Do caregivers of traumatic brain injury survivors experience post-traumatic growth? A mixed-methods study exploring the positive experiences of informal caregivers
Molly Hillyard A , Ryan Westley A and Jade Kettlewell
B C D *
A
B
C
D
Abstract
There are currently 5.7 million informal caregivers in the UK, with many experiencing psychological distress, compromised social functioning and poor quality of life. Improving the negative impact of caregiving has been a key focus of research in this population. However, there is limited research on the positive experiences of informal caregivers, particularly those caring for traumatic brain injury (TBI) survivors. This study aimed to explore whether informal TBI caregivers have positive experiences resulting from their role and investigate the possibility of post-traumatic growth (PTG).
Mixed-methods study. Quantitative data analysed using descriptive statistics. Qualitative data were analysed thematically. Data sets were synthesised and compared for agreement. Online semi-structured interviews were conducted with informal TBI caregivers, alongside a demographic questionnaire and validated PTG measure (Post-Traumatic Growth Inventory – Short Form, PTGI-SF).
Ten TBI caregivers were recruited (n = 10 male). The highest-scoring PTGI-SF domain across participants was ‘personal strength’ (mean = 8.3; standard deviation, s.d. = 1.5). The lowest-scoring domain was ‘greater appreciation for life’ (mean = 7.1, s.d. = 2.6). Six qualitative themes included: (1) deepened personal connections, (2) strengthened spiritual beliefs, (3) personal growth and resilience, (4) transformed life priorities and purpose, (5) improved coping mechanisms and (6) emergence of new opportunities and pathways. Findings revealed how caregivers adapted positively through caregiving experiences.
TBI caregivers appeared to experience PTG through caring. Future studies should employ mixed-methods to explore PTG in female TBI caregivers, adaptive coping strategies and the prevalence of occupational burden, facilitating the development of targeted interventions.
Keywords: informal caregivers, mixed-methods, positive experiences, post-traumatic growth, post-traumatic growth inventory, qualitative research, traumatic brain injury, traumatic injury.
References
Adams D, Dahdah M (2016) Coping and adaptive strategies of traumatic brain injury survivors and primary caregivers. NeuroRehabilitation 39(2), 223-237.
| Crossref | Google Scholar | PubMed |
Anderson MI, Parmenter TR, Mok M (2002) The relationship between neurobehavioural problems of severe traumatic brain injury (TBI), family functioning and the psychological well-being of the spouse/caregiver: path model analysis. Brain Injury 16(9), 743-757.
| Crossref | Google Scholar |
Bacon E, Milne DL, Sheikh AI, Freeston MH (2009) Positive Experiences in Caregivers: An Exploratory Case Series. Behavioural and Cognitive Psychotherapy 37(1), 95-114.
| Crossref | Google Scholar | PubMed |
Balfe M, O’Brien K, Timmons A, Butow P, O’Sullivan E, Gooberman-Hill R, Sharp L (2016) What factors are associated with posttraumatic growth in head and neck cancer carers? European Journal of Oncology Nursing 21, 31-37.
| Crossref | Google Scholar | PubMed |
Baseotto MC, Morris PG, Gillespie DC, Trevethan CT (2022) Post-traumatic growth and value-directed living after acquired brain injury. Neuropsychological Rehabilitation 32(1), 84-103.
| Crossref | Google Scholar | PubMed |
Bidwell JT, Lyons KS, Lee CS (2017) Caregiver Well-being and Patient Outcomes in Heart Failure. Journal of Cardiovascular Nursing 32(4), 372-382.
| Crossref | Google Scholar |
Braun V, Clarke V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3(2), 77-101.
| Crossref | Google Scholar |
Braun V, Clarke V (2019) To saturate or not to saturate? Questioning data saturation as a useful concept for thematic analysis and sample-size rationales. Qualitative Research in Sport, Exercise and Health 13(2), 201-216.
| Crossref | Google Scholar |
Buschenfeld K, Morris R, Lockwood S (2009) The experience of partners of young stroke survivors. Disability and Rehabilitation 31(20), 1643-1651.
| Crossref | Google Scholar | PubMed |
Calhoun LG, Tedeschi RG (2001) Posttraumatic growth: The positive lessons of loss. In ‘Meaning Reconstruction & The Experience of Loss’. (Ed. RA Neimeyer) pp. 157–172. (American Psychological Association). 10.1037/10397-008
Cann A, Calhoun LG, Tedeschi RG, Taku K, Vishnevsky T, Triplett KN, Danhauer SC (2010) A short form of the Posttraumatic Growth Inventory. Anxiety, Stress, & Coping 23(2), 127-137.
| Crossref | Google Scholar | PubMed |
Carers UK (2019a) About us. Available at https://www.carersuk.org/about-us/why-were-here/ [accessed 19 July 2024]
Carers UK (2019b) Facts and Figures. Available at https://www.carersuk.org/news-and-campaigns/press-releases/facts-and-figures [accessed 13 September 2023]
Carnes SL, Quinn WH (2005) Family Adaptation to Brain Injury: Coping and Psychological Distress. Families, Systems, & Health 23(2), 186-203.
| Crossref | Google Scholar |
Collicutt McGrath J, Linley PA (2006) Post-traumatic growth in acquired brain injury: a preliminary small scale study. Brain Injury 20(7), 767-773.
| Crossref | Google Scholar | PubMed |
Gérain P, Zech E (2022) A Harmful Care: The Association of Informal Caregiver Burnout With Depression, Subjective Health, and Violence. Journal of Interpersonal Violence 37(11–12), NP9738-NP9762.
| Crossref | Google Scholar | PubMed |
Graham DI, Adams JH, Nicoll JAR, Maxwell WL, Gennarelli TA (1995) The nature, distribution and causes of traumatic brain injury. Brain Pathology 5(4), 397-406.
| Crossref | Google Scholar | PubMed |
Haley WE, Allen JY, Grant JS, Clay OJ, Perkins M, Roth DL (2009) Problems and benefits reported by Stroke family caregivers: Results from a prospective epidemiological study. Stroke 40(6), 2129-2133.
| Crossref | Google Scholar | PubMed |
Hallam W, Morris R (2014) Post-traumatic growth in stroke carers: A comparison of theories. British Journal of Health Psychology 19(3), 619-635.
| Crossref | Google Scholar | PubMed |
Hamama L, Sharon M (2013) Posttraumatic growth and subjective well-being among caregivers of chronic patients: A preliminary study. Journal of Happiness Studies 14, 1717-1737.
| Crossref | Google Scholar |
Johnstone B, Yoon DP, Rupright J, Reid-Arndt S (2009) Relationships among spiritual beliefs, religious practises, congregational support and health for individuals with traumatic brain injury. Brain Injury 23(5), 411-419.
| Crossref | Google Scholar | PubMed |
Juengst SB, Perrin PB, Klyce DW, O’Neil-Pirozzi TM, Herrera S, Wright B, Lengenfelder J, Lercher K, Callender L, Arango-Lasprilla JC (2022) Caregiver Characteristics of Adults with Acute Traumatic Brain Injury in the United States and Latin America. International Journal of Environmental Research and Public Health 19(9), 5717.
| Crossref | Google Scholar | PubMed |
Katsifaraki M, Wood RLI (2014) The impact of alexithymia on burnout amongst relatives of people who suffer from traumatic brain injury. Brain Injury 28(11), 1389-1395.
| Crossref | Google Scholar |
Kratz AL, Sander AM, Brickell TA, Lange RT, Carlozzi NE (2017) Traumatic brain injury caregivers: A qualitative analysis of spouse and parent perspectives on quality of life. Neuropsychological Rehabilitation 27(1), 16-37.
| Crossref | Google Scholar | PubMed |
Kreutzer JS, Rapport LJ, Marwitz JH, Harrison-Felix C, Hart T, Glenn M, Hammond F (2009) Caregivers’ Well-Being After Traumatic Brain Injury: A Multicenter Prospective Investigation. Archives of Physical Medicine and Rehabilitation 90(6), 939-946.
| Crossref | Google Scholar | PubMed |
Leiter MP, Maslach C (2016) Latent burnout profiles: A new approach to understanding the burnout experience. Burnout Research 3(4), 89-100.
| Crossref | Google Scholar |
Li Y, Ying J, Zhang X, Li H, Ma D, Zhao Y, Sun J (2021) Coping strategies mediate the association between family functioning and posttraumatic growth in family caregivers of people with dementia. Aging & Mental Health 25, 1684-1691.
| Crossref | Google Scholar | PubMed |
Lincoln YS, Guba EG (1986) But is it rigorous? Trustworthiness and authenticity in naturalistic evaluation. New Directions for Program Evaluation 1986(30), 73-84.
| Crossref | Google Scholar |
Maas AIR, Menon DK, Adelson PD, Andelic N, Bell MJ, Belli A, et al. (2017) Traumatic brain injury: integrated approaches to improve prevention, clinical care, and research. The Lancet Neurology 16(12), 987-1048.
| Crossref | Google Scholar |
Maas AIR, Menon DK, Manley GT, Abrams M, Åkerlund C, Andelic N, Aries M, Bashford T, Bell MJ, Bodien YG, Brett BL, Büki A, Chesnut RM, Citerio G, Clark D, Clasby B, Cooper DJ, Czeiter E, Czosnyka M, Dams-O’Connor K, et al. (2022) Traumatic brain injury: progress and challenges in prevention, clinical care, and research. The Lancet. Neurology 21(11), 1004-1060.
| Crossref | Google Scholar | PubMed |
Manley K, Saunders K, Wilkinson D, Faruqui R, Sakel M (2023) Co‐creating system‐wide improvement for people with traumatic brain injury across one integrated care system in the United Kingdom to initiate a transformation journey through co‐production. Health Expectations 26(2), 869-881.
| Crossref | Google Scholar | PubMed |
Menon DK, Schwab K, Wright DW, Maas AI (2010) Position Statement: Definition of Traumatic Brain Injury. Archives of Physical Medicine and Rehabilitation 91(11), 1637-1640.
| Crossref | Google Scholar | PubMed |
Moore AM, Gamblin TC, Geller DA, Youssef MN, Hoffman KE, Gemmell L, Likumahuwa SM, Bovbjerg DH, Marsland A, Steel JL (2011) A prospective study of posttraumatic growth as assessed by self-report and family caregiver in the context of advanced cancer. Psycho-Oncology 20(5), 479-487.
| Crossref | Google Scholar | PubMed |
Neubauer BE, Witkop CT, Varpio L (2019) How phenomenology can help us learn from the experiences of others. Perspectives on Medical Education 8(2), 90-97.
| Crossref | Google Scholar | PubMed |
O’Cathain A, Thomas KJ, Drabble SJ, Rudolph A, Goode J, Hewison J (2014) Maximising the value of combining qualitative research and randomised controlled trials in health research: the QUAlitative Research in Trials (QUART) study a mixed methods study. Health Technology Assessment 18(38), 1-197.
| Crossref | Google Scholar | PubMed |
Page TA, Gordon S, Balchin R, Tomlinson M (2021) Caregivers’ perspectives of the challenges faced with survivors of traumatic brain injury: A scoping review. NeuroRehabilitation 49(3), 349-362.
| Crossref | Google Scholar | PubMed |
Park J-H, Jung Y-S, Jung Y (2016) Factors Influencing Posttraumatic Growth in Survivors of Breast Cancer. Journal of Korean Academy of Nursing 46(3), 454.
| Crossref | Google Scholar |
Petrillo M, Bennett MR (2023) Valuing Carers 2021: England and Wales. https://www.carersuk.org/media/2d5le03c/valuing-carers-report.pdf
Ponsford J, Schönberger M (2010) Family functioning and emotional state two and five years after traumatic brain injury. Journal of the International Neuropsychological Society 16(2), 306-317.
| Crossref | Google Scholar | PubMed |
Ponsford J, Olver J, Ponsford M, Nelms R (2003) Long-term adjustment of families following traumatic brain injury where comprehensive rehabilitation has been provided. Brain Injury 17(6), 453-468.
| Crossref | Google Scholar | PubMed |
Powell T, Gilson R, Collin C (2012) TBI 13 years on: factors associated with post-traumatic growth. Disability and Rehabilitation 34(17), 1461-1467.
| Crossref | Google Scholar | PubMed |
Prati G, Pietrantoni L (2009) Optimism, Social Support, and Coping Strategies As Factors Contributing to Posttraumatic Growth: A Meta-Analysis. Journal of Loss & Trauma 14(5), 364-388.
| Crossref | Google Scholar |
Rogan C, Fortune DG, Prentice G (2013) Post-traumatic growth, illness perceptions and coping in people with acquired brain injury. Neuropsychological Rehabilitation 23(5), 639-657.
| Crossref | Google Scholar | PubMed |
Salazar AM, Warden DL, Schwab K, Spector J, Braverman S, Walter J, Cole R, Rosner MM, Martin EM, Ecklund J, Ellenbogen RG, for the Defense Veterans Head Injury Program Study Group (2000) Cognitive Rehabilitation for Traumatic Brain Injury: A Randomized Trial. JAMA 283(23), 3075-3081.
| Crossref | Google Scholar | PubMed |
Sander AM, Maestas KL, Clark AN, Havins WN (2013) Predictors of Emotional Distress in Family Caregivers of Persons with Traumatic Brain Injury: A Systematic Review. Brain Impairment 14(1), 113-129.
| Crossref | Google Scholar |
Silva J, Ownsworth T, Shields C, Fleming J (2011) Enhanced Appreciation of Life Following Acquired Brain Injury: Posttraumatic Growth at 6 Months Postdischarge. Brain Impairment 12(2), 93-104.
| Crossref | Google Scholar |
Squires A, Sadarangani T, Jones S (2020) Strategies for overcoming language barriers in research. Journal of Advanced Nursing 76(2), 706-714.
| Crossref | Google Scholar | PubMed |
Tallman BA, Lohnberg J, Yamada TH, Halfdanarson TR, Altmaier EM (2014) Anticipating Posttraumatic Growth from Cancer: Patients’ and Collaterals’ Experiences. Journal of Psychosocial Oncology 32(3), 342-358.
| Crossref | Google Scholar | PubMed |
Tedeschi RG, Calhoun LG (1996) The Posttraumatic Growth Inventory: measuring the positive legacy of trauma. Journal of Traumatic Stress 9(3), 455-471.
| Crossref | Google Scholar | PubMed |
Tedeschi RG, Calhoun LG (2004) Posttraumatic Growth: Conceptual Foundations and Empirical Evidence. Psychological Inquiry 15(1), 1-18.
| Crossref | Google Scholar |
Tong A, Sainsbury P, Craig J (2007) Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care 19(6), 349-357.
| Crossref | Google Scholar |
Vos PE, Alekseenko Y, Battistin L, Ehler E, Gerstenbrand F, Muresanu DF, et al. (2012) Mild traumatic brain injury. European Journal of Neurology 19(2), 191-198.
| Crossref | Google Scholar | PubMed |
Waldron-Perrine B, Rapport LJ, Hanks RA, Lumley M, Meachen S-J, Hubbarth P (2011) Religion and Spirituality in Rehabilitation Outcomes Among Individuals With Traumatic Brain Injury. Rehabilitation Psychology 56(2), 107-116.
| Crossref | Google Scholar | PubMed |
Whiffin CJ, Gracey F, Ellis-Hill C (2021) The experience of families following traumatic brain injury in adult populations: A meta-synthesis of narrative structures. International Journal of Nursing Studies 123, 104043.
| Crossref | Google Scholar | PubMed |
Zeligman M, Varney M, Grad RI, Huffstead M (2018) Posttraumatic Growth in Individuals With Chronic Illness: The Role of Social Support and Meaning Making. Journal of Counseling and Development 96(1), 53-63.
| Crossref | Google Scholar |
