William Levack

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

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 investigators working within the field of goal setting, (3) questions and statements from conference attendees during open discussion, (4) a report initially formulated by a panel composed of four of the conference attendees, and then circulated to all attendees for comment, (5) views of the conference attendees gathered using a modified Delphi technique. Consensus: There were significant areas of consensus about goal setting. The Delphi studies highlighted and confirmed these areas of general agreement with consensus that goal setting is a core component of the rehabilitation process, and that goals should be specific, ambitious, relevant and time limited, with incremental steps that lead to progressive achievement. It was also agreed that that goal setting has a major impact on the relationship between patient and professional, with the availability of professional time and expertise being key to the success of the process. Controversy: Areas in which there was more controversy centred on the evaluation of goal achievement and the benefits of ambitious rather than achievable goals. The need for patient-centred goal setting was recognized, although it was felt at times that there were conflicts that prevented this being attainable.

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.

A Good Lives Model of clinical and community rehabilitation

Aims of the paper. 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. Key findings and implications. 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. Conclusions and recommendations. 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.

Coping with multiple sclerosis as a couple: 'peaks and troughs' - an interpretative phenomenological exploration.

Purpose: 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. Method: Interpretative Phenomenological Analysis (IPA) exploring, through semi-structured interviews, how seven couples, where one had MS, experienced coping with their situation. Results: 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. Conclusions: 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. Implications for Rehabilitation It is important to consider how people with MS and their significant others cope as a couple when planning rehabilitation intervention Health professionals need to be mindful that the coping strategies of people with MS and their partners’ is reliant on concentrating on the present Health professionals could take a greater role in considering couples’ relationships and the role of optimism as part of rehabilitation

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.

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

Abstract Purpose: While there is a growing body of literature exploring life goals in rehabilitation, little research has been undertaken that includes the voice of the end-user. This study examined the views and experiences of people with severe acquired brain injury regarding the place of “life goals” in residential rehabilitation. Methods: Interpretative phenomenological analysis was used to collect and analyze data from five semi-structured interviews with participants in a residential rehabilitation setting. Results: Three inter-related themes emerged from this study. Social connectedness (being ‘part of things’) emerged as a life goal of central importance for all participants (Theme 1). However, in order to achieve this sense of belonging, the participants needed to tentatively balance the opportunities arising within their environmental milieu (Theme 2) with the interpersonal factors relating to their unchanged, changed and changing self-identity (Theme 3). Conclusions: This study suggests that social identity and social connectedness ought to be primary foci of rehabilitation rather than matters only of secondary concern. Consideration needs to be given to both the environmental contexts and the intrapersonal strategies that support people who require residential rehabilitation services to achieve social connection, and thus their life goals, following a severe acquired brain injury. Implications for Rehabilitation There is a need to better support people with severe acquired brain injury (ABI) in terms of their social relationships and social identity during the delivery of person-centered rehabilitation services. Within the clinical setting there should be regular, in depth and open dialogue in which the individuals’ values and preferences are discovered. A focus on the coherence between daily activities and the person’s life goals is required for people with severe ABI. Clinicians need to consider how life goals for individual people change or are re-prioritized over the life span.

Self-Reflective Meaning Making in Troubled Times: Change in Self-Identity After Traumatic Brain Injury

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 and direction in life, providing motivation and goals for future behavior.

The role of qualitative metasynthesis in evidence-based physical therapy

Abstract Background: Qualitative metasynthesis is a method for systematically identifying, examining, comparing, and interpreting findings from multiple published qualitative studies on specific topics. It has been argued that qualitative metasynthesis may be useful for increasing the transferability of findings from single qualitative studies to broader contexts, in part addressing the limitations of qualitative research regarding its generalizability and thus its application to evidence-based practice. Objectives: The aim of this paper is to provide an introduction to qualitative metasynthesis, to examine its potential application to physical therapy, and to discuss and debate its strengths and limitations. Major findings: Only one qualitative metasynthesis appears to have been published in physical therapy journals to date, although many other qualitative metasyntheses potentially relevant to physical therapy (on topics such as neurological, musculoskeletal, and cardiac conditions) have been published in journals intended for interprofessional audiences. Qualitative metasynthesis may be beneficial in terms of its capacity to progress theory related to physical therapy, and as a way of introducing qualitative research into public policy and development of clinical practice. Some challenges exist regarding aspects of qualitative metasynthesis, such as the place of critical appraisal of qualitative studies and the representativeness of findings from qualitative metasyntheses. These challenges continue to be enthusiastically debated. Conclusion: Uptake of qualitative metasynthesis in journals dedicated to physical therapy has been limited, but physical therapists may find qualitative metasyntheses relevant to their work outside these profession-specific forums. Qualitative metasynthesis may in the future play an important role in the development of physical therapy practice.

Exploring the experience of sleep and fatigue in male and female adults over the 2 years following traumatic brain injury: a qualitative descriptive study

Objectives To explore the experience of fatigue and sleep difficulties over the first 2 years after traumatic brain injury (TBI). Design Longitudinal qualitative descriptive analysis of interviews completed as part of a larger longitudinal study of recovery following TBI. Data relating to the experience of fatigue and/or sleep were extracted and coded by two independent researchers. Setting Community-based study in the Hamilton and Auckland regions of New Zealand. Participants 30 adult participants who had experienced mild, moderate or severe brain injury within the past 6 months (>16 years of age). 15 participants also nominated significant others to take part. Interviews were completed at 6, 12 and 24 months postinjury. Results Participants described feeling unprepared for the intensity, impact and persistent nature of fatigue and sleep difficulties after injury. They struggled to learn how to manage their difficulties by themselves and to adapt strategies in response to changing circumstances over time. Four themes were identified: (1) Making sense of fatigue and sleep after TBI; (2) accepting the need for rest; (3) learning how to rest and; (4) need for rest impacts on ability to engage in life. Conclusions Targeted support to understand, accept and manage the sleep and fatigue difficulties experienced may be crucial to improve recovery and facilitate engagement in everyday life. Advice needs to be timely and revised for relevance over the course of recovery.

How family carers engage with technical health procedures in the home: a grounded theory study.

Objectives To explore the experiences of family carers who manage technical health procedures at home and describe their learning process. Design A qualitative study using grounded theory. Participants 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. Methods 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. Results 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. Conclusions 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.