Going home to get on with life: patients and carers experiences of being discharged from hospital following a stroke.

PURPOSE: In this paper we aim to develop the understanding of what constitutes a 'good' or 'poor' experience in relation to the transition from hospital to home following a stroke. METHOD: Semi-structured interviews were carried out with 20 people and 13 carers within one month of being discharged from hospital following a stroke. Interviews covered views of mobility recovery and support from therapy and services. Interviews were transcribed verbatim, coded and analysed in depth in order to explore the discharge process. RESULTS: Participants described models of recovery, which involved a sense of momentum and getting on with their life. Discharge was successful if: (i) This sense of momentum was maintained, (ii) they felt supported, and (iii) they felt informed about what was happening. Discharge was seen as difficult when: (a) Momentum was perceived to be lost, (b) people did not feel supported, or (c) they felt in the dark about the plans or their recovery. CONCLUSIONS: The discharge experience could be improved by healthcare professionals understanding and exploring patients' individual models of recovery. This would allow professionals to: (a) Access patients concerns, (b) develop programmes addressing these, (c) correct misinterpretations, (d) keep people fully informed, and (e) share and validate the experience, to reduce their sense of isolation.

Resuming previously valued activities post-stroke: who or what helps?

PURPOSE: In this article, we aim to develop the understanding of what helps or hinders resumption of valued activities up to 12-months post-stroke. METHOD: As part of a longitudinal study, semi-structured interviews were conducted with 19 people with stroke and eight informal carers 12-months post-stroke. Interviews covered ongoing effects of stroke, experience of trying to resume activities highlighted as important pre-stroke and factors that influenced progress. Interviews were transcribed, coded and analysed in depth to explore this aspect of the experience of living with stroke. RESULTS: Valued activities discussed related to employment; domestic and social roles including driving; hobbies, sports and socialising. Outcomes for individuals were influenced by: aspects of physical or cognitive disability; environmental factors; the adaptability of the individual; support from others and professional help. Inability to resume activities impacted on people's sense of self and quality of life, but some tolerated change and presented themselves as adaptable. CONCLUSIONS: This study indicates a long-term role for rehabilitation services such as: identifying the significance of different types of activities; providing access to support and treatment for debilitating symptoms such as fatigue and dizziness; addressing patients' emotional and behavioural responses to their condition; working with patients' wider social networks and where appropriate, supporting adaptation to a changed way of life.

Occupational therapy for patients with Parkinson's disease.

BACKGROUND: Despite drug and surgical therapies for Parkinson's disease, patients develop progressive disability. The role of the occupational therapist is to support the patient and help them maintain their usual level of self-care, work and leisure activities for as long as possible. When it is no longer possible to maintain their usual activities, occupational therapists support individuals in changing and adapting their relationship with their physical and social environment to develop new valued activities and roles. OBJECTIVES: To compare the efficacy and effectiveness of occupational therapy with placebo or no interventions (control group) in patients with Parkinson's disease. SEARCH STRATEGY: Relevant trials were identified by electronic searches of MEDLINE, EMBASE, CINAHL, ISI-SCI, AMED, MANTIS, REHABDATA, REHADAT, GEROLIT, Pascal, LILACS, MedCarib, JICST-EPlus, AIM, IMEMR, SIGLE, ISI-ISTP, DISSABS, Conference Papers Index, Aslib Index to Theses, the Cochrane Controlled Trials Register, the CentreWatch Clinical Trials listing service, the metaRegister of Controlled Trials, ClinicalTrials.gov, CRISP, PEDro, NIDRR and NRR; and the reference lists of identified studies and other reviews were examined. SELECTION CRITERIA: Only randomised controlled trials (RCT) were included, however those trials that allowed quasi-random methods of allocation were allowed. DATA COLLECTION AND ANALYSIS: Data was abstracted independently by two authors and differences were settled by discussion. MAIN RESULTS: Two trials were identified with 84 patients in total. Although both trials reported a positive effect from occupational therapy, all of the improvements were small. The trials did not have adequate placebo treatments, used small numbers of patients and the method of randomisation and concealment of allocation was not specified in one trial. These methodological problems could potentially lead to bias from a number of sources reducing the strength of the studies further. REVIEWER'S CONCLUSIONS: Considering the significant methodological flaws in the studies, the small number of patients examined, and the possibility of publication bias, there is insufficient evidence to support or refute the efficacy of occupational therapy in Parkinson's disease. There does not appear to be a consensus as to the best practice in occupational therapy when treating people with Parkinson's disease. A survey of therapists is needed to determine what methods of occupational therapy are currently being used by therapists to treat Parkinson's disease, and whether there is a consensus as to 'best-practice'. Large well designed placebo-controlled RCTs are needed to demonstrate occupational therapy's effectiveness in Parkinson's disease. Outcome measures with particular relevance to patients, carers, occupational therapists and physicians should be chosen and the patients monitored for at least six months to determine the duration of benefit. The trials should be reported using CONSORT guidelines.

A comparison of physiotherapy techniques for patients with Parkinson's disease.

BACKGROUND: Despite optimal medical and surgical therapies for Parkinson's disease, patients develop progressive disability. The role of the physiotherapist is to maximise functional ability and minimise secondary complications through movement rehabilitation within a context of education and support for the whole person. What form of physiotherapy is most effective in the treatment of Parkinson's disease remains unclear. OBJECTIVES: 1. To compare the efficacy and effectiveness of novel physiotherapy techniques versus 'standard' physiotherapy in patients with Parkinson's disease. Standard physiotherapy is defined as the type of therapy that the physiotherapist would usually use to treat Parkinson's disease. 2. To compare the efficacy and effectiveness of one physiotherapy technique versus a second form of physiotherapy. SEARCH STRATEGY: Relevant trials were identified by electronic searches of MEDLINE, EMBASE, CINAHL, ISI-SCI, AMED, MANTIS, REHABDATA, REHADAT, GEROLIT, Pascal, LILACS, MedCarib, JICST-EPlus, AIM, IMEMR, SIGLE, ISI-ISTP, DISSABS, Conference Papers Index, Aslib Index to Theses, the Cochrane Controlled Trials Register, the CentreWatch Clinical Trials listing service, the metaRegister of Controlled Trials, ClinicalTrials.gov, CRISP, PEDro, NIDRR and NRR; and examination of the reference lists of identified studies and other reviews. SELECTION CRITERIA: Only randomised controlled trials (RCT) were included. DATA COLLECTION AND ANALYSIS: Data was abstracted independently by KD and CEH and differences settled by discussion. MAIN RESULTS: Seven trials were identified with 142 patients. All used small numbers of patients and the method of randomisation and concealment of allocation was poor or not statedin all of the trials. These methodological problems could potentially lead to bias from a number of sources. The methods of physiotherapy varied so widely that the data could not be combined. REVIEWER'S CONCLUSIONS: Considering the small number of patients examined, the methodological flaws in many of the studies and the possibility of publication bias, there is insufficient evidence to support or refute the efficacy of any given form of physiotherapy over another in Parkinson's disease. Another Cochrane review, Physiotherapy for patients with Parkinson's Disease, found that there was insufficient evidence to support or refute the efficacy of physiotherapy compared to no physiotherapy in Parkinson's disease. A wide range of physiotherapy approaches were used in these studies and a survey of UK physiotherapists confirmed that they also use an eclectic combination of techniques in the treatment of Parkinson's disease (Plant 1999). Therefore a consensus must be found as to 'best practice' physiotherapy for Parkinson's disease. The efficacy of 'standard' physiotherapy should be proved first before examining variations in physiotherapy methods. Therefore large well designed randomised controlled trials are needed to judge the effect of physiotherapy in Parkinson's disease. After this large RCTs are needed to demonstrate the most effective form of physiotherapy in Parkinson's disease. Outcome measures with particular relevance to patients, carers, physiotherapists and physicians should be chosen and the patients monitored for at least 6 months to determine the duration of any effect. The trials should be reported according to CONSORT guidelines (CONSORT 1996).

Self-body split: issues of identity in physical recovery following a stroke.

PURPOSE: To explore the perceived life and identity changes described by individuals following a single stroke using a life narrative approach. METHOD: Individuals admitted to hospital with a stroke, no previous disability, returning home; took part in life narrative interviews in hospital, and six months and one year post-discharge. The Gross Motor subscale of the Rivermead Motor Assessment and Nottingham 10 point Activities of Daily Living Scale were completed. RESULTS: Eight stroke respondents (five male, three female; mean age 67 years (range 56-82). The one year mean motor score was 9 (range 7-11) and self-care score was 9 (range 7-10). All respondents described a fundamental change in their lives and identity. The main issue was a split between themselves and their body. In hospital their body appeared to become separate, precarious and perplexing. By one year the majority still found their body unreliable, and their physical ability influenced by the social setting. CONCLUSION: The new experience of a split between self and body appears to be the focus of life for at least a year. This study suggests that rehabilitation professionals should consider longer-term (although not necessarily intensive) physical activity programmes that address these psychological as well as neuromuscular changes.

What really matters to patients living with chronic obstructive pulmonary disease? An exploratory study.

There is limited published research into what really matters to people living with chronic obstructive pulmonary disease (COPD). Most previous research in this area focuses on the impact of the symptoms of COPD, rather than on the issues defined as important by patients themselves. This paper describes an exploratory study investigating what is most important to people living with COPD. A qualitative approach employing in-depth interviews with COPD patients was chosen. Thematic analysis was used to code and categorize data. Six patients with 'moderate' to 'very severe' COPD were recruited. They considered engagement in specific activities to be very important (walking, household maintenance and driving), even though these activities were mainly centred around the home environment, or within confined spaces, due to their physical limitations. This restriction led to feelings of social isolation that these patients tried to overcome through social participation (holidays, social interaction). People with COPD often experience physical restrictions, which can lead to reduced community mobility and social isolation. In this study, despite their physical limitations, these patients had a strong desire to participate and be engaged in various activities. The importance of enabling patients to 'participate' rather than just 'do' should be considered when planning and delivering patient-centred interventions across the whole spectrum of severity of COPD.

Change in identity and self-concept: a new theoretical approach to recovery following a stroke.

OBJECTIVE: To determine whether respondents reported a change in identity following stroke. DESIGN: A cross-sectional comparison study of perceived changes in the self-concept of stroke respondents and matched hospital volunteers. A questionnaire was administered to stroke respondents in their own homes and to hospital volunteers in their work setting. PARTICIPANTS: Twenty-six first-time stroke survivors who had no severe communication, cognitive or perceptual difficulties or previous physical disability, and who had returned home from hospital up to two years previously. The comparison group were 26 hospital volunteers matched for age, gender and the time from which past self-concept was considered. MAIN OUTCOME MEASURES: Included the Hospital Anxiety and Depression Scale, Frenchay Activity Index and the Head Injury Semantic Differential Scale to assess past and present self-concept. RESULTS: Overall, individuals described themselves in more negative terms than prior to their stroke. They saw themselves as less interested, capable and independent, (p < 0.001) and less in control, satisfied and active (p < 0.05). They still saw themselves as friendly, calm, caring, hopeful and talkative. The overall self-concept of the comparison group remained positive and stable over a comparable time period. CONCLUSIONS: The stroke respondents reported a negative sense of self, reduced social activity and psychological morbidity despite inpatient and outpatient rehabilitation. Individuals following stroke may settle for a restricted future because of their expectations of life with a disability. Clinicians need to be aware of the meaning of the stroke within the life of each individual.

Gatekeeping and legitimization: how informal carers' relationship with health care workers is revealed in their everyday interactions.

AIM(S) OF THE STUDY: This study explores the relationship between informal carers of older people, and health care workers within the context of a hospital ward. Through an analysis of their language-based encounters the purpose of the study was to identify the discursive processes involved in face-to-face informal carer-health care worker interactions, during the course of carers' visits to one elderly care rehabilitation hospital ward. DESIGN: An ethnomethodological research design, which encompassed the concerns of conversation analysis and the study of institutional interaction, was used. The study involved videotape recording informal carers naturally occurring spontaneous interactions with a range of health care workers on the ward. Data collection was carried out for between 1 and 3 hours, two to three times a week over a period of 3 months. The data comprised: 30 dyadic and group interactions involving 19 different carers and 25 different health care workers, including nurses (qualified and unqualified), physiotherapists, occupational therapists, dieticians, ambulance personnel, housekeepers and nursing auxiliaries. Detailed transcriptions of the data were produced and analysis was undertaken using a modified conversation analysis approach. FINDINGS: Analysis revealed that a central aspect of the way the relationship between informal carers and health care workers is framed is by the way information and access to information is obtained. This paper examines some of the aspects of informal carer-health care worker discourse, which denote both parties as gatekeepers. In doing so it considers the roles that legitimatization of competence and knowledgeability have in facilitating informal carers interactions with health care workers. CONCLUSIONS: We conclude that the accomplishment of legitimacy is largely a collaborative undertaking on behalf of health care workers and informal carers. The implications of these findings for carers, health care workers, policy and future research are discussed.