Impact of a clinical pathway on end-of-life care following stroke: a mixed methods study.

BACKGROUND: Death after stroke is common, but little is known about end-of-life care processes in acute stroke units. AIM: (1) To identify family and health-care worker perceptions of an end-of-life care pathway for patients who die after acute stroke. (2) To determine whether patients with fatal stroke judged to require an end-of-life care pathway differ from patients with fatal stroke who die without introduction of such a pathway. DESIGN: Mixed methods study integrating qualitative semistructured interviews with quantitative casenote review. SETTING/PARTICIPANTS: In four Scottish acute stroke units, 17 relatives of deceased stroke patients and 23 health-care professionals were interviewed. Thematic analysis used a modified grounded theory approach. Multivariate analysis was performed on casenote data, identified prospectively from 100 consecutive stroke deaths. RESULTS: Deciding pathway use was a consultative process, occurring within normal working hours. Families were commonly involved and could veto or trigger aspects of end-of-life care. Families sometimes felt responsible for decisions such as pathway use, resuscitation or hydration. Families were often led to expect their relative's death early in the post-stroke period. Prolonged dying processes, particularly where patients had severe dysphagia, added to distress for families. Preferences for place of care were discussed infrequently. No link was found between demographic or clinical characteristics and care pathway use. CONCLUSION: Distressing stroke-related clinical problems dominated relatives' concerns rather than use of the end-of-life care pathway. At times, relatives felt primarily responsible for key aspects of decision-making. Relatives often felt unprepared for a prolonged dying process after stroke, particularly where patients had persistent major swallowing difficulties.

Urinary catheterization in acute stroke: clinical realities. A mixed methods study.

OBJECTIVE: To determine what influences the decision to insert an indwelling urinary catheter in acute stroke patients. DESIGN: A prospective casenote review and semi-structured interviews were conducted and corporate catheterization policy in the study sites was investigated. SETTING: Three teaching hospitals, typical of stroke service provision in most developed countries. SUBJECTS: Casenotes from 70 consecutive acute stroke admissions; 50 doctors, nurses and physiotherapists working in acute stroke units and medical receiving units. RESULTS: Stroke patients were catheterized for output monitoring, relief of urinary retention or, especially for older patients, continence-related issues. Half of all catheterizations occurred in acute stroke units. Continence and catheterization were considered less important than other aspects of acute stroke care. No catheterization policy or standardized continence assessment tool was in use. Documentation was often lacking. Patients and relatives were not fully involved in the decision to catheterize. Continence assessment and catheterization practices varied widely. Complex unwritten rules relating to gender proliferated. Such rules demonstrated heuristic problem-solving could potentially cause conflict. Decisions to catheterize 'belonged' to doctors or nurses depending upon clinical indications. Clinical assessment and specialist referrals were often seen as 'not my job'. CONCLUSIONS: Clear corporate policy on catheterization is required to direct practice. Use of standardized continence assessment tools is recommended to set and monitor standards of care. Documentation relating to urinary catheterization needs to improve.

Non-pharmacological interventions for caregivers of stroke survivors.

BACKGROUND: A substantial component of care is provided to stroke survivors by informal caregivers. However, providing such care is often a new and challenging experience and has been linked to a number of adverse outcomes. A range of interventions targeted towards stroke survivors and their family or other informal caregivers have been tested in randomised controlled trials (RCTs).  OBJECTIVES: To evaluate the effect of interventions targeted towards informal caregivers of stroke survivors or targeted towards informal caregivers and the care recipient (the stroke survivor). SEARCH STRATEGY: We searched the Cochrane Stroke Group Trials Register (March 2011), CENTRAL (The Cochrane Library Issue 2010, Issue 4), MEDLINE (1950 to August 2010), EMBASE (1980 to December 2010), CINAHL (1982 to August 2010), AMED (1985 to August 2010), PsycINFO (1967 to August 2010) and 11 additional databases. In an effort to identify further published, unpublished and ongoing studies, we searched conference proceedings and trials registers, scanned reference lists of relevant articles and contacted authors and researchers. There were no language restrictions. SELECTION CRITERIA: We included RCTs if they evaluated the effect of non-pharmacological interventions (compared with no care or routine care) on informal caregivers of stroke survivors. We included trials of interventions delivered to stroke survivors and informal caregivers only if the stroke survivor and informal caregiver were randomised as a dyad. We excluded studies which included stroke survivors and caregivers if the stroke survivors were the primary target of the intervention. DATA COLLECTION AND ANALYSIS: Two review authors selected studies for inclusion, independently extracted data and assessed methodological quality. We sought original data from trialists. We categorised interventions into three groups: support and information, teaching procedural knowledge/vocational training type interventions, and psycho-educational type interventions. The primary outcome was caregivers' stress or strain. We resolved disagreements by consensus. MAIN RESULTS: Eight studies, including a total of 1007 participants, met our inclusion criteria. We did not pool the results of all the studies because of substantial methodological, statistical and clinical heterogeneity. For caregivers' stress or strain we found no significant results within categories of intervention, with the exception of one single-centre study examining the effects of a 'vocational training' type intervention which found a mean difference between the intervention and comparator group at the end of scheduled follow-up of -8.67 (95% confidence interval -11.30 to -6.04, P < 0.001) in favour of the 'teaching procedural knowledge' type intervention group. AUTHORS' CONCLUSIONS: It was not possible to carry out a meta-analysis of the evidence from RCTs because of methodological, clinical and statistical heterogeneity. One limitation across all studies was the lack of a description of important characteristics that define the informal caregiver population. However, 'vocational educational' type interventions delivered to caregivers prior to the stroke survivor's discharge from hospital appear to be the most promising intervention. However, this is based on the results from one, small, single-centre study.  

Interventions for post-stroke fatigue.

BACKGROUND: Fatigue after stroke is common and distressing to patients. The best way to treat this fatigue is uncertain. Theoretically, several different interventions may be of benefit. OBJECTIVES: To determine whether any treatment for fatigue after stroke reduces the proportion of patients with fatigue, or fatigue severity, or both, and to determine the effect of treatment on health-related quality of life, disability, dependency and death, and whether such treatments are cost effective. SEARCH STRATEGY: We searched the Cochrane Stroke Group Trials Register (last searched January 2008), the Cochrane Central Register of Controlled Trials (The Cochrane Library Issue 1, 2008), MEDLINE (1950 to February 2008), EMBASE (1980 to February 2008), CINAHL (1982 to February 2008), AMED (1985 to February 2008), PsycINFO (1967 to February 2008), Digital Dissertations (1861 to March 2008), PsycBITE (searched March 2008), PEDro (searched March 2008), and British Nursing Index (1985 to March 2008). We also searched four trials registries, scanned reference lists, performed citation tracking of included trials, and contacted experts. SELECTION CRITERIA: The review author who performed the searches scrutinised all titles and abstracts, excluded irrelevant references, and obtained references for potentially relevant studies. A second review author independently scrutinised potentially relevant studies to determine whether they fulfilled inclusion criteria. We included randomised controlled trials of any intervention in patients with stroke where fatigue was a primary or secondary endpoint. DATA COLLECTION AND ANALYSIS: The two review authors who scrutinised references independently extracted data. We performed a narrative review; we had intended to perform a meta-analysis but this was not possible as the interventions were too diverse for data to be combined. MAIN RESULTS: We identified three trials. One randomised 83 patients with emotional disturbance after stroke to fluoxetine or placebo. After correcting for differences in fatigue severity at baseline, there was no significant difference in fatigue between groups at follow up. The second trial randomised 31 women with subarachnoid haemorrhage to tirilazad or placebo, of whom 18 were available for follow up. There was no difference in fatigue between the two groups. The third trial investigated a chronic disease self-management programme in 1150 patients with chronic diseases, of whom 125 had had a stroke. There was no difference in fatigue at follow up between the treatment and control in the subgroup with stroke. AUTHORS' CONCLUSIONS: There is insufficient evidence available to guide the management of fatigue after stroke. Further trials are required.

Stroke research questions: a nursing perspective.

BACKGROUND: stroke is a national research priority. However, in the literature there is still minimal systematic investigation of stroke nursing - especially practice. The aim of this study was to explore stroke nurses' research priorities through a series of focus groups. METHOD: the study was qualitative and involved focus groups (n = 7) with registered nurses working in stroke care settings and who were members of the Scottish Stroke Nurses Forum. Data were analysed to identify conceptual categories, which were found to relate to the categories defined by Kirkevold (1997) and Booth (2001). RESULTS: five priority areas for stroke nursing were described: preventive/conserving; supporting/consoling; restorative; integrative; and service structure/systems. CONCLUSION: by consulting stroke nurses it can be ensured that future research truly reflects the nature of nursing care and is of particular relevance to stroke nursing practice. The development of research evidence-base in stroke nursing will lead to increased knowledge, a better quality of care and ultimately better outcomes for patients.

Cytotoxic chemotherapy for incurable colorectal cancer: living with a PICC-line.

AIMS: (i) To determine which aspects of living with a peripherally inserted central catheter (PICC) line cause Modified de Gramont (MdG) patients most difficulty. (ii) To explore MdG patients' views of the PICC-line experience. (iii) To determine if patients view PICC-lines as a benefit or a burden when receiving ambulatory MdG chemotherapy. DESIGN: A two-stage, descriptive study. METHODS: Phase 1 comprised semi-structured interviews. Phase 2 surveyed the MdG population. Phase 1 interview data informed the Phase 2 questionnaire. The setting was a West of Scotland Cancer Care Centre and the sample was: Phase 1, a convenience sample of 10 MdG patients; Phase 2, 62 consecutive patients. RESULTS: A response rate of 93.9% for Phase 2. The majority of PICC-line patients held favourable views towards having a PICC-line and adapted well with minimal disruption to daily life. Concerns were evident regarding coping at home with a PICC-line, chemotherapy spillage, dealing with complex information and the responsibility of patients/carers regarding PICC-line management. Patients preferred ambulatory chemotherapy to in-patient treatment. CONCLUSIONS: PICC-lines should be considered for more chemotherapy patients but service development is necessary to ensure individual needs are addressed. RELEVANCE TO CLINICAL PRACTICE: Contributes to the PICC-line literature by providing a national patient perspective on a range of daily living activities (DLAs). PICC-line patients prefer out-patient ambulatory chemotherapy rather than in-patient treatment. The longer a patient has a PICC-line, the more able they are to manage activities such as dressing. Concerns remain over chemotherapy spillage, partner/carer responsibility for PICC-line maintenance and the proper balance between required information and what the patient wants to know.

The evidence-base for stroke education in care homes.

RESEARCH QUESTIONS: 1. What are registered care home nurses' educational priorities regarding stroke care? 2. What are senior care home assistants' educational priorities regarding stroke care? 3. How do care home nurses conceive stroke care will be delivered in 2010? STUDY DESIGN: This was a 2-year study using focus groups, stroke guidelines, professional recommendations and stroke literature for the development of a questionnaire survey for data collection. Workshops provided study feedback to participants. Data were collected in 2005-2006. STUDY SITE: Greater Glasgow NHS Health Board. POPULATION AND SAMPLE: A stratified random selection of 16 private, 3 voluntary and 6 NHS continuing care homes from which a sample of 115 trained nurses and 19 senior care assistants was drawn. RESULTS: The overall response rate for care home nurses was 64.3% and for senior care assistants, 73.6%. Both care home nurses and senior care assistants preferred accredited stroke education. Care home nurses wanted more training in stroke assessment, rehabilitation and acute interventions whereas senior care assistants wanted more in managing depression, general stroke information and communicating with dysphasic residents. Senior care assistants needed more information on multidisciplinary team working while care home nurses were more concerned with ethical decision-making, accountability and goal setting. CONCLUSIONS: Care home staff need and want more stroke training. They are clear that stroke education should be to the benefit of their resident population. Guidelines on stroke care should be developed for care homes and these should incorporate support for continuing professional learning in relation to the resident who has had a stroke.

The interaction between policy and education using stroke as an example.

This paper discusses the interaction between healthcare policy at the European, UK and Scottish levels and the funding of education that underpins specific health policy priorities. Stroke is used throughout to illustrate the relationship between a designated European and UK health priority and the translation of that priority into clinical delivery. The necessity to build a responsive and sustainable culture to address the healthcare education that underpins changing healthcare policies is emphasized.

Stroke education for healthcare professionals: making it fit for purpose.

TITLE: Stroke education for healthcare professionals: Making it fit for purpose. RESEARCH QUESTIONS: 1. What are healthcare professionals' (HCPs) educational priorities regarding stroke care? 2. Do stroke care priorities vary across the primary and secondary sectors? 3. How do HCPs conceive stroke care will be delivered in 2010? STUDY DESIGN: This was a two-year study using focus groups and interviews for instrument development, questionnaires for data collection and workshops to provide study feedback. Data were collected in 2005-06. STUDY SITE: One Scottish health board. INCLUSION CRITERIA: All National Health Service healthcare professionals working wherever stroke care occurred. POPULATION AND SAMPLE: Participants were drawn from 4 university teaching hospitals, 2 community hospitals, 1 geriatric medicine day hospital, 48 general practices (GPs), 12 care homes and 15 community teams. The sample comprised 155 doctors, 313 nurses, 133 therapists (physiotherapists, occupational therapists, speech and language therapists), and 29 'other HCPs' (14 dieticians, 7 pharmacists, 2 podiatrists and 6 psychologists). RESULTS: HCPs prefer face-to-face, accredited education but blended approaches are required that accommodate uni- and multidisciplinary demands. Doctors and nurses are more inclined towards discipline-specific training compared to therapists and other healthcare professionals (HCPs). HCPs in primary care and stroke units want more information on the social impact of stroke while those working in stroke units in particular are concerned with leadership in the multidisciplinary team. Nurses are the most interested in teaching patients and carers. CONCLUSIONS: Stroke requires more specialist stroke staff, the upskilling of current staff and a national education pathway given that stroke care is most effectively managed by specialists with specific clinical skills. The current government push towards a flexible workforce is welcome but should be educationally-sound and recognise the career aspirations of healthcare professionals.

Early mobilization of acute stroke patients.

OBJECTIVE: To examine the early mobilization of acute stroke patients. DESIGN: Postal survey. SETTING: Thirteen health boards in Scotland. PARTICIPANTS: Ninety-nine health professionals of whom 39 were doctors, 39 nurses and 21 physiotherapists. RESULTS: There was a lack of understanding and agreement across the three professions in terms of what was meant by 'early mobilization'. Further, the duration, frequency, intensity, risk/benefits and activities associated with early mobilization are undescribed despite clinical guidelines urging its use. Multi-disciplinary decision making regarding early mobilization was not self-evident. CONCLUSIONS: (i) An evidence-base for early mobilization is required along with agreement on what physiological monitoring should be undertaken while early mobilization is on going; (ii) Health professionals need a greater awareness of the evidence linking stroke complications with patient immobilization and in particular in relation to pressure sores, painful shoulder and falls; (iii) The clinical decision to mobilize an acute stroke patient early should be made explicitly within a multi-disciplinary acute stroke team; (iv) There is an absolute need for further research into early mobilization in terms of intensity, duration, frequency, risks and benefits in relations to types of stroke of early mobilization. RELEVANCE TO CLINICAL PRACTICE: Early mobilization in acute stroke care is recommended in a range of European, American and UK policy guidelines as a strategy to minimize or prevent complications. However the evidence-base to support early mobilization in acute stroke is missing. Health professionals require a research-based approach in order to deliver safe and effective early mobilization to acute stroke patients.

Nurses' and patients' perceptions of expert palliative nursing care.

AIM: This paper reports a study of the perceptions of patients and nurses of palliative care and, in particular, the concept of the expert palliative nurse. BACKGROUND: Palliative care is a growing specialty and is practised globally. There is, however, limited information on patients' views about palliative care. While the idea of expertise in nursing is not new, few studies have explored the concept of the expert nurse in palliative care. Some evidence exists on palliative nurses' perceptions of their care, that it is supportive and involves maintaining therapeutic relationships with patients. Facing a terminal illness has been identified as a stressful and fearful experience that affects all aspects of life. It has also been revealed that dying patients may have unmet care needs, mainly in the areas of pain and symptom control, emotional support, and spending time alone. METHODS: A phenomenological study was carried out, using in-depth interviews and thematic content analysis. A convenience sample of 22 Registered Nurses and 22 dying patients was interviewed in 1996-1997. FINDINGS: Dying patients had a desire to maintain independence and remain in control. Palliative care nurses experienced both effective and ineffective interpersonal communication, the building of therapeutic relationships with dying patients and attempting to control patients' pain and distressing symptoms. Patients and nurses agreed that the two most important characteristics of an expert palliative nurse were interpersonal skills and qualities such as kindness, warmth, compassion and genuineness. CONCLUSION: Although the study was conducted in the United Kingdom, the findings have relevance for palliative care practice globally in terms of dependence, issues of patient choice, nurses being interpersonally skilled and building therapeutic relationships with patients.

Setting the agenda for neurological nursing: strategic directions.

This paper explores a range of issues related to neurological care. The scope and scale of neurological conditions is described in order to illustrate disparities in research funding and care delivery as compared with cancer and cardiovascular disease. Financial implications, ethical issues and health service development are outlined as a context for the state of the art of neurological nursing. Areas for potential neurological nursing research are identified. Finally, it is argued that policy and research must be linked if neurological care, research and education are to receive greater resource allocation.

Impact and influences on caregiver outcomes at one year post-stroke.

BACKGROUND AND PURPOSE: Four outcome measures of carer stress and coping at one year post-stroke were identified: carer general health, anxiety, depression and perception of stress. METHODS: Each outcome was assessed using valid and reliable instruments. In addition, we collected demographic data from both carers and patients which could reasonably be expected to influence carer stress and coping (e.g. age, deprivation levels) as well as information specific to the caring role. RESULTS: Carers were found to be more anxious than previously reported. Neither satisfaction with caring nor the adoption of helpful coping strategies were associated with positive carer outcomes but, nevertheless, carers were not reluctant to care. The SF-36 is a useful predictor of carer stress, in particular the vitality score. CONCLUSIONS: Patient data are not sufficient to predict carer general health at one year. At one year, both patients and carers are more anxious than depressed. And there may be a group of patients and carers who can be characterised as borderline anxious and/or depressed and who warrant specific attention to prevent carer burnout.

Informal carers' experience of caring for stroke survivors.

BACKGROUND: Stroke is the third most common cause of death in industrialized countries and a major cause of adult disability. However, the burden of caring for stroke survivors usually rests with family members who have neither chosen nor volunteered for the role of 'carer'. AIMS: This paper reports on a study which aimed to describe the experience of caring for a stroke survivor at one year after stroke in Scotland. STUDY DESIGN: Semi-structured, taped interviews were conducted with 90 carers of stroke survivors one year after stroke and the data analysed using NUD*IST. The interviews were part of a larger study, which included the administration of a range of valid and reliable multidimensional instruments to both carers and stroke survivors. The interview prompt schedule had been developed and tested in a previous study. FINDINGS: Although a medical emergency, stroke was not always diagnosed or treated as such by either the public or general practitioners. Initially most carers found that they lacked the knowledge and skills to care for the stroke survivor at home and so they had to learn how to obtain the information and assistance required. Carers had to adapt to the changes that stroke effected in the stroke survivor and seek alternative ways of securing the resources they needed for managing their lives. They thought that they had not been prepared adequately for the caring role or assessed satisfactorily in terms of whether they could manage given their skill level, age and/or health status. CONCLUSIONS: A public health campaign to educate and inform that stroke is a medical emergency is required if stroke disability is to be minimized. The use of new technologies should be considered in facilitating carers' learning how to care. There is a need to test alternative models of stroke follow-up in multi-centre studies that are holistic and place the carer-stroke survivor at the centre of care.

Health visiting and public health: back to our roots or a new branch?

The term 'public health nursing' has been introduced within the last decade into the UK without being adequately defined. In consequence, confusion has arisen over the use of the term 'public health' in relation to health visiting. It is not yet clear whether the introduction of the term 'public health nursing' into the UK is a positive step for health visiting, or if it threatens its core functions. The historical developments of the public health movement and health visiting were traced, in particular, the main strands that have led to current confusion over role identity. Analysis of the literature led to one suggestion as to the nature of the public health role for health visitors. This was examined within a social policy framework in order to understand its relevance to current NHS practice. Finally, the contemporary link between health visiting and public health is explored in order to assess whether the public health role represents a new development within health visiting, or an attempt to rediscover mainstream support from public health departments.