William Levack - Academia.edu (original) (raw)

Papers by William Levack

Research paper thumbnail of Tbi Tools Review & Supplementary Report

Research paper thumbnail of How family carers engage with technical health procedures in the home: a grounded theory study: Figure 1

BMJ Open, 2015

To explore the experiences of family carers who manage technical health procedures at home and de... more To explore the experiences of family carers who manage technical health procedures at home and describe their learning process. A qualitative study using grounded theory. New Zealand family carers (21 women, 5 men) who managed technical health procedures such as enteral feeding, peritoneal dialysis, tracheostomy care, a central venous line or urinary catheter. In addition, 15 health professionals involved in teaching carers were interviewed. Semistructured interviews were coded soon after completion and preliminary analysis influenced subsequent interviews. Additional data were compared with existing material and as analysis proceeded, initial codes were grouped into higher order concepts until a core concept was described. Interviewing continued until no new ideas emerged and concepts were well defined. The response of carers to the role of managing technical health procedures in the home is presented in terms of five dispositions: (1) Embracing care, (2) Resisting, (3) Reluctant acceptance, (4) Relinquishing and (5) Being overwhelmed. These dispositions were not static and carers commonly changed between them. Embracing care included cognitive understanding of the purpose and benefits of a procedure; accepting a 'technical' solution; practical management; and an emotional response. Accepting embrace is primarily motivated by perceived benefits for the recipient. It may also be driven by a lack of alternatives. Resisting or reluctant acceptance results from a lack of understanding about the procedure or willingness to manage it. Carers need adequate support to avoid becoming overwhelmed, and there are times when it is appropriate to encourage them to relinquish care for the sake of their own needs. The concept of embracing care encourages health professionals to extend their attention beyond simply the practical aspects of technical procedures to assessing and addressing carers' emotional and behavioural responses to health technology during the training process.

Research paper thumbnail of Simple equipment and complicated situations – what training is needed for effective equipment use after stroke?

Introduction: Occupational therapy for people recovering from stroke often includes provision of ... more Introduction: Occupational therapy for people recovering from stroke often includes provision of equipment (Wolf et al., 2009), yet non-use of equipment is estimated to be up to 50% (Kraskowsky & Finlayson, 2001). Recent research indicates that training clients can increase equipment use after stroke (Chiu & Man, 2008) but it is unclear to what extent such training is routinely provided. This research examines the process of equipment training and provision and how it contributes to the aims of occupational therapy after stroke. Methods: A postal survey with both open and closed questions was initially sent to 616 people admitted to hospital with stroke in 2012. Multivariate regression analysis is intended for examining the relationships between demographic factors and patient experiences of the assessment, training, and delivery processes for equipment. This presentation however focuses on the free text responses to the survey. Ethics approval for this study was provided by New Zea...

Research paper thumbnail of Challenges of continuing with evidence based practice after post graduate study

Background Many clinicians enroll in postgraduate study to develop their skills as evidence based... more Background Many clinicians enroll in postgraduate study to develop their skills as evidence based practitioners. However there is a need to better understand if such study results in long term change in practice. Aim This study explored how and if postgraduate, interprofessional study in rehabilitation influenced students in their clinical setting after they completed their studies. Methods A cohort of 13 participants were selected for qualitative interviews from a group of 77 previous postgraduate who completed a related survey. The interviews were transcribed and thematic analysis was used to develop core themes. University of Otago Human Ethics Committee provided approval for this study. Results (preliminary) While many students had made substantial positive changes to the delivery of rehabilitation at their workplace, these changes were made despite some significant barriers to implementation of this new knowledge. Four core themes emerged in relation to barriers to implementati...

Research paper thumbnail of ‘Swings and roundabouts’: The influence of external factors on the way married couples cope with multiple sclerosis

Coping with MS has different challenges for people who have the condition and their spouses. This... more Coping with MS has different challenges for people who have the condition and their spouses. This study used qualitative methods to explore external barriers and facilitators influencing coping for people with multiple sclerosis and their significant others. Highlighted themes were about the importance of timing of information, the role others with disabilities played in the development of coping strategies, the variety of experiences with health professionals and the changing nature of social circles as the disease progressed. Members of a couple where one has MS may respond to external support in different ways. Health professionals need advanced communication skills to deal with these changing needs as the disease progresses. Symptoms of MS can vary dramatically (1). Having MS or being a spouse of someone with MS decreases health status and social opportunities (2). Psychosocial factors such as coping can influence quality of life more than biological features (3).This paper exam...

Research paper thumbnail of Areas of consensus and controversy about goal setting in rehabilitation: a conference report

Clinical Rehabilitation, 2009

Objective: To consider clinical issues surrounding goal setting in neurological rehabilitation, a... more Objective: To consider clinical issues surrounding goal setting in neurological rehabilitation, and to identify priorities for future research.Participants: Twenty-four rehabilitation professionals were invited to attend because they had taught or published on the topic of goal setting. In addition two patient groups were represented.Evidence: (1) The results of a systematic literature review, (2) presentations given during the two-day conference by

Research paper thumbnail of Self-Reflective Meaning Making in Troubled Times: Change in Self-Identity After Traumatic Brain Injury

Qualitative health research, Jan 11, 2014

Our aim with this article is to clarify the concept of change in self-identity following traumati... more Our aim with this article is to clarify the concept of change in self-identity following traumatic brain injury (TBI). We used concept analysis methodology-predominantly concept clarification. We identified 110 articles using a systematic literature search, and used critical appraisal, content analysis, and analytical questioning to explore attributes and boundaries. A reported change in self-identity is the ultimate expression of a variety of cognitive, psychological, and social sequelae of TBI. We present an integrative model of this process, identifying three potential levels of change: (a) component parts (egocentric self, sociocentric self, and "identity as shared with others"); (b) integral processes (self-awareness and expression via meaningful occupation and narratives); and (c) whole-system disruption. Change in self-identity after TBI is a highly individualistic process. The driver of this process is "self-reflective meaning making," giving a purpose an...

Research paper thumbnail of Confident, Credible but Lonely - Outcomes following Postgraduate Interprofessional Education in Rehabilitation

Background: Interprofessional education aims to enhance health service delivery. This study exami... more Background: Interprofessional education aims to enhance health service delivery. This study examined whether health professionals changed their clinical practice after completion of a postgraduate, interprofessional qualification in rehabilitation. Methods: All graduates of postgraduate qualifications in rehabilitation at University of Otago were invited to complete a questionnaire. Thirteen participants were purposively selected for further in-depth interviews. Questionnaire data were summarised using descriptive statistics. Qualitative responses from questionnaires and interview transcripts were explored using thematic analysis. Findings: The survey response rate was 24% (77/315 students). Postgraduate study was reported to have had a positive impact on professional attitudes and commitment to learning (81%), to enhance interdisciplinary collaboration (79%), and to promote change in service delivery (40%). Themes identified from questionnaire responses were: 1) increased confidenc...

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

Research paper thumbnail of No. 112 Measurement of Problems With Self-Identity Following Traumatic Brain Injury: Development of a Concept Using Grounded Theory

Research paper thumbnail of Life goals and social identity in people with severe acquired brain injury: an interpretative phenomenological analysis

Disability and Rehabilitation, 2014

Research paper thumbnail of A new classification for outcomes in illness and injury

British Journal of Hospital Medicine, 2005

Illness and injury can lead to complex problems for patients and clinicians. A new approach from ... more Illness and injury can lead to complex problems for patients and clinicians. A new approach from the World Health Organization (WHO), the International Classification of Functioning, Disability and Health (ICF), may help manage such patients, and evaluate the success of the interventions used. The authors discuss the application of the ICF model.

Research paper thumbnail of Navigating patient-centered goal setting in inpatient stroke rehabilitation: How clinicians control the process to meet perceived professional responsibilities

Patient Education and Counseling, 2011

Patient-centered goal setting, while central to contemporary rehabilitation, has been associated ... more Patient-centered goal setting, while central to contemporary rehabilitation, has been associated with growing uncertainty regarding its application in clinical practice. We aimed to examine the application of goal setting in inpatient stroke rehabilitation. Data collected from 44 participants (nine patients, seven family members, 28 health professionals), using multiple data sources (interviews, recorded clinical sessions, team meetings, participant-observation, and clinical documentation), were analyzed using constant comparative methods. Certain goals (characterized by short timeframes, conservative estimation of outcomes, and physical function) were privileged over others. Involvement of patients and family in goal setting resulted in interactional dilemmas when their objectives, skills and perceived capacity did not align with privileged goals. When alignment did occur, greater patient involvement still did not appear to influence clinical reasoning. This study raises questions about how 'patient-centered' current goal setting practices are and whether a 'patient-centered' approach is even possible in inpatient stroke rehabilitation when considering predominant funding and health system models. For 'patient-centered' goal setting to be more than rhetorical, clinicians need to examine the values they attribute to certain types of goals, the influence of organizational drivers on goal selection, and how goals are actually used to influence clinical practice.

Research paper thumbnail of Coping with multiple sclerosis as a couple: ‘peaks and troughs’ – an interpretative phenomenological exploration

Disability and Rehabilitation, 2012

Multiple Sclerosis (MS) is a chronic degenerative condition where illness uncertainty is a key di... more Multiple Sclerosis (MS) is a chronic degenerative condition where illness uncertainty is a key difficulty that people with MS and their significant others have to cope with. Clinicians acknowledge that people with MS need to be seen in the context of their families, however there is little knowledge on what to expect about how people cope as a couple, which this study set out to explore. Interpretative Phenomenological Analysis (IPA) exploring, through semi-structured interviews, how seven couples, where one had MS, experienced coping with their situation. Two overarching themes pertaining to coping as a couple emerged from the data: Coping Together: "Peaks and Troughs" and Coping Over the Long Haul, with each overarching theme relating to sub-themes. Two integrative themes emerged also, which were called Faith in Self and Faith in Each Other. These results will assist clinicians better comprehend how those with MS and their spouses cope in an interconnected way and this in turn affects their experience of rehabilitation. Results from this research indicated that clinicians need to be sensitive to the individual coping strategies of both members of a couple where one has MS, and address the changing needs of their relationship.

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

Disability & Rehabilitation, 2010

To explore the use of qualitative metasynthesis to inform debate on the selection of outcome meas... more 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). 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. 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. 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 one's body and one's life following TBI.

Research paper thumbnail of A Good Lives Model of clinical and community rehabilitation

Disability & Rehabilitation, 2007

The aim of this paper was to introduce the Good Lives Model, originally developed for offender re... more The aim of this paper was to introduce the Good Lives Model, originally developed for offender rehabilitation, to the clinical rehabilitation community. We argue that this model has considerable promise, both as a 'thinking tool' and as an integrative framework emphasizing the centrality of the person in clinical and community rehabilitation for complex and chronic health conditions. The essential features of a good rehabilitation theory are first outlined. These are the general principles and assumptions that underpin a theory, the aetiological assumptions and the intervention implications. The Good Lives Model for clinical rehabilitation is then described in terms of these three components of a good rehabilitation theory. The Good Lives Model has considerable promise as a tool for integrating many diverse aspects of current best practice in rehabilitation while maintaining the individual client as the central focus. At the same time it is provisional and further theoretical development and empirical support is required.

Research paper thumbnail of Success in the workplace following traumatic brain injury: are we evaluating what is most important?

Disability & Rehabilitation, 2004

Vocational outcome, and in particular full-time paid work, is considered an important indicator o... more Vocational outcome, and in particular full-time paid work, is considered an important indicator of successful rehabilitation following traumatic brain injury (TBI). However it has not been established that these outcomes adequately or accurately represent the values of the people with TBI. This paper describes a study exploring the experiences of individuals who attempted returning to work following TBI, with emphasis on factors that related to perceptions of 'success' or 'failure'. A phenomenological study, interviewing seven people with moderate to severe TBI was conducted. The interview data were analysed for themes relating to experiences of success or failure in the workplace. Community consultation provided additional perspectives in the interpretation and validation of results. The results of this study support in part the assumption that paid employment is indicative of success following TBI. Equally prevalent were findings that challenged this assumption, including situations where: (1) return to employment contributed to catastrophic personal events, (2) feelings of success were achieved even though paid employment was not, and (3) success in the workplace was associated with factors other than hours worked or pay earned. This research suggests that the use of work placement as a measure of successful rehabilitation might misrepresent the perspective of individuals with TBI. A multifactorial approach to evaluating vocational rehabilitation is recommended, which incorporates the subjective experience of work.

Research paper thumbnail of Purposes and mechanisms of goal planning in rehabilitation: The need for a critical distinction

Disability & Rehabilitation, 2006

To determine a preliminary typology of purposes and mechanisms ascribed to goal planning in rehab... more To determine a preliminary typology of purposes and mechanisms ascribed to goal planning in rehabilitation. To demonstrate the importance of making a critical distinction between these different purposes and mechanisms when reviewing or designing research on goal planning in rehabilitation. A search of Medline, Embase, PsychINFO and CINAHL for articles on goal planning in rehabilitation. Articles were only included if they were about patient populations and made explicit statements regarding the function or purpose of goal planning in rehabilitation. Thematic analysis was used to qualitatively synthesise the purposes and mechanisms of goal planning described in the literature. Four major purposes for undertaking goal planning in rehabilitation are identified: (1) to improve patient outcomes (as determined by standardised outcome measures), (2) to enhance patient autonomy, (3) to evaluate outcomes, and (4) to respond to contractual, legislative or professional requirements. The first of these purposes is associated with four distinct mechanisms with the remaining three purposes appearing to relate to one underlying mechanism. This typology offers one approach for critically engaging with the wide-ranging issues in goal planning. Debate stemming from this work could facilitate systematic reviews of this area as well as guide research and application to practice.

Research paper thumbnail of Impact of stigma, culture and law on healthcare providers after occupational exposure to HIV and hepatitis C

Culture, Health & Sexuality, 2012

Worldwide, approximately three million needlestick or sharps injuries occur annually during healt... more Worldwide, approximately three million needlestick or sharps injuries occur annually during healthcare procedures, with an estimated 18-35 healthcare professionals (HCPs) acquiring HIV each year as a result. This qualitative study examined the lived experience of occupational exposure to HIV or hepatitis C reported by four HCPs working in a tertiary care hospital in United Arab Emirates (UAE). Findings were based on interviews conducted as part of a larger two-year study investigating an intervention to improve the reporting and management of blood and body fluid exposures (BBFE) in the hospital. The data showed that due to cultural differences, individuals exposed to the same disease within the same legal system could have different concerns. Five themes arose from the data: (1) experiencing the unexpected, (2) inevitability and finality, (3) impact of stigma, (4) responsibility and risk and (5) legal and financial implications. The participants' most important concerns and causes of stress arising from occupational BBFE were related to the social implications (i.e., stigma; legal and financial costs) rather than the biological consequences of the disease. Social implications like these may negatively impact on reporting of occupational BBFE in UAE, but may need to be addressed at a societal rather than organisational level.

Research paper thumbnail of Goal planning for adults with acquired brain injury: How clinicians talk about involving family

Brain Injury, 2009

Although family involvement is frequently identified as a key element of successful rehabilitatio... more Although family involvement is frequently identified as a key element of successful rehabilitation, questions remain about 'how' clinicians can best involve them. This study explored how clinicians talk about the involvement of families in goal-planning during rehabilitation of adults with acquired brain injury. Qualitative study drawing on grounded theory to elicit practitioner perspectives. Nine clinicians from a range of professional backgrounds were interviewed. Interview data were transcribed and analysed using the constant comparative method of grounded theory. NVivo software was used to assist with data management. While family were often considered valuable contributors to the goal-planning process, they were also seen as potential barriers to the negotiation of goals between clinicians and patients and to patient-clinician relationships. Clinicians described restricting involvement of family members in situations where such involvement was thought not to be in the best interests of the patient. Goal-planning appeared patient-centred rather than family-centred. Further, clinicians identified concerns about extending family involvement in goal-planning. If clinicians intend to address the needs of family members as well as patients, current approaches to goal-planning (and rehabilitation funding) may need to be reconsidered.

Research paper thumbnail of Tbi Tools Review & Supplementary Report

Research paper thumbnail of How family carers engage with technical health procedures in the home: a grounded theory study: Figure 1

BMJ Open, 2015

To explore the experiences of family carers who manage technical health procedures at home and de... more To explore the experiences of family carers who manage technical health procedures at home and describe their learning process. A qualitative study using grounded theory. New Zealand family carers (21 women, 5 men) who managed technical health procedures such as enteral feeding, peritoneal dialysis, tracheostomy care, a central venous line or urinary catheter. In addition, 15 health professionals involved in teaching carers were interviewed. Semistructured interviews were coded soon after completion and preliminary analysis influenced subsequent interviews. Additional data were compared with existing material and as analysis proceeded, initial codes were grouped into higher order concepts until a core concept was described. Interviewing continued until no new ideas emerged and concepts were well defined. The response of carers to the role of managing technical health procedures in the home is presented in terms of five dispositions: (1) Embracing care, (2) Resisting, (3) Reluctant acceptance, (4) Relinquishing and (5) Being overwhelmed. These dispositions were not static and carers commonly changed between them. Embracing care included cognitive understanding of the purpose and benefits of a procedure; accepting a 'technical' solution; practical management; and an emotional response. Accepting embrace is primarily motivated by perceived benefits for the recipient. It may also be driven by a lack of alternatives. Resisting or reluctant acceptance results from a lack of understanding about the procedure or willingness to manage it. Carers need adequate support to avoid becoming overwhelmed, and there are times when it is appropriate to encourage them to relinquish care for the sake of their own needs. The concept of embracing care encourages health professionals to extend their attention beyond simply the practical aspects of technical procedures to assessing and addressing carers' emotional and behavioural responses to health technology during the training process.

Research paper thumbnail of Simple equipment and complicated situations – what training is needed for effective equipment use after stroke?

Introduction: Occupational therapy for people recovering from stroke often includes provision of ... more Introduction: Occupational therapy for people recovering from stroke often includes provision of equipment (Wolf et al., 2009), yet non-use of equipment is estimated to be up to 50% (Kraskowsky & Finlayson, 2001). Recent research indicates that training clients can increase equipment use after stroke (Chiu & Man, 2008) but it is unclear to what extent such training is routinely provided. This research examines the process of equipment training and provision and how it contributes to the aims of occupational therapy after stroke. Methods: A postal survey with both open and closed questions was initially sent to 616 people admitted to hospital with stroke in 2012. Multivariate regression analysis is intended for examining the relationships between demographic factors and patient experiences of the assessment, training, and delivery processes for equipment. This presentation however focuses on the free text responses to the survey. Ethics approval for this study was provided by New Zea...

Research paper thumbnail of Challenges of continuing with evidence based practice after post graduate study

Background Many clinicians enroll in postgraduate study to develop their skills as evidence based... more Background Many clinicians enroll in postgraduate study to develop their skills as evidence based practitioners. However there is a need to better understand if such study results in long term change in practice. Aim This study explored how and if postgraduate, interprofessional study in rehabilitation influenced students in their clinical setting after they completed their studies. Methods A cohort of 13 participants were selected for qualitative interviews from a group of 77 previous postgraduate who completed a related survey. The interviews were transcribed and thematic analysis was used to develop core themes. University of Otago Human Ethics Committee provided approval for this study. Results (preliminary) While many students had made substantial positive changes to the delivery of rehabilitation at their workplace, these changes were made despite some significant barriers to implementation of this new knowledge. Four core themes emerged in relation to barriers to implementati...

Research paper thumbnail of ‘Swings and roundabouts’: The influence of external factors on the way married couples cope with multiple sclerosis

Coping with MS has different challenges for people who have the condition and their spouses. This... more Coping with MS has different challenges for people who have the condition and their spouses. This study used qualitative methods to explore external barriers and facilitators influencing coping for people with multiple sclerosis and their significant others. Highlighted themes were about the importance of timing of information, the role others with disabilities played in the development of coping strategies, the variety of experiences with health professionals and the changing nature of social circles as the disease progressed. Members of a couple where one has MS may respond to external support in different ways. Health professionals need advanced communication skills to deal with these changing needs as the disease progresses. Symptoms of MS can vary dramatically (1). Having MS or being a spouse of someone with MS decreases health status and social opportunities (2). Psychosocial factors such as coping can influence quality of life more than biological features (3).This paper exam...

Research paper thumbnail of Areas of consensus and controversy about goal setting in rehabilitation: a conference report

Clinical Rehabilitation, 2009

Objective: To consider clinical issues surrounding goal setting in neurological rehabilitation, a... more Objective: To consider clinical issues surrounding goal setting in neurological rehabilitation, and to identify priorities for future research.Participants: Twenty-four rehabilitation professionals were invited to attend because they had taught or published on the topic of goal setting. In addition two patient groups were represented.Evidence: (1) The results of a systematic literature review, (2) presentations given during the two-day conference by

Research paper thumbnail of Self-Reflective Meaning Making in Troubled Times: Change in Self-Identity After Traumatic Brain Injury

Qualitative health research, Jan 11, 2014

Our aim with this article is to clarify the concept of change in self-identity following traumati... more Our aim with this article is to clarify the concept of change in self-identity following traumatic brain injury (TBI). We used concept analysis methodology-predominantly concept clarification. We identified 110 articles using a systematic literature search, and used critical appraisal, content analysis, and analytical questioning to explore attributes and boundaries. A reported change in self-identity is the ultimate expression of a variety of cognitive, psychological, and social sequelae of TBI. We present an integrative model of this process, identifying three potential levels of change: (a) component parts (egocentric self, sociocentric self, and "identity as shared with others"); (b) integral processes (self-awareness and expression via meaningful occupation and narratives); and (c) whole-system disruption. Change in self-identity after TBI is a highly individualistic process. The driver of this process is "self-reflective meaning making," giving a purpose an...

Research paper thumbnail of Confident, Credible but Lonely - Outcomes following Postgraduate Interprofessional Education in Rehabilitation

Background: Interprofessional education aims to enhance health service delivery. This study exami... more Background: Interprofessional education aims to enhance health service delivery. This study examined whether health professionals changed their clinical practice after completion of a postgraduate, interprofessional qualification in rehabilitation. Methods: All graduates of postgraduate qualifications in rehabilitation at University of Otago were invited to complete a questionnaire. Thirteen participants were purposively selected for further in-depth interviews. Questionnaire data were summarised using descriptive statistics. Qualitative responses from questionnaires and interview transcripts were explored using thematic analysis. Findings: The survey response rate was 24% (77/315 students). Postgraduate study was reported to have had a positive impact on professional attitudes and commitment to learning (81%), to enhance interdisciplinary collaboration (79%), and to promote change in service delivery (40%). Themes identified from questionnaire responses were: 1) increased confidenc...

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

Research paper thumbnail of No. 112 Measurement of Problems With Self-Identity Following Traumatic Brain Injury: Development of a Concept Using Grounded Theory

Research paper thumbnail of Life goals and social identity in people with severe acquired brain injury: an interpretative phenomenological analysis

Disability and Rehabilitation, 2014

Research paper thumbnail of A new classification for outcomes in illness and injury

British Journal of Hospital Medicine, 2005

Illness and injury can lead to complex problems for patients and clinicians. A new approach from ... more Illness and injury can lead to complex problems for patients and clinicians. A new approach from the World Health Organization (WHO), the International Classification of Functioning, Disability and Health (ICF), may help manage such patients, and evaluate the success of the interventions used. The authors discuss the application of the ICF model.

Research paper thumbnail of Navigating patient-centered goal setting in inpatient stroke rehabilitation: How clinicians control the process to meet perceived professional responsibilities

Patient Education and Counseling, 2011

Patient-centered goal setting, while central to contemporary rehabilitation, has been associated ... more Patient-centered goal setting, while central to contemporary rehabilitation, has been associated with growing uncertainty regarding its application in clinical practice. We aimed to examine the application of goal setting in inpatient stroke rehabilitation. Data collected from 44 participants (nine patients, seven family members, 28 health professionals), using multiple data sources (interviews, recorded clinical sessions, team meetings, participant-observation, and clinical documentation), were analyzed using constant comparative methods. Certain goals (characterized by short timeframes, conservative estimation of outcomes, and physical function) were privileged over others. Involvement of patients and family in goal setting resulted in interactional dilemmas when their objectives, skills and perceived capacity did not align with privileged goals. When alignment did occur, greater patient involvement still did not appear to influence clinical reasoning. This study raises questions about how 'patient-centered' current goal setting practices are and whether a 'patient-centered' approach is even possible in inpatient stroke rehabilitation when considering predominant funding and health system models. For 'patient-centered' goal setting to be more than rhetorical, clinicians need to examine the values they attribute to certain types of goals, the influence of organizational drivers on goal selection, and how goals are actually used to influence clinical practice.

Research paper thumbnail of Coping with multiple sclerosis as a couple: ‘peaks and troughs’ – an interpretative phenomenological exploration

Disability and Rehabilitation, 2012

Multiple Sclerosis (MS) is a chronic degenerative condition where illness uncertainty is a key di... more Multiple Sclerosis (MS) is a chronic degenerative condition where illness uncertainty is a key difficulty that people with MS and their significant others have to cope with. Clinicians acknowledge that people with MS need to be seen in the context of their families, however there is little knowledge on what to expect about how people cope as a couple, which this study set out to explore. Interpretative Phenomenological Analysis (IPA) exploring, through semi-structured interviews, how seven couples, where one had MS, experienced coping with their situation. Two overarching themes pertaining to coping as a couple emerged from the data: Coping Together: "Peaks and Troughs" and Coping Over the Long Haul, with each overarching theme relating to sub-themes. Two integrative themes emerged also, which were called Faith in Self and Faith in Each Other. These results will assist clinicians better comprehend how those with MS and their spouses cope in an interconnected way and this in turn affects their experience of rehabilitation. Results from this research indicated that clinicians need to be sensitive to the individual coping strategies of both members of a couple where one has MS, and address the changing needs of their relationship.

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

Disability & Rehabilitation, 2010

To explore the use of qualitative metasynthesis to inform debate on the selection of outcome meas... more 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). 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. 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. 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 one's body and one's life following TBI.

Research paper thumbnail of A Good Lives Model of clinical and community rehabilitation

Disability & Rehabilitation, 2007

The aim of this paper was to introduce the Good Lives Model, originally developed for offender re... more The aim of this paper was to introduce the Good Lives Model, originally developed for offender rehabilitation, to the clinical rehabilitation community. We argue that this model has considerable promise, both as a 'thinking tool' and as an integrative framework emphasizing the centrality of the person in clinical and community rehabilitation for complex and chronic health conditions. The essential features of a good rehabilitation theory are first outlined. These are the general principles and assumptions that underpin a theory, the aetiological assumptions and the intervention implications. The Good Lives Model for clinical rehabilitation is then described in terms of these three components of a good rehabilitation theory. The Good Lives Model has considerable promise as a tool for integrating many diverse aspects of current best practice in rehabilitation while maintaining the individual client as the central focus. At the same time it is provisional and further theoretical development and empirical support is required.

Research paper thumbnail of Success in the workplace following traumatic brain injury: are we evaluating what is most important?

Disability & Rehabilitation, 2004

Vocational outcome, and in particular full-time paid work, is considered an important indicator o... more Vocational outcome, and in particular full-time paid work, is considered an important indicator of successful rehabilitation following traumatic brain injury (TBI). However it has not been established that these outcomes adequately or accurately represent the values of the people with TBI. This paper describes a study exploring the experiences of individuals who attempted returning to work following TBI, with emphasis on factors that related to perceptions of 'success' or 'failure'. A phenomenological study, interviewing seven people with moderate to severe TBI was conducted. The interview data were analysed for themes relating to experiences of success or failure in the workplace. Community consultation provided additional perspectives in the interpretation and validation of results. The results of this study support in part the assumption that paid employment is indicative of success following TBI. Equally prevalent were findings that challenged this assumption, including situations where: (1) return to employment contributed to catastrophic personal events, (2) feelings of success were achieved even though paid employment was not, and (3) success in the workplace was associated with factors other than hours worked or pay earned. This research suggests that the use of work placement as a measure of successful rehabilitation might misrepresent the perspective of individuals with TBI. A multifactorial approach to evaluating vocational rehabilitation is recommended, which incorporates the subjective experience of work.

Research paper thumbnail of Purposes and mechanisms of goal planning in rehabilitation: The need for a critical distinction

Disability & Rehabilitation, 2006

To determine a preliminary typology of purposes and mechanisms ascribed to goal planning in rehab... more To determine a preliminary typology of purposes and mechanisms ascribed to goal planning in rehabilitation. To demonstrate the importance of making a critical distinction between these different purposes and mechanisms when reviewing or designing research on goal planning in rehabilitation. A search of Medline, Embase, PsychINFO and CINAHL for articles on goal planning in rehabilitation. Articles were only included if they were about patient populations and made explicit statements regarding the function or purpose of goal planning in rehabilitation. Thematic analysis was used to qualitatively synthesise the purposes and mechanisms of goal planning described in the literature. Four major purposes for undertaking goal planning in rehabilitation are identified: (1) to improve patient outcomes (as determined by standardised outcome measures), (2) to enhance patient autonomy, (3) to evaluate outcomes, and (4) to respond to contractual, legislative or professional requirements. The first of these purposes is associated with four distinct mechanisms with the remaining three purposes appearing to relate to one underlying mechanism. This typology offers one approach for critically engaging with the wide-ranging issues in goal planning. Debate stemming from this work could facilitate systematic reviews of this area as well as guide research and application to practice.

Research paper thumbnail of Impact of stigma, culture and law on healthcare providers after occupational exposure to HIV and hepatitis C

Culture, Health & Sexuality, 2012

Worldwide, approximately three million needlestick or sharps injuries occur annually during healt... more Worldwide, approximately three million needlestick or sharps injuries occur annually during healthcare procedures, with an estimated 18-35 healthcare professionals (HCPs) acquiring HIV each year as a result. This qualitative study examined the lived experience of occupational exposure to HIV or hepatitis C reported by four HCPs working in a tertiary care hospital in United Arab Emirates (UAE). Findings were based on interviews conducted as part of a larger two-year study investigating an intervention to improve the reporting and management of blood and body fluid exposures (BBFE) in the hospital. The data showed that due to cultural differences, individuals exposed to the same disease within the same legal system could have different concerns. Five themes arose from the data: (1) experiencing the unexpected, (2) inevitability and finality, (3) impact of stigma, (4) responsibility and risk and (5) legal and financial implications. The participants' most important concerns and causes of stress arising from occupational BBFE were related to the social implications (i.e., stigma; legal and financial costs) rather than the biological consequences of the disease. Social implications like these may negatively impact on reporting of occupational BBFE in UAE, but may need to be addressed at a societal rather than organisational level.

Research paper thumbnail of Goal planning for adults with acquired brain injury: How clinicians talk about involving family

Brain Injury, 2009

Although family involvement is frequently identified as a key element of successful rehabilitatio... more Although family involvement is frequently identified as a key element of successful rehabilitation, questions remain about 'how' clinicians can best involve them. This study explored how clinicians talk about the involvement of families in goal-planning during rehabilitation of adults with acquired brain injury. Qualitative study drawing on grounded theory to elicit practitioner perspectives. Nine clinicians from a range of professional backgrounds were interviewed. Interview data were transcribed and analysed using the constant comparative method of grounded theory. NVivo software was used to assist with data management. While family were often considered valuable contributors to the goal-planning process, they were also seen as potential barriers to the negotiation of goals between clinicians and patients and to patient-clinician relationships. Clinicians described restricting involvement of family members in situations where such involvement was thought not to be in the best interests of the patient. Goal-planning appeared patient-centred rather than family-centred. Further, clinicians identified concerns about extending family involvement in goal-planning. If clinicians intend to address the needs of family members as well as patients, current approaches to goal-planning (and rehabilitation funding) may need to be reconsidered.