Support after brain tumor means different things: Family caregivers\u27 experiences of support and relationship changes

Shorter hospital stays and greater emphasis on outpatient care means that family members have the primary responsibility for supporting a person with brain tumor to manage the physical, cognitive, behavioral, and emotional effects of the illness and its treatment. Given the integral role of family caregivers, it is essential to understand their experience of the impact of brain tumor and their own support needs. Accordingly, this qualitative study aimed to investigate family caregivers\u27 experiences of support and relationship changes in the context of brain tumor. In-depth interviews were conducted with 11 family caregivers (8 spouse/partner, 3 parents) of people with malignant or benign tumor. A thematic analysis of interview transcripts identified two major themes, namely, Meanings of Support and Relationship Impacts. The Meanings of Support theme was characterized by intertwined and distinct support needs, varied expectations of support and factors influencing support expectations. The Relationship Impacts theme depicted mixed experiences of strengthened, maintained, and strained relations with the person with brain tumor. Overall, the findings highlight that there is considerable variability in caregivers\u27 experiences and expectations of support and the impact of brain tumor on relationships. The implications of these findings for the provision of caregiver support are discussed

Feasibility and initial efficacy of project-based treatment for people with ABI

Background: Communication impairments are common and pervasive for people a long time following acquired brain injury (ABI). These impairments have a significant impact on a person's quality of life (QOL) post‐injury. Project‐based treatment is a treatment approach that could have an impact on communication skills and QOL for people with ABI a long‐term post‐injury. This treatment is embedded in a context of meaningful activities chosen by people with ABI, whereby, as a group, they work collaboratively to achieve a tangible end product. Aims: To evaluate the feasibility and initial efficacy of project‐based treatment on improving the communication skills and QOL for people with ABI. Methods & Procedures: An exploratory controlled trial with alternate allocation of groups, and follow‐up at 6–8 weeks, was completed. Twenty‐one people with chronic ABI were recruited in groups of two to three from community settings, allocated to either a TREATMENT (n = 11) or WAITLIST group (n = 10). Participants attended a 20‐h group‐based treatment over 6 weeks where they worked towards achieving a project that helped others. To determine feasibility, four criteria were used: demand, implementation, practicality and acceptability. A range of communication and QOL outcomes was used to determine a fifth feasibility criterion, initial efficacy. Some of these criteria were additionally used to evaluate the feasibility of the outcomes. Outcomes & Results: All participants received the treatment as allocated with high attendance and no dropouts. The treatment was feasible to deliver as intended and was highly acceptable to participants. Medium and large effect sizes were found from pre‐ to post‐treatment, and from pre‐treatment to follow‐up for measures of conversation, perceived communicative ability and QOL. Conclusions & Implications: Project‐based treatment is feasible with indications of initial efficacy for both communication skills and QOL. The treatment provides a promising new approach for improving communication skills and QOL in people with chronic acquired brain injuries in the community setting

Facilitating return to work through early specialist health-based interventions (FRESH): protocol for a feasibility randomised controlled trial

Background Over one million people sustain traumatic brain injury each year in the UK and more than 10 % of these are moderate or severe injuries, resulting in cognitive and psychological problems that affect the ability to work. Returning to work is a primary rehabilitation goal but fewer than half of traumatic brain injury survivors achieve this. Work is a recognised health service outcome, yet UK service provision varies widely and there is little robust evidence to inform rehabilitation practice. A single-centre cohort comparison suggested better work outcomes may be achieved through early occupational therapy targeted at job retention. This study aims to determine whether this intervention can be delivered in three new trauma centres and to conduct a feasibility, randomised controlled trial to determine whether its effects and cost effectiveness can be measured to inform a definitive trial. Methods/design Mixed methods study, including feasibility randomised controlled trial, embedded qualitative studies and feasibility economic evaluation will recruit 102 people with traumatic brain injury and their nominated carers from three English UK National Health Service (NHS) trauma centres. Participants will be randomised to receive either usual NHS rehabilitation or usual rehabilitation plus early specialist traumatic brain injury vocational rehabilitation delivered by an occupational therapist. The primary objective is to assess the feasibility of conducting a definitive trial; secondary objectives include measurement of protocol integrity (inclusion/exclusion criteria, intervention adherence, reasons for non-adherence) recruitment rate, the proportion of eligible patients recruited, reasons for non-recruitment, spectrum of TBI severity, proportion of and reasons for loss to follow-up, completeness of data collection, gains in face-to-face Vs postal data collection and the most appropriate methods of measuring primary outcomes (return to work, retention) to determine the sample size for a larger trial. Discussion To our knowledge, this is the first feasibility randomised controlled trial of a vocational rehabilitation health intervention specific to traumatic brain injury. The results will inform the design of a definitive trial

Supportive care of patients diagnosed with high grade glioma and their carers in Australia.

PURPOSE: This study aimed to: determine the supportive care available for Australian patients with High Grade Glioma (HGG) and their carers; identify service gaps; and inform changes needed to implement guidelines and Optimal Care Pathways. METHODS: This cross-sectional online survey recruited multidisciplinary health professionals (HPs) who were members of the Cooperative Trials Group for Neuro-Oncology involved in management of patients diagnosed with HGG in Australian hospitals. Descriptive statistics were calculated. Fisher's exact test was used to explore differences between groups. RESULTS: 42 complete responses were received. A majority of MDT meetings were attended by a: neurosurgeon, radiation oncologist, medical oncologist, radiologist, and care coordinator. Less than 10% reported attendance by a palliative care nurse; physiotherapist; neuropsychologist; or speech therapist. Most could access referral pathways to a cancer care coordinator (76%), neuropsychologist (78%), radiation oncology nurse (77%), or psycho-oncologist (73%), palliative care (93-100%) and mental health professionals (60-85%). However, few routinely referred to an exercise physiologist (10%), rehabilitation physician (22%), dietitian (22%) or speech therapist (28%). Similarly, routine referrals to specialist mental health services were not standard practice. Nearly all HPs (94%) reported HGG patients were advised to present to their GP for pre-existing conditions/comorbidities; however, most HPs took responsibility (≤ 36% referred to GP) for social issues, mental health, symptoms, cancer complications, and treatment side-effects. CONCLUSIONS: While certain services are accessible to HGG patients nationally, improvements are needed. Psychosocial support, specialist allied health, and primary care providers are not yet routinely integrated into the care of HGG patients and their carers despite these services being considered essential in clinical practice guidelines and optimal care pathways

Videogame-based group therapy to improve self-awareness and social skills after traumatic brain injury

[EN] Background: This study determines the feasibility of different approaches to integrative videogame-based group therapy for improving self-awareness, social skills, and behaviors among traumatic brain injury (TBI) victims and retrieves participant feedback. Methods: Forty-two adult TBI survivors were included in a longitudinal study with a pre- and post-assessments. The experimental intervention involved weekly one-hour sessions conducted over six months. Participants were assessed using the Self-Awareness Deficits Interview (SADI), Patient Competency Rating Scale (PCRS), the Social Skills Scale (SSS), the Frontal Systems Behavior Scale (FrSBe), the System Usability Scale (SUS). Pearson's chi-squared test (χ 2 ) was applied to determine the percentage of participants who had changed their clinical classification in these tests. Feedback of the intervention was collected through the Intrinsic Motivation Inventory (IMI). Results: SADI results showed an improvement in participant perceptions of deficits (χ 2 = 5.25, p < 0.05), of their implications (χ 2 = 4.71, p < 0.05), and of long-term planning (χ 2 = 7.86, p < 0.01). PCRS results confirm these findings (χ 2 = 5.79, p < 0.05). SSS results were also positive with respect to social skills outcomes (χ 2 = 17.52, p < 0.01), and FrSBe results showed behavioral improvements (χ 2 = 34.12, p < 0.01). Participants deemed the system accessible (80.43 ± 8.01 out of 100) and regarded the intervention as interesting and useful (5.74 ± 0.69 out of 7). Conclusions: Integrative videogame-based group therapy can improve self-awareness, social skills, and behaviors among individuals with chronic TBI, and the approach is considered effective and motivating.This study was funded in part by Ministerio de Economia y Competitividad of Spain (Project TEREHA, IDI-20110844; and NeuroVR, TIN2013-44741-R), by Ministerio de Educacion y Ciencia of Spain (Projects Consolider-C, SEJ2006-14301/PSIC; and "CIBER of Physiopathology of Obesity and Nutrition, an initiative of ISCIII"), and by the Excellence Research Program PROMETEO (Generalitat Valenciana. Conselleria de Educacion, 2008-157).Llorens Rodríguez, R.; Noé Sebastián, E.; Ferri, J.; Alcañiz Raya, ML. (2015). Videogame-based group therapy to improve self-awareness and social skills after traumatic brain injury. Journal of NeuroEngineering and Rehabilitation. 12(37):1-9. https://doi.org/10.1186/s12984-015-0029-1S191237Sherer M, Bergloff P, Levin E, High Jr WM, Oden KE, Nick TG. Impaired awareness and employment outcome after traumatic brain injury. J Head Trauma Rehabil. 1998;13(5):52–61.Sherer M, Hart T, Nick TG. Measurement of impaired self-awareness after traumatic brain injury: a comparison of the patient competency rating scale and the awareness questionnaire. Brain Inj. 2003;17(1):25–37.Simmond M, Fleming J. Occupational therapy assessment of self-awareness following traumatic brain injury: a literature review. Br J Occup Ther. 2003;66:447–53.Bogod NM, Mateer CA, MacDonald SWS. Self-awareness after traumatic brain injury: a comparison of measures and their relationship to executive functions. J Int Neuropsychol Soc. 2003;9(03):450–8.Stuss DT, Levine B. Adult clinical neuropsychology: lessons from studies of the frontal lobes. Annu Rev Psychol. 2002;53:401–33.Ham TE, Bonnelle V, Hellyer P, Jilka S, Robertson IH, Leech R, et al. The neural basis of impaired self-awareness after traumatic brain injury. Brain. 2014;137(Pt 2):586–97.Prigatano GP, Schacter DL. Awareness of Deficit After Brain Injury: Clinical and Theoretical Issues. New York: Oxford University Press; 1991.Katz N, Fleming J, Keren N, Lightbody S, Hartman-Maeir A. Unawareness and/or denial of disability: implications for occupational therapy intervention. Can J Occup Ther. 2002;69(5):281–92.Fleming JM, Strong J, Ashton R. Self-awareness of deficits in adults with traumatic brain injury: how best to measure? Brain Inj. 1996;10(1):1–15.Goverover Y, Johnston MV, Toglia J, Deluca J. Treatment to improve self-awareness in persons with acquired brain injury. Brain Inj. 2007;21(9):913–23.Bach LJ, David AS. Self-awareness after acquired and traumatic brain injury. Neuropsychol Rehabil. 2006;16(4):397–414.Prigatano GP. Behavioral Limitations TBI patients tend to underestimate: a replication and extension to patients with lateralized cerebral dysfunction. Clin Neuropsychol. 1996;10(2):191–201.Sherer M, Boake C, Levin E, Silver BV, Ringholz G, High WM. Characteristics of impaired awareness after traumatic brain injury. J Int Neuropsychol Soc. 1998;4(04):380–7.Sveen U, Mongs M, Roe C, Sandvik L, Bautz-Holter E. Self-rated competency in activities predicts functioning and participation one year after traumatic brain injury. Clin Rehabil. 2008;22(1):45–55.Crosson B, Barco PP, Velozo CA, Bolesta MM, Cooper PV, Werts D, et al. Awareness and compensation in postacute head injury rehabilitation. J Head Trauma Rehabil. 1989;4(3):46–54.Toglia J, Kirk U. Understanding awareness deficits following brain injury. NeuroRehabilitation. 2000;15(1):57–70.Schrijnemaekers AC, Smeets SM, Ponds RW, van Heugten CM, Rasquin S. Treatment of unawareness of deficits in patients with acquired brain injury: a systematic review. J Head Trauma Rehabil. 2014;29(5):E9–30.Tate R, Kennedy M, Ponsford J, Douglas J, Velikonja D, Bayley M, et al. INCOG recommendations for management of cognition following traumatic brain injury, part III: executive function and self-awareness. J Head Trauma Rehabil. 2014;29(4):338–52.Chittum WR, Johnson K, Chittum JM, Guercio JM, McMorrow MJ. Road to awareness: an individualized training package for increasing knowledge and comprehension of personal deficits in persons with acquired brain injury. Brain Inj. 1996;10(10):763–76.Zhou J, Chittum R, Johnson K, Poppen R, Guercio J, McMorrow MJ. The utilization of a game format to increase knowledge of residuals among people with acquired brain injury. J Head Trauma Rehabil. 1996;11(1):51–61.Ownsworth TL, McFarland K, Mc Young R. Self-awareness and psychosocial functioning following acquired brain injury: an evaluation of a group support programme. Neuropsychol Rehabil. 2000;10(5):465–84.Lundqvist A, Linnros H, Orlenius H, Samuelsson K. Improved self-awareness and coping strategies for patients with acquired brain injury–a group therapy programme. Brain Inj. 2010;24(6):823–32.Schmidt J, Lannin N, Fleming J, Ownsworth T. Feedback interventions for impaired self-awareness following brain injury: a systematic review. J Rehabil Med. 2011;43(8):673–80.Schmidt J, Fleming J, Ownsworth T, Lannin NA. Video feedback on functional task performance improves self-awareness after traumatic brain injury: a randomized controlled trial. Neurorehabil Neural Repair. 2013;27(4):316–24.McGraw-Hunter M, Faw GD, Davis PK. The use of video self-modelling and feedback to teach cooking skills to individuals with traumatic brain injury: a pilot study. Brain Inj. 2006;20(10):1061–8.Ownsworth T, Quinn H, Fleming J, Kendall M, Shum D. Error self-regulation following traumatic brain injury: a single case study evaluation of metacognitive skills training and behavioural practice interventions. Neuropsychol Rehabil. 2010;20(1):59–80.Lucas SE, Fleming JM. Interventions for improving self-awareness following acquired brain injury. Aust Occup Ther J. 2005;52(2):160–70.Malec JF, Brown AW, Leibson CL, Flaada JT, Mandrekar JN, Diehl NN, et al. The mayo classification system for traumatic brain injury severity. J Neurotrauma. 2007;24(9):1417–24.Folstein MF, Folstein SE, McHugh PR. “Mini-mental state”. A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res. 1975;12(3):189–98.Nakase-Thompson R, Manning E, Sherer M, Yablon SA, Gontkovsky SL, Vickery C. Brief assessment of severe language impairments: initial validation of the Mississippi aphasia screening test. Brain Inj. 2005;19(9):685–91.Prigatano GP, Fordyce DJ. Neuropsychological rehabilitation after brain injury. Baltimore: The Johns Hopkins University Press; 1986.Gismero E. EHS, Escala de habilidades sociales. TEA: Madrid; 2000.Reid-Arndt SA, Nehl C, Hinkebein J. The Frontal Systems Behaviour Scale (FrSBe) as a predictor of community integration following a traumatic brain injury. Brain Inj. 2007;21(13–14):1361–9.Brooke J. SUS: A quick and dirty usability scale. In Usability evaluation in industry. PW Jordan, et al. Editors. Taylor and Francis; 1996Plant RW, Ryan RM. Intrinsic motivation and the effects of self-consciousness, self-awareness, and ego-involvement: An investigation of internally controlling styles. J Pers. 1985;53(3):435–49.Cheng SK, Man DW. Management of impaired self-awareness in persons with traumatic brain injury. Brain Inj. 2006;20(6):621–8.Ownsworth T, Fleming J, Shum D, Kuipers P, Strong J. Comparison of individual, group and combined intervention formats in a randomized controlled trial for facilitating goal attainment and improving psychosocial function following acquired brain injury. J Rehabil Med. 2008;40(2):81–8.Ownsworth T, Fleming J, Desbois J, Strong J, Kuipers P. A metacognitive contextual intervention to enhance error awareness and functional outcome following traumatic brain injury: a single-case experimental design. J Int Neuropsychol Soc. 2006;12(1):54–63.Fleming JM, Lucas SE, Lightbody S. Using occupation to facilitate self-awareness in people who have acquired brain injury: a pilot study. Can J Occup Ther. 2006;73(1):44–55.McDonald S, Tate R, Togher L, Bornhofen C, Long E, Gertler P, et al. Social skills treatment for people with severe, chronic acquired brain injuries: a multicenter trial. Arch Phys Med Rehabil. 2008;89(9):1648–59.Schefft BK, Malec JF, Lehr BK, Kanfer FH. The role of self-regulation therapy with the brain-injured client. In: Maurish ME, Moses JA, editors. Clinical neuropsychology: theoretical foundations for practitioners. Mahwah, NJ: Erlbaum; 1997. p. 237–82.Pollens RD, McBratnie BP, Burton PL. Beyond cognition: executive functions in closed head injury. Cogn Rehabil. 1988;6(5):26–32.Carbery H, Burd B. Social aspects of cognitive retraining in an outpatient group setting for head trauma patients. Cogn Rehabil. 1983;1:5–7.Bennett TL, Raymond MJ. Emotional consequences and psychotherapy for individuals with mild brain injury. Appl Neuropsychol. 1997;4(1):55–61.Delmonico RL, Hanley-Peterson P, Englander J. Group psychotherapy for persons with traumatic brain injury: management of frustration and substance abuse. J Head Trauma Rehabil. 1998;13(6):10–22.Alexy WD, Foster M, Baker A. Audio-visual feedback: an exercise in self-awareness for the head injured patient. Cogn Rehabil. 1983;1(6):8–10.Ranseen JD, Bohaska LA, Schmitt FA. An investigation of anosognosia following traumatic head injury. Int J Clin Neuropsychol. 1990;12(1):29–36.Sasse N, Gibbons H, Wilson L, Martinez-Olivera R, Schmidt H, Hasselhorn M, et al. Self-awareness and health-related quality of life after traumatic brain injury. J Head Trauma Rehabil. 2013;28(6):464–72.Malec JF, Testa JA, Rush BK, Brown AW, Moessner AM. Self-assessment of impairment, impaired self-awareness, and depression after traumatic brain injury. J Head Trauma Rehabil. 2007;22(3):156–66.Fleming JM, Ownsworth T. A review of awareness interventions in brain injury rehabilitation. Neuropsychol Rehabil. 2006;16(4):474–500