Keywords: brain injury, homelessness, co-productio

Atherton, Alistair

Brooks, Jennifer

Colbeck, Matthew

Fortescue, Deborah

Grant, Steph

Vanderhoven, Dave

Sheffield Hallam University Research Archive

Experiences of Homelessness and Brain InjuryGRANT, Steph, ATHERTON, Alistair, BROOKS, Jennifer, COLBECK, Matthew, FORTESCUE, Deborah and VANDERHOVEN, DaveAvailable from Sheffield Hallam University Research Archive (SHURA) at:http://shura.shu.ac.uk/13718/This document is the author deposited version.  You are advised to consult the publisher's version if you wish to cite from it.Published versionGRANT, Steph, ATHERTON, Alistair, BROOKS, Jennifer, COLBECK, Matthew, FORTESCUE, Deborah and VANDERHOVEN, Dave (2016). Experiences of Homelessness and Brain Injury. Project Report. Homelessness and Head Injury Research Group. Repository use policyCopyright © and Moral Rights for the papers on this site are retained by the individual authors and/or other copyright owners. Users may download and/or print one copy of any article(s) in SHURA to facilitate their private study or for non-commercial research. You may not engage in further distribution of the material or use it for any profit-making activities or any commercial gain.Sheffield Hallam University Research Archivehttp://shura.shu.ac.ukExperiences of homelessness and brain injury   1 | P a g e   Head Injury and Homelessness Research Group Background Research1,2,3,4 suggests that the prevalence of traumatic brain injury in the homeless population is much higher than in the general population. This is consistent with general poor health amongst homeless people5.    The consequences of TBI can pose particular problems for homeless people. People with a TBI may be reluctant to seek help, and even if they do receive appropriate brain injury support, the long term neurological effects of their brain injuries combined with their lack of stable housing may leave them unable to rely on family, or to implement some of the strategies suggested for cognitive rehabilitation, for example establishing routines to build functional independence. In addition, maintaining health status and managing health conditions after a brain injury is challenging for brain injured people6,7.  The causal relationship between TBI and homelessness is not established, yet studies have shown very high rates (70%8 and 90%9) of homeless people with a brain injury reporting their first injury occurring before they became homeless. The reported prevalence of TBI amongst the homeless population suggests this is a significant issue, yet TBI is seldom mentioned in homelessness research and strategies.   Methods This research was co-produced by the Head Injury and Homelessness Research Group, and was led by Steph Grant, a brain injury survivor with experience of homelessness.  We reĐruited partiĐipaŶts through BeŶ͛s CeŶtre for Vulnerable People10, who used the Brain Injury Screening Index11 to ascertain if people had a history of head injury and were likely to have sustained a TBI. Interviews were conducted in the summer of 2016 by Steph Grant and Alistair Atherton together and a total of fiǀe ŵeŶ ǁere iŶterǀieǁed for the researĐh.  All iŶterǀieǁs ǁere held at BeŶ͛s CeŶtre for Vulnerable People, a place deemed to be safe and familiar for the interviewees. The Head Injury and Homelessness Research Group transcribed and analysed the interview material, with additional analysis meetings being held with academics and other stakeholders. This report was co-produced by the Head Injury and Homelessness Research Group in September 2016. The research was led by Steph Grant, a brain injury survivor with experience of homelessness For further information about this research please contact Jenni Brooks:   j.brooks@shu.ac.uk    0114 225 5991  Steph Grant:   steph.grant@shsc.nhs.uk A short film about the research will be available soon.   Experiences of homelessness and brain injury   2 | P a g e   Head Injury and Homelessness Research Group Findings Interactions with services All of the men were taken to hospital after their head injuries, yet this did not necessarily lead to longer term rehabilitation. Only one of the five participants recalled being referred to the Head Injury Rehabilitation Centre, and he only attended once.  The support the men were receiving varied and included anti-depressants, counselling, alcohol support, mental health services, tenancy support, and contact with social workers and Turning Point. However, no one was receiving specialist support directly related to brain injury, and several opportunities to provide support appear to have been missed.  ͚I ǁas supposed to see a soĐial ǁoƌkeƌ [iŶ hospital] ďut theǇ Ŷeǀeƌ Đaŵe to see ŵe͛ (Edward) ͚TheǇ used to help ŵe fƌoŵ jail… I͛ǀe had Ŷo help at all the last feǁ tiŵes. WheŶ I Đaŵe out, I had Ŷoǁheƌe to liǀe, Ŷo ŵoŶeǇ, I ŵeaŶ, ǁhat aƌe Ǉou supposed to do?͛ (David) There seemed to be a lack of trust between the men and service providers, which in some cases was associated with a lack of engagement from both sides. Some men reported a lack of respect by soŵe serǀiĐe proǀiders, aŶd felt they soŵetiŵes ǁereŶ͛t takeŶ seriously.  ͚“he [the soĐial ǁoƌkeƌ] alǁaǇs seeŵs too ďusǇ, it͛s alǁaǇs late, aŶd iŶstead of aŶ houƌ I get 25 ŵiŶutes͛ (Barry) There was a perception by some of the men that their head injury had not been properly acknowledged, and they had been dismissed as a ͚juŶkie alĐoholiĐ͛ or trouďleŵaker.  ͚NoďodǇ listeŶs, it͛s just ͞heƌe͛s this dƌuŶkeŶ ďastaƌd͛͟ (David) Some of the men acknowledged their own lack of engagement with services, describing how they had, for example, discharged themselves from hospital before being treated, or missed appointments that had been arranged for them.   'I wanted to get out, I just, I know what to look for in myself' (Barry) 'I had one recently [a meeting with tenancy support] but it didn't happen. I don't whether it ǁas ŵe oƌ… it just didŶ't happeŶ. Got the daǇ ǁƌoŶg, soŵethiŶg…' (Charlie)   Experiences of homelessness and brain injury   3 | P a g e   Head Injury and Homelessness Research Group The reality of being homeless with a brain injury  The men described experiencing a range of symptoms after their head injuries, from physical symptoms such as headaches, dizziness, loss of balance, swelling, to psychological and other symptoms, such as anger, loss of confidence, panic attacks, difficulty concentrating, depression, alcohol addiction and memory loss.  ͚I͛ǀe got so ŵuĐh aŶgeƌ iŶside ŵe… I͛ǀe piĐked fights aŶd let people hit ŵe… I doŶ͛t Đaƌe, theǇ ĐaŶ͛t huƌt ŵe, ĐaŶ͛t huƌt ŵe͛ (David) These can be difficult to deal with, particularly given their vulnerable living situations.  The men reported many violent incidents throughout their lives, in some cases from childhood, and in many cases leading to head injuries of varying levels of severity. Some talked about their own violent behaviour, and how this had on occasion led to jail. The men recounted how they had been hit with a lump hammer, bottle, tin of paint, pool balls in a sock, and one had been strangled with a shower hose. ͚I saǁ luŵp haŵŵeƌ shapes ďeiŶg sŵaĐked thƌough the dooƌ… hoƌƌiďle feeliŶg, tƌapped… I just ƌeŵeŵďeƌ ďig flashes of staƌ ďuƌstiŶg, puffs, puffs of light… I had ŵǇ tǀ sŵashed oǀeƌ ŵǇ head… I ǁeŶt to hospital ďeĐause ďlood just ǁouldŶ͛t stop ĐoŵiŶg out of a ǁouŶd oŶ the ďaĐk of ŵǇ head͛ (Barry) The violence described was often brutal, sometimes premeditated, and often seemingly carried out with intent to kill or with significant disregard for the life of the victim.  Coping strategies The men had developed a range of coping strategies to deal with their situatioŶs. ͚Hoŵe͛ ǁas Ŷot necessarily seen as a place of safety - two men had been attacked in their own homes, and one of them was too scared to return to his home. Several talked of isolating themselves from other people (which could potentially account for them losing contact with services), and finding places and people they could feel safe with.   ͚I͛ŵ sĐaƌed to death of aŶǇoŶe touĐhiŶg ŵǇ faĐe, ƌe-fƌaĐtuƌiŶg it… I take ŵǇself aǁaǇ fƌoŵ eǀeƌǇďodǇ… I͛ŵ sĐaƌed to death of gettiŶg iŶ a ďƌaǁl, oƌ ďeiŶg iŶ the ǁƌong place at the ǁƌoŶg tiŵe͛ (Edward) ͚I͛ǀe got plaĐes that aƌe little hideouts that I ĐaŶ go ǁheƌe I ĐaŶ ďƌeathe ƋuietlǇ, ǁheƌe nobody can find me. I tend to spend a lot of time in the library with my back to the wall, ďeĐause… I like the peaĐe, I like the Ƌuiet of it͛ (Barry) Experiences of homelessness and brain injury   4 | P a g e   Head Injury and Homelessness Research Group One man however had secured a more stable position than previously held, and was doing voluntary work several days each week, which he found was a good way to keep busy. This indicates the potential value of community integration for people with TBI, both for the individual and the community in development of personal identity and contribution to society.  ͚WheŶ I ǁake up eǀeƌǇ ŵoƌŶiŶg aŶd I͛ǀe got soŵe taƌgets to do, aŶd I feel useful Ŷot useless, it͛s ŵuĐh ďetteƌ foƌ ŵe… I͛ǀe got lots of eǆpeƌieŶĐe aďout life oŶ the stƌeet… aŶd I ĐaŶ use this to help otheƌ people͛ (Arthur) The men also shared some positive stories about their identities, with one feeling that he had gained enough experience to help others, whilst another described himself as articulate, a painter and a musician. They also talked resiliently about being able to cope with whatever life threw at them ͚ListeŶ, I͛ll get thƌough it, I͛ŵ a soldieƌ… I͛ǀe got it easǇ ŵate͛ (Edward) Despite this, the men acknowledged that life was not always easy when you had a TBI, especially on the streets.  ͚You see, ǁheŶ Ǉou͛ƌe ďƌaiŶ iŶjuƌed it doesŶ't ŵeaŶ Ǉou͛ƌe iŶĐapaďle. It just ŵeaŶs eǀeƌǇthiŶg͛s haƌdeƌ… Ǉou kid Ǉouƌself, Ǉou saǇ I͛ŵ alƌight JaĐk, I͛ŵ ok. NothiŶg͛s ďotheƌiŶg me. And befoƌe Ǉou kŶoǁ it, thiŶgs pile up, Ǉou get deďts, Ǉou͛ƌe out oŶ the stƌeet͛ (Charlie) Having a support network has proven to provide invaluable help for people with TBI, however this was not always available and, if families and friends themselves have not been supported to understand the problems and challenges facing people with a brain injury, they may not necessarily understand or know how to help.  ͚MǇ faŵilǇ doŶ͛t uŶdeƌstaŶd, theǇ just thiŶk ah, he͛s a ŵad alĐoholiĐ… I͛ǀe ĐhaŶged.͚ (David) As a result, there was a general feeling of having nobody to talk to and to being alone as some stated that friends could not always be trusted to provide consistent or reliable support.  ͚Oh god, it kills Ǉou. “oŵetiŵes it kills Ǉou. You ǁaŶt soŵeoŶe to ďe theƌe. You ǁaŶt soŵeoŶe to saǇ it͛s ok, Ǉou ǁaŶt soŵeoŶe to saǇ it͛s alƌight. That͛s ǁhat Ǉou feel, that͛s ǁhat Ǉou ǁaŶt… aŶd that͛s ǁhat Ǉou Ŷeed. It͛s Ŷot alǁaǇs theƌe though͛ (Charlie) Perhaps because of this, the men expressed appreciation at being able to talk about their lives in the interviews, despite sometimes finding it difficult.  ͚I Ŷeǀeƌ opeŶed up like this to aŶǇďodǇ, to Ŷo-oŶe, I haǀeŶ͛t… I͛ŵ glad, it͛s good to talk to people that listeŶ… It͛s good to get thiŶgs out, I haǀeŶ͛t Đƌied so ŵuĐh iŶ Ǉeaƌs͛ (David)  Experiences of homelessness and brain injury   5 | P a g e   Head Injury and Homelessness Research Group Conclusions and recommendations This research has demonstrated the particular difficulties faced by people with TBI who are homeless, and the dearth of appropriate support available for them. The services that the men in the study encountered did not always recognise their TBI, meaning support was often targeted at surface issues (for example, substance abuse), and opportunities to address the underlying TBI were missed. Support was not always available or easy to access. We therefore make the following recommendations.   Brain injury screening, and appropriate training for staff, should be available in frontline services in contact with homeless people (for example hostels, A&E). This is currently being done at Ben's Centre for Vulnerable People in Sheffield, and at a variety of places in Leeds, using the Brain Injury Screening Index (BISI), developed by The Disabilities Trust Foundation.   Specialist brain injury services need to be present and accessible in settings where homeless people go, rather than identifying these settings as simply access points into the traditional community rehabilitation services. It is likely that approaches will focus on case management rather than episodic inputs, supporting the development of positive self-narratives, coping, participation and inclusion rather than impairment.    It is crucial to work with existing staff when providing innovative specialist services in settings where homeless people go. This may involve training about brain injury, use of screening tools, and unblocking the institutional obstacles to communication and effective management of people who attend a range of services unpredictably and possibly infrequently. Services should work with service users and carers to develop and deliver user-led training.   In order for specialist services to be useful when they encounter homeless brain injured people, service provision will need to be innovative (for example having multiple access/rapid response points via a network of homeless, alcohol, drug, housing and tenancy support services). Services need to consider models, skill mix and desired outcomes that rethink linear pathways of provision that are typically provided in community brain injury rehabilitation teams.    Preventative support should be prioritised. For example, social workers should ascertain the needs of people with TBI by using the Brain Injury Needs Index12 (BINI) during assessments, and specialist support should be available for people 'at risk' with TBI so as not to lose their housing tenancy.   Support should be available for those who are already homeless, including the development of robust pathways back into brain injury support and rehabilitation when needed.  Experiences of homelessness and brain injury   6 | P a g e   Head Injury and Homelessness Research Group The current study was limited by the small number of participants, and that only adult male participants were interviewed. We therefore call for more research into homelessness and TBI in male, female, adult and youth populations. The majority of people who sustain TBI will never become homeless, yet research has shown that still too many people do, and we must understand the pathways to homelessness if we are to prevent such numbers in the future.   Head Injury and Homelessness Research Group This research was co-produced by the Head Injury and Homelessness Research Group, and was led by Steph Grant, a brain injury survivor with experience of homelessness. The members of the group involved in this research are:  Steph Grant, principal investigator  Alistair Atherton, Consultant Clinical Psychologist (Neuropsychological Rehabilitation), Sheffield Health and Social Care NHS Foundation Trust  Jenni Brooks, Senior Lecturer in Sociology, Sheffield Hallam University  Matthew Colbeck, Honorary Research Fellow, University of Sheffield  Deborah Fortescue, Consultant, The Disabilities Trust  Dave Vanderhoven, Research Supervisor  Acknowledgements We would like to thank the five participants for their willingness to share their stories with us, and Ben's Centre for their help with recruitment and letting us use their facilities for interviews. The University of Sheffield provided a small grant from their co-production impact fund, and also granted ethical approval for the study. The Brain Injury Research and Rehabilitation Partnership, the Housing Equalities Group and Partners for Inclusion have consistently provided Steph with support and encouraged him to discuss the research with them.    References 1. Topolovec-Vranic, J, Ennis, N, Colantonio, A, Cusimano, MD, Hwang, SW, Kontos, P, Ouchterlony, D and Stergiopoulos, V (2012) 'Traumatic brain injury among people who are homeless: a systematic review.' BMC Public Health 12:1059.  2. Oddy, M, Moir, JF, Fortescue, D and Chadwick, S (2012) 'The prevalence of traumatic brain injury in the homeless community in a UK city' Brain Injury 26(9):1058-1064.  3. McMillan, TM, Laurie, M, Oddy, M, Menzies, M, Stewart, E and Wainman-Lefley, J (2014) 'Head injury and mortality in the homeless' Journal of Neurotrauma 32(2):116-119.  4. Hwang, SW, Colantonio, A, Chiu, S, Tolmiczenko, G, Kiss, A, Cowan, L, Redelmeier, DA, and Levinson, W (2008) 'The effect of traumatic brain injury on the health of homeless people' Canadian Medical Association Journal 179(8). 5. Homeless Link (2014) The Unhealthy State of Homelessness: Health Audit Results 2014. Homeless Link. Available online at: http://www.homeless.org.uk/sites/default/files/site-attachments/The%20unhealthy%20state%20of%20homelessness%20FINAL.pdf 6. Fazel, S., Wolf, A., Pillas, D., Lichtenstein, P. and Långström, N., 2014. 'Suicide, fatal injuries, and other causes of premature mortality in patients with traumatic brain injury: a 41-year Swedish population study'. JAMA psychiatry, 71(3), pp.326-333. 7. McMillan et al (2014) - see endnote 3 8. Hwang et al (2008) - see endnote 4 9. Oddy et al (2012) - see endnote 2 10. BeŶ͛s CeŶtre, a plaĐe of staďility for Sheffield street driŶkers https://benscentre.wordpress.com/ 11. http://www.thedtgroup.org/foundation/about-the-foundation/brain-injury-screening-index/ 12. http://www.thedtgroup.org/brain-injury/information-for-professionals/the-brain-injury-needs-indicator-bini/ 

Experiences of Homelessness and Brain Injury

Abstract

Similar works

Full text

Available Versions

Sheffield Hallam University Research Archive