The use of metaphors by service users with diverse long-term conditions: a secondary qualitative data analysis.

Long-term conditions and accompanied co-morbidities now affect about a quarter of the UK population. Enabling patients and caregivers to communicate their experience of illness in their own words is vital to developing a shared understanding of the condition and its impact on patients' and caregivers' lives and in delivering person-centred care. Studies of patient language show how metaphors provide insight into the physical and emotional world of the patient, but such studies are often limited by their focus on a single illness. The authors of this study undertook a secondary qualitative data analysis of 25 interviews, comparing the metaphors used by patients and parents of patients with five longterm conditions. Analysis shows how similar metaphors can be used in empowering and disempowering ways as patients strive to accept illness in their daily lives and how metaphor use depends on the manifestation, diagnosis, and treatment of individual conditions. The study concludes with implications for how metaphorical expressions can be attended to by healthcare professionals as part of shared care planning.

'It was like an airbag, it cushioned the blow': A multi-site qualitative study of bereaved parents' experiences of using cooling facilities.

BACKGROUND: Evidence on the benefits to parents of spending time with their child in the hours after their death means this is now routine practice. UK children's hospices offer parents the opportunity to extend this period by using cooling facilities (i.e. cooled 'bedrooms'; cooling blankets/mattresses) to slow deterioration. AIM: To explore parents' experiences of using cooling facilities and beliefs about how it shaped experiences of the very early days of bereavement, and on-going grieving processes. METHODS: Multi-site study involving in-depth interviews with parents bereaved in the previous 3 years. Grief theories informed data analysis, which employed narrative and thematic approaches. Eight hospices supported recruitment. RESULTS: Twenty-two mothers and eight fathers were recruited, representing 25% of families approached. Duration of use of a cooling facility varied, as did the amount of time spent with the child. All parents treasured this period, valuing the way it eased separation from their child and gave some control over when this happened. They believed all bereaved parents should have the opportunity to use a cooling facility. Using a cooling facility supported parents' engagement with grief tasks including acceptance of loss, processing emotional pain and facing changes to their lives brought about by their child's death. Memories and mementoes created during this period served to support on-going connections with the child. Parents who used a cooling facility at a hospice reported benefits of the setting itself. CONCLUSIONS: As well as easing the very early days of loss, use of cooling facilities may influence longer-term bereavement outcomes.

Exploring the potential for social prescribing in pre-hospital emergency and urgent care: A qualitative study.

There is a sustained increase in demand for emergency and urgent care services in England. The NHS Long Term Plan aims to reduce the burden on emergency hospital services through changing how pre-hospital care operates, including increased delivery of urgent care. Given the recognised potential of social prescribing to address wider determinants of health and reduce costs in other settings, this study aimed to understand the role that social prescribing can play in pre-hospital emergency and urgent care from the perspectives of staff. Semi-structured interviews (n = 15) and a focus group (n = 3) were conducted with clinical staff (n = 14) and non-clinical health advisors (n = 4) from an English Ambulance Service covering emergency (999) and non-emergency (111) calls. Data were analysed using a pre-defined framework: awareness of social prescribing; potential cohorts suitable for social prescribing; and determinants of social prescribing. Awareness and knowledge of social prescribing was limited, though when social prescribing was explained to participants they almost universally recognised its benefits for their role. Social prescribing was considered to be most beneficial to those calling for reasons relating to mental health, loneliness or social isolation, in particular older people and frequent users of 999 and 111 services. Determinants of social prescribing were identified across the micro (patient and staff acceptability of social prescribing), meso (triage and referral pathways) and macro (commissioning and funding) levels of analysis. This is the first empirical study to explore social prescribing in pre-hospital emergency and urgent care services, which suggests that it has potential to improve quality of care at the point of people accessing these services. There is a pressing need to address the micro, macro and meso level determinants identified within this study, in order to support staff within pre-hospital emergency and urgent care services to socially prescribe.

Content Analysis of Patient Safety Incident Reports for Older Adult Patient Transfers, Handovers, and Discharges: Do They Serve Organizations, Staff, or Patients?

OBJECTIVE: The aim of the study was to analyze content of incident reports during patient transitions in the context of care of older people, cardiology, orthopedics, and stroke. METHODS: A structured search strategy identified incident reports involving patient transitions (March 2014-August 2014, January 2015-June 2015) within 2 National Health Service Trusts (in upper and lower quartiles of incident reports/100 admissions) in care of older people, cardiology, orthopedics, and stroke. Content analysis identified the following: incident classifications; active failures; latent conditions; patient/relative involvement; and evidence of individual or organizational learning. Reported harm was interpreted with reference to National Reporting and Learning System criteria. RESULTS: A total 278 incident reports were analyzed. Fourteen incident classifications were identified, with pressure ulcers the modal category (n = 101,36%), followed by falls (n = 32, 12%), medication (n = 31, 11%), and documentation (n = 29, 10%). Half (n = 139, 50%) of incident reports related to interunit/department/team transfers. Latent conditions were explicit in 33 (12%) reports; most frequently, these related to inadequate resources/staff and concomitant time pressures (n = 13). Patient/family involvement was explicit in 61 (22%) reports. Patient well-being was explicit in 24 (9%) reports. Individual and organizational learning was evident in 3% and 7% of reports, respectively. Reported harm was significantly lower than coder-interpreted harm (P < 0.0001). CONCLUSIONS: Incident report quality was suboptimal for individual and organizational learning. Underreporting level of harm suggests reporter bias, which requires reducing as much as practicable. System-level interventions are warranted to encourage use of staff reflective skills, emphasizing joint ownership of incidents. Co-producing incident reports with other clinicians involved in the transition and patients/relatives could optimize organizational learning.

Implementing a survey for patients to provide safety experience feedback following a care transition: a feasibility study.

BACKGROUND: The aim was to determine the feasibility of implementing a patient safety survey which measures patients' experiences of their own safety relating to a care transition. This included limited-efficacy testing, determining acceptability (to patients and staff), and investigating integration with existing systems and practices from the staff perspective. METHODS: Mixed methods study in 16 wards across four hospitals, from two English NHS Trusts and four clinical areas; cardiology, care of older people, orthopaedics, stroke. Limited-efficacy testing of a previously validated survey was conducted through collection of patient reports of safety experiences, and thematic comparison with staff safety incident reports. Patient acceptability was determined through analysis of survey response rates and semi-structured interviews. Staff acceptability and integration were investigated through analysis of survey distribution rates, semi-structured interviews and focus groups. RESULTS: Patients returned 366 valid surveys (16.4% response rate) from 2824 distributed surveys (25.1% distribution rate). Older age was a contributing factor to lower responses. Delays were the largest safety concern for patients. Staff incident report themes included five not present in the safety survey data (documentation, pressure ulcers, devices or equipment, staffing shortages, and patient actions). Patient interviews (n = 28) identified that providing feedback was acceptable, subject to certain conditions being met; cognitive-cultural (patient understanding and prioritisation of safety), structural-procedural (opportunities, means and ease of providing feedback without fear of reprisals), and learning and change (closure of the feedback loop). Staff (n = 21) valued patient feedback but barriers to collecting and using the feedback included resource limitations, staff turnover and reluctance to over-burden patients. CONCLUSIONS: Patients can provide meaningful feedback on their experiences and perceptions of safety in the context of care transitions. Providing this feedback was acceptable to some patients, subject to certain conditions being met. Safety experience feedback from patients was also acceptable to staff; quantitative data was perceived as useful to identify potential risks, and qualitative data informed types of changes required to improve care. However, patient feedback was not integrated into any quality improvement initiatives, suggesting there are still significant challenges to healthcare teams or organisations utilising patient feedback, particularly in relation to care transitions.

Patients' Conceptualizations of Responsibility for Healthcare: A Typology for Understanding Differing Attributions in the Context of Patient Safety.

This study examines how patients conceptualize "responsibility" for their healthcare and make sense of the complex boundaries between patient and professional roles. Focusing on the specific case of patient safety, narrative methods were used to analyze semistructured interviews with 28 people recently discharged from hospital in England. We present a typology of attribution, which demonstrates that patients' attributions of responsibility to staff and/or to patients are informed by two dimensions of responsibility: basis and contingency. The basis of responsibility is the reason for holding an individual or group responsible. The contingency of responsibility is the extent to which that attribution is contextually situated. The article contributes to knowledge about responsibility in complex organizational environments and offers a set of conceptual tools for exploring patients' understanding of responsibility in such contexts. There are implications for addressing patient engagement in care, within and beyond the field of patient safety.

'If I can walk that far': space and embodiment in stories of illness and recovery.

Illness and recovery transform embodied experience, and transform the experience of space. Space, in turn, is a valuable resource in the telling of an illness narrative. Starting from a phenomenological perspective that takes the body to be the centre of experience, and hence of selfhood and storytelling, this article offers an argument for and an approach to analysing space as a narrative resource in stories about illness and recovery. Using a case study of one woman's stories about her amputation, it demonstrates how both narrated space and narrating space can be used as devices to structure the narrative and position its characters and interlocutors to construct the narrator's embodied experiences and identities. The article reveals intersections between embodied experience, space, and narrative identity construction, offering a new way of attending to illness narratives and a new way of engaging with narrative space.

PReSaFe: A model of barriers and facilitators to patients providing feedback on experiences of safety.

OBJECTIVE: The importance of involving patients in reporting on safety is increasingly recognized. Whilst studies have identified barriers to clinician incident reporting, few have explored barriers and facilitators to patient reporting of safety experiences. This paper explores patient perspectives on providing feedback on safety experiences. DESIGN/PARTICIPANTS: Patients (n=28) were invited to take part in semi-structured interviews when given a survey about their experiences of safety following hospital discharge. Transcripts were thematically analysed using NVivo10. SETTING: Patients were recruited from four hospitals in the UK. RESULTS: Three themes were identified as barriers and facilitators to patient involvement in providing feedback on their safety experiences. The first, cognitive-cultural, found that whilst safety was a priority for most, some felt the term was not relevant to them because safety was the "default" position, and/or because safety could not be disentangled from the overall experience of care. The structural-procedural theme indicated that reporting was facilitated when patients saw the process as straightforward, but that disinclination or perceived inability to provide feedback was a barrier. Finally, learning and change illustrated that perception of the impact of feedback could facilitate or inhibit reporting. CONCLUSIONS: When collecting patient feedback on experiences of safety, it is important to consider what may help or hinder this process, beyond the process alone. We present a staged model of prerequisite barriers and facilitators and hypothesize that each stage needs to be achieved for patients to provide feedback on safety experiences. Implications for collecting meaningful data on patients' safety experiences are considered.

Healthcare professional and patient codesign and validation of a mechanism for service users to feedback patient safety experiences following a care transfer: a qualitative study.

OBJECTIVE: To develop and validate a mechanism for patients to provide feedback on safety experiences following a care transfer between organisations. DESIGN: Qualitative study using participatory methods (codesign workshops) and cognitive interviews. Workshop data were analysed concurrently with participants, and cognitive interviews were thematically analysed using a deductive approach based on the developed feedback mechanism. PARTICIPANTS: Expert patients (n=5) and healthcare professionals (n=11) were recruited purposively to develop the feedback mechanism in 2 workshops. Workshop 1 explored principles underpinning safety feedback mechanisms, and workshop 2 included the practical development of the feedback mechanism. Final design and content of the feedback mechanism (a safety survey) were verified by workshop participants, and cognitive interviews (n=28) were conducted with patients. RESULTS: Workshop participants identified that safety feedback mechanisms should be patient-centred, short and concise with clear signposting on how to complete, with an option to be anonymous and balanced between positive (safe) and negative (unsafe) experiences. The agreed feedback mechanism consisted of a survey split across 3 stages of the care transfer: departure, journey and arrival. Care across organisational boundaries was recognised as being complex, with healthcare professionals acknowledging the difficulty implementing changes that impact other organisations. Cognitive interview participants agreed the content of the survey was relevant but identified barriers to completion relating to the survey formatting and understanding of a care transfer. CONCLUSIONS: Participatory, codesign principles helped overcome differences in understandings of safety in the complex setting of care transfers when developing a safety survey. Practical barriers to the survey's usability and acceptability to patients were identified, resulting in a modified survey design. Further research is required to determine the usability and acceptability of the survey to patients and healthcare professionals, as well as identifying how governance structures should accommodate patient feedback when relating to multiple health or social care providers.

Experiences of Self-Management Support Following a Stroke: A Meta-Review of Qualitative Systematic Reviews.

BACKGROUND: Supporting self-management in stroke patients improves psychological and functional outcomes but evidence on how to achieve this is sparse. We aimed to synthesise evidence from systematic reviews of qualitative studies in an overarching meta-review to inform the delivery and development of self-management support interventions. METHODS: We systematically searched eight electronic databases including MEDLINE, EMBASE and CINAHL for qualitative systematic reviews (published January 1993 to June 2012). We included studies exploring patients', carers' or health care professionals' experiences relevant to self-management support following a stroke, including studies describing the lived experience of surviving a stroke. We meta-synthesised the included review findings using a meta-ethnographic framework. RESULTS: Seven reviews, reporting 130 unique studies, were included. Themes emerging from the reviews were pertinent, consistent and showed data saturation; though explicit mention of self-management support was rare. Our meta-review highlighted the devastating impact of stroke on patients' self-image; the varying needs for self-management support across the trajectory of recovery; the need for psychological and emotional support throughout recovery particularly when physical recovery plateaus; the considerable information needs of patients and carers which also vary across the trajectory of recovery; the importance of good patient-professional communication; the potential benefits of goal-setting and action-planning; and the need for social support which might be met by groups for stroke survivors. CONCLUSIONS: The observed data saturation suggests that, currently, no further qualitative research simply describing the lived experience of stroke is needed; we propose that it would be more useful to focus on qualitative research informing self-management support interventions and their implementation. Our findings demonstrate both the on-going importance of self-management support and the evolving priorities throughout the stages of recovery following a stroke. The challenge now is to ensure these findings inform routine practice and the development of interventions to support self-management amongst stroke survivors.

Patient Reporting of Safety experiences in Organisational Care Transfers (PRoSOCT): a feasibility study of a patient reporting tool as a proactive approach to identifying latent conditions within healthcare systems.

BACKGROUND: It is increasingly recognised that patients can play a role in reporting safety incidents. Studies have tended to focus on patients within hospital settings, and on the reporting of patient safety incidents as defined within a medical model of safety. This study aims to determine the feasibility of collecting and using patient experiences of safety as a proactive approach to identifying latent conditions of safety as patients undergo organisational care transfers. METHODS AND ANALYSIS: The study comprises three components: (1) patients' experiences of safety relating to a care transfer, (2) patients' receptiveness to reporting experiences of safety, (3) quality improvement using patient experiences of safety. (1) A safety survey and evaluation form will be distributed to patients discharged from 15 wards across four clinical areas (cardiac, care of older people, orthopaedics and stroke) over 1 year. Healthcare professionals involved in the care transfer will be provided with a regular summary of patient feedback. (2) Patients (n=36) who return an evaluation form will be sampled representatively based on the four clinical areas and interviewed about their experiences of healthcare and safety and completing the survey. (3) Healthcare professionals (n=75) will be invited to participate in semistructured interviews and focus groups to discuss their experiences with and perceptions of receiving and using patient feedback. Data analysis will explore the relationship between patient experiences of safety and other indicators and measures of quality and safety. Interview and focus group data will be thematically analysed and triangulated with all other data sources using a convergence coding matrix. ETHICS AND DISSEMINATION: The study has been granted National Health Service (NHS) Research Ethics Committee approval. Patient experiences of safety will be disseminated to healthcare teams for the purpose of organisational development and quality improvement. Results will be disseminated to study participants as well as through peer-reviewed outputs.

The multiple meanings of 'disability' in interviews with amputees.

The link between having a lower-limb amputation and being disabled might seem self-evident. Indeed, the medical model of disability would suggest that lower-limb amputation causes disability, and that all lower-limb amputees are disabled people. Conversely, social models of disability would argue that limb loss does not determine disability, but that disabilities are rather caused by social structures and prejudices, while the interactional model suggests that there are both individual and social causes of disability. This paper draws on interviews with nine lower-limb amputees to address amputees' own accounts of disability, in order to determine how (if at all) they make links between being an amputee and being disabled. The analysis shows that participants draw on various models of disability, as well as their own lived experiences, to construct subjective and diverse definitions of disability. Three interlinking definitions of disability recurred across the data: disability as a measure of personal (in)abilities; disability as a stigmatizing mask; and disability as an official status. Overall, disability was constructed as a complex, context-dependent label, which could not be reduced to any singular concept.