction

3 Impact of TBI on the Family Social adjustment 1 Increased seeking of help for mental health issues 5 Increased alcohol and/or substance use 5

4 Impact of TBI on the Family Increased dependence on caregivers 6 Transportation Finances Leisure Emotional support Employment of uninjured caregiver 7

5 Factors Impacting Family Adjustment Patient variables 1,2,4 Severity of impairments and disability Emotional and behavioral Cognitive Physical Social isolation Chronicity

6 Factors Impacting Family Adjustment Family variables 8-10 Coping styles Relationship to person with injury Pre-injury functioning Caregiving role Social supports Practical supports 11 Financial resources 5

7 Importance of Family and Caregivers in TBI Rehabilitation Aspects of the environment can impact outcome following TBI. Family is an aspect of immediate environment that can aid or impede community integration.

8 Importance of Family and Caregivers in TBI Rehabilitation Caregivers assist with reintegration into the home and community. Caregivers are in a unique position to assist the person with injury in compensating for cognitive and emotional problems.

9 Family and TBI Outcomes Preinjury family and caregiver characteristics interact with injury severity to affect community integration outcomes. 12 Family functioning associated with progress in post-acute rehabilitation program. 13

10 Training Caregivers to Implement Strategies Smith and Godfrey (1995) Home-based training in stress management and management of neurobehavioral problems Decreased symptom-related distress & depression, increased self-esteem, fewer doctor visits Carnevale et al. (2002) Home-based education and training in behavior management to reduce target behaviors Decreased frequency of target behaviors Sander et al. (2009) Videoconferencing to train caregivers to help family member compensate for cognitive problems and manage behavioral issues High level of satisfaction, comfort, perceived utility

11 Collaboration with Families Sohlberg et al. (2001) Phase I: initial interview learn family s background, needs and issues Phase II: identify and prioritize goals Help determine priorities Teach families to systematically observe events in their environment relevant to the issues of concern Provide feedback on trends family observed Phase III: monitoring change and revisiting goals Provide feedback on trends family observed Offer suggestions for strategies and help generate methods to monitor outcome of strategy Revisit goals, monitor issues

12 TBI Rehabilitation and the Family Family involvement in rehabilitation Stage of recovery Decreasing lengths of stay Awareness of deficits Expectations, beliefs regarding disability and recovery Caregivers vary in adjustment and need for services

13 TBI Rehabilitation and the Family Strong need for training caregivers in management of neurobehavioral problems Family-based interventions should be reimbursed Address injury-related burden and general stress management Identification of families at risk Refer for appropriate services Ongoing monitoring, support, and practical assistance

14 Cognitive Rehabilitation: Use of Technology Service delivery Consultation Monitoring/assessment Therapy Methods Telephone 14 Videoconference 15 Web-based programs 16 Videophone 17

15 Cognitive Rehabilitation: Use of Technology Cognitive rehabilitation Training Compensatory strategy Methods Computerized training programs 18,19 Portable technology Smart phones 20 Portable voice recorder 21 Pager 22

16 References 1. Marsh NV, Kersel DA, Havill JH, Sleigh JW. Caregiver burden during the year following severe traumatic brain injury. Journal of Clinical and Experimental Neuropsychology 2002;24: Ponsford J, Schönberger M. Family functioning and emotional state two and five years after traumatic brain injury. Journal of the International Neuropsychological Society 2010;16: Kreutzer JS, Gervasio AH, Campliar PS. Primary caregivers psychological status and family functioning after traumatic brain injury. Brain Injury 1994;8: Testa JA, Malec JF, Moessner AM, Brown AW. Predicting family functioning after TBI: Impact of Neurobehavioral Factors. Journal of Head Trauma Rehabilitation 2006;21: Hall KM, Karzmark P, Stevens M, Englander J, O Hare P, Wright J. Family stressors in traumatic brain injury: A two-year follow-up. Archives of Physical Medicine and Rehabilitation 1994;75: Jacob HE. The Los Angeles Head Injury Survey: Procedures and initial findings. Archives of Physical Medicine and Rehabilitation 1988;69: Chan J. Carers perspective on respite for persons with acquired brain injury. International Journal of Rehabilitation Research 2007;30: Sander AM, High W, Hannay HJ, Sherer M. Predictors of psychological health in caregivers of patients with closed head injury. Brain Injury 1997;11: Hanks RA, Rapport LJ, Vangel S. Caregiving appraisal after traumatic brain injury: The effects of functional status, coping style, social support and family functioning. NeuroRehabilitation 2007;22: Vangel SJ, Rapport LJ, Hanks RA. Effects of family and caregiver psychosocial functioning on outcomes in persons with traumatic brain injury. Journal of Head Trauma Rehabilitation 2011;26: Ergh TC, Hanks RA, Rapport LJ, Coleman RD. Social support moderates caregiver life satisfaction following traumatic brain injury. Journal of Clinical and Experimental Neuropsychology 2003;25: Sady MD, Sander AM, Clark AN, Sherer M, Nakase-Richardson R, Malec JF. Relationship of preinjury caregiver and family functioning to community integration in adults with traumatic brain injury. Archives of Physical Medicine and Rehabilitation 2010;91: Sander AM, Caroselli JS, High WM Jr, Becker C, Neese L, Scheibel R. Relationship of family functioning to progress in a post-acute rehabilitation programme following traumatic brain injury. Brain Injury 2002;16: Bell KR, Temkin NR, Esselman PC, Doctor JN, Bombardier CH, Fraser RT, Hoffman JM, Powell JM, Dikmen S.The effect of a scheduled telephone intervention on outcome after moderate to severe traumatic brain injury: A randomized trial. Archives of Physical Medicine and Rehabilitation 2005:86: Sander AM, Clark AN, Atchison TB, Rueda M. A web-based videoconferencing approach to training caregivers in rural areas to compensate for problems related to traumatic brain injury. Journal of Head Trauma Rehabilitation 2009;24: Wade SL, Wolfe C, Brown TM, Pestian JP. Putting the pieces together: Preliminary efficacy of a web-based family intervention for children with traumatic brain injury. Journal of Pediatric Psychology 2005:30: Hauber RP, Jones ML. Telerehabilitation support for families at home caring for individuals in prolonged states of reduced consciousness. Journal of Head Trauma Rehabilitation 2002:17: Sohlberg MM, Mateer CA. Effectiveness of an attentional training program. Journal of Clinical and Experimental Neuropsychology 1987;9: Sohlberg MM, McLaughlin KA, Pavese A, Heidrich A, Posner MI. Evaluation of attention process training and brain injury education in persons with acquired brain injury. Journal of Clinical and Experimental Neuropsychology 2000;22: Stapleton S, Adams M, Atterton L. A mobile phone as a memory aid for individuals with traumatic brain injury: A preliminary investigation. Brain Injury 2007;21: Hart T, Hawkey K, Whyte J. Use of a portable voice organizer to remember therapy goals in traumatic brain injury rehabilitation: A within-subjects trail. Journal of Head Trauma Rehabilitation 2002;17: Wilson BA, Emslie HC, Quirk K, Evans JJ. Reducing everyday memory and planning problems by means of a paging system: A randomized control crossover study. Journal of Neurology, Neurosurgery & Psychiatry 2001;70:

17 Thank You Allison N. Clark, PhD Baylor College of Medicine TIRR Memorial Hermann P: