Current needs, the future of adolescents and young adults having sustained a moderate or severe Traumatic Brain Injury (TBI) and the potential of their social participation
Affiliation(s)
Rehabilitation Institute of Quebec City (IRDPQ), Quebec City, Canada. Centre for Interdisciplinary Research on Rehabilitation and Social Integration (CIRRIS), Quebec City, Canada.
Rehabilitation Institute of Quebec City (IRDPQ), Quebec City, Canada. Centre for Interdisciplinary Research on Rehabilitation and Social Integration (CIRRIS), Quebec City, Canada.
ABSTRACT
The general objective of this study is to identify the specific needs of youths who have suffered a moderate or severe traumatic brain injury (TBI) and their levels of life habit accomplishments. The secondary objective aims to identify how they view themselves in the future with regard to their life habits. Eighteen young persons with moderate or severe TBIs aged 14 to 20 completed questionnaires based on the Life-Habits questionnaire and elaborated on their current level of satisfaction and their visions of the future. Teenagers reported that maintaining good interpersonal relationships, being autonomous, fulfilling their responsibilities, warding off lone-liness, as well as being supported in their efforts to reach a satisfying response to their needs and concerns were their highest priorities. In order to increase their satisfaction related to life habits they suggest improving external factors, such as information concerning TBIs to their entourage. They see themselves as complete social participants in the future. Youths with moderate or severe TBIs identified their needs and envisioned their future to be like that of any other teenager and young adult. They hope to start a family and find a good job. They also identified strategies to improve their life habits.
The general objective of this study is to identify the specific needs of youths who have suffered a moderate or severe traumatic brain injury (TBI) and their levels of life habit accomplishments. The secondary objective aims to identify how they view themselves in the future with regard to their life habits. Eighteen young persons with moderate or severe TBIs aged 14 to 20 completed questionnaires based on the Life-Habits questionnaire and elaborated on their current level of satisfaction and their visions of the future. Teenagers reported that maintaining good interpersonal relationships, being autonomous, fulfilling their responsibilities, warding off lone-liness, as well as being supported in their efforts to reach a satisfying response to their needs and concerns were their highest priorities. In order to increase their satisfaction related to life habits they suggest improving external factors, such as information concerning TBIs to their entourage. They see themselves as complete social participants in the future. Youths with moderate or severe TBIs identified their needs and envisioned their future to be like that of any other teenager and young adult. They hope to start a family and find a good job. They also identified strategies to improve their life habits.
Cite this paper
Katia, S. , Normand, B. and Céline, L. (2014) Current needs, the future of adolescents and young adults having sustained a moderate or severe Traumatic Brain Injury (TBI) and the potential of their social participation. Open Journal of Therapy and Rehabilitation, 2, 45-55. doi: 10.4236/ojtr.2014.21009.
Katia, S. , Normand, B. and Céline, L. (2014) Current needs, the future of adolescents and young adults having sustained a moderate or severe Traumatic Brain Injury (TBI) and the potential of their social participation. Open Journal of Therapy and Rehabilitation, 2, 45-55. doi: 10.4236/ojtr.2014.21009.
References
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http://dx.doi.org/10.1080/02699050902970760 [2] Turskra, L.S. (2000) Should my skirt be tucked in or left out? The communication context of adolescence. Aphasiology, 14, 349-364. http://dx.doi.org/10.1080/026870300401405 [3] Brenner, L.A., Dise-Lewis, J.E., Bartles, S.K., O’Brien, S.E., Godleski, M. and Selinger, M. (2007) The long-term impact and rehabilitation of pediatric traumatic brain injury: A 50-year follow-up case study. Journal of Head Trauma rehabilitation, 22, 56-64. http://dx.doi.org/10.1097/00001199-200701000-00007 [4] Van Tol, E., Gorter, J.W., DeMatteo, C. and Meester-Delver, A. (2011) Participation outcomes for children with acquired brain injury: A narrative review. Brain Injury, 25, 1279-1287.
http://dx.doi.org/10.3109/02699052.2011.613089 [5] Anaby, D., Law, M., Hanna, S. and Dematteo, C. (2012) Predictors of change in participation rates following acquired brain injury: Results of a longitudinal study. Developmental Medicine and Child Neurology, 54, 339-346. http://dx.doi.org/10.1111/j.1469-8749.2011.04204.x [6] Coleman, J.C. and Hendry L.B. (1999) The nature of adolescence. 3rd Edition, Routledge, New York. [7] Soo, C., Tate, R.L., Anderson, V. and Waugh, M.-C. (2010) Assessing care and support needs for children with acquired brain injury: Normative data for the paediatric care and needs. Brain Impairment, 4, 183-196. http://dx.doi.org/10.1375/brim.11.2.183 [8] Anderson, V.A., Catroppa, C., Dudgeon, P., Morse, S.A., Haritou, F. and Rosenfeld, J.V. (2006) Understanding predictors of functional recovery and outcome 30 months following early childhood head injury. Neuropsychology, 20, 42-57. http://dx.doi.org/10.1037/0894-4105.20.1.42 [9] Rivara, F.P., et al. (2011) Disability 3, 12, and 24 months after traumatic brain injury among children and adolescents. Pediatrics, 128, e1129-e1138. http://dx.doi.org/10.1542/peds.2011-0840 [10] Ewing-Cobbs, L., Prasad, M., Fletcher, J., Levin, H.S., Miner, M.E. and Eisenberg, H.M. (1998) Attention after pediatric traumatic brain injury: A multidimensional assessment. Child Neuropsychology, 4, 35-40. http://dx.doi.org/10.1076/chin.4.1.35.3194 [11] Hanten, G., Bartha, M. and Levin, H.S. (2000) Metacognition following pediatric traumatic brain injury: A preliminary study. Developmental Neuropsychology, 18, 383-398.
http://dx.doi.org/10.1207/S1532694206Hanten [12] Taylor, H.G., Yeates, K.O., Wade, S.L., Drotar, D., Stancin, T. and Minich, N.A. (2002) Prospective study of short-and long-term outcomes after traumatic brain injury in children: Behavior and achievement. Neuropsychology, 16, 15-27.
http://dx.doi.org/10.1037/0894-4105.16.1.15 [13] Fougeyrollas, P., Cloutier, R., Bergeron, H., Côté, J. and St-Michel, G. (1998) Classification québécoise. Processus de production du handicap. RIPPH/SCCIDIH, Québec. [14] Gauvin-Lepage, J. and Lefebvre, H. (2010) Social inclusion of persons with moderate head injuries: The points of view of adolescents with brain injuries, their parents and professionals. Brain Injury, 24, 1087-1097. http://dx.doi.org/10.3109/02699052.2010.494593 [15] Gagnon, I., Swaine, B., Champagne, F. and Lefebvre, H. (2008) Perspectives of adolescents and their parents regarding service needs following a mild traumatic brain injury. Brain Injury, 22, 161-173. http://dx.doi.org/10.1080/02699050701867381 [16] Rotondi, A.J., Sinkule, J., Balzer, K., Harris, J. and Moldovan, R. (2007) A qualitative needs assessment of persons who have experienced traumatic brain injury and their primary family caregivers. Journal of Head Trauma Rehabilitation, 22, 14-25. http://dx.doi.org/10.1097/00001199-200701000-00002 [17] Heinemann, A.W., Sokol, K., Garvin, L. and Bode, R.K. (2002) Measuring unmet needs and services among persons with traumatic brain injury. Archives of Physical and Medical Rehabilitation, 83, 1052-1059. http://dx.doi.org/10.1053/apmr.2002.34283 [18] Lefebvre, H. and Levert, M.-J. (2012) The close relatives of people who have had a traumatic brain injury and their special needs. Brain Injury, 26, 1084-1087. http://dx.doi.org/10.3109/02699052.2012.666364 [19] Corrigan, J.D. (2001) Conducting statewide needs assessments for persons with traumatic brain injury. Journal of Head Trauma Rehabilitation, 16, 1-19. http://dx.doi.org/10.1097/00001199-200102000-00004 [20] Brooks, C.A., Gabella, B., Hoffman, R., Sosin, D. and Whiteneck, G. (1997) Traumatic brain injury: Designing and implementing a population-based follow-up system. Journal of Head Trauma Rehabilitation, 78, s26-s30. [21] Gervais, M. and Dubé, S. (1999) étude exploratoire des besoins en services offerts à la clientèle traumatisée cranio-cérébrale au Québec. Research Dissertation, Laval University and Institut de Réadaptation en Déficience Physique de Québec, Quebec City. [22] Petersen, C., Scherwath, A., Fink, J. and Koch, U. (2008) Health care needs of children and adolescents with a traumatic brain injury. Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitss-chutz, 51, 629-636. http://dx.doi.org/10.1007/s00103-008-0536-3 [23] Société de l’Assurance Automobile du Québec (2008) Bilan routier. Quebec Governement, Quebec City. [24] Noreau, L. (2004) Measuring social participation: Reliability of the LIFE-H in older adults with disabilities. Disability and Rehabilitation, 26, 346-352. http://dx.doi.org/10.1080/09638280410001658649 [25] Fougeyrollas, P., Noreau, L. and St-Michel, G. (1997) Measure of life habits: User’s manual. International Network on the Disability Creation Process, Quebec City. [26] Miles, J. and Shelvin, M. (2001) Applying regression and correlation: A guide for students and researchers. Sage, London. [27] Turkstra, L.S. (2008) Conversation-based assessment of social cognition in adults with traumatic brain injury. Brain Injury, 22, 397-409. http://dx.doi.org/10.1080/02699050802027059 [28] Green, L., Godfrey, C., Soo, C., Anderson, V. and Catroppa, C. (2012) Agreement between parent-adolescent ratings on psychosocial outcome and quality-of-life following childhood traumatic brain injury. Developmental Neurorehabilitation, 15, 105-113. http://dx.doi.org/10.3109/17518423.2011.638331 [29] Rapport, L.J., Bryer, R.C. and Hanks, R.A. (2008) Driving and community integration after traumatic brain injury. Archives of Physical Medicine Rehabilitation, 89, 922-930.
http://dx.doi.org/10.1016/j.apmr.2008.01.009 [30] Lefebvre, H., Cloutier, G. and Levert, M.-J. (2008) Perspectives of survivors of traumatic brain injury and their caregivers on long-term social integration. Brain Injury, 22, 535-543.
http://dx.doi.org/10.1080/02699050802158243 [31] Rosema, S., Crowe, L. and Anderson, V. (2012) Social function in children and adolescents after traumatic brain injury: A systematic review 1989-2011. Journal of Neurotrauma, 29, 1277-1291.
http://dx.doi.org/10.1089/neu.2011.2144 [32] Willemse-van Son, A.H., Ribbers, G.M., Hop, W.C. and Stam, H.J. (2009) Community integration following moderate to severe traumatic brain injury: A longitudinal investigation. Journal of Rehabilitation Medicine, 41, 521- 527. http://dx.doi.org/10.2340/16501977-0377 [33] Beauchamp, M.H. and Anderson, V. (2010) SOCIAL: An integrative framework for the development of social skills. Psychological Bulletin, 136, 39-64. http://dx.doi.org/10.1037/a0017768 [34] Yeates, K.O., et al. (2007) Social outcomes in childhood brain disorder: A heuristic integration of social neuroscience and developmental psychology. Psychological Bulletin, 133, 535-556.
http://dx.doi.org/10.1037/0033-2909.133.3.535 [35] Cole, W.R., Paulos, S.T., Cole, C.A.S. and Tankard, C. (2009) A review of family intervention guidelines for pediatric acquired brain injuries. Developmental Disabilities Research Reviews, 15, 159-166. http://dx.doi.org/10.1002/ddrr.58 [36] Ponsford, J., Olver, J., Ponsford, M. and Nelms, R. (2003) Long-term adjustment of families following traumatic brain injury where comprehensive rehabilitation has been provided. Brain Injury, 17, 453-468. http://dx.doi.org/10.1080/0269905031000070143 [37] Cicerone, K.D., et al. (2008) A randomized controlled trial of holistic neuropsychologic rehabilitation after traumatic brain injury. Archives of Physical Medicine Rehabilitation, 89, 2239-2249.
http://dx.doi.org/10.1016/j.apmr.2008.06.017 [38] Cicerone, K.D., Mott, T., Azulay, J. and Friel, J.C. (2004) Community integration and satisfaction with functioning after intensive cognitive rehabilitation for traumatic brain injury. Archives of Physical Medicine Rehabilitation, 85, 943-950. http://dx.doi.org/10.1016/j.apmr.2003.07.019 [39] Burchardt, T. (2004) Aiming high: The educational and occupational aspirations of young disabled people. Support for Learning, 19, 181-186. http://dx.doi.org/10.1111/j.0268-2141.2004.00345.x [40] Anderson, V., Brown, S., Newitt, H. and Hoile, H. (2009) Educational, vocational, psychosocial, and quality-of-life outcomes for adult survivors of childhood traumatic brain injury. Journal of Head Trauma Rehabilitation, 24, 303- 312. http://dx.doi.org/10.1097/HTR.0b013e3181ada830 [41] Glang, A., Todis, B., Thomas, C.W., Hood, D., Bedell, G. and Cockrell, J. (2008) Return to school following childhood TBI: Who gets services? NeuroRehabilitation, 23, 477-486. [42] Todis, B., Glang, A., Bullis, M., Ettel, D. and Hood, D. (2011) Longitudinal Investigation of the post-high school transition experiences of adolescents with traumatic brain injury. Journal of Head Trauma Rehabilitation, 26, 138- 149. http://dx.doi.org/10.1097/HTR.0b013e3181e5a87a [43] Souza, L.M.N., Braga, L.W., Filho, G.N. and Dellatolas, G. (2007) Quality-of-life: Child and parent perspectives following severe traumatic brain injury. Developmental Neuroprehabilitation, 10, 35-47. http://dx.doi.org/10.1080/13638490600822239
[1] Lamontagne, M.-E., Ouellet, M.-C. and Simard, J.-F. (2009) A descriptive portrait of human assistance required by individuals with brain injury. Brain Injury, 23, 693- 701.
http://dx.doi.org/10.1080/02699050902970760 [2] Turskra, L.S. (2000) Should my skirt be tucked in or left out? The communication context of adolescence. Aphasiology, 14, 349-364. http://dx.doi.org/10.1080/026870300401405 [3] Brenner, L.A., Dise-Lewis, J.E., Bartles, S.K., O’Brien, S.E., Godleski, M. and Selinger, M. (2007) The long-term impact and rehabilitation of pediatric traumatic brain injury: A 50-year follow-up case study. Journal of Head Trauma rehabilitation, 22, 56-64. http://dx.doi.org/10.1097/00001199-200701000-00007 [4] Van Tol, E., Gorter, J.W., DeMatteo, C. and Meester-Delver, A. (2011) Participation outcomes for children with acquired brain injury: A narrative review. Brain Injury, 25, 1279-1287.
http://dx.doi.org/10.3109/02699052.2011.613089 [5] Anaby, D., Law, M., Hanna, S. and Dematteo, C. (2012) Predictors of change in participation rates following acquired brain injury: Results of a longitudinal study. Developmental Medicine and Child Neurology, 54, 339-346. http://dx.doi.org/10.1111/j.1469-8749.2011.04204.x [6] Coleman, J.C. and Hendry L.B. (1999) The nature of adolescence. 3rd Edition, Routledge, New York. [7] Soo, C., Tate, R.L., Anderson, V. and Waugh, M.-C. (2010) Assessing care and support needs for children with acquired brain injury: Normative data for the paediatric care and needs. Brain Impairment, 4, 183-196. http://dx.doi.org/10.1375/brim.11.2.183 [8] Anderson, V.A., Catroppa, C., Dudgeon, P., Morse, S.A., Haritou, F. and Rosenfeld, J.V. (2006) Understanding predictors of functional recovery and outcome 30 months following early childhood head injury. Neuropsychology, 20, 42-57. http://dx.doi.org/10.1037/0894-4105.20.1.42 [9] Rivara, F.P., et al. (2011) Disability 3, 12, and 24 months after traumatic brain injury among children and adolescents. Pediatrics, 128, e1129-e1138. http://dx.doi.org/10.1542/peds.2011-0840 [10] Ewing-Cobbs, L., Prasad, M., Fletcher, J., Levin, H.S., Miner, M.E. and Eisenberg, H.M. (1998) Attention after pediatric traumatic brain injury: A multidimensional assessment. Child Neuropsychology, 4, 35-40. http://dx.doi.org/10.1076/chin.4.1.35.3194 [11] Hanten, G., Bartha, M. and Levin, H.S. (2000) Metacognition following pediatric traumatic brain injury: A preliminary study. Developmental Neuropsychology, 18, 383-398.
http://dx.doi.org/10.1207/S1532694206Hanten [12] Taylor, H.G., Yeates, K.O., Wade, S.L., Drotar, D., Stancin, T. and Minich, N.A. (2002) Prospective study of short-and long-term outcomes after traumatic brain injury in children: Behavior and achievement. Neuropsychology, 16, 15-27.
http://dx.doi.org/10.1037/0894-4105.16.1.15 [13] Fougeyrollas, P., Cloutier, R., Bergeron, H., Côté, J. and St-Michel, G. (1998) Classification québécoise. Processus de production du handicap. RIPPH/SCCIDIH, Québec. [14] Gauvin-Lepage, J. and Lefebvre, H. (2010) Social inclusion of persons with moderate head injuries: The points of view of adolescents with brain injuries, their parents and professionals. Brain Injury, 24, 1087-1097. http://dx.doi.org/10.3109/02699052.2010.494593 [15] Gagnon, I., Swaine, B., Champagne, F. and Lefebvre, H. (2008) Perspectives of adolescents and their parents regarding service needs following a mild traumatic brain injury. Brain Injury, 22, 161-173. http://dx.doi.org/10.1080/02699050701867381 [16] Rotondi, A.J., Sinkule, J., Balzer, K., Harris, J. and Moldovan, R. (2007) A qualitative needs assessment of persons who have experienced traumatic brain injury and their primary family caregivers. Journal of Head Trauma Rehabilitation, 22, 14-25. http://dx.doi.org/10.1097/00001199-200701000-00002 [17] Heinemann, A.W., Sokol, K., Garvin, L. and Bode, R.K. (2002) Measuring unmet needs and services among persons with traumatic brain injury. Archives of Physical and Medical Rehabilitation, 83, 1052-1059. http://dx.doi.org/10.1053/apmr.2002.34283 [18] Lefebvre, H. and Levert, M.-J. (2012) The close relatives of people who have had a traumatic brain injury and their special needs. Brain Injury, 26, 1084-1087. http://dx.doi.org/10.3109/02699052.2012.666364 [19] Corrigan, J.D. (2001) Conducting statewide needs assessments for persons with traumatic brain injury. Journal of Head Trauma Rehabilitation, 16, 1-19. http://dx.doi.org/10.1097/00001199-200102000-00004 [20] Brooks, C.A., Gabella, B., Hoffman, R., Sosin, D. and Whiteneck, G. (1997) Traumatic brain injury: Designing and implementing a population-based follow-up system. Journal of Head Trauma Rehabilitation, 78, s26-s30. [21] Gervais, M. and Dubé, S. (1999) étude exploratoire des besoins en services offerts à la clientèle traumatisée cranio-cérébrale au Québec. Research Dissertation, Laval University and Institut de Réadaptation en Déficience Physique de Québec, Quebec City. [22] Petersen, C., Scherwath, A., Fink, J. and Koch, U. (2008) Health care needs of children and adolescents with a traumatic brain injury. Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitss-chutz, 51, 629-636. http://dx.doi.org/10.1007/s00103-008-0536-3 [23] Société de l’Assurance Automobile du Québec (2008) Bilan routier. Quebec Governement, Quebec City. [24] Noreau, L. (2004) Measuring social participation: Reliability of the LIFE-H in older adults with disabilities. Disability and Rehabilitation, 26, 346-352. http://dx.doi.org/10.1080/09638280410001658649 [25] Fougeyrollas, P., Noreau, L. and St-Michel, G. (1997) Measure of life habits: User’s manual. International Network on the Disability Creation Process, Quebec City. [26] Miles, J. and Shelvin, M. (2001) Applying regression and correlation: A guide for students and researchers. Sage, London. [27] Turkstra, L.S. (2008) Conversation-based assessment of social cognition in adults with traumatic brain injury. Brain Injury, 22, 397-409. http://dx.doi.org/10.1080/02699050802027059 [28] Green, L., Godfrey, C., Soo, C., Anderson, V. and Catroppa, C. (2012) Agreement between parent-adolescent ratings on psychosocial outcome and quality-of-life following childhood traumatic brain injury. Developmental Neurorehabilitation, 15, 105-113. http://dx.doi.org/10.3109/17518423.2011.638331 [29] Rapport, L.J., Bryer, R.C. and Hanks, R.A. (2008) Driving and community integration after traumatic brain injury. Archives of Physical Medicine Rehabilitation, 89, 922-930.
http://dx.doi.org/10.1016/j.apmr.2008.01.009 [30] Lefebvre, H., Cloutier, G. and Levert, M.-J. (2008) Perspectives of survivors of traumatic brain injury and their caregivers on long-term social integration. Brain Injury, 22, 535-543.
http://dx.doi.org/10.1080/02699050802158243 [31] Rosema, S., Crowe, L. and Anderson, V. (2012) Social function in children and adolescents after traumatic brain injury: A systematic review 1989-2011. Journal of Neurotrauma, 29, 1277-1291.
http://dx.doi.org/10.1089/neu.2011.2144 [32] Willemse-van Son, A.H., Ribbers, G.M., Hop, W.C. and Stam, H.J. (2009) Community integration following moderate to severe traumatic brain injury: A longitudinal investigation. Journal of Rehabilitation Medicine, 41, 521- 527. http://dx.doi.org/10.2340/16501977-0377 [33] Beauchamp, M.H. and Anderson, V. (2010) SOCIAL: An integrative framework for the development of social skills. Psychological Bulletin, 136, 39-64. http://dx.doi.org/10.1037/a0017768 [34] Yeates, K.O., et al. (2007) Social outcomes in childhood brain disorder: A heuristic integration of social neuroscience and developmental psychology. Psychological Bulletin, 133, 535-556.
http://dx.doi.org/10.1037/0033-2909.133.3.535 [35] Cole, W.R., Paulos, S.T., Cole, C.A.S. and Tankard, C. (2009) A review of family intervention guidelines for pediatric acquired brain injuries. Developmental Disabilities Research Reviews, 15, 159-166. http://dx.doi.org/10.1002/ddrr.58 [36] Ponsford, J., Olver, J., Ponsford, M. and Nelms, R. (2003) Long-term adjustment of families following traumatic brain injury where comprehensive rehabilitation has been provided. Brain Injury, 17, 453-468. http://dx.doi.org/10.1080/0269905031000070143 [37] Cicerone, K.D., et al. (2008) A randomized controlled trial of holistic neuropsychologic rehabilitation after traumatic brain injury. Archives of Physical Medicine Rehabilitation, 89, 2239-2249.
http://dx.doi.org/10.1016/j.apmr.2008.06.017 [38] Cicerone, K.D., Mott, T., Azulay, J. and Friel, J.C. (2004) Community integration and satisfaction with functioning after intensive cognitive rehabilitation for traumatic brain injury. Archives of Physical Medicine Rehabilitation, 85, 943-950. http://dx.doi.org/10.1016/j.apmr.2003.07.019 [39] Burchardt, T. (2004) Aiming high: The educational and occupational aspirations of young disabled people. Support for Learning, 19, 181-186. http://dx.doi.org/10.1111/j.0268-2141.2004.00345.x [40] Anderson, V., Brown, S., Newitt, H. and Hoile, H. (2009) Educational, vocational, psychosocial, and quality-of-life outcomes for adult survivors of childhood traumatic brain injury. Journal of Head Trauma Rehabilitation, 24, 303- 312. http://dx.doi.org/10.1097/HTR.0b013e3181ada830 [41] Glang, A., Todis, B., Thomas, C.W., Hood, D., Bedell, G. and Cockrell, J. (2008) Return to school following childhood TBI: Who gets services? NeuroRehabilitation, 23, 477-486. [42] Todis, B., Glang, A., Bullis, M., Ettel, D. and Hood, D. (2011) Longitudinal Investigation of the post-high school transition experiences of adolescents with traumatic brain injury. Journal of Head Trauma Rehabilitation, 26, 138- 149. http://dx.doi.org/10.1097/HTR.0b013e3181e5a87a [43] Souza, L.M.N., Braga, L.W., Filho, G.N. and Dellatolas, G. (2007) Quality-of-life: Child and parent perspectives following severe traumatic brain injury. Developmental Neuroprehabilitation, 10, 35-47. http://dx.doi.org/10.1080/13638490600822239