Hostname: page-component-cd9895bd7-hc48f Total loading time: 0 Render date: 2024-12-22T04:00:50.741Z Has data issue: false hasContentIssue false
  • English
  • Français

Distress of the Caregiver in Acquired Brain Injury: Positive aspects of care to moderate the effects of psychological problems

Published online by Cambridge University Press:  07 November 2013

Elena López de Arroyabe ,
Esther Calvete ,
Carlota Las Hayas  and
Anik Zubizarreta
Elena López de Arroyabe*
Affiliation:
Department of Personality, Psychological Assessment and Treatment, University of Deusto, Avenida de las Universidades, 27, 48007 Bilbao, Spain
Esther Calvete
Affiliation:
Department of Personality, Psychological Assessment and Treatment, University of Deusto, Avenida de las Universidades, 27, 48007 Bilbao, Spain
Carlota Las Hayas
Affiliation:
Department of Personality, Psychological Assessment and Treatment, University of Deusto, Avenida de las Universidades, 27, 48007 Bilbao, Spain - Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC). Bilbao, Spain
Anik Zubizarreta
Affiliation:
Department of Personality, Psychological Assessment and Treatment, University of Deusto, Avenida de las Universidades, 27, 48007 Bilbao, Spain
*
*Corresponding author: Department of Personality, Psychological Assessment and Treatment, University of Deusto, Bilbao, Spain. elena.lpzdearroyabe@deusto.es
Get access

Abstract

Acquired brain injury (ABI) causes numerous problems, including cognitive and personality changes, which can be quite stressful for caregivers. In this study, we aimed to adapt an instrument to measure caregivers’ distress, the Relative Version of the Head Injury Behaviour Scale (HIBS; Godfrey et al., 2003) to the Spanish language and to determine whether the positive aspects of caregiving moderate the effects of the psychological problems of ABI on caregivers’ distress. Moderation analyses indicated that positive aspects of caregiving involving one's outlook on life reduced the association between psychological problems and caregivers’ distress. The findings suggest that although the caregiver role is a source of distress, this role can also become a source of satisfaction, actually contributing to reducing caregivers’ distress. The importance of promoting the positive aspects of caregiving in rehabilitation programmes is discussed.

Keywords

acquired brain injurycaregiverpsychological problemsdistresspositive aspects of care
Type
Articles
Information
The Australian Journal of Rehabilitation Counselling , Volume 19 , Special Issue 2: Family Support and Adjustment Following Acquired Brain Injury: An International Perspective , December 2013 , pp. 84 - 99
Copyright
Copyright © The Author(s), published by Cambridge University Press on behalf of Australian Academic Press Pty Ltd 2013 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Alva, J.I., & McCallum, T.J. (2011, November). Positive aspects of caregiving: Racial Differences on the Self-Affirmation and Outlook on Life Subscales. Poster session presented at the The Gerontological Society of America's 64th Annual Scientific Meeting, Boston, MA.Google Scholar
Arango-Lasprilla, J.C., & Kreutzer, J. (2010). International perspectives on caregiving. NeuroRehabilitation, 27 (1), 1–3.CrossRefGoogle ScholarPubMed
Beattie, S., & Lebel, S. (2011). The experience of caregivers of hematological cancer patients undergoing a hematopoietic stem cell transplant: a comprehensive literature review. Psycho-Oncology, 20 (11), 1137–1150.CrossRefGoogle ScholarPubMed
Beck, A.T. (1967). Depression: Clinical, experimental, and theoretical aspects. New York: Hoeber. Republished as Depression: Causes and treatment. Philadelphia: University of Pennsylvania Press.Google Scholar
Brooks, N.D. (1991). The head injury family. Journal of Clinical and Experimental Neuropsychology, 13, 155–188.CrossRefGoogle Scholar
Calvete, E., & López de Arroyabe, E. (2012). Depressive symptoms and grief in Spanish family caregivers of persons with Traumatic Brain Injury: The role of social support and coping. Brain Injury, 26 (6), 834–843.CrossRefGoogle Scholar
Carbonneau, H., Caron, C., & Desrosiers, J. (2010). Development of a conceptual framework of positive aspects of caregiving in dementia. Dementia, 9 (3), 327–353.CrossRefGoogle Scholar
Carnes, S.L., & Quinn, W.H. (2005). Family adaptation to brain injury: Coping and psychological distress. Families, Systems & Health, 23, 186–203.CrossRefGoogle Scholar
Cohen, C.A., Gold, D.P., Schulman, K.I., Tracey, J., McDonald, G., & Wargon, M. (1993). Factors determining the decision to institutionalize dementing individuals: A prospective study. Gerontologist, 33, 714–720.CrossRefGoogle ScholarPubMed
Cohen, C.A., Colantonio, A., & Vernich, L. (2002). Positive aspects of caregiving: rounding out the caregiver experience. International Journal of Geriatric Psychiatry, 17 (2), 184–188.CrossRefGoogle ScholarPubMed
Degeneffe, C.E. (2001). Family caregiving and traumatic brain injury. Health & Social Work, 26 (4), 257–268.CrossRefGoogle ScholarPubMed
Degeneffe, C.E., & Olney, M.F. (2010). ‘We are the forgotten victims’: Perspectives of adult siblings of persons with traumatic brain injury. Brain Injury, 24 (12), 1416–1427.CrossRefGoogle ScholarPubMed
Ennis, N., Rosenbloom, B., Canzian, S., & Topolovec-Vranic, J. (2013). Depression and anxiety in parent versus spouse caregivers of adult patients with Traumatic brain injury: A systematic review. Neuropspychological Rehabilitation, 23 (1), 1–18.CrossRefGoogle ScholarPubMed
Ergh, T.C., Rapport, L.J., Coleman, R.D., & Hanks, R.A. (2002). Predictors of caregiver and family functioning following traumatic brain injury: Social support moderates caregiver distress. Journal of Head Trauma Rehabilitation, 17 (2), 155–174.CrossRefGoogle ScholarPubMed
Frazier, P.A., Tix, A.P., & Barron, K.E. (2004). Testing moderator and mediator effects in counseling psychology research. Journal of Counseling Psychology, 51, 115–134.CrossRefGoogle Scholar
Godfrey, H.P., Harnett, M.A., Knight, R.G., Marsh, N.V., Kesel, D.A., Partridge, F.M.et al. (2003). Assessing distress in caregivers of people with a traumatic brain injury (TBI): a psychometric study of the Head Injury Behaviour Scale. Brain Injury, 17 (5), 427–435.CrossRefGoogle ScholarPubMed
Gold, D.P., Cohen, C., Shulman, K., Zucchero, C., Andres, D., & Etezadi, J. (1995). Caregiving and dementia: predicting negative and positive outcomes for caregivers. International Journal of Aging and Human Development, 41 (3), 183–201.CrossRefGoogle ScholarPubMed
Hankin, B. (2008). Cognitive vulnerability–stress model of depression during adolescence: Investigating depressive symptom specificity in a multi-wave prospective study. Journal of Abnormal Child Psychology, 36 (7), 999–1014.CrossRefGoogle Scholar
Harris, J.K., Godfrey, H.P., Partridge, F.M., & Knight, R.G. (2001). Caregiver depression following traumatic brain injury (TBI): a consequence of adverse effects on family members? Brain Injury,15 (3), 223–238.Google ScholarPubMed
Harris, G.M., Durkin, D.W., Allen, R.S., DeCoster, J., & Burgio, L.D. (2011). Exemplary care as a mediator of the effects of caregiver subjective appraisal and emotional outcomes. The Gerontologist, 51 (3), 332–342.CrossRefGoogle Scholar
Hawley, C.A., Ward, A.B., Magnay, A., & Long, J. (2003). Parental stress and burden following traumatic brain injury amongst children and adolescents. Brain Injury, 17 (1), 1–23.CrossRefGoogle ScholarPubMed
Hilgeman, M.M., Allen, R.S., DeCoster, J., & Burgio, L.D. (2007). Positive aspects of caregiving as a moderator of treatment outcome over 12 months. Psychology and Aging, 22 (2), 361–371.CrossRefGoogle ScholarPubMed
Hu, L., & Bentler, P.M. (1999). Cutoff criteria for fit indexes in covariance structure analysis: Conventional criteria versus new alternatives. Structural Equation Modeling, 6, 1–55.CrossRefGoogle Scholar
Jöreskog, K., & Sörbom, D. (2006). LISREL 8.80. Lincolnwood, IL: Scientific Software International.Google Scholar
Kreutzer, J., Gervasio, A.H., & Camplair, P.S. (1994). Primary caregiver's psychological status and family functioning after traumatic brain injury. Brain Injury, 8, 197–210.CrossRefGoogle ScholarPubMed
Kreutzer, J., Marwitz, J., Seel, R., & Serio, C.D. (1996). Validation of a neurobehavioral functioning inventory for adults with traumatic brain injury. Archives of Physical Medicine and Rehabilitation, 77 (2), 116–124.CrossRefGoogle ScholarPubMed
Kreutzer, J., Rapport, L., Marwitz, J., Harrison-Felix, C., Hart, T., Glenn, M.et al. (2009). Caregivers’ well-being after traumatic brain injury: A multicenter prospective investigation. Archives of Physical Medicine and Rehabilitation, 90, 939–946.CrossRefGoogle ScholarPubMed
Las Hayas, C., López de Arroyabe, E., & Calvete, E. (2013). Spanish Adaptation of the Positive Aspects of Caregiving Scale to Caregivers of a Relative with Acquired Brain Injury. Manuscript submitted for publication.Google Scholar
Lawton, M.P., Kleban, M.H., Moss, M., Rovine, M., & Glicksman, A. (1989). Measuring caregiving appraisal. Journal of Gerontology, 44 (3), 61–71.CrossRefGoogle ScholarPubMed
Lawton, M.P., Moss, M., Hoffman, C., & Perkinson, M. (2000). Two transitions in daughters’ caregiving careers. Gerontologist, 40 (4), 437–448.CrossRefGoogle ScholarPubMed
Lazarus, R.S., & Folkman, S. (1984). Stress, Appraisal, and Coping. New York: Springer.Google Scholar
Lezak, M.D. (1978). Living with the characterologically altered brain injured patient. Journal of Clinical Psychiatry, 39, 111–123.Google ScholarPubMed
Little, T.D., Slegers, D.W., & Card, N.A. (2006). A non-arbitrary method of identifying and scaling latent variables in SEM and MACS models. Structural Equation Modeling, 13 (1), 59–72.CrossRefGoogle Scholar
López, J., López-Arrieta, J., & Crespo, M. (2005). Factors associated with the positive impact of caring for elderly and dependent relatives. Archives of Gerontology and Geriatrics, 41 (1), 81–94.CrossRefGoogle ScholarPubMed
López de Arroyabe, E., & Calvete, E. (2013). Daño Cerebral Adquirido: percepción del familiar de las secuelas y su malestar psicológico. Clínica y Salud, 24, 27–35.CrossRefGoogle Scholar
Mackenzie, A., & Greenwood, N. (2012). Positive experiences of caregiving in stroke: A systematic review. Disability and Rehabilitation, 34 (17), 1413–1422.CrossRefGoogle ScholarPubMed
Marsh, N.V., Kersel, D.A., Havill, J.H., & Sleigh, J.W. (1998a). Caregiver burden at 6 months following severe traumatic brain injury. Brain Injury, 12 (3), 225–238.CrossRefGoogle ScholarPubMed
Marsh, N.V., Kersel, D.A., Havill, J.H., & Sleigh, J.W. (1998b). Caregiver burden at 1 year following severe traumatic brain injury. Brain Injury, 12 (12), 1045–1059.Google ScholarPubMed
Marsh, N.V., & Kersel, D.A. (2006). Frequency of behavioural problems at one year following traumatic brain injury: correspondence between patient and caregiver reports. Neuropsychological Rehabilitation, 16 (6), 684–694.CrossRefGoogle ScholarPubMed
Minnes, P., Graffi, S., Nolte, M., Carlson, P., & Harrick, L. (2000). Coping and stress in Canadian family caregivers of persons with traumatic brain injuries. Brain Injury, 4 (8), 737–748.Google Scholar
Montorio, I., Izal, M., López López, A., & Sánchez Colodrón, M. (1998). La entrevista de carga del cuidador. Utilidad y validez del concepto de carga. Anales de Psicología, 14 (2), 229–247.Google Scholar
Noriko, Y.M., Kazuko, I., Midori, K., Noriko, K.M., Kunihiko, H., Kiyomi, H.et al. (2004). Subjective quality of life and positive appraisal of care among Japanese family caregivers of older adults. Quality of Life Research, 13 (1), 207–221.Google Scholar
Peacock, P., Forbes, D., Markle-Reid, M., Hawranik, P., Morgan, D., Jansen, L.et al. (2010). Positive aspects of the caregiving journey with dementia: Using a strengths-based perspective to reveal opportunities. Journal of Applied Gerontology, 29 (5), 640–659.CrossRefGoogle Scholar
Perlesz, A., Kinsella, G., & Crowe, S. (2000). Psychological distress and family satisfaction following traumatic brain injury: injured individuals and their primary, secondary, and tertiary carers. Journal of Head Trauma Rehabilitation, 15 (3), 909–929.CrossRefGoogle ScholarPubMed
Pinquart, M., & Sörensen, S. (2004). Associations of caregiver stressors and uplifts with subjective well-being and depressive mood: A meta-analytic comparison.Aging & Mental Health, 8 (5), 438–449.CrossRefGoogle Scholar
Roff, L.L., Burgio, L.D., Gitlin, L., Nichols, L., Chaplin, W., & Hardin, J.M. (2004). Positive aspects of Alzheimer's caregiving: The role of race. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 59 (4), 185–190.CrossRefGoogle ScholarPubMed
Sander, A.M., Fuchs, K.L., High, W.M., Hall, K.M., Kreutzer, J.S., & Rosenthal, M. (1999). The Community Integration Questionnaire revisited: an assessment of factor structure and validity. Archives of Physical Medicine and Rehabilitation, 80 (10), 1303–1308.CrossRefGoogle ScholarPubMed
Schönberger, M., Ponsford, J., Olver, J., & Ponsford, M. (2010). A longitudinal study of family functioning after TBI and relatives’ emotional status. Neuropsychological Rehabilitation, 20 (6), 813–829.CrossRefGoogle ScholarPubMed
Serio, C., Kreutzer, J., & Gervasio, A. (1995). Predicting family needs after brain injury: Implications for intervention. Journal of Head Trauma Rehabilitation, 10 (2), 32–45.CrossRefGoogle Scholar
Smith, L.M., & Godfrey, H.P. (1995). Family Support Programs and Rehabilitation: A Cognitive behavioural Approach to Traumatic Brain Injury (New York: Plenum Press).CrossRefGoogle Scholar
Tarlow, B.J., Wisniewski, S.R., Belle, S.H., Rubert, M., Ory, M.G., & Gallagher-Thompson, D. (2004). Positive aspects of caregiving contributions of the REACH project to the development of new measures for Alzheimer's caregiving. Research on Aging, 26 (4), 429–453.CrossRefGoogle Scholar
Verhaeghe, S., Defloor, T., & Grypdonck, M. (2005). Stress and coping among families of patients with traumatic brain injury: a review of the literature. Journal of Clinical Nursing, 14 (8), 1004–1012.CrossRefGoogle ScholarPubMed
Wade, S.L., Taylor, H.G., Drotar, D., & Stancin, T. (1996). Childhood traumatic brain injury: initial impact on the family. Journal of Learning Disabilities, 29 (6), 652–661.CrossRefGoogle ScholarPubMed
Wade, S.L., Borawski, E.A., Taylor, H.G., Drotar, D., Yeates, K.O., & Stancin, T. (2001). The relationship of caregiver coping to family outcomes during the initial year following pediatric traumatic injury. Journal of Consulting and Clinical Psychology, 69 (3), 406–415.CrossRefGoogle ScholarPubMed