Few authors report comprehensive psychometric data for their acquired brain injury (ABI) outcome indices (e.g., items analyses, test-retest reliability, survivor-proxy agreement, internal consistency, convergent validity). Even fewer authors submit their indices to modern psychometric analyses, like Rasch analysis. The purpose of this dissertation was to evaluate the traditional and modern psychometric properties of a new index of brain injury outcome: the Functional Outcome Profile (FOP). One hundred and thirteen mixed (estimated mild, moderate, and severe injury) ABI survivors and 22 significant others participated in the study. Items analyses (n = 113) revealed that all items were endorsed by at least one ABI survivor, suggesting that the FOP assessed areas relevant to ABI survivors. However most items, composite scores, and the total score had distributions that were negatively skewed. One-week test-retest reliability correlations for the total score, composites, and items (n = 25) were generally in the moderate to strong range (r > 0.7), while survivor-proxy agreement correlations for the items (n = 22) were generally in the moderate range (r = 0.5 to 0.7). The internal consistency scores (n = 113) for 5 of the 8 composite scales and for the full FOP were good (Cronbach α > 0.7). Concurrent-convergent validity analyses revealed that the FOP correlated moderately well with the Mayo-Portland Adaptability Index (MPAI-4) (r = -0.75), but that it did not correlate with injury-related information (e.g., age at injury, time since injury, estimated severity). Rasch calibration of the FOP resulted in a 62-item index that fit the Rasch model well and that demonstrated good reliability and separation. Overall, the results suggest that the FOP has good traditional and modern psychometric properties when used with community-based outpatient ABI survivors. Future studies with the FOP should focus on improving the FOP’s clinical utility and further verifying its convergent and divergent validity.

Wayfinding is the process of determining and following a route. Survivors of acquired brain injury (ABI) may evince impaired wayfinding skills. Mobile technology offers a promising avenue for wayfinding support, but software is seldom designed for users with cognitive impairments. This research was intended to inform the design of mobile wayfinding software for survivors of ABI. Two qualitative studies were conducted to investigate wayfinding by survivors of ABI, and solicit views on a prospective mobile wayfinding aide. Data were used to generate a substantive theory of wayfinding in ABI. Participants were generally enthused by the prospect of a mobile wayfinding aide. They felt that it would be useful and bolster confidence, leading to improved community access. In conjunction with the theory and its implications, their remarks on usage and design indicate that mobile wayfinding software should: provide a simple interface; be context aware; afford an interactive user experience; integrate with calendar software; deliver [audio] notifications; and emphasize landmarks while affording map access. / Graduate

Few authors report comprehensive psychometric data for their acquired brain injury (ABI) outcome indices (e.g., items analyses, test-retest reliability, survivor-proxy agreement, internal consistency, convergent validity). Even fewer authors submit their indices to modern psychometric analyses, like Rasch analysis. The purpose of this dissertation was to evaluate the traditional and modern psychometric properties of a new index of brain injury outcome: the Functional Outcome Profile (FOP). One hundred and thirteen mixed (estimated mild, moderate, and severe injury) ABI survivors and 22 significant others participated in the study. Items analyses (n = 113) revealed that all items were endorsed by at least one ABI survivor, suggesting that the FOP assessed areas relevant to ABI survivors. However most items, composite scores, and the total score had distributions that were negatively skewed. One-week test-retest reliability correlations for the total score, composites, and items (n = 25) were generally in the moderate to strong range (r > 0.7), while survivor-proxy agreement correlations for the items (n = 22) were generally in the moderate range (r = 0.5 to 0.7). The internal consistency scores (n = 113) for 5 of the 8 composite scales and for the full FOP were good (Cronbach α > 0.7). Concurrent-convergent validity analyses revealed that the FOP correlated moderately well with the Mayo-Portland Adaptability Index (MPAI-4) (r = -0.75), but that it did not correlate with injury-related information (e.g., age at injury, time since injury, estimated severity). Rasch calibration of the FOP resulted in a 62-item index that fit the Rasch model well and that demonstrated good reliability and separation. Overall, the results suggest that the FOP has good traditional and modern psychometric properties when used with community-based outpatient ABI survivors. Future studies with the FOP should focus on improving the FOP’s clinical utility and further verifying its convergent and divergent validity.

Acquired Brain Injury (ABI) can cause balance and mobility deficits with activity and participation limitations. Repetitive Functional Task Practice (RFTP), currently best practice to promote recovery, is often not delivered at an adequate volume due to limited resources. This case series looked at the feasibility of treating community-dwelling people with ABI, in a group format, thus allowing economical, intense rehabilitation. Four participants attended for four weeks, three days/week, 4.25 hours/day. One-to-one and semi-supervised therapy was delivered with one therapist and one assistant. 89.51 minutes of RFTP and 134.82 minutes of total physical therapeutic activity was delivered per day. Participant satisfaction was good. All participants improved on some clinical measures. Three participants improved single and dual-task balance measures. This project established feasibility, allowed the formation of guiding principles for and supported the value of future research and development of this ABI Boot Camp model. / February 2016

An Acquired Brain Injury (ABI) can have lasting effects on the self-identity of the injured individual, but also on the self-identity of other family members. Using Contextual Family Stress Theory as a guiding theoretical framework, this qualitative study investigated how mothers experience changes and alterations in their self-identity and family identity, as well as the reconstruction of self-identity and family identity, after a child acquires an ABI. These experiences are important to capture so that clinicians and professionals may better understand the phenomenon of post-ABI self- and family identity and to help inform rehabilitation and professional services. Currently, research has been narrowly focused upon functional gains for individuals and families in rehabilitation while excluding changes in self-identity and family identity. Data were collected via semi-structured interviews and self-report measures of individual mothers' needs and perceptions of the injured child. A constructivist grounded theory analysis was used to analyze the data. Findings reveal the reconstruction processes of mothers' self-identity and family identity after a child receives an ABI, such as internal and external self-identity and intentionality in reconfiguring family identity. Furthermore, results suggest that positive adaptation in self-identity and family identity promote resilience to the changes from the child's ABI. Future research directions, theoretical, and clinical implications are discussed. / Doctor of Philosophy / An Acquired Brain Injury (ABI) can happen in many ways, such as a hard hit to the head or the brain not getting enough oxygen. Children and adolescents are among the age groups that have the highest rates of ABIs. The effects from an ABI are long lasting and impact the injured person in many ways, including their identity or sense of self. When a child receives an ABI, the parents' self-identity and the overall family identity is also affected. The goal of this study was to provide a better understanding of changes in self-identity and family identity for mothers who have a child or adolescent with an ABI. For this study, I recruited 14 mothers of a child with an ABI, and the mothers engaged in interviews and completed several short surveys. The mothers shared important information about changes in self-identity and family identity and made suggestions about how medical and rehabilitation services can better support families affected by ABIs. Findings revealed that families who are intentional about discussing changes to the family, such as role shifts or changes in routine, and expressing emotions adapt more effectively to the consequences from an ABI. Furthermore, the results suggest recommendations for rehabilitation professionals in supporting mothers and families. These include, educating the family about ABIs and involving mothers and families as part of the treatment process. Future directions for further research studies are identified as well as a discussion on best practices for clinicians.

Background & Purpose: Sustaining an acquired brain injury (ABI) can often lead to admission to an inpatient rehabilitation program. The purpose of inpatient rehabilitation is to provide individualized, patient-centered therapy in order to facilitate community re-integration. Considering the patient perspective is beneficial for informing patient-centered care because clinicians and program administrators may develop greater awareness and understanding of patient needs and preferences. There is a lack of qualitative research investigating patient experiences and perspectives of ABI inpatient rehabilitation, and the majority of existing research was conducted in non-Canadian contexts. The present study was thus designed to describe and interpret patient experiences of an ABI inpatient rehabilitation program in urban Ontario. The purpose was to contribute to a patient lens that inpatient rehabilitation staff could consider in their work. Methods: An interpretive description approach was adopted for this qualitative study. Twelve participants were purposively sampled from a regional ABI rehabilitation program. They completed semi-structured interviews about their experiences. Interviews were transcribed, coded, and analyzed to identify major themes. Results: Three major themes were identified from the analysis and arranged around three time points. At the time point prior to admission to inpatient rehabilitation, the theme was “Life Rerouted,” where participants described their lives being diverted from what was “normal” after sustaining an ABI. Inpatient rehabilitation was seen as a way to return to their pre-injury life. The second theme described experiences within inpatient rehabilitation and was entitled, “Autonomy within Rehab.” Under this theme, participants emphasized the importance of personal autonomy over their choices and abilities while in rehabilitation, with three related sub-themes: interactions with clinicians, perceptions of institutional policy, and the involvement of family members. Under a minor theme, not directly related to aspects of autonomy, entitled “social comparisons,” participants also made comparisons of their recovery progress to other patients. The third and final theme reflected participants experiences just after discharge and was entitled, “Life (and Recovery) Go On.” Under this theme, participants described an ongoing recovery process leading to sentiments of both frustration and hope for the future. Discussion: An overarching key message was developed from these themes: “re-establishing personal identity is important to the recovery process.” Two theories (biographical disruption and relational autonomy) are used to interpret this message and describe the strategies and perspectives adopted by patients during inpatient rehabilitation as they attempted to cope with the psychosocial impacts of ABI on their lives. Conclusions: The findings of this study provide knowledge and a theoretical lens in which program staff can view and understand patients’ experiences, needs and preferences. These findings may enhance patient-centered care within the context of ABI inpatient rehabilitation. / Thesis / Master of Science (MSc)

Inledning: Vid en förvärvad hjärnskada är delaktighet i rehabiliteringen en central del för patientens återanpassning till vardagen och eventuellt tillbakabildande av förlorade funktioner. Delaktighet i vårdförloppet leder till en ökad teoretisk förståelse och praktisk insikt hos patienten. Syfte: Syftet med denna studie var att beskriva hur vuxna personer med förvärvad hjärnskada upplever/har upplevt delaktighet under sin vårdtid på en rehabiliteringsavdelning. Metod: Detta är en kvalitativ studie med beskrivande design med semistrukturerade intervjuer som datainsamlingsmetod. Tio patienter som vårdats minst fem arbetsdagar på en rehabiliteringsavdelning intervjuades gällande frågor om delaktighet under vårdtiden på rehabiliteringsavdelningen. En kvalitativ innehållsanalys inspirerad av Graneheim och Lundman (2012) användes för att analysera insamlad data på latentnivå. Resultat: Utifrån temat ”delaktighet” uppstod tre kategorier: kompetent personal, informerad patient, samt självständighet. Temat ”icke-delaktighet” resulterade i två kategorier: bristfällig information och kontrollförlust. Det var flera av informanternas berättelser som liknade varandra i fråga om delaktighet på vårdavdelningen. Samtliga informanter beskrev att de upplevt sig vara delaktiga någon gång under vårdtiden på rehabiliteringsavdelningen. Det handlade bland annat om att de upplevt att de fått tillräcklig information från personalen angående sjukdom och vårdförlopp, att det fanns kompetent personal som anpassade sig efter patienternas individuella behov och önskemål samt möjlighet till självständighet under exempelvis träning. Ett flertal informanter beskrev även upplevelser av att inte vara delaktiga under vårdtiden. Bristfällig information från personalens sida samt en känsla av kontrollförlust var de huvudsakliga anledningarna till detta. Slutsats: Denna studie kan bidra till en ökad förståelse hos vårdpersonal angående delaktighet under rehabiliteringstiden för patienter med förvärvad hjärnskada. Då vårdtiderna kan vara långa på rehabiliteringsavdelningen är det särskilt viktigt med en god kontakt och bra kommunikation med patienterna för delaktighet och en patientcentrerad vård.

The overall aim of this thesis was to describe occupational therapy practice for clients with cognitive impairment following acquired brain injury (CIABI) from the perspective of practicing occupational therapists (OTs). To fulfill this aim, qualitative and quantitative approaches were used including interviews (Study I) and questionnaires (Studies II -IV). Based on the qualitative descriptions generated in Study I, a questionnaire was developed and evaluated for content validity and test-rest validity (Study II). The questionnaire was then used in a survey (Study III). The reactive Delphi technique was used to empirically define the aspects that OTs found to be consistent with the concept of therapeutic use of self (Study IV). The results showed that a predominant practice pattern was the use of ADL activities for intervention regardless of whether limitations in occupational performance or cognitive function were assessed, or whether the approach to therapy was remedial or compensatory. General ADL-instruments were used more than instruments focused on impairment level. Therapies covering a wide range of cognitive impairments, and abilities important to organizing and executing occupational performance were commonly targeted. Therapies targeting clients’ activity limitations were prioritized before remediating impairment. Therapeutic use of self was regarded as being important and the results identified clientspecific aims not earlier described in relation to therapeutic use of self. Another prominent practice pattern was the collaborative approach toward clients, relatives, and other staff. Theories used to support practice were primarily general. Occupational therapy practice for clients with CIABI was found to be complex, and the practice patterns were affected by circumstances such as the ‘hidden’ nature of the cognitive impairments, perceived lack of knowledge, and organizational issues. The results of this thesis can be used as a foundation for further research on practice patterns or the specific therapies used. It can facilitate discussions on strengths and weaknesses witcurrent practice, the need for development, and research utilization.

Background: Until recently, qualitative researchers have avoided interviewing participants with brain injuries because of the ethical and practical dilemmas which may arise and because it has been argued that they may not be able to reflect and accurately report upon their experiences. Therefore, little research has been produced which explores the personal experience of living with a brain injury. Recently, however, some researchers have challenged the view that people with brain injuries are unsuitable as interviewees in qualitative research and have, through their own research, highlighted the importance of understanding their views and perspectives in order to provide them with the best care and rehabilitation. Aims: With this in mind, and in line with current calls for more research gaining the brain injured person’s perspective, this study attempted to gain an in depth understanding of what it is like from the brain injured person’s perspective, to live with an acquired brain injury. The study focussed upon the experience of gaining consciousness following a brain injury, the experience of living with permanent memory loss, the experience of gaining awareness of deficits, the experience of losing an identity and adjusting to a new identity, the impact on relationships with friends and family and experiences as an inpatient in a Brain Injury Unit. Sources of strength and coping mechanisms were also explored. Method: Semi-structured interviews were conducted with six individuals who had severe acquired brain injuries and were inpatients in a post-acute neuro-rehabilitation unit. The verbatim transcripts of the semi-structured interviews were then analysed using Interpretative Phenomenological Analysis (IPA). Results: The analysis produced four master themes. These were: ‘Piecing together the past and becoming aware of the present’, ‘The transition from old self to new self’, ‘Sources of strength and survival’ and ‘Experiences in rehabilitation’. A description of these themes is presented with the corresponding subordinate themes. Conclusions: The clinical implications of the research and guidance for future research are discussed. The study produced a valuable insight into the personal experience of living with a severe acquired brain injury that could be used to inform rehabilitation interventions. The results also indicated that people with acquired brain injuries may experience Post Traumatic Growth.

Aims: Acquired Brain Injury (ABI) is often researched from a reductionist perspective, focusing on pathology and dysfunction (Olney & Kim, 2001). More recently there has been a call towards taking a person-centred, global approach; questioning old ‘assumptions’ about what is currently known, and incorporating the views of the patient (Hill, 1999). This qualitative research study aimed to make a further contribution to the evidence-base by investigating the experience of adjusting to life after ABI. Method: Six participants, (two female, four male) aged 26-49, who had experienced a severe ABI an average of 31 months previously, were interviewed using a semistructured schedule. Interpretative Phenomenological Analysis (IPA) was employed to analyse the transcripts. Results: Five master themes emerged from the participants’ accounts: Experiencing a loss of control; Observed changes as a threat to identity; Being displaced by the injury: Feeling unchanged in a changed world; Attempts at managing a threatened identity, and Enable me don’t disable me: The role of support in recovery. Implications: Clinical implications were considered within Bronfenbrenner’s (1979, 2004) Ecological Systems Theoretical Framework. Within the Microsystems (the individual’s immediate systems such as their body, home and work) participants described a struggle to make sense of their perceived loss of control of their body and brain. They described the importance of making sense of these changes. Clinically there is a potential role for professionals to facilitate how people make sense of their experiences, perhaps moving away from reductionist explanations, which appeared to prevent participants from having hope to influence change. From a Macrosystemic level (the individual’s social, cultural and political systems) the participants felt they were less valued and as a result, judged by society and by political systems. Participants’ accounts suggested that they wanted to continue to contribute and be valuable in society. An implication therefore is for professionals involved to take more a political stance in influencing how we currently conceptualise people after brain injury, focusing on enablement rather than disablement.