Re-engaging with places: Understanding bio-geo-graphical disruption and flow in adult brain injury survivors.

Acquired Brain Injury (ABI) is one of the most common causes of disability and death in adults worldwide. After a period of rehabilitation, many ABI survivors still face complex mind/body conditions when they try to take up their former life again. Besides lasting visible impairments such as weakness and loss of body balance, there are often less obvious disabilities such as extreme fatigue, hypersensitivity for stimuli, memory, concentration and attention problems or personality changes. The aim of this paper is to understand how ABI survivors and their significant others renegotiate their engagements with everyday places, using the concepts of bio-geo-graphical disruption and flow. We conducted in-depth interviews and did a place-mapping exercise with 18 adult ABI survivors and their significant others. The data were analysed according to the principles of thematic analysis, with use of Atlas.ti. In the struggles of ABI survivors' relations with place, our findings show diversity in personal experiences and strategies, as well as commonalities at a more general level. First, having access to meaningful places, old and new, and coming to terms with the fact that some places may not be accessible anymore, appeared to be vital in the participants' process of healing. Second, the interplay or, as we call it, reciprocity, between different places can contribute to wellbeing: for instance, the security and continuity found at home may enable ABI survivors to handle a trip to a crowded city centre. Thus, by framing mind/body problems of ABI survivors in terms of a network of meaningful places rather than as a body with lost functions, our study shows how the reciprocity between multiple places has a potentially positive effect on life post-ABI.

Unpacking community mobility: a preliminary study into the embodied experiences of stroke survivors.

PURPOSE: To enrich the discussion on mobility in stroke rehabilitation by translating theoretical repertoires of mobility from the context of geography to rehabilitation. METHOD: Qualitative research methodology was applied, and included in-depth interviews with stroke survivors. RESULTS: This study revealed: (a) social and material differences in clinical, private and public places; (b) ambivalences and shifting tensions in bodily, family and community life; (c) differences in access to resources to be used for mobility. Moving around safely was not a matter of being physically able to walk independently, it also involved dealing with different human actors - such as children, partners and shoppers, and non-human actors - such as doorbells and traffic rules. Stroke survivors had to balance exercise and training, family and working life, and leisure and pleasure, and to renegotiate their mobility in each context. CONCLUSIONS: Our study showed that mobility has many aspects that interact with each other in multiple ways for stroke survivors when they return home and thereafter. The current focus on adherence to mobility and exercise training at home needs to be critically reviewed as it does not capture the multiplicities embodied in real-life settings. Implications for rehabilitation Rehabilitation medicine needs to consider mobility as a way to connect places that are meaningful to individuals rather than as movements from A to B. Clinical outcome measurement tools, such as the 10-meter walk test, are inadequate for evaluating participation in the mobility domain at home or in the community. Mobility issues at the participation domain need to be considered in "how they hang together" rather than distinguished in different disciplinary domains. Rehabilitation practitioners should teach stroke survivors concrete strategies on how to creatively deal with the ambivalences and tensions around mobility in home and community life.

Home-making after stroke. A qualitative study among Dutch stroke survivors.

Stroke survivors may suffer from physical limitations as well as cognitive and behavioural difficulties. Many survivors work on their recovery in a rehabilitation clinic with the aim to return to their own home again. Since full recovery is often not feasible, they face the challenge of coming to terms with lasting effects of the stroke and of giving meaning to their home place again. Based on in-depth interviews with stroke survivors, we discuss the meaning of the home with respect to changed post-stroke identities. Our findings show how, for many participants, a formerly comfortable home becomes a space of struggle. Formerly stable bodily routines become time-consuming and demanding, reciprocal relationships with significant others change, often becoming unbalanced dependence. In conclusion, each stroke survivor faces a different struggle to accommodate a changed self in a house that does not feel like home anymore. These findings imply that stroke rehabilitation services need to address the individual and everyday challenges that stroke survivors and their families face at home, to improve their sense of home and well-being.

Place attachment in stroke rehabilitation: a transdisciplinary encounter between cultural geography, environmental psychology and rehabilitation medicine.

PURPOSE: To increase understanding of stroke survivor's needs to successfully re-establish attachment to meaningful places at home and in the community. METHODS: Qualitative research methodology including in-depth interviews with stroke survivors in the clinical, post-discharge and reintegration phases of the Rehabilitation process. RESULTS: Participants longed for recovery and domestic places in the clinical phase, for pre-stroke activities and roles in the post-discharge phase, and for recognition and a sense of belonging in the reintegration phase. The participants' selves had changed, while the spatial and social contexts of their homes had remained the same. Their spatial scope became smaller in both a social and a geographical sense. It was difficult to achieve a feeling of being at home in their bodies and own living environments again. The complexities that needed to be dealt with to engage with the outside world, turned participants unintentionally inwards. In particular, family members of participants with cognitive problems, longed for support and recognition in dealing with the changed personality of their spouses. CONCLUSIONS: Rehabilitation should put greater effort into supporting stroke survivors and their families in home-making and community reintegration processes, and help them to re-own and renegotiate their disabled bodies and changed identities in real life. Implications for Rehabilitation The experienced self-body split, identity confusion and related mourning process should be foregrounded in the post-discharge phase rather than functional recovery, in order to help stroke survivors understand and come to terms with their changed bodies and selves. In the post-discharge and reintegration phases stroke survivors should be coached in rebuilding meaningful relations to their bodies, home and communities again. This home-making process should start at real-life sites where stroke survivors wish to (inter)act.

Combined clinical and home rehabilitation: case report of an integrated knowledge-to-action study in a Dutch rehabilitation stroke unit.

BACKGROUND AND PURPOSE: There is growing awareness that the poor uptake of evidence in health care is not a knowledge-transfer problem but rather one of knowledge production. This issue calls for re-examination of the evidence produced and assumptions that underpin existing knowledge-to-action (KTA) activities. Accordingly, it has been advocated that KTA studies should treat research knowledge and local practical knowledge with analytical impartiality. The purpose of this case report is to illustrate the complexities in an evidence-informed improvement process of organized stroke care in a local rehabilitation setting. CASE DESCRIPTION: A participatory action approach was used to co-create knowledge and engage local therapists in a 2-way knowledge translation and multidirectional learning process. Evidence regarding rehabilitation stroke units was applied in a straightforward manner, as the setting met the criteria articulated in stroke unit reviews. Evidence on early supported discharge (ESD) could not be directly applied because of differences in target group and implementation environment between the local and reviewed settings. Early supported discharge was tailored to the needs of patients severely affected by stroke admitted to the local rehabilitation stroke unit by combining clinical and home rehabilitation (CCHR). OUTCOMES: Local therapists welcomed CCHR because it helped them make their task-specific training truly context specific. Key barriers to implementation were travel time, logistical problems, partitioning walls between financing streams, and legislative procedures. DISCUSSION: Improving local settings with available evidence is not a straightforward application process but rather a matter of searching, logical reasoning, and creatively working with heterogeneous knowledge sources in partnership with different stakeholders. Multiple organizational levels need to be addressed rather than focusing on therapists as sole site of change.

Incorporating self-management in prosthetic rehabilitation: case report of an integrated knowledge-to-action process.

BACKGROUND: In improvement of clinical practice, unidirectional approaches of translating evidence into clinical practice have been pinpointed as main obstacles. The concept of engaged scholarship has been introduced to guide knowledge-to-action (KTA) processes, in which research knowledge and practical knowledge derived from therapists, patients, and organizational structures mutually inform each other. Accordingly, KTA experts should engage end-users earlier in knowledge translation and work in concert with them on both knowledge creation and knowledge implementation. PURPOSE: The purposes of this case report are: (1) to provide an illustrative example of an evidence-informed improvement process in prosthetic rehabilitation in a local setting and (2) to articulate the bidirectional translation work incorporated into an integrated KTA process. CASE DESCRIPTION: A KTA expert translated research knowledge on self-management and task- and context-specific training into a functional prosthetic training program for patients with a lower limb amputation. Therapists contributed as co-creators to the translation process with practical knowledge of the specificities of the target group and local organizational context. The KTA expert moved the co-created knowledge into action in iterative and interactive steps with local therapists, patients, and managers. OUTCOME: This bidirectional KTA translation process led to shared ownership of the functional prosthetic training program, in which self-management and task- and context-specific training principles and practices were integrated. DISCUSSION: Bidirectional knowledge translation builds on explicating and integrating the different knowledge practices of researchers, therapists, and their patients. Knowledge-to-action experts and end-users have their own roles and activities in such knowledge translation processes. Appreciating these different roles in genuine partnerships and acknowledging the distinct but equally valued knowledge practices can help in effectively translating evidence into action.

Functional performance, participation and autonomy after discharge from prosthetic rehabilitation: barriers, facilitators and outcomes.

OBJECTIVE: To examine functional performance, participation and autonomy after discharge from prosthetic rehabilitation and to identify the barriers and facilitators affecting these outcomes. DESIGN: Concurrent mixed-methods design. Quantitative and qualitative data were collected at discharge from rehabilitation, and 3 and 6 months later. The data were integrated during analysis. SUBJECTS: Thirteen patients with a unilateral lower limb amputation participating for the first time in prosthetic rehabilitation in a Dutch rehabilitation centre. METHODS: Functional performance was measured using the Two-Minute Walk Test and L test, and participation and autonomy using the Impact on Participation and Autonomy questionnaire. Barriers and facilitators were identified in semi-structured interviews. RESULTS: After discharge, 9 out of 13 patients declined in functional performance. The principal problems in participation were observed in the "autonomy outdoors" and "family role" domains. Many factors affected functioning and participation and many differences were observed in the way that factors acted as barriers or facilitators for individual patients. No time patterns were found for barriers and facilitators. CONCLUSION: Post-discharge, distinctive fluctuations were observed in functional performance and participation and autonomy in patients with lower limb amputation. It is recommended that patients are educated about these fluctuations and the barriers and facilitators identified in the environmental, personal and medical contexts.

Cognitive treatment of illness perceptions in patients with chronic low back pain: a randomized controlled trial.

BACKGROUND: Illness perceptions have been shown to predict patient activities. Therefore, studies of the effectiveness of a targeted illness-perception intervention on chronic nonspecific low back pain (CLBP) are needed. OBJECTIVE: The purpose of this study was to compare the effectiveness of treatment of illness perceptions against a waiting list for patients with CLBP. DESIGN: This was a prospectively registered randomized controlled trial with an assessor blinded for group allocation. SETTING: The study was conducted in an outpatient rehabilitation clinic. PARTICIPANTS: The participants were 156 patients (18-70 years of age) with CLBP (>3 months). INTERVENTION: Patients were randomly assigned to either a treatment group or to a waiting list (control) group. Trained physical therapists and occupational therapists delivered 10 to 14 one-hour treatment sessions according to the treatment protocol. MEASUREMENTS: The primary outcome measure was change in patient-relevant physical activities (patient-specific complaints questionnaire). The secondary outcome measures were changes in illness perceptions (illness perceptions questionnaire) and generic physical activity level (quebec back pain disability scale). Measurements were taken at baseline (0 weeks) and after treatment (18 weeks). RESULTS: A baseline-adjusted analysis of covariance showed that there were statistically significant differences between intervention and control groups at 18 weeks for the change in patient-relevant physical activities. This was a clinically relevant change (19.1 mm) for the intervention group. Statistically significant differences were found for the majority of illness perception scales. There were no significant differences in generic physical activity levels. LIMITATIONS: Longer-term effectiveness was not studied. CONCLUSIONS: This first trial evaluating cognitive treatment of illness perceptions concerning CLBP showed statistically significant and clinically relevant improvements in patient-relevant physical activities at 18 weeks.

Best candidates for cognitive treatment of illness perceptions in chronic low back pain: results of a theory-driven predictor study.

OBJECTIVE: The aim of this study was to identify treatment-specific predictors of the effectiveness of a method of evidence-based treatment: cognitive treatment of illness perceptions. This study focuses on what treatment works for whom, whereas most prognostic studies focusing on chronic non-specific low back pain rehabilitation aim to reduce the heterogeneity of the population of patients who are suitable for rehabilitation treatment in general. DESIGN: Three treatment-specific predictors were studied in patients with chronic non-specific low back pain receiving cognitive treatment of illness perceptions: a rational approach to problem-solving, discussion skills and verbal skills. Hierarchical linear regression analysis was used to assess their predictive value. Short-term changes in physical activity, measured with the Patient-Specific Functioning List, were the outcome measure for cognitive treatment of illness perceptions effect. RESULTS: A total of 156 patients with chronic non-specific low back pain participated in the study. Rational problem-solving was found to be a significant predictor for the change in physical activity. Discussion skills and verbal skills were non-significant. Rational problem-solving explained 3.9% of the total variance. CONCLUSION: The rational problem-solving scale results are encouraging, because chronic non-specific low back pain problems are complex by nature and can be influenced by a variety of factors. A minimum score of 44 points on the rational problem-solving scale may assist clinicians in selecting the most appropriate candidates for cognitive treatment of illness perceptions.

Physical and rehabilitation medicine and self-management education: a comparative analysis of two approaches.

BACKGROUND: Discussion surrounds the publication The White Book on Physical and Rehabilitation Medicine in Europe as to whether the medical specialty termed "physical and rehabilitation medicine" is in fact a reality. OBJECTIVE: To disclose previously undiscussed issues related to The White Book on Physical and Rehabilitation Medicine in Europe by juxtaposing its content with a body of work from a related healthcare approach termed "self-management education". METHODS: Inspired by discourse analysis and actor network theory, texts on both approaches were contrasted as having vocabularies of their own expressed under certain material conditions. ISSUES: Four issues arose: (i) the difference in illness trajectories between a sudden transition from an able to disabled person after a disease with acute onset and the indefinite and unpredictable course of a chronic disease; (ii) the different material and social set-up of clinical and community rehabilitation settings; (iii) the influence of these different implementation environments on goal-setting; and (iv) the relative neglect of social theory in physical and rehabilitation medicine. CONCLUSION: If a bio-psycho-social functional approach to patients with acute and chronic conditions is regarded as essential for the identity of physical and rehabilitation medicine, the discourse on chronic illness should be paid more explicit attention.

Benefits of treatment theory in the design of explanatory trials: cognitive treatment of illness perception in chronic low back pain rehabilitation as an illustrative example.

BACKGROUND: Evidence-based treatment is not effective for all patients. Research must therefore be carried out to help clinicians to decide for whom and under what circumstances certain treatment is effective. Treatment theory can assist in designing research that will provide results on which clinical decision-making can be based. OBJECTIVE: To illustrate how treatment theory can be helpful in the design of explanatory trials that assist clinical decision-making. METHODS: The benefit of treatment theory was demonstrated by approaching the design of a clinical trial from two perspectives: one without the use of treatment theory and one with the explicit use of treatment theory. Evaluation of the effectiveness of cognitive treatment of illness perceptions for patients with chronic low back pain was used as an illustrative example. ISSUES: With treatment theory as the main focus, the intervention became the starting point for the design of an explanatory trial. Potentially relevant patient selection criteria, essential treatment components, the optimal choice of a control group and the selection of outcome measures were specified. CONCLUSION: This paper not only describes problems encountered in research on the effectiveness of treatment, but also ways in which to address these problems.

Improving rehabilitation treatment in a local setting: a case study of prosthetic rehabilitation.

OBJECTIVE: To contribute to the discussion on the research-practice gap by illustrating obstacles and opportunities that arise in an evidence-informed improvement process of prosthetic rehabilitation in a local setting. SETTING: Dutch rehabilitation centre. PRESUPPOSITION: The improvement process was considered as a two-way translation process rather than a unidirectional process of knowledge transfer between science and practice. METHOD: Case study and participatory research methods comprising documentary analysis, treatment observations, individual and focus groups interviews, and literature studies. A qualitative software program (Atlas-ti) was used to triangulate the collected data. RESULTS: The main concern of local practitioners was identified to be the post-discharge decline in functional capacity in elderly amputees. This was related to a predominantly biomedical and biomechanical approach, and accompanying traditional therapist-patient interactions. The content and underpinnings of prosthetic treatments were scarcely specified in either the scientific literature or the local setting. Generic principles and practices from other fields were useful for treatment innovation for post-discharge problems, such as task- and context-specific training and self-management education. A circuit training focused on motor learning and a problem-solving training focused on social learning were developed by integrating amputation-specific knowledge. CONCLUSION: Improving rehabilitation practice with the use of available evidence is a heterogeneous and multifaceted scientific enterprise. Such an enterprise requires as much self-reflexivity from researchers as from practitioners.

The benefits of theory for clinical practice: cognitive treatment for chronic low back pain patients as an illustrative example.

PURPOSE: To demonstrate, with the help of an example of cognitive treatment for patients with chronic low back pain, how a systematic description of the content and theoretical underpinnings of treatment can help to improve clinical practice. METHODS: A conceptual analysis, two types of theories, and a programme-theory framework were instrumental in systematically specifying the content of the treatment and the underlying assumptions. RESULTS: A detailed description of the cognitive treatment, including: (i) The intended outcomes; (ii) the related treatment components; (iii) the therapeutic process that is expected to mediate between outcomes and components, (iv) the conditions for optimal application; and (v) the guiding principles. CONCLUSIONS: The systematic description of the treatment revealed important issues for clinical practice, such as the patient and therapist characteristics that are needed for optimal provision of cognitive treatment. The discussions on the role of theory in rehabilitation practice are taken one step further in this clinical commentary: instead of simply describing the problems, we also demonstrated a means to tackle them.

The main problems of parents of a child with epidermolysis bullosa.

Epidermolysis Bullosa (EB) is a rare genetic blistering-skin disorder with varying degrees of severity, ranging from mild forms to severe forms, with chronic progression. The aim of this study was to identify and specify the problems of parents of a child with EB. Qualitative research methodology was used, comprising a series of semistructured interviews with eleven families. The key problems of parents were broken down into three themes, related to the child, the family, and the care providers. These themes comprised nine categories, including (1) the child being different, (2) the child suffering pain, (3) feelings of uncertainty, (4) restrictions on employment and leisure time, (5) difficulties in organization of care, (6) never being off-duty, (7) family problems, (8) ignorance and lack of skills of care providers, and (9) resistance to difficult care. Despite the great variance in clinical pictures of the different (sub)types of EB, the main problems parents experienced appear quite similar. However, the problems did appear to differ in extensiveness, intensity, and gravity.

Main problems experienced by children with epidermolysis bullosa: a qualitative study with semi-structured interviews.

The objective of this study was to identify and specify the problems of children with epidermolysis bullosa. The questions explored were: (i) What do children with epidermolysis bullosa experience as the most difficult problems; (ii) What is the impact of these problems on their daily life; and (iii) Do these experiences differ between mildly and severely affected children? Qualitative research methodology was used, comprising a series of semi-structured interviews with children with different (sub)types of epidermolysis bullosa. The interviews were analysed systematically with help of the qualitative software package Atlas-ti. Five main themes were found: (i) having an itchy skin, (ii) being in pain, (iii) having difficulties with participation, (iv) lack of understanding of others, and (v) the feeling of being different. Severely affected children suffered most from itch and treatment-related pain. Mildly affected children had more problems with activity-related pain. Mildly affected children also had more concerns about their appearance and the teasing and staring of others than did severely affected children. Both groups had difficulties with participation, the visibility of their disease and the feeling of being different.

Distinguishing theories of dysfunction, treatment and care. Reflections on 'describing rehabilitation interventions'.

BACKGROUND: An editorial by Wade (Clinical Rehabilitation 2005; 19: 811-18) suggested a method for describing rehabilitation interventions. OBJECTIVE: To review the editorial critically, and to suggest a more complete theory. EDITORIAL: The editorial develops a model identifying factors that should be considered when analysing a complex rehabilitation problem, and provides a high-level description of the rehabilitation process. It explicitly does not address theories of behaviour change. NEW IDEAS: Three additional theoretical models are needed. The first considers the mechanisms that link the factors identified in Wade's model. For example how does self-esteem (in personal context) actually influence activity performance? This is a theory of dysfunction. The second needs to discuss how treatments alter their target. For example how does cognitive behavioural therapy alter pain perception and/or alter activity performance? This is a theory of treatment. It may be related to the theory of dysfunction. The third, which is less certain, needs to consider the process of giving support (maintaining the status quo). For example, how should one offer continuing opportunities for meaningful social role performance to someone with major cognitive losses? This is a theory of care. CONCLUSION: The two models that Wade integrated in his conceptual framework (the World Health Organization's International Classification of Functioning (WHO ICF) and the rehabilitation process) should primarily be considered as descriptive in character. Theories are still needed to understand how activity limitation arises and how treatments alter activity limitation, and possibly how a patient is supported to maintain a certain level of activity.