Patient and Caregiver Experience of Hospital Discharge from an Acute Medicine Unit via the Discharge Lounge: A Qualitative Case Study.

Discharge lounges enable the swift movement of patients imminently awaiting hospital discharge, to free beds without delay. This Qualitative Yin-Style Case Study describes the patient and caregivers experience of transition from an Acute Medicine Unit (AMU) to a discharge lounge and staff perspectives, as organisers of this process. Audiorecorded, interviews and focus groups were undertaken. Data were analysed using Framework Analysis. Lack of patientcenteredness in moving patients to the discharge lounge emerged with three themes: 'moving the problem'; 'being moved' and 'feeling removed'. Patients were transferred at accelerated speed. Communications between staff, patients and carers were abruptly curtailed. Patient transfer from AMU to a discharge lounge is a transitional stage in the acute discharge process and must be adequately communicated.

Randomised feasibility study to compare the use of Therabite® with wooden spatulas to relieve and prevent trismus in patients with cancer of the head and neck.

Our aim was to compare the efficacy of the Therabite® jaw motion rehabilitation system (Atos Medical) with that of wooden spatulas to relieve and prevent trismus in patients who have had radiotherapy for stage three and four oral and oropharyngeal cancer. Secondary aims were to assess the feasibility and the impact of exercise on health-related quality of life (QoL), and the use of health services after treatment. We designed a randomised, open-label, controlled, three-centre feasibility study to compare the effectiveness and cost of the Therabite® and wooden spatulas. We studied compliance with exercises and health-related QoL, assessed cost using three health economics measures, and conducted semistructured interviews with patients. Patients were randomised into two groups: the Therabite® group (n=37) and the wooden spatula group (n=34). All patients had some sense of jaw tightening before the study started. Mean mouth opening after six months increased in both groups, but the difference between the groups was not significant (p=0.39). Completion rates for the three economic measures were good. There was no significant difference between the two groups in frequency of contact with care services or in QoL. Exercises during and after radiotherapy can ameliorate trismus in patients with stage three and four oral and oropharygeal cancers, but differences between groups in efficacy, compliance, QoL, or use of hospital or community health services, were not significant.

Parents' experiences of caring for a child with a cleft lip and/or palate: a review of the literature.

This review brings together for the first time the existing quantitative and qualitative research evidence about the experiences of parents caring for a child with a cleft. It summarizes salient themes on the emotional, social and service-related experiences of parents and critiques the literature to date, comparing it with wider, selected literature from the field of children's long-term conditions, including disability. The review suggests that there are similarities and differences between the literatures, in terms of research focus and approach. Similarities are found across children's conditions in the perspectives of parents on emotional, social and service-related aspects, although much of the cleft literature is focused on the early stages of children's lives. However, the quality of cleft research to date about parents' experiences has also been variable, with a narrow emphasis on cross-sectional, deficit-orientated psychological approaches focused mainly on mothers. Despite a substantial literature, little qualitative research has examined parents' perspectives in-depth, particularly about their child's treatment journey. This contrasts with the wider children's literature, which has traditionally drawn not only on psychological approaches but also on the broader perspectives of sociology, social policy, nursing and health services research, using both qualitative and quantitative methods, often in integrated ways. Such approaches have been able to highlight a greater range of experiences from both mothers and fathers, about caring for a child with a long-term condition and views about treatment. The review identifies a lack of comparable research in the cleft field to examine parents' experiences and needs at different stages of their children's lives. Above all, research is needed to investigate how both mothers and fathers might experience the long-term and complex treatment journey as children become older and to elicit their views about decision making for cleft treatments, particularly elective surgeries.

Exploring the needs, concerns and behaviours of people with existing respiratory conditions in relation to the H1N1 'swine influenza' pandemic: a multicentre survey and qualitative study.

BACKGROUND: People with respiratory conditions are a 'high-risk' group for H1N1 pandemic swine influenza ('swine flu'), hence they and their families may have information needs, worries and concerns regarding the condition. Health-related behaviours, including vaccination, are recommended during the pandemic; understanding uptake of these is important. OBJECTIVES: To explore and compare information needs, worries and concerns, and health-related behaviours regarding swine flu in people with respiratory conditions and their family members. METHODS: Mixed-methods study - cross-sectional survey (253 patients, 101 family members); one-to-one interviews (13 patients, seven family members) and focus groups (n = three groups, 30 participants). Data collected October 2009-January 2010 from hospital chest clinics (n = 7) and patient support groups (n = 10) in North West England. RESULTS: Most patients (P) and family members (FM) wanted more information (n = 158, 62.5% P; n = 55, 54.4% FM), but few felt completely uninformed (n = 15, 5.9% P; n = 3, 3.0% FM). Most had already received information about swine flu (n = 187, 73.9% P; n = 78, 77.2% FM), mainly via a leaflet delivered to their home (n = 125, 49.4% P; n = 55, 54.5% FM). Information received was considered helpful (n = 154, 60.9% P; n = 77, 72.6% FM), but many wanted more condition-specific information (n = 141, 55.7% P; n = 60, 59.4% FM). More patients were worried (n = 147, 58.3%) than not worried (n = 99, 39.3%) about swine flu. FM were less often concerned about personal risk (n = 47, 46.6% worried) than about risk to patients (n = 76, 77.6%). Two-thirds (n = 161, 63.6% P; 65, 65.6% FM) incorrectly believed patients had increased risk of developing swine flu, but most (n = 204, 81.0% P; 89, 89.9% FM) correctly identified patients' greater risk of developing complications. Commonly adopted preventative measures were more frequent hand-washing (107, 42.8% P; 38, 37.6% FM) and greater use of sanitising hand gel (n = 100, 40.5% P; 37, 36.6% FM). In total, 212 patients (83.8%) and 69 family members (68.3%) were very/fairly likely to take up swine flu vaccination. Qualitative data mirrored survey findings. CONCLUSIONS: Participants were generally well-informed about swine flu, but more targeted information would have been welcomed. Participants were not highly anxious about swine flu, but did recognise risks for patients. Behaviour change was modest, but in line with recommendations. Vaccination intent was high. STUDY REGISTRATION: The study has been registered as REC/IRAS (Ref 09/H1015/76) and NIHR CSP (Ref 32483).

Can lay people deliver asthma self-management education as effectively as primary care based practice nurses?

OBJECTIVES: To determine whether well trained lay people could deliver asthma self-management education with comparable outcomes to that achieved by primary care based practice nurses. DESIGN: Randomised equivalence trial. SETTING: 39 general practices in West London and North West England. PARTICIPANTS: 567 patients with asthma who were on regular maintenance therapy. 15 lay educators were recruited and trained to deliver asthma self-management education. INTERVENTION: An initial consultation of up to 45 min offered either by a lay educator or a practice based primary care nurse, followed by a second shorter face to face consultation and telephone follow-up for 1 year. MAIN OUTCOME MEASURES: Unscheduled need for healthcare. SECONDARY OUTCOME MEASURES: Patient satisfaction and need for courses of oral steroids. RESULTS: 567 patients were randomised to care by a nurse (n = 287) or a lay educator (n = 280) and 146 and 171, respectively, attended the first face to face educational session. During the first two consultations, management changes were made in 35/146 patients seen by a practice nurse (24.0%) and in 56/171 patients (32.7%) seen by a lay educator. For 418/567 patients (73.7%), we have 1 year data on use of unscheduled healthcare. Under an intention to treat approach, 61/205 patients (29.8%) in the nurse led group required unscheduled care compared with 65/213 (30.5%) in the lay led group (90% CI for difference -8.1% to 6.6%; 95% CI for difference -9.5% to 8.0%). The 90% CI contained the predetermined equivalence region (-5% to +5%) giving an inconclusive result regarding the equivalence of the two approaches. Despite the fact that all patients had been prescribed regular maintenance therapy, 122/418 patients (29.2%) required courses of steroid tablets during the course of 1 year. Patient satisfaction following the initial face to face consultation was similar in both groups. CONCLUSIONS: It is possible to recruit and train lay educators to deliver a discrete area of respiratory care, with comparable outcomes to those seen by nurses.

Lay educators in asthma self management: reflections on their training and experiences.

OBJECTIVE: To capture the experiences and feelings of lay educators in an asthma self-management programme to aid understanding of optimal methods of recruitment, training and retention, and to enhance their value within the programme. METHODS: A multi site randomised controlled equivalence trial of asthma educators and primary care practice based nurses during which the educators were asked to keep a diary of their experience. A qualitative thematic analysis of these diaries was undertaken. RESULTS: Eight lay educators supplied diaries. From these diaries emerged personal reasons for involvement in the programme, constructive comments on the training programme, a need for preparation for the realities of clinical practice and significant ongoing support and training. CONCLUSION: Lay educators are a potential resource for giving self-management education to patients with long-term conditions such as asthma. However, there are some considerations that need to be taken into account regarding contracts, retention and continual support. PRACTICE IMPLICATIONS: Lay educators need a flexible but comprehensive training programme, contracts, on site mentoring and support. They seem most contented when welcomed by health professionals and treated as part of the team.

The information needs and preferred roles in treatment decision-making of parents caring for infants with atopic dermatitis: a qualitative study.

BACKGROUND: Information needs and preferences in treatment decision-making of parents caring for infants with atopic dermatitis (AD) are unknown, despite emphasis on quality information-giving and involvement of health-care users in treatment decisions. OBJECTIVE: To explore information needs and decisional role-preferences of parents caring for infants with AD. METHODS: Qualitative study. Purposive sample: 31 parents caring for infants with AD. Tape-recorded focussed conversation-style interviews. Interview topic-guide literature-derived. Control Preferences Scale (5 sort-card vignettes 'very active' to 'very passive' role) adapted for use with parents; used to facilitate discussion. Thematic analysis of verbatim transcripts. RESULTS: Nine core information needs identified: AD-causation, role of diet, medication-use, medication-side-effects, exacerbating factors, new/alternative medication, nonpharmacological treatments, AD-prevention, AD and other atopic conditions. Parents desired verbal and written information. Many felt their baby's condition was not taken seriously, leading to delayed diagnosis and treatment. They had to be more active than they wished to obtain information/treatment. Parents preferred sharing decisions with their doctor. CONCLUSIONS: Parents caring for infants with AD have clearly defined, unmet information needs, forcing them into more active roles in the treatment decision-making process than they desire. The study-findings may inform the development of written information specifically for these parents and improve partnership during consultations.

Involvement in treatment decisions: what do adults with asthma want and what do they get? Results of a cross sectional survey.

BACKGROUND: Current healthcare policy advocates patient participation in treatment decision making. However, in asthma there is little evidence regarding patients' views on such involvement. This study explored the preferred and perceived level of involvement in treatment decisions, rationales for role preference, perceived facilitators of/barriers to involvement, and the interrelationship of role preference and demographic variables in a sample of patients with asthma. METHODS: A cross sectional survey was performed of 230 adults with clinician diagnosed asthma from 10 primary care sites and one specialist respiratory centre in north-west England. Preferred role in treatment decisions was assessed using the Control Preferences Scale. RESULTS: Fifty five (23.9%) preferred an active role, 82 (35.7%) a collaborative role, and 93 (40.4%) a passive role; 19 (8.2%) perceived their role as active compared with 45 (19.6%) collaborative and 166 (72.2%) passive. Only 33.5% (n = 77) of respondents attained their most preferred role; 55.2% (n = 127) were less involved than they preferred. Patient related, professional related, and organisational factors, especially quality and duration of consultations, facilitated or hampered involvement. Role preferences were not strongly associated with demographic variables or asthma severity. CONCLUSIONS: This study in patients with asthma highlights the fact that there is a need for professional and patient education regarding partnership working, skilful communication, and innovative approaches to service delivery.

Exploring dental patients' preferred roles in treatment decision-making - a novel approach.

AIMS: To assess the transferability of the Control Preferences Scale to dental settings and to explore patients' preferred and perceived roles in dental treatment decision-making. SETTING AND PARTICIPANTS: A convenience sample of 40 patients, 20 recruited from the University Dental Hospital of Manchester and 20 from a general dental practice in Cheshire. METHODS: A cross-sectional survey, using the Control Preferences Scale, a set of sort cards outlining five decisional roles (active, semi-active, collaborative, semi-passive, passive), slightly modified for use in dental settings. A second set of cards was used to identify perceived decisional role. Rationale for choice of preferred role was recorded verbatim. RESULTS: The Control Preferences Scale was found to be transferable to dental settings. All patients in the sample had identifiable preferences regarding their role in treatment decision-making. A collaborative decisional role, with patient and dentist equally sharing responsibility for decision-making, was most popular at both sites. However, patients at both sites typically perceived themselves as attaining a passive role in treatment decisions. Lack of knowledge about dentistry and trust in the dentist were reported contributors to a passive decisional role preference, whilst those with more active role preferences gave rationales consistent with a consumerist stance. CONCLUSIONS: This exploratory study's findings suggest that dental patients have distinct preferences in relation to treatment decision-making role and that these may not always be met during consultations with their dentist. The Control Preferences Scale appears to be appropriate for use in dental settings.

A descriptive study of meaning of illness in chronic renal disease.

AIM: To explore the subjective meaning of illness in a sample of renal patients. BACKGROUND: Patients' illness representations, such as the meaning they attach to illness, may affect their coping and adaptation. Improved understanding in this area may therefore benefit patient care. Meaning of illness has not previously been explored in renal disease. DESIGN AND METHODS: Cross-sectional survey (n=405) in a single regional renal unit in the North of England. Ethical approval was obtained and patients gave written consent. The instrument used was an eight-item schema, based on the work of Lipowski (1970, Psychiatry in Medicine 1, 91-102). Field notes regarding rationale for choice were recorded concurrently, then content analysed to enable identification of themes. The chi-square test (significance level P < 0.05) was used to analyse differences in selected meaning in older and younger patients; males and females; and patient groups (predialysis, haemodialysis and transplant). FINDINGS: 'Challenge' was selected by most patients (n=253, 62.5%), with similar results in all three patient groups. Slightly more older than younger patients selected 'challenge', although the difference was not statistically significant and older patients more commonly had a fatalistic interpretation of the option. More men selected 'challenge' than women. Those selecting 'challenge' and 'value' appeared to have a more positive outlook than other patients. CONCLUSIONS: Patients had identifiable meanings for their illness, and these may be associated with their response to renal disease. The schema appeared to be comprehensive, but is in need of further refinement. Consideration of the possible influence of social desirability is necessary.

Patient roles in decision-making.

Participation by patients in making decisions about treatment is widely encouraged. However, there is little evidence from patients about their preferences with respect to this. This study used a card-sort approach to explore the actual and preferred participation in making decisions about treatment among a sample of 405 patients with renal disease. The study identified that the majority preferred to adopt a passive role in decision-making. The findings highlight the need for nurses to identify individual patient preferences with respect to participation and to explore why a person may choose to adopt a particular decision-making role.

Evaluating computer assisted learning for renal patients.

Healthcare professionals have become increasingly concerned with evaluating the impact of their interventions. Consumerism, quality initiatives and financial constraints have contributed in large measure to this concern. Consequently, the focus of many studies which involve the introduction of new and untried techniques is often on demonstrating their relative usefulness. This study sought to evaluate the usefulness and acceptability of computer assisted learning (CAL) for use in the education of renal patients on continuous ambulatory peritoneal dialysis. However, several problems were encountered which limited or impaired the evaluation process. We describe these problems and use them to illustrate the difficulties inherent in evaluative research.

Nurses' opinions of the introduction of computer-assisted learning for use in patient education.

Computers have only recently begun to find a place in the everyday work of health care staff. The use of computer-assisted learning (CAL) in patient education is in its infancy. However, the medium appears to offer several advantages to patients. The successful integration of the medium into clinical practice requires the acceptance and support of staff members. Little research exists to date which examines staff responses to the introduction of CAL into their workplace. This small study (n = 14) aims to explore the reactions of staff to the introduction of an experimental CAL package for use in the education of renal patients on continuous ambulatory peritoneal dialysis (CAPD). The opinions of staff members to CAL are probed and their views ascertained regarding the usefulness of CAL to both staff and patients. Results suggest that, despite their initial reservations about CAL, staff were generally positive about the medium.

The development and evaluation of computer assisted learning for patients on continuous ambulatory peritoneal dialysis.

This article briefly describes the development and evaluation of six computer assisted learning (CAL) packages for use with renal patients on Continuous Ambulatory Peritoneal Dialysis (CAPD). The factors influencing the choice of CAL as the teaching medium are detailed, and some of the difficulties facing nurses involved in patient education highlighted. An outline of the development of program content is given and the methods to be used in the evaluation are briefly explored. Since data collection has only recently commenced, no conclusions can be drawn. However, the authors' anticipation that the study may help to make inroads into exploring the acceptability of CAL to patients and patient educators is expressed.

Rethinking patient education.

The aim of this paper is to critically examine and challenge some of the assumptions which underpin the research and non-research based literature on patient education. Doubts are expressed concerning the transferability of theories of adult learning to patient education; and concern is expressed over the imbalance in the literature where emphasis is placed on the psychological benefits of teaching, rather than physical outcomes. In the light of the available evidence which suggests that nurses are not 'good patient teachers' the case is made to support the suggestion that patient education should become the responsibility of specialist nurses. In addition, computer-assisted learning (CAL) is proffered as the solution to a number of the problems facing patient educators. CAL is seen as a means of empowering the patient, rather than the nurse to take control, and this is viewed as a positive move in the direction of self-care. The paper concludes by suggesting that CAL might be used with good effect by patients with particular learning difficulties; for example the blind or partially sighted, and people who are illiterate or have a low reading ability.