Who are relatives? Young adults, relatives and professionals’ perceptions of relatives during the rehabilitation of young adults with a severe acquired brain injury

References

• World Health Organization. WHO global strategy on people-centred and integrated health services: interim report. Geneva: World Health Organization; 2015.
   Google Scholar
• Benedictus MR, Spikman JM, van der Naalt J. Cognitive and behavioral impairment in traumatic brain injury related to outcome and return to work. Arch Phys Med Rehabil. 2010;91(9):1436–1441.
   PubMed Web of Science ®Google Scholar
• Langlois JA, Rutland-Brown W, Wald MM. The epidemiology and impact of traumatic brain injury: a brief overview. J Head Trauma Rehabil. 2006;21(5):375–378.
   PubMed Web of Science ®Google Scholar
• Bakmann L, Norup A, Forchhammer BH. Hit in the heart of life: How meeting like-minded peers may contribute to psychosocial recovery of adolescents and young adults with acquired brain injury. Front Neurol. 2019;10:521.
   PubMed Web of Science ®Google Scholar
• Jespersen LN, Michelsen SI, Tjørnhøj-Thomsen T, et al. Living with a disability: a qualitative study of associations between social relations, social participation and quality of life. Disabil Rehabil. 2019;41(11):1275–1286.
   PubMed Web of Science ®Google Scholar
• Morton MV, Wehman P. Psychosocial and emotional sequelae of individuals with traumatic brain injury: a literature review and recommendations. Brain Inj. 1995;9(1):81–92.
   PubMed Web of Science ®Google Scholar
• Brzuzy S, Speziale BA. Persons with traumatic brain injuries and their families: living arrangements and well-being post injury. Soc Work Health Care. 1997;26(1):77–88.
   PubMed Web of Science ®Google Scholar
• Gagnon A, Lin J, Stergiou-Kita M. Family members facilitating community re-integration and return to productivity following traumatic brain injury – motivations, roles and challenges. Disabil Rehabil. 2016;38(5):433–441.
   PubMed Web of Science ®Google Scholar
• Danish Health Authority and National Board of Social Services. Koncept for systematisk inddragelse af pårørende [Conceptualising systematic involvement of relatives]. Odense C: Socialstyrelsen and SST; 2018 [cited 2022 May 03]. Available from: https://socialstyrelsen.dk/udgivelser/koncept-for-systematisk-inddragelse-af-parorende
   Google Scholar
• Andelic N, Arango-Lasprilla J, Perrin PB, et al. Modeling of community integration trajectories in the first five years after traumatic brain injury. J Neurotrauma. 2016;33(1):95–100.
   PubMed Web of Science ®Google Scholar
• Foster AM, Armstrong J, Buckley A, et al. Encouraging family engagement in the rehabilitation process: a rehabilitation provider's development of support strategies for family members of people with traumatic brain injury. Disabil Rehabil. 2012;34(22):1855–1862.
   PubMed Web of Science ®Google Scholar
• Rauch RJ, Ferry SM. Social networks as support interventions following traumatic brain injury. NRE. 2001;16(1):11–16.
   Google Scholar
• Jones JM, Haslam SA, Jetten J, et al. That which doesn't kill us can make us stronger (and more satisfied with life): the contribution of personal and social changes to well-being after acquired brain injury. Psychol Health. 2011;26(3):353–369.
   PubMed Web of Science ®Google Scholar
• Haines KJ. Engaging families in rehabilitation of people who are critically ill: an underutilized resource. Phys Ther. 2018;98(9):737–744.
   PubMed Web of Science ®Google Scholar
• Ministry of Health and Prevention. Dialogpapir om øget inddragelse af patienter og pårørende [Dialogue paper of increased involvement of patients and relatives]; 2014 [cited 2022 May 03]. Available from: https://sum.dk/Media/7/F/01-Dialogpapir-om-oeget-inddrag-af-patienter-paaroerende.pdf
   Google Scholar
• National Commitee on Health Research Ethics. Vejledning om det informerede og stedfortraedende samtykke i sundhedsvidenskabelige forskningsprojekter [Guideline of the informed and acting consent in health scientific research projects] [Internet]; 2017 [cited 2022 Feb 27]. Available from: https://www.nvk.dk/emner/information-og-samtykke-i-forsoeg/vejledning-om-samtykke-i-forsoeg
   Google Scholar
• Schipper K, Widdershoven GA, Abma TA. Citizenship and autonomy in acquired brain injury. Nurs Ethics. 2011;18(4):526–536.
   PubMed Web of Science ®Google Scholar
• Heaney CA, Israel BA. Social networks and social support. Health Behav Health Educ. 2008;4:189–210.
   Google Scholar
• Guldager R, Larsen KB, Poulsen I. Forskning med patienter uden handleevne: Lovgivning og etiske overvejelser. KS. 2017;31(2):153–157.
   Google Scholar
• Pape TL, Oddi Jaffe N, Savage T, et al. Unresolved legal and ethical issues in research of adults with severe traumatic brain injury: analysis of an ongoing protocol. J Rehab Res Develop. 2004;41(2):155–174
   PubMedGoogle Scholar
• Danish Health Authority. Forløbsprogram for rehabilitering af voksne med en erhvervet hjerneskade [Disease management program of rehabilitation of adults with an acquired brain Injury]; 2011 [cited 2022 May 03]. Available from: https://www.hospitalsenhedmidt.dk/siteassets/hammel-neurocenter/downloads/sundhedsstyrelsen/forloebsprogramvoksnehjernetraume.pdf
   Google Scholar
• Valtorta NK, Kanaan M, Gilbody S, et al. Loneliness, social isolation and social relationships: What are we measuring? A novel framework for classifying and comparing tools. BMJ Open. 2016;6(4):e010799.
   PubMed Web of Science ®Google Scholar
• Hurlbert JS, Haines VA, Beggs JJ. Core networks and tie activation: what kinds of routine networks allocate resources in nonroutine situations? Am Sociol Rev. 2000;65(4):598.
   Web of Science ®Google Scholar
• Spencer L, Pahl R. Rethinking friendship: hidden solidarities today. Princeton: Princeton University Press; 2006.
   Google Scholar
• Pahl R, Spencer L. Family, friends, and personal communities: changing models‐in‐the‐mind. J Fam Theory Rev. 2010;2(3):197–210.
   Google Scholar
• Giddens A. The consequences of modernity. Cambridge (UK): Polity Press in association with Basil Blackwell, Oxford, UK; 1990.
   Google Scholar
• Flick U. Triangulation in data collection. London: SAGE Publications Ltd; 2018.
   Google Scholar
• General Assembly of the World Medical Association. World medical association declaration of helsinki: ethical principles for medical research involving human subjects. J Am College Dentists. 2014;81(3):14–18.
   PubMedGoogle Scholar
• National Board of Health. Brain injury – a health technology assessment; 2011 [cited 2022 May 03]. Available from: https://www.sst.dk/da/udgivelser/2011//-/media/Udgivelser/2011/Publ2011/MTV/Hjerneskaderehabilitering/Hjerneskaderehabilitering-%E2%80%93-en-medicinsk-teknologivurdering-Hovedrapport.ashx
   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
• Murphy J, Mercer SW, Duncan EA. A pilot study to explore the feasibility, validity and reliability of a visual version of the CARE measure. Int J Therapy Rehab. 2013;20(9):460–465.
   Google Scholar
• Murphy J, Tester S, Hubbard G, et al. Enabling frail older people with a communication difficulty to express their views: the use of talking mats as an interview tool. Health Soc Care Community. 2005;13(2):95–107.
   PubMed Web of Science ®Google Scholar
• Barbour R. Doing focus groups. London: Sage; 2008.
   Google Scholar
• Halkier BF. Fokusgrupper [Focus groups] 3rd ed. Frederiksberg: Samfundslitteratur; 2016.
   Google Scholar
• Fischer CS. To dwell among friends: personal networks in town and city/. Chicago: University of Chicago Press; 1982.
   Google Scholar
• Scott J. Social network analysis: a handbook. London: SAGE Publications, Ltd; 2000.
   Google Scholar
• Alexander ML. Qualitative social network research for relational sociology. The Future of Sociology. The annual conference of The Australian Sociological Association; 2009 Dec 1-4; Canberra: Australian National University. Griffith Research Online; 2009.
   Google Scholar
• Heath S, Fuller A, Johnston B. Chasing shadows: defining network boundaries in qualitative social network analysis. Qualitative Research. 2009;9(5):645–661.
   Web of Science ®Google Scholar
• Trotter RT. Friends, relatives and relevant others: conducting ethnographic network studies. Map Social Network Spatial Data Hid Populat. 1999;4:1–49.
   Google Scholar
• Jacobsen MH, Duedahl P. Introduktion til dokumentanalyse. [An Introduction to document analysis]. Odense: Syddansk Universitetsforlag; 2010.
   Google Scholar
• Kropp K. Registrantanalyse: Historiseringen af et felt via dokumenter. [Document review analysis: the historising of a field via documents] In Refleksiv sociologi i praksis: Empiriske undersøgelser inspireret af Pierre Bourdieu. Hans Reitzels Forlag; 2009; p. 173–189.
   Google Scholar
• Borgatti SP. E. Analyzing social networks. Thousand Oaks: SAGE; 2013.
   Google Scholar
• Granovetter MS. The strength of weak ties. Am J Sociology. 1973;78(6):1360–1380.
   Web of Science ®Google Scholar
• NVivo [Software]. Version 11. QSR International Pty Ltd.; 2015. Available from: https://www.qsrinternational.com/nvivo-qualitative-data-analysis-software/home
   Google Scholar
• Terry G, Hayfield N, Clarke V, et al. Thematic analysis. Vol. 2. In: The SAGE handbook of qualitative research in Psychology. London: SAGE Publications Ltd; 2017. p. 17–37.
   Google Scholar
• Tavory I, Timmermans S. Abductive analysis: theorizing qualitative research. Chicago: University of Chicago Press; 2014.
   Google Scholar
• Doser K, Norup A. Caregiver burden in Danish family members of patients with severe brain injury: the chronic phase. Brain Inj. 2016;30(3):334–342.
   PubMed Web of Science ®Google Scholar
• Manskow US. Caregivers to patients with severe traumatic brain injury. A national prospective study on caregiver burden, life satisfaction and health care experiences. UiT The Arctic University of Norway; 2017.
   Google Scholar
• Larsen K. Det behandlende hus er blevet sygt: sociologiske og historiske perspektiver på patientforløb [The house of treatment has become sick: sociological and historical perspectives on patient courses]. In: Timm H, editor. Sammenhaengende forløb i sundhedsvaesenet 2010. Videnscenter for Sammenhaengende Forløb-i social-og sundhedssektoren. København: Professionshøjskolen Metropol; p. 39–64.
   Google Scholar
• Roenn-Smidt H, Larsen K, Pallesen H. The practices of body in rehabilitation after stroke: a qualitative study of how physiotherapy affects identity reconstruction. Eur J Physiother. 2021;23(5):270–279.
   Web of Science ®Google Scholar
• Soendergaard PL, Wolffbrandt MM, Biering-Sørensen F, et al. A manual-based family intervention for families living with the consequences of traumatic injury to the brain or spinal cord: a study protocol of a randomized controlled trial. Trials. 2019;20(1):646.
   PubMedGoogle Scholar
• Bourdieu P. Practical reason: on the theory of action. Stanford: Stanford University Press; 1998.
   Google Scholar
• World Health Organization (WHO). The international classification of functioning, disability and health. Geneva: WHO; 2001.
   Google Scholar
• Almquist ZW. Random errors in egocentric networks. Soc Networks. 2012;34(4):493–505.
   PubMed Web of Science ®Google Scholar
• Bourdieu P. The weight of the world: social suffering in contemporary society. Oxford: Polity Press; 1999.
   Google Scholar