Increasing awareness following acquired brain injury: A quantative analysis of an outpatient education group Lead Investigator: Orla McEvoy, Occupational Therapist, NRH Co-Facilitator: Joan Monahan, Speech & Language Therapist, NRH Principal Investigator: Dr. Delargy, Consultant in Rehabilitation Medicine, NRH Academic Supervisor: Dr. Callanan, Group Clinical Audit Coordinator, SVUH Meet & Teach Group The Meet & Teach Group is an interdisciplinary venture facilitated by SLT & OT. The group aims to improve awareness of residual problems following acquired brain injury and the understanding of the need to use of coping strategies. A self-management approach is used with active problem solving and goal setting forming a core part of the group. Participants meet for ten two-hour sessions on a weekly basis. Group structure and content changed over the years but the outcomes have never been reviewed in a formal and comprehensive manner. 1
Awareness Awareness deficits among those with a traumatic brain injury are reported to range from 45-97% (Bach & David, 2006) Impaired awareness of altered skills is a common problem following acquired brain injury and limits long-term outcomes (Lucas & Fleming, 2005) A systematic review by Cicerone et al (2005) found insufficient evidence to make specific recommendations about interventions to improve awareness. Hierarchy of Awareness Level 5: Anticipatory Awareness Level 4: Emergent awareness Level 3: Intellectual Awareness (Highest) Level 2: Intellectual Awareness (Intermediate) Level 1: Intellectual Awareness (Basic) 2
After the accident, I went back to the university It wasn t until I failed that statistics test that I realized the extent of my problem. You see, I didn t know that I didn t know. Over the summer, I was able to successfully complete a statistics class (got an A). Talk about feeling supercharged. I mistakenly thought I was completely healed. I was ready to make up for lost time finish the PhD - repay the faculty s confidence in me and get on with my life. Unfortunately, I overestimated my abilities. The head injury literature writes about a lack of insight and the effects of cumulative fatigue. But I tell you, reading about these symptoms and experiencing them are two quite different things (Schell-Word, 1999, p.352) Research Objectives The study had two major purposes: (1) To establish the effectiveness of an interdisciplinary group designed to increase awareness following acquired brain injury (2) To determine if the intervention is an efficient use of resources Ethical approval for the research was given by the ethics committee at the NRH 3
Methods Data for the study was obtained by reviewing the intervention s outcomes over a two-year period. 57 participants completed the programme during this timeframe. A quantative, longitudinal design was used to examine effectiveness by analysing; Therapists rating of patients level of awareness on the Hierarchy of Awareness pre- and post-group Patients responses on the pre- and post-group self-report questionnaires A descriptive study of the structure, processes and outputs was undertaken to examine the intervention s efficiency. Inclusion Criteria The criteria for admission to the group were; Comprehension and verbal skills for conversational level interactions Social and behavioural skills to contribute in a group situation Concentration skills to cope with a two hour interaction Learning ability to apply the knowledge discussed Intellectual level of insight Literacy skills Los Ranchos Amigos Scale VIII to X The group was not considered suitable in certain situations; If coping response or mood precludes collaboration with clinicians If the patient hasn t developed sufficient insight 4
The Participants Diagnosis N % Traumatic brain injury 21 37 Non-traumatic brain injury 7 12 Stroke 23 40 Infection 5 9 Other 1 2 Mean Range Standard Deviation Age 46.6 years 26 65 years Months since injury 21.3 months 3 261 months 35.89 Months since injury (excluding outlier) 17 months 3 81 months 18.51 Group Structure & Content Topics covered; brain structures and brain injury, rehabilitation, cognitive, behavioural and emotional changes, adjustment, stress and management Session Structure - Review participation in chosen activity - New topic with handouts - Class activities and discussion - New Activity for the week given 5
Results Results showed that the group intervention effected a significant improvement in the patients level of awareness and their use of coping strategies. Results also demonstrated that the group-based intervention was an efficient use of resources In addition, psychosocial and emotional benefits beyond the stated objectives of the intervention were evident. Efficiency Structure Process Outputs Outcomes Inputs; staffing, room requirements etc. How the service is organised Number of patient contacts, number of discharges etc. Effectiveness Donabedian's quality-of-care framework 6
Effectiveness Therapists' rating of the patients on the "Hierarchy of Awareness" pre- and post-group How much information about your injury have you received or heard? pre- and post-group How well do you understand your injury? pre- and post-group 7
Strategies Strategies 8
Best part of the group Meeting like minded people and learning from each other Sharing problems with others with similar problems Meeting others who have similar problems and knowing the problems I have are like theirs Meeting people to share the realities of everyday life Hearing the journeys and learning of everyone else Meeting people in a similar position to myself Best part of the group Knowing that other people were having similar problems and were coping with life Meeting others that had the same injuries and seeing how they deal with things or problems they have which may be the same issues you have Listening to everyone that you were not on your own Meeting other people with similar problems and assorted solutions 9
Psychosocial Impact The emotional and psychological sequelae of stroke can be more enduring than the physical difficulties and are not adequately addressed (Jones et al, 2013) The National Survey of Stroke Survivors in Ireland Report (2014) Emotional distress and fatigue were common and were barriers to many activities. Satisfaction with the level of help available for these problems was poor. Interventions which increase self-efficacy and the ability to handle the emotional responses to cognitive failures are more effective than attempting to improve cognitive functioning alone (Mateer & Sira, 2006) For the past several years I have had to accept slower and lower as my fate. Guess I also had the fantasy that someday I would be able to function at former levels. Like it or not, I am forever changed. Seven years later the sense of personal loss remains. (Schell-Word, 1999, p.355) 10
Discussion Clinicians efforts to educate and persuade patients to accept their limitations may not be helpful Rather, awareness and adaptation are better facilitated through the experience of setting goals, testing limits and evaluating performance in valued functional activities (Wise et al, 2005) Carlson et al. s (2006) systematic review aimed to identify best practice to enhance participation following brain injury. They classified community integration programs on the basis of using a learning to participate approach or participating to learn approach. They supported the participating to learn approach as the more effective rehabilitation model 11
Kubler-Ross Change Curve Shock Integration Denial Decision Making Frustration Experimentation Depression Activity Goal Setting 12
My life was a search for new strategies to offset the disabilities that marked my altered identity. Consciously, I gave myself permission to fail, permission to put my life and expectations on hold. I developed a network of support. When my thoughts would become disorganized, I would go to my garden. My youngest daughter insists that it was the plants that healed me. (Schell-Word, 1999, p.357) Self Management HSE recommends the use of a self-management approach in the Chronic Illness Framework (2008) Self-management programmes post-stroke have been relatively rare but benefits have been shown (Jones et al, 2013) Educating persons with brain injury about the nature of their injury, the resultant impairments and the functional impact is an important component of intervention (Lucas & Fleming, 2005) Self-management is not solely an educational intervention. Active problem solving, shared decision making and goal setting are the key elements of successful self-management. (Jones et al, 2013) 13
Self Management Conclusion On the basis of this research, it can be concluded that a structured group therapy programme is an effective and efficient method of helping patients with acquired brain injury improve awareness The intervention was valued by patients and provided a supportive environment where they felt understood and secure Findings are in keeping with previous research Occupational therapists can make a unique contribution to the treatment of impaired awareness by focusing on performance in meaningful daily tasks. 14
7 years after the fall, I became Dr. Schell-Word, a college professor. My academic record indicates that I have indeed re-entered the world. The more challenges I face, the more I am able to meet. You are now reading my first accepted academic publication. (Schell-Word, 1999, p.357) Thank you for listening Feedback from participants 15