Mapping and identifying service models for community-based services for children with intellectual disabilities and behaviours that challenge in England.

BACKGROUND: One in five children with an intellectual disability in the UK display behaviours that challenge. Despite associated impacts on the children themselves, their families, and services, little research has been published about how best to design, organise, and deliver health and care services to these children. The purpose of this study was to describe how services are structured and organised ("service models") in England for community-based health and care services for children with intellectual disability who display behaviours that challenge. METHODS: Survey data about services were collected from 161 eligible community-based services in England. Staff from 60 of these services were also interviewed. A combination of latent class and descriptive analysis, coupled with consultation with family carers and professionals was used to identify and describe groupings of similar services (i.e., "service models"). RESULTS: The latent class analysis, completed as a first step in the process, supported a distinction between specialist services and non-specialist services for children who display behaviours that challenge. Planned descriptive analyses incorporating additional study variables were undertaken to further refine the service models. Five service models were identified: Child and Adolescent Mental Health Services (CAMHS) (n = 69 services), Intellectual Disability CAMHS (n = 28 services), Children and Young People Disability services (n = 25 services), Specialist services for children who display behaviours that challenge (n = 27 services), and broader age range services for children and/or adolescents and adults (n= 12 services). CONCLUSIONS: Our analysis led to a typology of five service models for community health and care services for children with intellectual disabilities and behaviours that challenge in England. Identification of a typology of service models is a first step in building evidence about the best provision of services for children with intellectual disabilities who display behaviours that challenge. The methods used in the current study may be useful in research developing service typologies in other specialist fields of health and care. STUDY REGISTRATION: Trial Registration: Current Controlled Trials ISRCTN88920546, Date assigned 05/07/2022.

Reducing Opioid Use for Chronic Pain With a Group-Based Intervention: A Randomized Clinical Trial.

Importance: Opioid use for chronic nonmalignant pain can be harmful. Objective: To test whether a multicomponent, group-based, self-management intervention reduced opioid use and improved pain-related disability compared with usual care. Design, Setting, and Participants: Multicentered, randomized clinical trial of 608 adults taking strong opioids (buprenorphine, dipipanone, morphine, diamorphine, fentanyl, hydromorphone, methadone, oxycodone, papaveretum, pentazocine, pethidine, tapentadol, and tramadol) to treat chronic nonmalignant pain. The study was conducted in 191 primary care centers in England between May 17, 2017, and January 30, 2019. Final follow-up occurred March 18, 2020. Intervention: Participants were randomized 1:1 to either usual care or 3-day-long group sessions that emphasized skill-based learning and education, supplemented by 1-on-1 support delivered by a nurse and lay person for 12 months. Main Outcomes and Measures: The 2 primary outcomes were Patient-Reported Outcomes Measurement Information System Pain Interference Short Form 8a (PROMIS-PI-SF-8a) score (T-score range, 40.7-77; 77 indicates worst pain interference; minimal clinically important difference, 3.5) and the proportion of participants who discontinued opioids at 12 months, measured by self-report. Results: Of 608 participants randomized (mean age, 61 years; 362 female [60%]; median daily morphine equivalent dose, 46 mg [IQR, 25 to 79]), 440 (72%) completed 12-month follow-up. There was no statistically significant difference in PROMIS-PI-SF-8a scores between the 2 groups at 12-month follow-up (-4.1 in the intervention and -3.17 in the usual care groups; between-group difference: mean difference, -0.52 [95% CI, -1.94 to 0.89]; P = .15). At 12 months, opioid discontinuation occurred in 65 of 225 participants (29%) in the intervention group and 15 of 208 participants (7%) in the usual care group (odds ratio, 5.55 [95% CI, 2.80 to 10.99]; absolute difference, 21.7% [95% CI, 14.8% to 28.6%]; P < .001). Serious adverse events occurred in 8% (25/305) of the participants in the intervention group and 5% (16/303) of the participants in the usual care group. The most common serious adverse events were gastrointestinal (2% in the intervention group and 0% in the usual care group) and locomotor/musculoskeletal (2% in the intervention group and 1% in the usual care group). Four people (1%) in the intervention group received additional medical care for possible or probable symptoms of opioid withdrawal (shortness of breath, hot flushes, fever and pain, small intestinal bleed, and an overdose suicide attempt). Conclusions and Relevance: In people with chronic pain due to nonmalignant causes, compared with usual care, a group-based educational intervention that included group and individual support and skill-based learning significantly reduced patient-reported use of opioids, but had no effect on perceived pain interference with daily life activities. Trial Registration: isrctn.org Identifier: ISRCTN49470934.

A Healing Journey with Chronic Pain: A Meta-Ethnography Synthesizing 195 Qualitative Studies.

OBJECTIVE: There is a large body of research exploring what it means for a person to live with chronic pain. However, existing research does not help us understand what it means to recover. We aimed to identify qualitative research that explored the experience of living with chronic pain published since 2012 and to understand the process of recovery. DESIGN: A synthesis of qualitative research using meta-ethnography. METHODS: We used the seven stages of meta-ethnography. We systematically searched for qualitative research, published since 2012, that explored adults' experiences of living with, and being treated for, chronic pain. We used constant comparison to distill the essence of ideas into themes and developed a conceptual model. RESULTS: We screened 1,328 titles and included 195 studies. Our conceptual model indicates that validation and reconnection can empower a person with chronic pain to embark on a journey of healing. To embark on this journey requires commitment, energy, and support. CONCLUSIONS: The innovation of our study is to conceptualize healing as an ongoing and iterating journey rather than a destination. Health interventions for chronic pain would usefully focus on validating pain through meaningful and acceptable explanations; validating patients by listening to and valuing their stories; encouraging patients to connect with a meaningful sense of self, to be kind to themselves, and to explore new possibilities for the future; and facilitating safe reconnection with the social world. This could make a real difference to people living with chronic pain who are on their own healing journeys.

Life after falls prevention exercise - experiences of older people taking part in a clinical trial: a phenomenological study.

BACKGROUND: There is little evidence about the lived experience of older people who have completed a falls prevention exercise programme and their life beyond their intervention. METHOD: A phenomenological interview study with 23 participants (12 females), mean age 81 years (range 74-93 years), residing in their own homes across England, who had participated in a falls prevention exercise intervention within the Prevention of Falls Injury Trial (PreFIT). The aims were to explore their experiences of: i. being in a clinical trial involving exercise. ii. exercise once their falls prevention intervention had finished. Interpretative data analysis was informed by van Manen's (1997) framework for phenomenological data. RESULTS: Analysis of interviews about experiences of participating in PreFIT and what happened once the falls intervention ended identified five themes: Happy to help; Exercise behaviours; "It keeps me going"; "It wasn't a real fall"; and Loss. Participants did not continue their specific exercises after they had completed the intervention. They preferred walking as their main exercise, and none reported preventing falls as a motivator to continue exercising. Participant experiences suggest that they have their own ideas about what constitutes a fall and there is disparity between their interpretation and the definition used by healthcare professionals and researchers. CONCLUSION: Despite good intentions and perceived benefits, on-going participation in falls prevention exercises beyond a structured, supervised intervention was not a priority for these older people. Promoting continuation of falls prevention exercises post-intervention is just as challenging as promoting uptake to and adherence during exercise programmes.

Tourniquet use for knee replacement surgery.

BACKGROUND: Many surgeons prefer to perform total knee replacement surgery with the aid of a tourniquet. A tourniquet is an occlusive device that restricts distal blood flow to help create a bloodless field during the procedure. A tourniquet may be associated with increased risk of pain and complications. OBJECTIVES: To determine the benefits and harms of tourniquet use in knee replacement surgery. SEARCH METHODS: We searched MEDLINE, Embase, and Cochrane Central Register of Controlled Trials (CENTRAL) up to 26 March 2020. We searched clinicaltrials.gov, the World Health Organization trials portal, and several international registries and joint registries up to March 2020. SELECTION CRITERIA: We included randomised controlled trials (RCTs) comparing knee replacement with use of a tourniquet versus without use of a tourniquet and non-randomised studies with more than 1000 participants. Major outcomes included pain, function, global assessment of success, health-related quality of life, serious adverse events (including venous thromboembolism, infection, re-operation, and mortality), cognitive function, and survival of the implant. Minor outcomes included blood loss, economic outcomes, implant stability, and adverse events. DATA COLLECTION AND ANALYSIS: Two review authors screened abstracts and full texts, extracted data, performed risk of bias assessments, and assessed the certainty of the evidence using the GRADE approach. MAIN RESULTS: We included 41 RCTs with 2819 participants. Trials included from 20 to 199 participants. Mean age ranged between 58 and 84 years. More than half of the RCTs had unclear risk of selection bias and unclear risk of performance and detection bias due to absence of blinding of participants and surgeons. Major outcomes Pain: at postoperative day 1, pain (on a scale from zero to 10, with higher scores indicating worse pain) was ranked at 4.56 points after surgery without a tourniquet and at 1.25 points (MD) higher (95% CI 0.32 higher to 2.19 higher) with a tourniquet (8 studies; 577 participants), for an absolute difference of 12.5% higher pain scores (95% CI 3.2% higher to 21.9% higher) and a relative difference of 19% higher pain scores (95% CI 3.4% higher to 49% higher) with a tourniquet. Evidence for these findings was of moderate certainty, downgraded due to risk of bias. Knee replacement with a tourniquet probably led to higher postoperative pain scores at day 1, although this difference may or may not be noticeable to patients (based on a minimal clinically important difference (MCID) of 1.0). Function: at 12 months, tourniquet use probably makes little or no difference to function, based on an MCID of 5.3 for Knee Society Score (KSS) and 5.0 for Oxford Knee Score (OKS). Mean function (on a scale from 0 to 100, with higher scores indicating better outcomes) was 90.03 points after surgery without a tourniquet and was 0.29 points worse (95% CI 1.06 worse to 0.48 better) on a 0 to 100 scale, absolute difference was 0.29% worse (1.06% worse to 0.48% better), with a tourniquet (5 studies; 611 participants). This evidence was downgraded to moderate certainty due to risk of bias. Global assessment of success: low-certainty evidence (downgraded due to bias and imprecision) indicates that tourniquet use may have little or no effect on success. At six months, 47 of 50 (or 940 per 1000) reported overall successful treatment after surgery without a tourniquet and 47 of 50 (or 940 per 1000) with a tourniquet (risk ratio (RR) 1.0, 95% CI 0.91 to 1.10) based on one study with 100 participants. Health-related quality of life: at six months, tourniquet may have little or no effect on quality of life. The 12-Item Short Form Survey (SF-12) score (mental component from zero to 100 (100 is best)) was 54.64 after surgery without a tourniquet and 1.53 (MD) better (95% CI 0.85 worse to 3.91 better) with a tourniquet (1 study; 199 participants); absolute difference was 1.53% better (0.85% worse to 3.91% better). Evidence was of low certainty, downgraded due to risk of bias and small number of participants. Serious adverse events: the risk of serious adverse events was probably higher with tourniquet; 26 of 898 (29 per 1000) reported events following surgery without a tourniquet compared to 53 of 901 (59 per 1000) with a tourniquet (RR 1.73, 95% CI 1.10 to 2.73) in 21 studies (1799 participants). Twenty-nine more per 1000 patients (95% CI 3 to 50 more per 1000 patients) had a serious adverse event with a tourniquet. Forty-eight (95% CI 20 to 345) participants would need to have surgery without a tourniquet to avoid one serious adverse event. This evidence was downgraded to moderate certainty due to risk of bias. Cognitive function: one study reported cognitive function as an outcome; however the data were incompletely reported and could not be extracted for analysis. Survival of implant: it is uncertain if tourniquet has an effect on implant survival due to very low certainty evidence (downgraded for bias, and twice due to very low event rates); 2 of 107 (19 per 1000) required revision surgery in the surgery with a tourniquet group compared to 1 of 107 (9 per 1000) without a tourniquet group at up to two years' follow-up (RR 1.44, 95% CI 0.23 to 8.92). This equates to a 0.4% (0.7% lower to 7% more) increased absolute risk in surgery with a tourniquet. AUTHORS' CONCLUSIONS: Moderate certainty evidence shows that knee replacement surgery with a tourniquet is probably associated with an increased risk of serious adverse events. Surgery with a tourniquet is also probably associated with higher postoperative pain, although this difference may or may not be noticeable to patients. Surgery with a tourniquet does not appear to confer any clinically meaningful benefit on function, treatment success or quality of life. Further research is required to explore the effects of tourniquet use on cognitive function and implant survival, to identify any additional harms or benefits. If a tourniquet continues to be used in knee replacement surgery, patients should be informed about the potential increased risk of serious adverse events and postoperative pain.

ANTECEDENTES: Muchos cirujanos prefieren realizar una cirugía de reemplazo total de rodilla con la ayuda de un torniquete. Un torniquete es un dispositivo oclusivo que restringe el flujo sanguíneo distal para ayudar a crear un campo sin sangre durante el procedimiento. El torniquete se puede asociar con un mayor riesgo de dolor y complicaciones. OBJETIVOS: Determinar los efectos beneficiosos y perjudiciales del uso de torniquetes en la cirugía de reemplazo de rodilla. MÉTODOS DE BÚSQUEDA: Se hicieron búsquedas en MEDLINE, Embase y en el Registro Cochrane central de ensayos controlados (CENTRAL) hasta el 26 de marzo de 2020. Se realizaron búsquedas en clinicaltrials.gov, el portal de ensayos de la Organización Mundial de la Salud, y en varios registros internacionales y registros conjuntos hasta marzo de 2020. CRITERIOS DE SELECCIÓN: Se incluyeron los ensayos controlados aleatorizados (ECA) que compararon el reemplazo de rodilla con el uso de un torniquete versus sin el uso de un torniquete y los estudios no aleatorizados con más de 1000 participantes. Los desenlaces principales fueron el dolor, la funcionalidad, la evaluación general del éxito, la calidad de vida relacionada con la salud, los eventos adversos graves (incluido el tromboembolismo venoso, la infección, la reintervención y la mortalidad), la función cognitiva y la supervivencia del implante. Los desenlaces secundarios incluyeron la pérdida de sangre, los desenlaces económicos, la estabilidad del implante y los eventos adversos. OBTENCIÓN Y ANÁLISIS DE LOS DATOS: Dos autores de la revisión examinaron los resúmenes y los textos completos, extrajeron los datos, realizaron las evaluaciones del riesgo de sesgo y evaluaron la certeza de la evidencia utilizando el enfoque GRADE. RESULTADOS PRINCIPALES: Se incluyeron 41 ECA con 2819 participantes. Los ensayos incluyeron de 20 a 199 participantes. La media de edad varió entre 58 y 84 años. Más de la mitad de los ECA tenían riesgo incierto de sesgo de selección y riesgo incierto de sesgo de realización y detección debido a la falta de cegamiento de los participantes y los cirujanos. Desenlaces principales Dolor: en el primer día después de la cirugía, el dolor (en una escala de 0 a 10, con puntuaciones mayores que indican un peor dolor) se clasificó en 4,56 puntos después de la cirugía sin torniquete y en 1,25 puntos (DM) mayor (IC del 95%: 0,32 mayor a 2,19 mayor) con un torniquete (ocho estudios; 577 participantes), para una diferencia absoluta de 12,5% de puntuaciones mayores de dolor (IC del 95%: 3,2% mayor a 21,9% mayor) y una diferencia relativa de 19% de puntuaciones mayores de dolor (IC del 95%: 3,4% mayor a 49% mayor) con un torniquete. La evidencia de estos hallazgos fue de certeza moderada, disminuida debido al riesgo de sesgo. El reemplazo de rodilla con un torniquete probablemente dio lugar a mayores puntuaciones de dolor en el primer día después de la cirugía, aunque esta diferencia puede o no ser perceptible para los pacientes (sobre la base de una diferencia mínima clínicamente importante [DMCI] de 1,0). Funcionalidad: a los 12 meses el uso de torniquetes probablemente da lugar a poca o ninguna diferencia en la funcionalidad, según una DMCI de 5,3 en la Knee Society Score (KSS) y de 5,0 en la Oxford Knee Score (OKS). La funcionalidad media (en una escala de 0 a 100, con puntuaciones más altas que indican mejores desenlaces) fue de 90,03 puntos después de la cirugía sin torniquete y fue 0,29 puntos peor (IC del 95%: 1,06 peor a 0,48 mejor) en una escala de 0 a 100, la diferencia absoluta fue 0,29% peor (1,06% peor a 0,48% mejor), con un torniquete (cinco estudios; 611 participantes). Esta evidencia se disminuyó a certeza moderada debido al riesgo de sesgo. Evaluación general del éxito: evidencia de certeza baja (disminuida debido al sesgo y la imprecisión) indica que el uso de torniquetes puede tener poco o ningún efecto en el éxito. A los seis meses, 47 de 50 (o 940 por 1000) informaron de un tratamiento general exitoso después de la cirugía sin torniquete y 47 de 50 (o 940 por 1000) con torniquete (razón de riesgos [RR] 1,0; IC del 95%: 0,91 a 1,10), según un estudio con 100 participantes. Calidad de vida relacionada con la salud: a los seis meses, el torniquete puede tener poco o ningún efecto en la calidad de vida. La puntuación de la 12­Item Short Form Survey (SF­12) (componente mental de 0 a 100 [100 es mejor]) fue de 54,64 después de la cirugía sin torniquete y 1,53 (DM) mejor (IC del 95%: 0,85 peor a 3,91 mejor) con torniquete (un estudio; 199 participantes); la diferencia absoluta fue 1,53% mejor (0,85% peor a 3,91% mejor). La evidencia fue de certeza baja, y se disminuyó debido al riesgo de sesgo y al escaso número de participantes. Eventos adversos graves: el riesgo de eventos adversos graves probablemente fue mayor con el uso de un torniquete; 26 de 898 (29 por 1000) notificaron eventos después de la cirugía sin torniquete en comparación con 53 de 901 (59 por 1000) con un torniquete (RR 1,73; IC del 95%: 1,10 a 2,73) en 21 estudios (1799 participantes). Veintinueve más por cada 1000 pacientes (95% CI 3 a 50 más por 1000 pacientes) presentaron un evento adverso grave con un torniquete. Cuarenta y ocho (IC del 95%: 20 a 345) participantes tendrían que ser operados sin torniquete para evitar un evento adverso grave. Esta evidencia se disminuyó a certeza moderada debido al riesgo de sesgo. Función cognitiva: un estudio informó de la función cognitiva como un desenlace; sin embargo, los datos se informaron de manera incompleta y no se pudieron extraer para el análisis. Supervivencia del implante: no está claro si el torniquete tiene un efecto sobre la supervivencia del implante debido a evidencia de certeza muy baja (disminuida por el sesgo, y dos veces debido a las tasas de eventos muy bajas); dos de 107 (19 por 1000) requirieron cirugía de revisión en el grupo de cirugía con torniquete en comparación con uno de 107 (nueve por 1000) en el grupo sin torniquete hasta los dos años de seguimiento (RR 1,44; IC del 95%: 0,23 a 8,92). Esto equivale a un 0,4% (0,7% menos a 7% más) de aumento del riesgo absoluto en la cirugía con torniquete. CONCLUSIONES DE LOS AUTORES: Evidencia de certeza moderada muestra que la cirugía de reemplazo de rodilla con torniquete probablemente se asocia con un mayor riesgo de eventos adversos graves. La cirugía con torniquete también se asocia probablemente con un mayor dolor posoperatorio, aunque esta diferencia puede o no ser perceptible para los pacientes. La cirugía con torniquete no parece conferir efectos beneficiosos clínicamente significativos en la funcionalidad, el éxito del tratamiento o la calidad de vida. Se necesitan estudios de investigación adicionales para explorar los efectos del uso de torniquetes en la función cognitiva y la supervivencia del implante, para identificar cualquier efecto perjudicial o beneficioso adicional. Si se sigue utilizando un torniquete en la cirugía de reemplazo de rodilla, se debe informar a los pacientes sobre el posible aumento del riesgo de que se produzcan efectos adversos graves y dolor posoperatorio.

Supervised pulmonary hypertension exercise rehabilitation (SPHERe): study protocol for a multi-centre randomised controlled trial.

BACKGROUND: Supervised cardio-pulmonary rehabilitation may be safe and beneficial for people with pulmonary hypertension (PH) in groups 1 (pulmonary arterial hypertension) and 4 (chronic thromboembolic disease), particularly as a hospital in-patient. It has not been tested in the most common PH groups; 2 (left heart disease), 3 (lung disease), or 5 (other disorders). Further it has not been evaluated in the UK National Health Service (NHS) out-patient setting, or with long-term follow-up. The aim of this randomised controlled trial (RCT) is to test the clinical and cost-effectiveness of a supervised exercise rehabilitation intervention with psychosocial support compared to best practice usual care for people with PH in the community/outpatient setting. METHODS: This multi-centre, pragmatic, two-arm RCT with embedded process evaluation aims to recruit 352 clinically stable adults with PH (groups 1-5) and WHO functional class II-IV. Participants will be randomised to either the Supervised Pulmonary Hypertension Exercise Rehabilitation (SPHERe) intervention or control. The SPHERe intervention consists of 1) individual assessment and familiarisation sessions; 2) 8-week, twice-weekly, supervised out-patient exercise training; 3) psychosocial/motivational support and education; 4) guided home exercise plan. The control intervention consists of best practice usual care with a single one-to-one practitioner appointment, and general advice on physical activity. Outcomes will be measured at baseline, 4 months (post-intervention) and 12 months by researchers blinded to treatment allocation. The primary outcome is the incremental shuttle walk test at 4 months. Secondary outcomes include health-related quality of life (HRQoL), time to clinical worsening and health and social care use. A purposive sample of participants (n = 20 intervention and n = 20 control) and practitioners (n = 20) will be interviewed to explore experiences of the trial, outcomes and interventions. DISCUSSION: The SPHERe study is the first multi-centre clinical RCT to assess the clinical and cost effectiveness of a supervised exercise rehabilitation intervention compared to usual care, delivered in the UK NHS, for people in all PH groups. Results will inform clinicians and commissioners as to whether or not supervised exercise rehabilitation is effective and should be routinely provided for people with PH. TRIAL REGISTRATION: ISRCTN no. 10608766, prospectively registered on 18th March 2019.

Understanding assessment on a hospital ward for older people: A qualitative study.

AIM: To explore assessment on a hospital ward for older people from the perspectives of patients and healthcare professionals. DESIGN: A qualitative study drawing on grounded theory was undertaken between February 2015 - January 2016. METHODS: Interviews with 15 patients and 22 healthcare professionals, a focus group with six healthcare professionals, 45 hr of observation and review of 18 sets of patient notes. Analysis was conducted using initial and focused coding, continuously comparing data, emerging codes and themes. FINDINGS: The core category was navigating, constructed through three themes: containing complexity, networking, and situating the process. Navigating assessment was a complex, flexible, context dependent, and social process where healthcare professionals used a combination of formal, informal, visible, and invisible ways of working. Registered nurses were at the centre of networking and focused on gathering and sharing information in the multi-disciplinary team, whilst patients had a passive role despite a variety of preferences about their involvement. CONCLUSIONS: Navigating the assessment of older people is contextually situated, includes networking and a professional focus on containing complexity. This process may be enhanced by: (a) making informal assessment visible to others; (b) developing the nurses' role beyond chasing information towards coordinating care; and (c) asking patients and acting on how they would like to be involved in decision-making. IMPACT: Acknowledging that navigating assessment is a social, flexible and complex process, including different ways of working to meet patient needs, may enhance the usability of current assessment guidelines and their development.

Compassion in nursing: Solution or stereotype?

Compassion in healthcare has received significant attention recently, on an international scale, with concern raised about its absence during clinical interactions. As a concept, compassionate care has been linked to nursing. We examined historical discourse on this topic, to understand and situate current debates on compassionate care as a hallmark of high-quality services. Documents we looked at illustrated how responsibility for delivering compassionate care cannot be consigned to individual nurses. Health professionals must have the right environmental circumstances to be able to provide and engage in compassionate interactions with patients and their relatives. Hence, although compassionate care has been presented as a straightforward solution when crisis faces health services, this discourse, especially in policy documents, has often failed to acknowledge the system-level issues associated with its provision. This has resulted in simplistic presentations of 'compassion' as inexpensive and the responsibility of individual nurses, a misleading proposal that risks devaluing the energy and resources required to deliver compassionate care. It also overlooks the need for organisations, not just individuals, to be charged with upholding its provision.

A mega-ethnography of eleven qualitative evidence syntheses exploring the experience of living with chronic non-malignant pain.

BACKGROUND: Each year over five million people develop chronic non-malignant pain and can experience healthcare as an adversarial struggle. The aims of this study were: (1) to bring together qualitative evidence syntheses that explore patients' experience of living with chronic non-malignant pain and develop conceptual understanding of what it is like to live with chronic non-malignant pain for improved healthcare; (2) to undertake the first mega-ethnography of qualitative evidence syntheses using the methods of meta-ethnography. METHODS: We used the seven stages of meta-ethnography refined for large studies. The innovation of mega-ethnography is to use conceptual findings from qualitative evidence syntheses as primary data. We searched 7 bibliographic databases from inception until February 2016 to identify qualitative evidence syntheses that explored patients' experience of living with chronic non-malignant pain. RESULTS: We identified 82 potential studies from 556 titles, screened 34 full text articles and included 11 qualitative evidence syntheses synthesising a total of 187 qualitative studies reporting more than 5000 international participants living with chronic pain. We abstracted concepts into 7 conceptual categories: (1) my life is impoverished and confined; (2) struggling against my body to be me; (3) the quest for the diagnostic 'holy grail'; (4) lost personal credibility; (5) trying to keep up appearances; (6) need to be treated with dignity; and (7) deciding to end the quest for the grail is not easy. Each conceptual category was supported by at least 7 of the 11 qualitative evidence syntheses. CONCLUSIONS: This is the first mega-ethnography, or synthesis of qualitative evidence syntheses using the methods of meta-ethnography. Findings help us to understand that the decision to end the quest for a diagnosis can leave patients feeling vulnerable and this may contribute to the adversarial nature of the clinical encounter. This knowledge demonstrates that treating a patient with a sense that they are worthy of care and hearing their story is not an adjunct to, but integral to health care.

The development of service user-led recommendations for health and social care services on leaving hospital with memory loss or dementia - the SHARED study.

BACKGROUND: Health and social care services are under strain providing care in the community particularly at hospital discharge. Patient and carer experiences can inform and shape services. OBJECTIVE: To develop service user-led recommendations enabling smooth transition for people living with memory loss from acute hospital to community. DESIGN: Lead and co-researchers conducted semi-structured interviews with 15 pairs of carers and patients with memory loss at discharge, 6 and 12 weeks post-discharge and one semi-structured interview with health and social care professionals and Admiral Nurses. Framework analysis was guided by co-researchers. Two focus groups of study participants, facilitated by co-researchers, met to shape and finalize recommendations. SETTING AND PARTICIPANTS: Recruitment took place in acute hospitals in two National Health Service (NHS) Trusts in England. Patients were aged 65 and over, with memory loss, an in-patient for at least 1 week returning to the community, who had a carer consenting to be in the study. RESULTS: Poor delivery of services caused considerable stress to some study families living with memory loss. Three key recommendations included a need for a written, mutually agreed discharge plan, a named coordinator of services, and improved domiciliary care services. DISCUSSION AND CONCLUSIONS: Vulnerable patients with memory loss find coming out of hospital after an extended period a stressful experience. The SHARED study contributes to understanding the hospital discharge process through the eyes of the patient and carer living with memory loss and has the potential to contribute to more efficient use of resources and to improving health outcomes in communities.

Enabling the flow of compassionate care: a grounded theory study.

BACKGROUND: Compassion has become a topic of increasing interest within healthcare over recent years. Yet despite its raised profile, little research has investigated how compassionate care is enacted and what it means to healthcare professionals (HCPs). In a grounded theory study, we aimed to explore this topic from the perspective of people working with patients with type 2 diabetes - a long-term condition that involves repeated interactions with HCPs. METHODS: Semi-structured interviews and focus groups were conducted between May and October 2015 with 36 participants, selected from a range of roles within healthcare. Data collection explored their understanding of compassionate care and experiences of it in practice. Analysis followed the constructivist approach of Charmaz, which recognises meaning as being created by the interaction of people working under specific sociocultural conditions. It moved from open to focused coding, and involved the development of memos and constant comparison. RESULTS: Our analysis revealed that wishing to provide compassionate care, on its own, was insufficient to ensure this transpired; HCPs needed to work in a setting that supported them to do this, which underpins our core concept - the compassionate care flow. Data suggested that to be sustained, this flow was energised via what participants described as 'professional' compassion, which was associated with the intention to improve patient health and participants' role within healthcare. The compassionate care flow could be enhanced by defenders (e.g. supportive colleagues, seeing the patient as a person, drawing on their faith) or depleted by drainers (i.e. competing demands on time and resources), through their impact on professional compassion. CONCLUSIONS: This paper presents a model of compassionate care based on the notion of flow. It looks at processes associated with this concept and how compassionate care is delivered within health settings. Our new understanding of this phenomenon will help those working in healthcare, including managers and policy makers, to consider and potentially offset disruption to the compassionate care flow.

A qualitative evidence synthesis to explore healthcare professionals' experience of prescribing opioids to adults with chronic non-malignant pain.

BACKGROUND: Despite recent guidelines suggesting that patients with chronic non-malignant pain might not benefit, there has been a significant rise in opioid prescription for chronic non-malignant pain. This topic is important because an increasing number of HCPs are prescribing opioids despite very limited evidence for long-term opioid therapy for chronic non-malignant pain outside of end-of-life care. To better understand the challenges of providing effective treatment, we conducted the first qualitative evidence synthesis to explore healthcare professionals' experience of treating people with chronic non-malignant pain. We report findings that explore healthcare professionals' experience of prescribing opioids to this group of patients. METHODS: We searched five electronic bibliographic databases (Medline, Embase, CINAHL, PsychINFO, AMED) from inception to November 2015 and screened titles, abstracts and full texts of potential studies. We included studies in English that explored healthcare professionals' experience of treating adults with chronic non-malignant pain. Two reviewers quality appraised each paper. We used the methods of meta-ethnography developed and refined for large reviews, and the GRADE-CERQual framework to rate confidence in review findings. RESULTS: We screened 954 abstracts and 184 full texts, and included 77 studies in the full review. 17 of these 77 studies included concepts that explored the experience of prescribing opioids. We abstracted these concepts into 6 overarching themes: (1) Should I, shouldn't I? (2) Pain is Pain; (3) Walking a fine line; (4) Social guardianship; (5) Moral boundary work; (6) Regulations and guidelines. We used the GRADE-CERQual framework to evaluate confidence in findings. A new overarching concept of 'ambiguity' explains the balancing required around the factors taken into account when prescribing opioids. Managing this ambiguity is challenging and these findings can inform healthcare professionals dealing with these decisions. CONCLUSIONS: This conceptual model demonstrates the complexity of making a decision to prescribe opioids to someone with chronic non-malignant pain. Although opioid prescription is underpinned by the therapeutic aim of alleviating pain, this aim may be misplaced. This has implications for education in light of the new regulations for opioid prescription. Findings also demonstrate that the decision is influenced by intra- and interpersonal factors and broader external concerns.

'I have the world's best job' - staff experience of the advantages of caring for older people.

RATIONALE: Besides a growing demand for safe high-quality care for older people, long-term care (LTC) often struggles to recruit appropriately qualified nursing staff. Understanding what LTC staff value in their work may contribute to a more comprehensive understanding of what can attract staff and support person-centred care. AIM: To explore staff experience of the advantages of working in LTC settings for older people. METHODS: Narrative descriptions of 85 LTC staff in Ireland, the Netherlands and Sweden on what they value in their work were analysed with qualitative content analysis. ETHICS: Ethical approval was obtained according to the requirements of each country, and participants provided informed consent prior to the individual interviews. FINDINGS: Working in LTC signifies bonding with the older people residing there, their next of kin and the team members. It means autonomy in one's daily tasks amalgamated with being a part of an affirmative team. Participants reported a sense of accomplishment and fulfilment; caring meant consideration and recognition of the older people and the relationships formed, which provided for professional and personal growth. The sharing of compassion between staff and residents indicated reciprocity of the relationship with residents. STUDY LIMITATIONS: The findings may be transferable to LTC in general although they address only the positive aspects of caring for older people and only the experiences of those staff who had consented to take part in the study. CONCLUSIONS: The findings add to what underpins the quality of care in nursing homes: compassion in the nurse-resident relationship and person-centred care in LTC. They indicate reciprocity in the relations formed that may contribute to the empowerment of older people, but further studies are needed to explore this in more detail.

Making sense of it: intensive care patients' phenomenological accounts of story construction.

BACKGROUND: Patients entering intensive care encounter physical and psychological stress that may lead to psychological morbidity such as depression, anxiety and post-traumatic stress. It has been suggested that constructing a story may assist psychological recovery. However, this has been minimally investigated in intensive care patients. AIM: The aim of this article is to examine the process of story construction in people's phenomenological accounts of being a patient in the technological environment of intensive care. STUDY DESIGN: The study design was informed by Heideggerian phenomenology. METHODS: Semi-structured interviews were conducted with 19 patients who had been in intensive care for at least 4 days. Interviews were digitally recorded, transcribed and analysed utilizing Van Manen's framework for thematic analysis. FINDINGS: Making sense of their experiences in an intensive care unit appeared to be fundamental to story construction. Themes that arose were 'why am I here?', 'filling in the gaps', 'sorting the real from the unreal' and 'searching for familiarity'. These themes describe how participants sought temporal and causal coherence in order to construct their integrated and understandable story. Families appeared to play a critical role in helping participants fill in the gaps, sorting the real from the unreal and their subsequent psychological recovery. CONCLUSIONS AND RELEVANCE TO CLINICAL PRACTICE: The importance of early support from health care professionals to facilitate patients' story construction is highlighted. The study also emphasizes the role families play in supporting patients while they make sense of their experiences and the associated psychological recovery process. Further research to evaluate methods of facilitating story construction, such as nurse-led debriefing and patient diaries, is recommended. In addition, an investigation of families' perceptions of their role in assisting patients construct their story may facilitate the development of strategies by health care professionals to effectively support families in their role.

A Bridge Over Turbulent Waters: Illustrating the Interaction Between Managerial Leaders and Facilitators When Implementing Research Evidence.

BACKGROUND: Emerging evidence focuses on the importance of the role of leadership in successfully transferring research evidence into practice. However, little is known about the interaction between managerial leaders and clinical leaders acting as facilitators (internal facilitators [IFs]) in this implementation process. AIMS: To describe the interaction between managerial leaders and IFs and how this enabled or hindered the facilitation process of implementing urinary incontinence guideline recommendations in a local context in settings that provide long-term care to older people. METHODS: Semistructured interviews with 105 managers and 22 IFs, collected for a realist process evaluation across four European countries informed this study. An interpretive data analysis unpacks interactions between managerial leaders and IFs. RESULTS: This study identified three themes that were important in the interactions between managerial leaders and IFs that could hinder or support the implementation process: "realising commitment"; "negotiating conditions"; and "encouragement to keep momentum going." The findings revealed that the continuous reciprocal relationships between IFs and managerial leaders influenced the progress of implementation, and could slow the process down or disrupt it. A metaphor of crossing a turbulent river by the "building of a bridge" emerged as one way of understanding the findings. LINKING EVIDENCE TO ACTION: Our findings illuminate a neglected area, the effects of relationships between key staff on implementing evidence into practice. Relational aspects of managerial and clinical leadership roles need greater consideration when planning guideline implementation and practice change. In order to support implementation, staff assigned as IFs as well as stakeholders like managers at all levels of an organisation should be engaged in realising commitment, negotiating conditions, and keeping momentum going. Thus, communication is crucial between all involved.

Measuring compassionate care: views of healthcare staff.

Aim To explore healthcare professionals' views of measuring compassionate care. Method As part of a grounded theory study participants, who were healthcare professionals involved in the care of patients with type 2 diabetes, were invited to discuss the topic of compassionate care measurement through semi-structured interviews and focus groups. Results Measuring compassionate care was regarded as problematic because of its complex nature. Categories identified in the data that reflect this difficulty include distinguishing compassionate care from other concepts, relying on informal indicators, making the subjective objective, incorporating external influences and putting a measurement tool to use. Conclusion Findings highlighted the complexities associated with measuring compassionate care, and how attempts to do this by managers could be problematic.

Patients' experiences of technology and care in adult intensive care.

AIMS: To investigate patients' experiences of technology in an adult intensive care unit. BACKGROUND: Technology is fundamental to support physical recovery from critical illness in Intensive Care Units. As well as physical corollaries, psychological disturbances are reported in critically ill patients at all stages of their illness and recovery. Nurses play a key role in the physical and psychological care of patients;, however, there is a suggestion in the literature that the presence of technology may dehumanise patient care and distract the nurse from attending to patients psychosocial needs. Little attention has been paid to patients' perceptions of receiving care in a technological environment. DESIGN: This study was informed by Heideggerian phenomenology. METHODS: The research took place in 2009-2011 in a university hospital in England. Nineteen participants who had been patients in ICU were interviewed guided by an interview topic prompt list. Interviews were transcribed verbatim and analysed using Van Manen's framework. FINDINGS: Participants described technology and care as inseparable and presented their experiences as a unified encounter. The theme 'Getting on with it' described how participants endured technology by 'Being Good' and 'Being Invisible'. 'Getting over it' described why participants endured technology by 'Bowing to Authority' and viewing invasive technologies as a 'Necessary Evil'. CONCLUSION: Patients experienced technology and care as a series of paradoxical relationships: alienating yet reassuring, uncomfortable yet comforting, impersonal yet personal. By maintaining a close and supportive presence and providing personal comfort and care nurses may minimize the invasive and isolating potential of technology.

Exploring the value of qualitative research films in clinical education.

BACKGROUND: Many healthcare professionals use both quantitative and qualitative research to inform their practice. The usual way to access research findings is through peer-reviewed publications. This study aimed to understand the impact on healthcare professionals of watching and discussing a short research based film. The film, 'Struggling to be me' portrays findings from a qualitative synthesis exploring people's experiences of chronic pain, and was delivered as part of an inter-professional postgraduate e-learning module. The innovation of our study is to be the first to explore the impact of qualitative research portrayed through the medium of film in clinical education. METHODS: All nineteen healthcare professionals enrolled on the course in December 2013 took part in on-line interviews or focus groups. We recorded and transcribed the interviews verbatim and used the methods of Grounded Theory to analyse the interview transcripts. RESULTS: Watching and discussing the film became a stimulus for learning : (a) A glimpse beneath the surface explored a pro-active way of seeing the person behind the pain (b) Pitfalls of the Medical Model recognised the challenge, for both patient and clinician, of 'sitting with' rather than 'fixing' an ill person; (c) Feeling bombarded by despair acknowledged the intense emotions that the clinicians brings to the clinical encounter; (d) Reconstructing the clinical encounter as a shared journey reconstructed the time-constrained clinical encounter as a single step on a shared journey towards healing, rather than fixing. CONCLUSIONS: Films portraying qualitative research findings can stimulate a pro-active and dialectic form of knowing. Research-based qualitative films can make qualitative findings accessible and can be a useful resource in clinical training. Our research presents, for the first time, specific learning themes for clinical education.

'Well, who do I phone?' Preparing for urgent care: a challenge for patients and service providers alike'.

AIMS AND OBJECTIVES: To investigate factors influencing patients' self-management of urgent diabetes problems that precipitated unscheduled hospital care. BACKGROUND: Diabetes is placing increasing resource demands on health services and current policy advocates management in primary care and community settings whenever possible. Such policy has implications for patient education and empowerment and on mechanisms within primary and community care to support the management of diabetes when urgent healthcare problems arise. DESIGN: Qualitative, descriptive investigation, across two contrasting sites. METHODS: Forty-five people admitted to hospital for urgent/emergency care due to diabetes-related problems were recruited from urban and rural localities in the UK. Semi-structured interviews were conducted and data analysed using nvivo version 8 and framework techniques. RESULTS: Self-management of diabetes was typically habitual, and urgent problems that proved difficult to resolve necessitated recourse to unscheduled hospital care. Though skills relating to problem-solving, decision-making, resource use and formation of patient-provider partnerships were evident among some participants, these required further development. Evidence of action planning or self-tailoring skills was sparse. CONCLUSIONS: Education plays an important role in assisting individuals to self-manage their diabetes on a daily basis, but urgent, unexpected health problems proved challenging for both patients and health service providers. A greater focus on empowering patients with core self-management skills is required to enhance ability to successfully manage unexpected diabetes complications, coupled with enhanced primary care resources, particularly out-of-hours. RELEVANCE TO CLINICAL PRACTICE: The importance of informal and structured diabetes education should not be underestimated; however, the challenge of improving skills such as problem-solving to manage urgent healthcare needs must be tackled. This study provokes debate regarding how best to deliver appropriate education and health services to cover urgent unscheduled care needs without automatically referring to emergency department hospital care.

Meta-ethnography 25 years on: challenges and insights for synthesising a large number of qualitative studies.

Studies that systematically search for and synthesise qualitative research are becoming more evident in health care, and they can make an important contribution to patient care. Our team was funded to complete a meta-ethnography of patients' experience of chronic musculoskeletal pain. It has been 25 years since Noblit and Hare published their core text on meta-ethnography, and the current health research environment brings additional challenges to researchers aiming to synthesise qualitative research. Noblit and Hare propose seven stages of meta-ethnography which take the researcher from formulating a research idea to expressing the findings. These stages are not discrete but form part of an iterative research process. We aimed to build on the methods of Noblit and Hare and explore the challenges of including a large number of qualitative studies into a qualitative systematic review. These challenges hinge upon epistemological and practical issues to be considered alongside expectations about what determines high quality research. This paper describes our method and explores these challenges. Central to our method was the process of collaborative interpretation of concepts and the decision to exclude original material where we could not decipher a concept. We use excerpts from our research team's reflexive statements to illustrate the development of our methods.