Joanna K. Fadyl

Experience of recovery and outcome following traumatic brain injury: a metasynthesis of qualitative research

Purpose. To explore the use of qualitative metasynthesis to inform debate on the selection of outcome measures for evaluation of services provided to adults with traumatic brain injury (TBI). Method. Fifteen databases were searched for qualitative research published between 1965 and June 2009, investigating the lived experience of recovery following TBI acquired during adulthood. Two reviewers independently screened all abstracts. Included studies were evaluated using methodological criteria to provide a context for interpretation of substantive findings. Data were extracted and synthesised by three reviewers, using QSR NVivo to assist with data management. Results. From 23 studies, eight inter-related themes were identified to describe the enduring experience of TBI: 1) mind/body disconnect; 2) disconnect with pre-injury identity; 3) social disconnect; 4) emotional sequelae; 5) internal and external resources; 6) reconstruction of self-identity; 7) reconstruction of a place in the world; 8) reconstruction of personhood. Conclusion. Currently, there are outcome measures for some but not all of the issues identified in qualitative research on surviving TBI. In particular, new outcome measures may be required to evaluate experiences of loss of personal identity, satisfaction with reconstructed identity and sense of connection with ones body and ones life following TBI.

Approaches to Vocational Rehabilitation After Traumatic Brain Injury: A Review of the Evidence

BackgroundReturn to work after traumatic brain injury (TBI) is an important outcome but frequently problematic to achieve. Vocational rehabilitation is commonly recommended as a means of facilitating return to work after TBI. However, there are several different approaches to vocational rehabilitation after TBI and little guidance regarding how to identify the best option for a particular context. ObjectivesTo (1) identify approaches most commonly underpinning vocational interventions in TBI and (2) evaluate the evidence for effectiveness, strengths and weaknesses, and application of each approach for the TBI population. MethodsPrinciples of systematic review were used for searching and critiquing articles. Findings are expressed as descriptive synthesis owing to heterogeneity of designs and outcome measures. ResultsThree broad categories of vocational rehabilitation for people with TBI were identified on the basis of models that underpin them—program-based vocational rehabilitation, supported employment, and case coordinated. The characteristics, similarities, differences, and applications of each approach are described, as are their strengths and limitations. ConclusionsThere is little clear evidence to suggest what should be considered the “best practice” approach to vocational rehabilitation,

Return to Work After Injury: A Review of Evidence Regarding Expectations and Injury Perceptions, and their Influence on Outcome

Introduction Work disability after injury is a complex problem, and there remains a lack of clarity about what factors are most influential on whether or not someone will experience difficulty returning to work. Increasingly, expectations and injury perceptions are being explored as potential factors in work disability, because of their role in influencing behaviours. Methods This paper reviewed the literature regarding how expectations (regarding injury recovery and return to work) and injury perceptions relate to return to work outcome. A wide range of electronic journal databases were searched, and identified articles were critically appraised to assess quality and relevance. Results were then synthesised and discussed in relation to the evidence available regarding the role of expectations and injury perceptions in return to work, and implications for practice and further research. Results Findings showed that evidence regarding to how both expectations and injury perceptions contribute to return to work outcome is limited. Some suggestions for application to practice are made. Methodological issues and key points to consider for future research are discussed. Conclusions While in general little is known about how much expectations and injury perceptions influence return to work outcome, it is clear that the issue requires further investigation. Key limits to current knowledge result from inadequate methods of measuring expectation/s, lack of clear definitions of ‘return to work outcome’ and differences in timeframes and populations. Never-the-less, there is promising evidence to suggest that, in particular, pain catastrophizing research is warranted due to its correlation with outcome and amenability to change.

Factors contributing to work-ability for injured workers: literature review and comparison with available measures

Purpose. Despite a range of factors being proposed in research literature to be key to ‘work-ability’, agreed definitions and boundaries of this concept are lacking. This review sought to identify and clarify key factors thought to contribute to individual work-ability, then compare these against existing measures of work-ability for people with injury. Method. A literature search was undertaken based on principles of systematic review. MEDLINE, AMED, Scopus and Web of Science databases were searched. All potentially relevant articles were obtained and, if they met inclusion criteria, evaluated for quality. The search was expanded and repeated to identify currently available measures of work-ability for people with injury. These measures were then compared against components from the first search. Results. Thirty-four articles were obtained from the first search, and 23 provided information about factors that contribute to work-ability. Six broad categories were identified: physical, psychological, cognitive, social/behavioural, workplace factors, and factors outside the workplace. The follow-up search identified 10 measures. No one measure captured all six identified categories. Conclusions. Components contributing to work-ability go beyond the ability to perform particular work tasks. Measures intended to be used to inform vocational rehabilitation arguably need to consider all these factors to maximise likelihood of a sustainable return to work.

Understanding Decisions About Work After Spinal Cord Injury

Introduction Research has consistently shown that many people with spinal cord injury (SCI) do not return to work (RTW), despite evidence that being employed is associated with better quality of life, participation and physical and psychological well-being. While some factors associated with RTW outcome have been identified, very little is known about what influences people’s own decisions about their employment following SCI. This qualitative study sought to identify factors that influenced decisions about whether and when to RTW for people with SCI. Methods Participants were recruited through rehabilitation and support services in Aotearoa/New Zealand, and sampling sought to capture variation in the population, particularly with regard to pre-injury occupation, physical impairment, age, ethnicity and education. In-depth interviews were conducted which were audio-taped and transcribed. Interviews were analysed using rigorous methods drawn from grounded theory. Results Thirteen participants took part in the research. Findings identified four main themes that synthesised experiences about what influenced decisions about employment after SCI: (1) ability to work (given work demands and current resources); (2) presence of responsibilities or pressures that compete with work; (3) access to a suitable job; and (4) whether work was of enough benefit to the individual to be worth pursuing. Conclusions Findings illustrate the complexity of decisions about working after SCI, and provide a framework that health and vocational professionals may find useful to inform discussions with their clients. Findings also provide a basis for further research into interventions to support people to make informed decisions about employment after SCI.

Perspectives on quality of care for people who experience disability

Background and objective Quality of care is considered to be of central importance in healthcare, disability services and rehabilitation. People experiencing disability often access a range of health and social care services; for some, these services are integral parts of daily life. Little research has explored perspectives of disabled people regarding what constitutes good quality care. This qualitative study aimed to explore and synthesise these perspectives to build a better picture of what constitutes good-quality care for disabled people in New Zealand. Design and participants Qualitative focus groups and interviews were conducted with a range of participants including people with physical, sensory and/or intellectual impairment; informal and formal carers; and health and social care professionals. Data analysis used constant comparison methods as described in Strauss and Corbin (1998) to determine the factors of most importance and how they contributed to quality of care in health and social care services from the perspectives of people who use these services. Findings Thirty-one participants took part, representing a range of ages and disabilities. Three main themes identified from data analysis were: (1) technical competence of care service and professionals; (2) a ‘human’ approach to service provision; and (3) context-appropriate response to needs. Conclusions Findings offer a service-user perspective on what makes a difference to quality of care for people experiencing disability. They suggest that to provide context-appropriate care which addresses individual needs, the right mix of technical competence and a ‘human’ approach to care is needed. The mix required for the ‘right’ balance may depend on the type of service.

Establishing a person-centred framework of self-identity after traumatic brain injury: a grounded theory study to inform measure development

Objective To develop a theoretically sound, client-derived framework to underpin development of a measure reflecting the impact of traumatic brain injury (TBI) on a persons self-identity. Design Grounded theory, based on transcription of audio recordings from focus group meetings with people who have experienced TBI, analysed with constant comparative methods. Setting 8 different urban and rural communities in New Zealand. Participants 49 people (34 men, 15 women), 6 months to 36 years after mild-to-severe TBI. Results The central concept emerging from the data was that of desiring to be or having lost a sense of being an integrated and valued person. The three main subthemes were: (1) having a coherent, satisfying and complete sense of oneself, (2) respect, validation and acceptance by others and (3) having a valued place in the world. Conclusions This study reinforces the notion that change in self-identity is an important aspect of life after TBI, and provides information on what this concept means to people with TBI. In order to scientifically evaluate relationships between self-identity and other aspects of health (eg, depression, quality of life), and to test the effect of interventions to address problems with self-identity after TBI, a quantitative tool for evaluation of this construct is required. Themes from this research provide a foundation for the development of a measure of self-identity grounded in the language and experience of people with TBI.

Interrogating discourse: The application of Foucault’s methodological discussion to specific inquiry

Discourse analysis following the work of Michel Foucault has become a valuable methodology in the critical analysis of a broad range of topics relating to health. However, it can be a daunting task, in that there seems to be both a huge number of possible approaches to carrying out this type of project, and an abundance of different, often conflicting, opinions about what counts as ‘Foucauldian’. This article takes the position that methodological design should be informed by ongoing discussion and applied as appropriate to a particular area of inquiry. The discussion given offers an interpretation and application of Foucault’s methodological principles, integrating a reading of Foucault with applications of his work by other authors, showing how this is then applied to interrogate the practice of vocational rehabilitation. It is intended as a contribution to methodological discussion in this area, offering an interpretation of various methodological elements described by Foucault, alongside specific application of these aspects.

Optimising qualitative longitudinal analysis: Insights from a study of traumatic brain injury recovery and adaptation.

Knowledge about aspects that influence recovery and adaptation in the postacute phase of disabling health events is key to understanding how best to provide appropriate rehabilitation and health services. Qualitative longitudinal research makes it possible to look for patterns, key time points and critical moments that could be vital for interventions and supports. However, strategies that support robust data management and analysis for longitudinal qualitative research in health-care are not well documented in the literature. This article reviews three challenges encountered in a large longitudinal qualitative descriptive study about experiences of recovery and adaptation after traumatic brain injury in New Zealand, and the strategies and technologies used to address them. These were (i) tracking coding and analysis decisions during an extended analysis period; (ii) navigating interpretations over time and in response to new data; and (iii) exploiting data volume and complexity. Concept mapping during coding review, a considered combination of information technologies, employing both cross-sectional and narrative analysis, and an expectation that subanalyses would be required for key topics helped us manage the study in a way that facilitated useful and novel insights. These strategies could be applied in other qualitative longitudinal studies in healthcare inquiry to optimise data analysis and stimulate important insights.

Living life after traumatic brain injury: phase 1 of a longitudinal qualitative study

Objective: To explore what helps and hinders recovery and adaptation after disabling traumatic brain injury (TBI) and make recommendations for improving service responsiveness. Design: A longitudinal qualitative descriptive study across all TBI severities. Setting: Community. Participants: Forty people with TBI, and 22 significant others, 6 to 9 months following a TBI. Main Measures: Semistructured interviews, analyzed using qualitative description, focused on (a) key areas of importance or concern and (b) strategies or actions that people found helpful or that hindered recovery. Results: Traumatic brain injury produced a complex set of challenges in keeping up with life, and understanding what having a TBI means for, and to, me. This period encompassed a tangled fit and misfit in life as brain injury did not occur in isolation. People had to actively change some aspects of life and yet allow other changes to happen. Valued supports from others included being looked out for and having someone to help drive the process. Conclusion: Improved services delivery and better outcomes may result if we respond to the person within his or her context; listen, believe, and acknowledge the persons story through our actions; and avoid assumptions about aspects of life that mean most to people and who/what may help best.