Building resilience among families supporting relatives with ABI in rural NSW: testing the feasibility of telephone delivery of Strength2Strength program

References

• Frost RB, Farrer TJ, Primosch M, Hedges DW. Prevalence of traumatic brain injury in the general adult population: a meta-analysis. Neuroepidemiology. 2013;40:154–59. doi:10.1159/000343275.
   PubMed Web of Science ®Google Scholar
• Marsh NV, Kersel DA, Havill JA, Sleigh JW. Caregiver burden during the year following severe traumatic brain injury. J Clin Exp Neuropsychol. 2002;24(4):434–47. doi:10.1076/jcen.24.4.434.1030.
   PubMed Web of Science ®Google Scholar
• Ownsworth T, Clare L. The association between awareness deficits and rehabilitation outcome following acquired brain injury. Clin Psychol Rev. 2006;26(6):783–95. doi:10.1016/j.cpr.2006.05.003.
   PubMed Web of Science ®Google Scholar
• Ponsford JL, Downing MG, Olver J, Ponsford M, Acher R, Carty M, Spitz G. Longitudinal follow-up of patients with traumatic brain injury: outcome at two, five, and ten years post-injury. J Neurotrauma. 2014;31(1):64–77. doi:10.1089/neu.2013.2997.
   PubMed Web of Science ®Google Scholar
• Sabaz M, Simpson GK, Walker A, Rogers J, Gillis G, Strettles BSpitz G. Prevalence, co-morbidities and predictors of challenging behaviour among a cohort of community-dwelling adults with severe traumatic brain injury: a multi-centre study. J Head Trauma Rehabil. 2014;29(2):E19–30. doi:10.1097/HTR.0b013e31828dc590.
   PubMed Web of Science ®Google Scholar
• Simpson GK, McRae P, Hallab L, Daher M, Strettles B. Participation in competitive employment after severe traumatic brain injury: new employment versus return to previous (pre-injury) employment. Neuropsychol Rehabil. 2020;30(6):995–1012. doi:10.1080/09602011.2018.1531769.
   PubMed Web of Science ®Google Scholar
• Godwin EE, Kreutzer JS, Arango-Lasprilla JC, Lehan TJ. Marriage after brain injury: review, analysis, and research recommendations. J Head Trauma Rehabil. 2011;26(1):43–55. doi:10.1097/HTR.0b013e3182048f54.
   PubMed Web of Science ®Google Scholar
• Tate RL, Lane-Brown AT, Myles BM, Cameron ID. A longitudinal study of support needs after severe traumatic brain injury. Brain Inj. 2020;34(8):991–1000. doi:10.1080/02699052.2020.1764101.
   PubMed Web of Science ®Google Scholar
• Anderson MI, Simpson GK, Morey PJ, Mok M, Gosling TJ, Gillett LE. Differential pathways of psychological distress in spouses versus parents of people with severe traumatic brain injury (TBI): multigroup analysis. Brain Inj. 2009;23(12):931–43. doi:10.3109/02699050903302336.
   PubMed Web of Science ®Google Scholar
• Ennis N, Rosenbloom BN, Canzian S, Topolovec-Vranic J. Depression and anxiety in parent versus spouse caregivers of adult patients with traumatic brain injury: a systematic review. Neuropsychol Rehabil. 2013;23:1–18. doi:10.1080/09602011.2012.712871.
   PubMed Web of Science ®Google Scholar
• Kreutzer JS, Rapport LJ, Marwitz JH, Harrison-Felix C, Hart T, Glenn M, Hammond F. Caregivers’ well-being after traumatic brain injury: a multicentre prospective investigation. Arch Phys Med Rehabil. 2009;90(6):939–46. doi:10.1016/j.apmr.2009.01.010.
   PubMed Web of Science ®Google Scholar
• Anderson M, Simpson GK, Morey P. The impact of neurobehavioural impairment on family functioning and the psychological wellbeing of male versus female caregivers of relatives with severe traumatic brain injury: multi-group analysis. J Head Trauma Rehabil. 2013;28(6):453–63. doi:10.1097/HTR.0b013e31825d6087.
   PubMed Web of Science ®Google Scholar
• Ponsford J, Schönberger M. Family functioning and emotional state two and five years after traumatic brain injury. J Int Neuropsychol Soc. 2010;16(2):306–17. doi:10.1017/S1355617709991342.
   PubMed Web of Science ®Google Scholar
• Chronister J, Johnson ET, Chan F, Tu W-M, Chung Y-C, Lee GK. Positive person–environment factors as mediators of the relationship between perceived burden and quality of life of caregivers for individuals with traumatic brain injuries. RehabilCouns Bull. 2016;59(4):235–46. doi:10.1177/0034355215601072.
   Google Scholar
• Bermejo-Toro L, Sánchez-Izquierdo M, Calvete E, Roldán MA. Quality of life, psychological well-being, and resilience in caregivers of people with acquired brain injury (ABI). Brain Inj. 2020;34(4):480–488. doi:10.1080/02699052.2020.1725127.
   PubMed Web of Science ®Google Scholar
• Godwin EE, Lukow HR, Lichiello S. Promoting resilience following traumatic brain injury: application of an interdisciplinary, evidence-based model for intervention. Fam Relat. 2015;64(3):347–62. doi:10.1111/fare.12122.
   Web of Science ®Google Scholar
• Las Hayas C, López de Arroyabe E, Calvete E. Positive aspects of caregiving in Spanish caregivers of individuals with acquired brain injury. Rehabil Psychol. 2014;59:193–202. doi:10.1037/a0035622.
   PubMed Web of Science ®Google Scholar
• Simpson GK, Jones K. How important is resilience among family members supporting relatives with traumatic brain injury or spinal cord injury? Clin Rehabil. 2013;27:367–77. doi:10.1177/0269215512457961.
   PubMed Web of Science ®Google Scholar
• Luthar SS, Cicchetti D, Becker B. The construct of resilience: a critical evaluation and guidelines for future work. Child Dev. 2000;71:543–62. doi:10.1111/1467-8624.00164.
   PubMed Web of Science ®Google Scholar
• Anderson MI, Daher M, Simpson GK. A predictive model of resilience among family caregivers supporting relatives with traumatic brain injury (TBI): a structural equation modelling approach. Neuropsychol Rehabil. 2020;30(10):1925–1946. doi:10.1080/09602011.2019.1620787.
   PubMed Web of Science ®Google Scholar
• Neils-Strunjas J, Paul D, Clark AN, Mudar R, Duff MC, Waldron-Perrine B, Bechtold KT. Role of resilience in the rehabilitation of adults with acquired brain injury. Brain Inj. 2017;31(2):131–139. doi:10.1080/02699052.2016.1229032.
   PubMed Web of Science ®Google Scholar
• Simpson GK, Jones K, Pfeiffer D, Unger C, Oosthuizen H, Francis J,Young D. Strength2Strength: building resilience among families supporting relatives with traumatic injury. Sydney (NSW): Lifetime Care And Support Authority; 2011.
   Google Scholar
• Walsh F. Family resilience: a framework for clinical practice. Fam Process. 2003;42(1):1–18. doi:10.1111/j.1545-5300.2003.00001.x.
   PubMed Web of Science ®Google Scholar
• Patterson JM. Family resilience to the challenge of a child’s disability. Pediatr Ann. 1991;20(9):491–499. doi:10.3928/0090-4481-19910901-08.
   PubMed Web of Science ®Google Scholar
• Harradine PG, Winstanley JB, Tate R, Cameron ID, Baguley IJ, Harris RD. Severe traumatic brain injury in New South Wales: comparable outcomes for rural and urban residents. Medical Aust. 2004;181(3):130–34. doi:10.5694/j.1326-5377.2004.tb06202.x.
   PubMed Web of Science ®Google Scholar
• Mitsch V, Curtin M, Badge H. The provision of brain injury rehabilitation services for people living in rural and remote New South Wales, Australia. Brain Inj. 2014;28:1504–13. doi:10.3109/02699052.2014.938120.
   PubMed Web of Science ®Google Scholar
• Simpson GK, Daher M, Hodgkinson A, Strettles B. Comparing the injury profile, service use, outcomes, and comorbidities of people with severe TBI across urban, regional, and remote populations in new south wales: a multicentre study. J Head Trauma Rehabil. 2016;31(2):E26–E38. doi:10.1097/HTR.0000000000000160.
   PubMed Web of Science ®Google Scholar
• Hartke R, King R. Telephone group intervention for older stroke caregivers. Top Stroke Rehabil. 2003;9(4):65–81. doi:10.1310/rx0a-6e2y-bu8j-w0vl.
   PubMedGoogle Scholar
• Hyde B. Mutual aid group work: social work leading the way to recovery-focused mental health practice. Soc Work Groups. 2013;36(1):43–58. doi:10.1080/01609513.2012.699872.
   Google Scholar
• Waller A, Dilworth S, Mansfield E, Sanson-Fisher R. Computer and telephone delivered interventions to support caregivers of people with dementia: a systematic review of research output and quality. BMC Geriatr. 2017;17:265. doi:10.1186/s12877-017-0654-6.
   PubMed Web of Science ®Google Scholar
• Rietdijk R, Togher L, Power E. Supporting family members of people with traumatic brain injury using telehealth: a systematic review. J Rehab Med. 2012;44(11):913–21. doi:10.2340/16501977-1058.
   PubMed Web of Science ®Google Scholar
• Feeley N, Cossette S, Côté J, Héon M, Stremler R, Martorella G,Purden M. Best practices for research: the importance of piloting an RCT intervention. Can J Nurs Res. 2009;41(2):84–99.
   Google Scholar
• Webster CD, Martin ML, Brink J, Nicholls TL, Desmarais SL. Manual for the short-term assessment of risk and treatability (START). Version 1.1 ed. Coquitlam (Canada): BC Mental Health and Addiction Services; 2009.
   Google Scholar
• Matarazzo BB, Hoffberg AS, Clemans TA, Signoracci GM, Simpson GK, Brenner LA. Cross-cultural adaptation of the Window to Hope: a psychological intervention to reduce hopelessness among US veterans with traumatic brain injury. Brain Inj. 2014;28(10):1238–47. doi:10.3109/02699052.2014.916419.
   PubMed Web of Science ®Google Scholar
• Connor KM, Davidson JRT. Development of a new resilience scale: the connor -Davidson resilience scale (CD-RISC). Depress Anxiety. 2003;18:76–82. doi:10.1002/da.10113.
   PubMed Web of Science ®Google Scholar
• Windle G, Bennett KM, Noyes J. A methodological review of resilience measurement scales. HRQOL. 2011;9(1):8. doi:10.1186/1477-7525-9-8.
   Google Scholar
• Wagnild GM, Young HM. Development and psychometric evaluation of the resilience scale. J Nurs Meas. 1993;1(2):165–78.
   PubMedGoogle Scholar
• Elmstahl S, Malmberg B, Annerstedt L. Caregiver’s burden of patients 3 years after stroke assessed by a novel caregiver burden scale. Arch Phys Med Rehabil. 1996;77:177–82. doi:10.1016/s0003-9993(96)90164-1.
   PubMed Web of Science ®Google Scholar
• Watson D, Clark LA. The PANAS-X. Manual for the positive and negative affect schedule - expanded form. Iowa City: University of Iowa; 1994. doi:10.17077/48vt-m4t2
   Google Scholar
• Watson D, Clark LA, Tellegen A. Development and validation of brief measures of positive and negative affect: the PANAS scales. J Pers Soc Psychol. 1988;54(6):1063–70. doi:10.1037/0022-3514.54.6.1063.
   PubMed Web of Science ®Google Scholar
• Nolan M, Grant G, Keady J. Assessing the needs of family carers - a guide for family practitioners. Brighton: Pavilion Publishing; 1998.
   Google Scholar
• Lovibond SH, Lovibond PF. Manual for the depression anxiety stress scales. 2nd ed. Sydney: Psychology Foundation UNSW; 1995.
   Google Scholar
• Gloster AT, Rhoades HM, Novy D, Klotsche J, Senior A, Kunik M, Wilson N, Stanley MA. Psychometric properties of the depression anxiety and stress scale-21 in older primary care patients. J Affect Disord. 2008;110(3):248–259. doi:10.1016/j.jad.2008.01.023.
   PubMed Web of Science ®Google Scholar
• Hasson-Ohayon I, Roe D, Kravetz S. A qualitative approach to the evaluation of psychosocial interventions for persons with severe mental illness. Psychiatr Serv. 2006;3(4):262–73. doi:10.1037/1541-1559.3.4.262.
   Google Scholar
• Yu F. Scaling questions in couple and family therapy.In: Lebow J, Chambers A Breunlin D editors. Encyclopedia of Couple and family therapy. Springer Cham; 2019. doi:10.1007/978-3-319-49425-8_1065
   Google Scholar
• Chow EO. Narrative therapy an evaluated intervention to improve stroke survivors’ social and emotional adaptation. Clin Rehabil. 2015;29(4):315–326. doi:10.1177/0269215514544039.
   PubMed Web of Science ®Google Scholar
• Roundhill SJ, Williams WH, Hughes JM. The experience of loss following traumatic brain injury: applying a bereavement model to the process of adjustment. Qual Res Psychol. 2007;4(3):241–257. doi:10.1080/14780880701473540.
   Google Scholar
• Freeman JC, Epston D, Lobovits D. Playful approaches to serious problems: narrative therapy with children and their families. New York: WW Norton & Company; 1997.
   Google Scholar
• Jones M, Holley C, Jacobs M, Batchelor R, Mangin A. Effects of peer mentoring for caregivers of patients with acquired brain injury: a preliminary investigation of efficacy. Arch Rehabil Res And Clin Transl. 2021;3(3):100149. doi:10.1016/j.arrct.2021.100149.
   PubMedGoogle Scholar
• Schumm WR, Pratt KK, Hartenstein JL, Jenkins BA, Johnson GA. Determining statistical signifi cance (alpha) and reporting statistical trends: controversies, issues, and facts 1. Compr Psychol. 2013;2(1):03–CP. doi:10.2466/03.CP.2.10.
   Google Scholar
• Patton MQ. Qualitative research & evaluation methods: integrating theory and practice. 4th ed. Thousand Oaks, California: Sage Publications; 2015.
   Google Scholar
• Braun V, Clarke V. Thematic analysis : a practical guide to understanding and doing. 1st ed. London: Sage Publications Ltd; 2022.
   Google Scholar
• Infrastructure Australia. Mobile telecommunications coverage in regional and remote areas. 2021 Nov 9. https://www.infrastructureaustralia.gov.au/map/mobile-telecommunications-coverage-regional-and-remote-areas
   Google Scholar
• Simpson GK, Anderson MI, Daher M, Jones KF, Morey P. Testing a model of resilience in family members of relatives with traumatic brain injury versus spinal cord injury: multigroup analysis. Arch Of Phys Med Rehabil. 2021 Dec;102(12):2325–34. doi:10.1016/j.apmr.2021.06.016.
   PubMed Web of Science ®Google Scholar
• Jones KF, Dorsett P, Briggs L, Anderson M, Simpson GK. A study of whether individual and dyadic relations between spirituality and resilience contribute to psychological adjustment among individuals with spinal cord injuries and their family members. Clin Rehabil. 2019;33(9):1503–14. doi:10.1177/0269215519845034.
   PubMed Web of Science ®Google Scholar
• Baker A, Barker S, Sampson A, Martin C. Caregiver outcomes and interventions: a systematic scoping review of the traumatic brain injury and spinal cord injury literature. Clin Rehabil. 2017;31(1):45–60. doi:10.1177/0269215516639357.
   PubMed Web of Science ®Google Scholar
• Sander AM, Caroselli JS, High WM, Becker C, Neese L, Scheibel R. Relationship of family functioning to progress in a post-acute rehabilitation programme following traumatic brain injury. Brain Inj. 2002;16(8):649–57. doi:10.1080/02699050210128889.
   PubMed Web of Science ®Google Scholar
• Heinemann AW, Sokol K, Garvin L, Bode RK. Measuring unmet needs and services among persons with traumatic brain injury. Arch Phys Med Rehabil. 2002;83(8):1052–59. doi:10.1053/apmr.2002.34283.
   PubMed Web of Science ®Google Scholar
• Pickelsimer EE, Selassie AW, Sample PL, Heinemann AW, Gu JK, Veldheer LC. Unmet service needs of persons with traumatic brain injury. J Head Trauma Rehabil. 2002;22(1):1–13. doi:10.1097/00001199-200701000-00001.
   Google Scholar
• Deloitte Access Economics. The economic value of informal care in Australia in 2015. Canberra ACT: Carers Australia; 2015.
   Google Scholar
• Chari AV, Engberg J, Ray KN, Mehrotra A. The opportunity costs of informal elder-care in the United States: new estimates from the American time use survey. Health Ser Res. 2015;50(3):871–82. doi:10.1111/1475-6773.12238.
   PubMed Web of Science ®Google Scholar