Nicola M. Kayes

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.

Metaphoric identity mapping: Facilitating goal setting and engagement in rehabilitation after traumatic brain injury

Difficulty re-establishing an organised and compelling sense of personal identity has increasingly been identified as a critical theme in outcome studies of individuals with severe traumatic brain injury (TBI) and a serious obstacle to active engagement in rehabilitation. There exists little empirical support for approaches to identity reconstruction that address common impairments associated with TBI. Similarly, there is as yet little empirical support for theoretically sound approaches to promoting engagement in goal setting for this population. This article has two purposes. First, theory and procedures associated with metaphoric identity mapping are discussed in relation to goal setting in TBI rehabilitation. Second, the results of a qualitative pilot study are presented. The study explored metaphoric identity mapping as a facilitator of personally meaningful goal setting with five individuals with significant disability many years after their injury. Drawing on principles of grounded theory, the investigators extracted data from semi-structured interviews with clients and clinicians, from focus groups with the clinicians, and from observation of client–clinician interaction. Analysis of the data yielded five general themes concerning the use of this approach: All clients and clinicians found identity mapping to be an acceptable process and also useful for deriving meaningful rehabilitation goals. Both clients and clinicians saw client-centred goals as important. Cognitive impairments posed obstacles to this goal-setting intervention and mandated creative compensations. And finally, identity-related goal setting appeared to require a “mind shift” for some clinicians and demanded clinical skills not uniformly distributed among rehabilitation professionals.

A pilot study of self-regulation informed goal setting in people with traumatic brain injury:

Objective: To determine the acceptability and clinical application of two recently developed goal-setting interventions (Goal Management Training and Identity Oriented Goal Training) in people with traumatic brain injury. Design: A three parallel group, randomized controlled pilot study. Setting: Inpatient and community rehabilitation facilities. Subjects: Thirty-four people with moderate to severe traumatic brain injury (Goal Management Training, n = 12; Identity Oriented Goal Training, n = 10; usual care, n = 12) and their rehabilitation clinicians. Interventions: For both Goal Management Training and Identity Oriented Goal Training participants met face to face with their key worker weekly over a period of 6—8 weeks, during which time the key worker worked to engage them in goal setting and goal performance using the strategy prescribed by their group allocation. Usual care was provided to the other participants. Main measures: Largely qualitative using observation, individual interviews and focus groups. Participants also completed a Goal Attainment Scale at baseline, post intervention and at three months follow-up. Results: Both approaches were acceptable to the majority of participants with many reporting improved mood and goal attainment. Clinicians found working in a different way with patients both challenging and rewarding, with both experimental approaches enhancing a focus on the persons own goals. Identity Oriented Goal Training seemed particularly helpful in engaging people in the goal-setting process while Goal Management Training appeared particularly helpful in providing a structured framework for error prevention in attempting goal performance. Conclusion: These theoretically informed approaches to goal setting showed promise but were time intensive and at times difficult for practitioners to utilize.

Facilitators and barriers to engagement in physical activity for people with multiple sclerosis: a qualitative investigation

Purpose. To explore the barriers and facilitators to engagement in physical activity from the perspective of people with multiple sclerosis (MS). Method. This study adopted a qualitative descriptive design, using semi-structured interviews. Participants were recruited through local MS Societies and one District Health Board as part of a larger study. Ten people with a definite diagnosis of MS were purposefully selected aiming for diversity on a range of characteristics. Results. A number of factors were identified that seemed to interact and work to tip the decisional balance regarding physical activity engagement for people with MS. The most prominent themes included beliefs about physical activity; related emotional responses; and the role of fatigue in the decision to take part in physical activity. One of the most striking findings was the apparent tension surrounding the decision to take part in physical activity which seemed to be related to the co-existence of conflicting beliefs. Conclusions. For people with MS, the decision to engage in physical activity (or not) is complex, fluid and individual; made more complex by the unpredictable nature of MS. Rehabilitation professionals attempting to engage people with MS in a physical activity programme should consider adopting an individualised approach to barrier management which takes into account personal beliefs and perceptions regarding physical activity engagement.

Implementing a client-centred approach in rehabilitation: an autoethnography

Purpose: Client-centred practice is widely considered a key element of rehabilitation. However, there is limited discussion of how it should be implemented. This study explored how client-centred practice was operationalized during a clinical trial of innovative goal-setting techniques. Method: This study drew on principles of co-autoethnography. The personal experiences of three clinical researchers were explored to identify insights into client-centred practice, and seek understanding of this within the broader socio-cultural context. Data were collected through group discussions and written reflections. Thematic analysis and coding were used to identify the dominant themes from the data. Results: The primary way that client-centred practice was operationalized was through listening in order to get to know, to uncover and to understand what was meaningful. Four strategies were identified: utilizing mindful listening, allowing time, supporting clients to prioritize what is meaningful and viewing the therapists’ role differently. Conclusion: While technical competence in rehabilitation is important, our study suggested a starting point of ‘being with’ rather than ‘doing to’ may be beneficial for engaging people in their rehabilitation. We have highlighted a number of practical strategies that can be used to facilitate more client-centred practice. These approaches are consistent with what clients report they want and need from rehabilitation services. Implications for Rehabilitation At face value, clinical practice may appear to be client-centred. However, critical reflection of existing practice suggests that in reality, it is not well operationalized. Prioritizing getting to know the client, their story and what is meaningful to them appears fundamental to client-centred practice. A number of strategies may facilitate this process, including mindful listening on the part of the clinician and allowing time. Structures and processes need to be instituted to support implementation of client-centred practice. Autoethnography is an approach that may support clinicians’ to reflect on their practice.

A conceptual review of engagement in healthcare and rehabilitation

Abstract Purpose: This review sought to develop an understanding of how engagement in healthcare has been conceptualized in the literature in order to inform future clinical practice and research in rehabilitation. A secondary purpose was to propose a working definition of engagement. Methods: EBSCO and SCOPUS databases and reference lists were searched for papers that sought to understand or describe the concept of engagement in healthcare or reported the development of a measure of engagement in healthcare. We drew on a Pragmatic Utility approach to concept analysis. Results: Thirty-one articles met the criteria and were included in the review. Engagement appeared to be conceptualized in two inter-connected ways: as a gradual process of connection between the healthcare provider and patient; and as an internal state, which may be accompanied by observable behaviors indicating engagement. Conclusion: Our review suggests engagement to be multi-dimensional, comprising both a co-constructed process and a patient state. While engagement is commonly considered a patient behavior, the review findings suggest clinicians play a pivotal role in patient engagement. This review challenges some understandings of engagement and how we work with patients and highlights conceptual limitations of some measures. Implications for Rehabilitation Engagement appears to be a multi-dimensional construct, comprising both a co-constructed process and a patient state. Conceptualizing engagement as a co-constructed process may help clinicians be more aware of their role in patient engagement and sees the responsibility to engage shift from the patient to the therapeutic dyad. Challenges in engagement may be a prompt to reflect on how the clinician is working and whether different ways of working may be beneficial.

Exploring the facilitators and barriers to engagement in physical activity for people with multiple sclerosis

Purpose. To explore the relationship that cognitive behavioural and other previously identified variables have with physical activity engagement in people with multiple sclerosis (MS). Methods. This study adopted a cross-sectional questionnaire design. Participants were 282 individuals with MS. Outcome measures included the Physical Activity Disability Survey – Revised, Cognitive and Behavioural Responses to Symptoms Questionnaire, Barriers to Health Promoting Activities for Disabled Persons Scale, Multiple Sclerosis Self-efficacy Scale, Self-Efficacy for Chronic Diseases Scales and Chalder Fatigue Questionnaire. Results. Multivariable stepwise regression analyses found that greater self-efficacy, greater reported mental fatigue and lower number of perceived barriers to physical activity accounted for a significant proportion of variance in physical activity behaviour, over that accounted for by illness-related variables. Although fear-avoidance beliefs accounted for a significant proportion of variance in the initial analyses, its effect was explained by other factors in the final multivariable analyses. Conclusions. Self-efficacy, mental fatigue and perceived barriers to physical activity are potentially modifiable variables which could be incorporated into interventions designed to improve physical activity engagement. Future research should explore whether a measurement tool tailored to capture beliefs about physical activity identified by people with MS would better predict participation in physical activity.

Understanding Hope After Stroke: A Systematic Review of the Literature Using Concept Analysis

Abstract Purpose: Hope is said to be important in recovery from illness or injury, supporting adjustment, perseverance, and positive outcomes. There has been little exploration of hope in people after stroke. This is reflected in the literature, which lacks consistent definition and terminology. This purpose of this article is to clarify the concept of hope after stroke and to synthesize the findings to propose a working model of hope. Method: A systematic literature search was completed. Articles were included if they explored hope from the perspective of people with stroke or if hope was reported as a key finding in a study. Coding, analytic questions, and matrices were used to extract data and to compare, contrast, and synthesize conceptualizations, processes, and outcomes of hope. This was guided by a concept analysis methodology. Results: The literature search identified 20 articles that met the inclusion criteria. Analysis of these articles suggested hope was conceptualized in 3 interrelated ways – as an inner state, as being outcome-oriented, and as an active process. Findings suggested that internal and external resources contributed to the development of hope. Hope was perceived to be linked with positive outcomes and functioned as a motivator and source of strength through recovery. Hope reflected elements also found in the concepts of expectations, goals, and optimism. Conclusion: This novel approach to analysis has furthered the understanding of hope. It has proposed a working model of hope that could be used by clinicians in considering hope with their clients and patients.

Exploring Actical Accelerometers as an Objective Measure of Physical Activity in People With Multiple Sclerosis

OBJECTIVE To assess the feasibility, acceptability, and psychometric properties of Actical accelerometers in people with multiple sclerosis (MS). DESIGN Participants attended 2 testing sessions 7 days apart in which they completed 6 activities ranging in intensity while wearing an Actical accelerometer and Polar heart rate monitor. Perceived exertion was recorded after each activity. SETTING University research center. PARTICIPANTS People (N=31) with a definite diagnosis of MS were purposefully selected, aiming for diversity in level of reported disability, age, sex, and type of MS. INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES Actical accelerometer, Polar S810i and RS800sd heart rate monitors, Borg rating of perceived exertion, six-minute walk test (6MWT), 30-second chair stand test. RESULTS Accelerometers had good feasibility and acceptability in people with MS. Test-retest reliability was poor for sedentary and free-living activities, with low to moderate intraclass correlation coefficients (.00-.75), but was better for more vigorous or rhythmic activities (.85-.90). Bland-Altman 95% limits of agreement for average accelerometer counts were wide, ranging from +/-16 (newspaper reading) to +/-1330 (6MWT). Validity was not established with 95% prediction intervals showing high variability for all activities. CONCLUSIONS The psychometric problems highlighted here suggest Actical accelerometers should be used with caution in people with MS as a measure of physical activity, particularly when measuring comparatively sedentary or free-living activities.

Are physiotherapists comfortable with person-centred practice? An autoethnographic insight.

Abstract Purpose: This study aimed to understand our shared conflicting response and discomfort to person-centred rehabilitation within the context of our physiotherapy rehabilitation culture by reflecting on our own experiences as research physiotherapists and clinicians. Method: This study used autoethnographical methods to explore the personal and professional experiences of two physiotherapists in neurological rehabilitation. Data were collected through ten written reflections and five joint discussions. The data were analysed collaboratively through focused conversations and writing. We looked for patterns in our data and the literature to triangulate our findings. Joint narratives were structured based on three headings: Where we have come from, Challenges to our position and Where we are now. Results: The four main topics of discussion were goal setting, hope, the physiotherapy paradigm and person-centred practice. Physiotherapy practice is typically underpinned by a biomechanical discourse, which separates the mind and the body. This paradigm limits our ability to manage aspects of person-centred practice, such as valuing patient preferences, fostering hope, managing expectation and building a positive therapeutic relationship. Conclusion: Awareness of existing influences on theory and practice is necessary to move the physiotherapy profession towards a greater degree of understanding and application of the principles of person-centred practice. Implications for Rehabilitation Physiotherapists need to recognise that our clinical practice is currently dominated by a biomechanical perspective, which limits our adoption of person-centred practice. Our usual way of working as an expert focuses on our own perspective that makes it difficult to work in a person-centred way. Strategies to incorporate a more person-centred approach include using communication strategies that help us actively seek patients’ perspectives.