“The bucket of gold at the end of the rainbow”: personal experiences of hope after acquired brain injury

References

• Kylma J, Juvakka T. Hope in parents of adolescents with cancer-factors endangering and engendering parental hope. Eur J Oncol Nurs. 2007;11(3):262–271.
   PubMed Web of Science ®Google Scholar
• Hopper E. On the nature of hope in psychoanalysis and group analysis. Br J Psychotherapy. 2001;18(2):205–226.
   Google Scholar
• Melges FT, Bowlby J. Types of hopelessness in psychopathological process. Arch Gen Psychiatry. 1969;20(6):690–699.
   PubMed Web of Science ®Google Scholar
• Stephenson C. The concept of hope revisited for nursing. J Adv Nurs. 1991;16(12):1456–1461.
   PubMed Web of Science ®Google Scholar
• Chi GCHL. The role of hope in patients with cancer. Oncol Nurs Forum. 2007;34(2):415–424.
   PubMed Web of Science ®Google Scholar
• Griggs S, Walker RK. The role of hope for adolescents with a chronic illness: an integrative review. J Pediatr Nurs. 2016;31(4):404–421.
   PubMed Web of Science ®Google Scholar
• Van Lit A, Kayes N. A narrative review of hope after spinal cord injury: implications for physiotherapy. NZ J Physiother. 2014;42(1):33–41.
   Google Scholar
• Duggleby W, Ghosh S, Cooper D, et al. Hope in newly diagnosed cancer patients. J Pain Symptom Manage. 2013;46(5):661–670.
   PubMed Web of Science ®Google Scholar
• Dorsett P. The importance of hope in coping with severe acquired disability. Aust Soc Work. 2010;63(1):83–102.
   Web of Science ®Google Scholar
• Lohne V, Severinsson E. The power of hope: patients' experiences of hope a year after acute spinal cord injury. J Clin Nurs. 2006;15(3):315–323.
   PubMed Web of Science ®Google Scholar
• Smith B, Sparkes AC. Men, sport, spinal cord injury, and narratives of hope. Soc Sci Med. 2005;61(5):1095–1105.
   PubMed Web of Science ®Google Scholar
• Bluvol A. The codman award paper: quality of life in stroke survivors and their spouses: predictors and clinical implications for rehabilitation teams. Axone. 2003;25(2):10–19.
   PubMedGoogle Scholar
• Tariah HA, Hersch G, Ostwald SK. Factors associated with quality of life: perspectives of stroke survivors. Phys Occup Ther Geriatr. 2006;25(2):33–50.
   Google Scholar
• Antelius E. The meaning of the present: hope and foreclosure in narrations about people with severe brain damage. Med Anthropol Q. 2007;21(3):324–342.
   PubMed Web of Science ®Google Scholar
• Chamberlain DJ. The experience of surviving traumatic brain injury. J Adv Nurs. 2006;54(4):407–417.
   PubMed Web of Science ®Google Scholar
• Cross A, Schneider M. A preliminary qualitative analysis of the impact of hope on stroke recovery in women. Top Stroke Rehabil. 2010;17(6):484–495.
   PubMed Web of Science ®Google Scholar
• Flynn K, Daiches A, Weatherhead S. Brain injury narratives: an undercurrent into the rest of your life. In: Weatherhead S, Todd D, editors. Narrative approaches to brain injury. 1st ed. London: Karnac Books; 2014. p. 27–50.
   Google Scholar
• Jones F, Mandy A, Partridge C. Reasons for recovery after stroke: a perspective based on personal experience. Disabil Rehabil. 2008;30(7):507–516.
   PubMed Web of Science ®Google Scholar
• Schutz REC, Coats HL, Engelberg RA, et al. Is there hope? Is she there? How families and clinicians experience severe acute brain injury. J Palliat Med. 2017;20(2):170–176.
   PubMed Web of Science ®Google Scholar
• Tutton E, Seers K, Langstaff D, et al. Staff and patient views of the concept of hope on a stroke unit: a qualitative study. J Adv Nurs. 2012;68(9):2061–2069.
   PubMed Web of Science ®Google Scholar
• Soundy A, Smith B, Butler M, et al. A qualitative study in neurological physiotherapy and hope: beyond physical improvement. Physiother Theory Pract. 2010;26(2):79–88.
   PubMedGoogle Scholar
• Disability in Australia: acquired brain injury [Internet]. Australia: Australian Institute of Health and Welfare; 2007 [updated 2017 Nov 11; cited 2018 Jan 29]. Available from: https://www.aihw.gov.au/reports/disability-services/disability-australia-acquired-brain-injury/contents/table-of-contents.
   Google Scholar
• Ergh TC, Rapport LJ, Coleman RD, et al. Predictors of caregiver and family functioning following traumatic brain injury: social support moderates caregiver distress. J Head Trauma Rehabil. 2002;17(2):155–174.
   PubMed Web of Science ®Google Scholar
• Norup A, Mortensen EL. Prevalence and predictors of personality change after severe brain injury. Arch Phys Med Rehabil. 2015;96(1):56–62.
   PubMed Web of Science ®Google Scholar
• Ponsford J, Sloan S, Snow P. Traumatic brain injury: rehabilitation for everyday adaptive living. 2nd ed. Hove, East Sussex (UK): Psychology Press; 2013.
   Google Scholar
• Ashley M, Leal R, Mehta Z, et al. Cognitive disorders: diagnosis and treatment. In: Ashley M, editor. Traumatic brain injury: rehabilitation, treatment and case management. Boca Raton (FL): Taylor and Francis Group; 2010. p. 583–620.
   Google Scholar
• Riley GA. Stress and depression in family carers following traumatic brain injury: the influence of beliefs about difficult behaviours. Clin Rehabil. 2007;21(1):82–88.
   PubMed Web of Science ®Google Scholar
• Deroon-Cassini TA, Mancini AD, Rusch MD, et al. Psychopathology and resilience following traumatic injury: a latent growth mixture model analysis. Rehabil Psychol. 2010;55(1):1–11.
   PubMed Web of Science ®Google Scholar
• Townshend J, Norman A. The secondary impact of traumatic brain injury: an interpretative phenomenological analysis of the experiences of family and friends. Fam J. 2018;26(1):77–85.
   Web of Science ®Google Scholar
• Arnaert A, Filteau N, Sourial R. Stroke patients in the acute care phase: role of hope in self-healing. Holist Nurs Pract. 2006;20(3):137–146.
   PubMedGoogle Scholar
• Bays CL. Older adults' descriptions of hope after a stroke. Rehabil Nurs. 2001;26(1):18–27.
   PubMedGoogle Scholar
• Simpson G, Anderson M, Jones K, et al. Do spirituality, resilience and hope mediate outcomes among family caregivers after traumatic brain injury or spinal cord injury? A structural equation modelling approach. NeuroRehabilitation. 2020;46(1):3–15.
   PubMed Web of Science ®Google Scholar
• Barker RN, Brauer SG. Upper limb recovery after stroke: the stroke survivors' perspective. Disabil Rehabil. 2005;27(20):1213–1223.
   PubMed Web of Science ®Google Scholar
• Bright FAS, Kayes NM, McCann CM, et al. Understanding hope after stroke: a systematic review of the literature using concept analysis. Top Stroke Rehabil. 2011;18(5):490–508.
   PubMed Web of Science ®Google Scholar
• Alaszewski A, Wilkinson I. The paradox of hope for working age adults recovering from stroke. Health. 2015;19(2):172–187.
   PubMed Web of Science ®Google Scholar
• Lewis SC, Dennis MS, O'Rourke SJ, et al. Negative attitudes among short-term stroke survivors predict worse long-term survival. Stroke: J Am Heart Assoc. 2001;32(7):1640–1645.
   PubMed Web of Science ®Google Scholar
• McCormack B, McCance T. Person-centred practice in nursing and health care: theory and practice. 2nd ed. Newark (NJ): John Wiley & Sons, Incorporated; 2016.
   Google Scholar
• Bronfenbrenner U. The ecology of human development: experiments by nature and design. Cambridge (MA): Harvard University Press; 1979.
   Google Scholar
• Golden SD, McLeroy KR, Green LW, et al. Upending the social ecological model to guide health promotion efforts toward policy and environmental change. Health Educ Behav. 2015;42(1 Suppl):8S–14S.
   PubMedGoogle Scholar
• McLeroy KR, Bibeau D, Steckler A, et al. An ecological perspective on health promotion programs. Health Educ Q. 1988;15(4):351–377.
   PubMedGoogle Scholar
• Lounsbury DW, Mitchell SG. Introduction to special issue on social ecological approaches to community health research and action. Am J Community Psychol. 2009;44(3-4):213–220.
   PubMed Web of Science ®Google Scholar
• Trickett EJ. Multilevel community-based culturally situated interventions and community impact: an ecological perspective. Am J Community Psychol. 2009;43(3-4):257–266.
   PubMed Web of Science ®Google Scholar
• Simplican SC, Leader G, Kosciulek J, et al. Defining social inclusion of people with intellectual and developmental disabilities: an ecological model of social networks and community participation. Res Dev Disabil. 2015;38:18–29.
   PubMed Web of Science ®Google Scholar
• Walker HM, Calkins C, Wehmeyer ML, et al. A social-ecological approach to promote self-determination. Exceptionality. 2011;19(1):6–18.
   Web of Science ®Google Scholar
• Kim H, Sefcik JS, Bradway C. Characteristics of qualitative descriptive studies: a systematic review. Res Nurs Health. 2017;40(1):23–42.
   PubMed Web of Science ®Google Scholar
• Merriam SB, Tisdell EJ. Qualitative research: a guide to design and implementation. 4th ed. San Francisco (CA): Jossey-Bass; 2016.
   Google Scholar
• Merleau-Ponty M. Phenomenology of perception. London: Routledge & Kegan Paul; 1962.
   Google Scholar
• Saldana J. Fundamentals of qualitative research: understanding qualitative research. New York (NY): Oxford University Press; 2011.
   Google Scholar
• Kafle NP. Hermeneutic phenomenological research method simplified. Bodhi: Interdisciplinary J. 2013;5(1):181–200.
   Google Scholar
• Heidegger M. Being and time. Macquarrie J, Robinson E, translators. New York (NY): Harper & Row.
   Google Scholar
• Laverty SM. Hermeneutic phenomenology and phenomenology: a comparison of historical and methodological considerations. Int J Qual Methods. 2003;2(3):21–35.
   Google Scholar
• Polit DF, Tatano Beck C. Nursing research: principles and methods. 7th ed. Philadelphia (PA): Lippincott Williams and Wilkins; 2004.
   Google Scholar
• Stichler JF, Hamilton DK. Theoretical and conceptual frameworks in research and practice. HERD. 2008;1(4):4–6.
   PubMedGoogle Scholar
• Lopez KA, Willis DG. Descriptive versus interpretive phenomenology: their contributions to nursing knowledge. Qual Health Res. 2004;14(5):726–735.
   PubMed Web of Science ®Google Scholar
• Griffith DA, Morris ES, Thakar V. Spatial autocorrelation and qualitative sampling: the case of snowball type sampling designs. Ann Am Assoc Geogr. 2016;106(4):773–787.
   Web of Science ®Google Scholar
• Denzin NK, Lincoln YS. Handbook of qualitative research. Thousand Oaks (CA): Sage; 1994.
   Google Scholar
• Kuzel AJ. Sampling in qualitative inquiry. In: Crabtree BF, Miller WL, editors. Doing qualitative research. Thousand Oaks (CA): Sage; 1999. p. 33–45.
   Google Scholar
• Morse JM. Determining sample size. Qual Health Res. 2000;10(1):3–5.
   Web of Science ®Google Scholar
• Smith JA, Flowers P, Larkin M. Interpretative phenomenological analysis: theory, method and research. London: Sage; 2009.
   Google Scholar
• Ayres L. Semi-structured interview. In: Given LM, editor. The SAGE encyclopedia of qualitative research methods. Thousand Oaks (CA): Sage; 2008. p. 810–811.
   Google Scholar
• Bourgeault I, Dingwall R, De Vries R. The SAGE handbook of qualitative methods in health research. London: SAGE; 2010.
   Google Scholar
• Brinkmann S. Qualitative interviewing: understanding qualitative research. 1st ed. Oxford (MS): Oxford University Press; 2013.
   Google Scholar
• Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.
   Google Scholar
• Nowell LS, Norris JM, White DE, et al. Thematic analysis: striving to meet the trustworthiness criteria. Int J Qual Methods. 2017;16(1):1–13.
   Web of Science ®Google Scholar
• Creswell JW. Research design: qualitative, quantitative, and mixed methods approaches. 3rd ed. Thousand Oaks (CA): SAGE Publications; 2009.
   Google Scholar
• Kvale S. Chapter 2, Epistemological issues of interviewing. In: Doing interviews. London: Sage; 2007. p. 11–22.
   Google Scholar
• Miller RL. Deconstructing the epistemological question with a focus on the knower. In: Fortune AE, Reid WJ, Miller RL, editors. Qualitative research in social work. New York (NY): Columbia University Press; 2013. p. 61–80.
   Google Scholar
• Ritchie J, Lewis J, Nicholls CM, et al. Qualitative research practice: a guide for social science students and researchers. London: Sage; 2013.
   Google Scholar
• Mann S. The research interview: reflective practice and reflexivity in research processes. London: Palgrave MacMillan UK; 2016.
   Google Scholar
• Berger R. Now I see it, now I don’t: researcher’s position and reflexivity in qualitative research. Qual Res. 2015;15(2):219–234.
   Web of Science ®Google Scholar
• Ramani S, Könings KD, Mann K, et al. A guide to reflexivity for qualitative researchers in education. Acad Med. 2018;93(8):1257.
   PubMedGoogle Scholar
• Finlay L. Engaging phenomenological analysis. Qual Res Psychol. 2014;11(2):121–141.
   Web of Science ®Google Scholar
• Nilsson I, Jansson L, Norberg A. To meet with a stroke: patients' experiences and aspects seen through a screen of crises. J Adv Nurs. 1997;25(5):953–963.
   PubMed Web of Science ®Google Scholar
• Fisher A, Bellon M, Lawn S, et al. Family-directed approach to brain injury (FAB) model: a preliminary framework to guide family-directed intervention for individuals with brain injury. Disabil Rehabil. 2019;41(7):854–860.
   PubMed Web of Science ®Google Scholar
• Dickey SL. The association between intrapersonal, interpersonal and community factors and prostate cancer screening among african american men [dissertation]. Tallahassee (FL): Florida State University; 2013.
   Google Scholar
• Gum A, Snyder CR, Duncan PW. Hopeful thinking, participation, and depressive symptoms three months after stroke. Psychol Health. 2006;21(3):319–334.
   Web of Science ®Google Scholar
• Peleg G, Barak O, Harel Y, et al. Hope, dispositional optimism and severity of depression following traumatic brain injury. Brain Inj. 2009;23(10):800–808.
   PubMed Web of Science ®Google Scholar
• White JH, Magin P, Attia J, et al. Exploring poststroke mood changes in community-dwelling stroke survivors: a qualitative study. Arch Phys Med Rehabil. 2008;89(9):1701–1707.
   PubMed Web of Science ®Google Scholar
• Nyambe A, Van Hal G, Kampen JK. Screening and vaccination as determined by the social ecological model and the theory of triadic influence: a systematic review. BMC Public Health. 2016;16(1):1–15.
   PubMed Web of Science ®Google Scholar
• Kuipers P, Doig E, Kendall M, et al. Hope: a further dimension for engaging family members of people with ABI. NeuroRehabilitation. 2014;35(3):475–480.
   PubMed Web of Science ®Google Scholar
• Amati M, Grignoli N, Rubinelli S, et al. The role of hope for health professionals in rehabilitation: a qualitative study on unfavorable prognosis communication. Plos One. 2019;14(10):e0024394.
   Web of Science ®Google Scholar
• Soderlund PD. The social ecological model and physical activity interventions for hispanic women with type 2 diabetes: a review. J Transcult Nurs. 2017;28(3):306–314.
   PubMed Web of Science ®Google Scholar
• Bellon M, Sando S, Crocker R, et al. Information, connection and giving back: peer support outcomes for families following acquired brain injury in South Australia. Health Soc Care Community. 2017;25(1):204–214.
   PubMed Web of Science ®Google Scholar
• Wobma R, Nijland RHM, Ket JCF, et al. Evidence for peer support in rehabilitation for individuals with acquired brain injury: a systematic review. J Rehabil Med. 2016;48(10):837–840.
   PubMed Web of Science ®Google Scholar
• What is the NDIS [Internet]. Australia: National Disability Insurance Agency; 2021 [cited 2021 Sep 23]. Available from: https://www.ndis.gov.au/understanding/what-ndis.
   Google Scholar
• How the NDIS works [Internet]. Australia: National Disability Insurance Agency; 2021 [cited 2021 Sep 23]. Available from: https://www.ndis.gov.au/understanding/how-ndis-works.
   Google Scholar
• Paterson B, Scott-Findlay S. Critical issues in interviewing people with traumatic brain injury. Qual Health Res. 2002;12(3):399–409.
   PubMed Web of Science ®Google Scholar
• Durham C, Ramcharan P. Acquired brain injury. In: Insight into acquired brain injury: factors for feeling and faring better. Singapore: Springer; 2018. p. 1–29.
   Google Scholar
• Grinyer A, Thomas C. et al. The value of interviewing on multiple occasions or longitudinally. In: Gubrium JF, Holstein JA, Marvasti AB, editors. The SAGE handbook of interview research: the complexity of the craft. 2nd ed. Thousand Oaks (CA): SAGE Publications; 2012. p. 219–230.
   Google Scholar
• Dillahunt-Aspillaga C, Agonis-Frain J, Hanson A, et al. Applying a resiliency model to community reintegration and needs in families with traumatic brain injury: implications for rehabilitation counselors. sgrjarc. 2014;45(1):25–36.
   Google Scholar
• Frain J, Dillahunt-Aspillaga T, Frain M, et al. Family resiliency, family needs, and community reintegration in persons with brain injury. Rehabil Res Policy Educ. 2014;28(2):91–110.
   Google Scholar
• Simpson G, Jones K. How important is resilience among family members supporting relatives with traumatic brain injury or spinal cord injury? Clin Rehabil. 2013;27(4):367–377.
   PubMed Web of Science ®Google Scholar