Exploring the Impact of Bereavement During the COVID-19 Pandemic on Children and Young People: A Scoping Review.

Experiencing bereavement as a child or young person (CYP) can have long-lasting effects. The societal and environmental burdens of the SARS-CoV-2 pandemic exacerbated the experience of loss and grief for many CYP, who were unable to access their usual the support networks. However, it is still unclear what is currently known and not known about the experiences of CYP bereaved during the SARS-CoV-2 pandemic. This review used the framework of Arksey and O'Malley and included five stages: (1) identifying the research question; (2) identifying relevant studies; (3) study selection; (4) charting the data; (5) collating, summarizing, and reporting the results. The methodological quality of the included studies was also assessed using the Critical Appraisal Skills Programme tool. The PRISMA framework was used for reporting the results. The electronic databases Medline, PsychINFO, CINAHL, and PubMed were searched for relevant articles. A total of three papers meeting the inclusion criteria were included in this review and two main themes identified: (1) support (which included sub-themes; social isolation and the impact on support; support from family and friends; wider support networks); (2) Emotional impact of bereavement during a pandemic. Access to support networks is crucial for CYP to understand and process their emotions relating to their bereavement experience. The pandemic meant that many usual support networks such as family and friends were inaccessible to CYP, who struggled to deal with their experience of grief during this time. Schools are a valuable support mechanism and can help CYP understand their emotions through open discussions about their bereavement. The limited empirical evidence currently available in this area of research demonstrates an important need to further understanding of the long-term impacts of dealing with pandemic-related loss in childhood.

Pelvic vein incompetence and chronic pelvic pain: a case-control study.

OBJECTIVE: To investigate the association between chronic pelvic pain (CPP) and pelvic vein incompetence (PVI) or pelvic varices. DESIGN: Case-control study. SETTING: Gynaecology and vascular surgery services in two teaching hospitals in north-west England. SAMPLE: A total of 328 premenopausal women (aged 18-54 years), comprising 164 women with CPP and 164 matched controls with no history of CPP. METHODS: Symptom and quality-of-life questionnaires and transvaginal duplex ultrasound for PVI and pelvic varices. MAIN OUTCOME MEASURES: Venous reflux of >0.7 s in the ovarian or internal iliac veins (primary outcome) and presence of pelvic varices (secondary outcome). Statistical analysis compared the prevalence of PVI between women with and without CPP using the two-sided chi-square test. Logistic regression was used to compare the odds of having PVI and pelvic varices between women with and without CPP. RESULTS: Pelvic vein incompetence was found on transvaginal duplex ultrasound in 101/162 (62%) women with CPP, compared with 30/164 (19%) asymptomatic controls (OR 6.79, 95% CI 4.11-11.47, p < 0.001). Forty-three of 164 (27%) women with CPP had pelvic varices compared with three of 164 (2%) asymptomatic women (OR 18.9, 95% CI 5.73-62.7, p < 0.001). CONCLUSIONS: There was a significant association between PVI, as detected by transvaginal duplex imaging, and CPP. Pelvic varices were strongly associated with CPP and were infrequently seen in control patients. These results justify further evaluation of PVI and its treatment in well-designed research.

Transvenous occlusion of incompetent pelvic veins to treat chronic pelvic pain in women: A randomised controlled trial.

OBJECTIVE: To investigate the effectiveness of transvenous occlusion of incompetent pelvic veins in women presenting with chronic pelvic pain (CPP) in improving symptoms and quality of life. DESIGN: Patient-blinded randomised controlled trial with objective outcome measures. Results were analysed on an intention-to-treat basis. SETTING: Gynaecology and Vascular Surgery Services of two teaching hospitals in northwest England. POPULATION: Sixty women aged 18-54 years presenting with CPP after exclusion of other pathology, and who were found to have pelvic vein incompetence. METHODS: Participants were randomised and assigned to contrast venography alone or contrast venography plus transvenous occlusion of the incompetent pelvic veins. MAIN OUTCOME MEASURE: The primary outcome was change in pain score measured using the short-form McGill Pain Score (SF-MPQ) and the Visual Analogue Score (VAS) recorded at 12 months post-randomisation. Secondary outcomes included quality of life using the EQ-5D instrument, symptomatic improvement and procedure-related complications. RESULTS: Sixty participants were randomised to transvenous occlusion of incompetent pelvic veins or venography only. At 12 months, median pain scored 2 (3-10) in the intervention group versus 9 (5-22) in controls (p = 0.016). Pain on the VAS scored 15 (0-3) versus 53 (20-71), respectively (p = 0.002). Median EQ-5D improved after intervention from 0.79 (0.74-0.84) to 0.84 (0.79-1.00; p = 0.008) over 12 months. No major complications were reported. CONCLUSION: Transvenous occlusion of pelvic vein incompetence reduced pain scores, improved quality of life and diminished symptom burden with no major reported complications. TRIAL REGISTRATION: ISRCTN 15091500.

"Body as a Machine": How Adolescents With Sickle Cell Disease Construct Their Fatigue Experiences.

Research exploring illness experiences of young people with sickle cell disease (SCD) has, to date, ignored fatigue, despite the distinctive anemic nature of SCD. To examine adolescents with SCD fatigue experiences, we conducted narrative and picture-elicitation interviews with 24 adolescents in Ghana. A grounded theory, "body as a machine," was constructed from the narratives. Fatigue represented the most restrictive and disruptive aspect of growing up with SCD. Its meaning and significance laid in what it symbolized. Fatigue represented a socially undesirable feature that was stigmatizing, due to the expectations of high physicality in adolescence. Fatigue was therefore a major threat to "normalcy." The social significance of the physical body and its capacities shaped the adolescents' fatigue experiences. Managing fatigue to construct/maintain socially acceptable identities dominated the adolescents' lives. Consequently, there is a need for a recognition of the significance of fatigue to adequately support young people growing up with SCD.

Recommendations for Developing Support Tools With People Suffering From Chronic Obstructive Pulmonary Disease: Co-Design and Pilot Testing of a Mobile Health Prototype.

BACKGROUND: Gaps exist between developers, commissioners, and end users in terms of the perceived desirability of different features and functionalities of mobile apps. OBJECTIVE: The objective of this study was to co-design a prototype mobile app for people with chronic obstructive pulmonary disease (COPD). We present lessons learned and recommendations from working on a large project with various stakeholders to develop a mobile app for patients with COPD. METHODS: We adopted a user-centered, participatory approach to app development. Following a series of focus groups and interviews to capture requirements, we developed a prototype app designed to enable daily symptom recording (experience sampling). The prototype was tested in a usability study applying the think aloud protocol with people with COPD. It was then released via the Android app store, and experience sampling data and event data were captured to gather further usability data. RESULTS: A total of 5 people with COPD participated in the pilot study. Identified themes include familiarity with technology, appropriate levels for feeding back information, and usability issues such as manual dexterity. Moreover, 37 participants used the app over a 4-month period (median age 47 years). The symptoms most correlated to perceived well-being were tiredness (r=0.61; P<.001) and breathlessness (r=0.59; P<.001). CONCLUSIONS: Design implications for COPD apps include the need for clearly labeled features (rather than relying on colors or symbols that require experience using smartphones), providing weather information, and using the same terminology as health care professionals (rather than simply lay terms). Target users, researchers, and developers should be involved at every stage of app development, using an iterative approach to build a prototype app, which should then be tested in controlled settings as well as in the wild (ie, when deployed and used in real-world settings) over longer periods.

Introducing a model for emotional distress in respiratory disease: A systematic review and synthesis of symptom management models.

AIM: To undertake a theoretical systematic review to develop a conceptual model of illness-related emotional distress in the context of symptom management in chronic respiratory disease. DESIGN: We performed a systematic search to identify conceptual models. DATA SOURCES: Electronic databases MEDLINE, CINAHL, EMBASE and PsycINFO were searched and papers included from inception of the search term until June 2017. REVIEW METHODS: The review was conducted following Pound and Campbell's and Turner's theory synthesis. Conceptual models were appraised using Kaplan's criteria. Models were excluded if they referred to a specific condition and/or lacked clarity. RESULTS: This synthesis, which includes five models and additional evidence, yielded a new conceptual model describing the processes of regulation and symptom self-management in chronic respiratory disease. Identified sources of illness-related emotional distress are new or increased symptoms, additional treatment, new restrictions in performance of daily life roles and increased unpredictability. People goals and self-efficacy were identified as further drivers of symptom self-management. The regulation process is embedded in contextual factors. CONCLUSION: Theory synthesis provided transparent guidance in developing a model to understand of the factors driving self-management decisions. Therefore, the model has the potential to guide development of interventions that support symptom self-management in chronic respiratory disease. IMPACT: This newly presented conceptual model of illness-related emotional distress provides an understanding of the factors that drive self-management decisions when peoples experience new or increased symptoms. Such understanding is critical for nursing practice to developing appropriate interventions, especially in support of people decision-making.

"Thrust out of normality"-How adults living with cystic fibrosis experience pulmonary exacerbations: A qualitative study.

AIM AND OBJECTIVES: To explore the experience of pulmonary exacerbation from the perspective of adults with cystic fibrosis. BACKGROUND: While management of pulmonary exacerbations is a pillar of cystic fibrosis care, little is known of patients' perspectives. Understanding the patient's experience is essential for developing and evaluating interventions in support of patient self-management. DESIGN: Qualitative study with longitudinal study in a subsample. METHODS: The study took place from 2015-2016 in a university hospital. Eighteen patients with cystic fibrosis were included who were ≥18 years of age and had no solid organ transplant. Patients' experiences were explored through semistructured interviews and analysed using framework analysis. They each participated in one interview, with a subsample (N = 7) being interviewed twice during and once after antibiotic therapy. RESULTS: Patients (11 men and 7 women; median age 29.5 years, range 19-55 years; median FEV1 45%, range FEV1 23%-105%) experienced pulmonary exacerbations as disruptions of their normality, which led to a substantial increase in their emotional distress. Exacerbations represented a period of threat and domination by CF; that is, symptoms and treatment consumed energy, restricted physical activity and daily life roles. "Noting change," "waiting until antibiotics help," "returning to normality" and "establishing a new normality" characterised their descriptions of the pulmonary exacerbation trajectory. Emotional distress was the major driver for patients' self-management, and personal goals and illness beliefs influenced also patients' self-management decisions. CONCLUSION: The experienced degree and source of emotional distress are drivers for self-management decisions in patients with cystic fibrosis who experience a pulmonary exacerbation. RELEVANCE TO CLINICAL PRACTICE: Our data provide new understanding that will be essential to informing clinical practice, future patient-reported outcomes measures and intervention development.

Patient-Reported Outcome Measures for Symptom Perception During a Cystic Fibrosis Exacerbation.

BACKGROUND: Symptom burden increases during pulmonary exacerbations of cystic fibrosis (CF), and patient-reported outcome measures (PROMs) are often used to evaluate symptoms as either primary or secondary outcomes. However, there is currently no guidance on the use of PROMs to assess symptom burden during pulmonary exacerbations. METHODS: A systematic literature search was conducted to identify PROMs measuring symptom experience, management, or influencing factors, which were developed for CF patients and had been used at least once during pulmonary exacerbations. The PROMs included were assessed for relevance and psychometrics, according to the criteria of the United States FDA guideline and the Consensus-Based Standards for the Selection of Health Measurement Instruments (COSMIN) checklist. RESULTS: Five PROMs were identified, all measuring symptom perception. The CF Respiratory Symptom Diary (CFRSD) and the Symptom Scoring System were developed to assess symptom severity during pulmonary exacerbations. Of the other 3, which also included symptom scores of 2 quality of life measures, one assessed symptom severity exclusively, and 2 measured symptom severity in addition to other dimensions (such as symptom distress). All 5 instruments measured respiratory symptoms. Other relevant symptoms, such as energy and emotions, were covered by 4 instruments; pain and gastrointestinal symptoms were covered by 2 measures. All of the instruments demonstrated good internal consistency and sensitivity to change over a period up to 4 weeks. The symptom scores of the 2 quality of life measures with longer recall periods are not suitable for measuring assessed changes in a period of < 2 weeks. Criterion validity for gastrointestinal subscores has not been established. Discriminant validity was established in all of the instruments reviewed except for the Symptom Score System. CONCLUSIONS: Of the current PROMs used during CF pulmonary exacerbations, only 2 have been developed for this purpose, and only the CFRSD fulfilled all FDA guideline criteria. To date, there is no instrument that assesses exacerbation-specific symptom distress.

Adolescents' experiences of living with sickle cell disease: An integrative narrative review of the literature.

BACKGROUND: Sickle Cell Disease is the commonest monogenic haemoglobinopathy worldwide. Living with a long-term condition such as sickle cell disease during adolescence constitutes a significant challenge for the key stakeholders due to the combined effects of chronic illness and adolescent development. For adolescents with sickle cell disease to be cared for and supported appropriately and effectively, it is crucial that health professionals have a comprehensive knowledge and understanding of how adolescents experience living with the condition. While there is developing literature about how adolescent's experience sickle cell disease, this body of research has not been critically reviewed and synthesised. OBJECTIVE: To identify, critically appraise and synthesise primary research exploring adolescents' experiences of living with sickle cell disease to make recommendations for practice and research. DESIGN: Integrative narrative review. DATA SOURCES: A systematic search of 10 electronic databases and key journals was conducted to identify studies from the inception of databases to September 2016. REVIEW METHOD: Inclusion criteria: adolescents with sickle cell disease aged 12-19 years, primary data on adolescents' own perspectives, and published in English. Data were extracted on study contexts, methodology/design, theoretical constructs, participants, and key findings. Findings from included studies were synthesised using the integrative narrative approach. Additionally, the methodological quality of studies was assessed using the Hawker et al. (2002) appraisal checklist. RESULTS: 683 studies were identified, of which 40 fulfilled the inclusion criteria. Nine broad themes emerged: knowledge and understanding of the condition, symptom experiences, self-management, attitude to treatment, healthcare experiences, social relationships, difference and striving for normality, school experiences, and emotional well-being and coping. Majority of the studies were of moderate quality methodologically. Quality assessment demonstrated a high risk of bias in three studies. CONCLUSIONS: Sickle cell disease impacts on multiple facets of an adolescent's life. While there are similarities in the experience of living with sickle cell disease and living with other chronic illnesses, there are essential differences in relationship dynamics and healthcare experience. The adolescents expressed less confidence in generic healthcare providers. The review highlights areas relating to symptom management and health service provision that has been under-researched and need further exploration to understand adolescents' experiences and their support needs fully. Nursing care and research should focus more on adolescents' developmental wellbeing, promote peer support network among adolescents with the condition and with adolescents with other chronic illnesses and collaborate with adolescents to ensure service development are developmentally and culturally appropriate.

Exploring the perspectives of clinical professionals and support staff on implementing supported self-management for asthma in UK general practice: an IMP2ART qualitative study.

Despite an overwhelming evidence base, supported self-management of asthma is poorly implemented into routine practice. Strategies for implementation must address organisational routines, as well as provide resources for patients and training to improve professionals' skills. We aimed to explore the priority that primary care practices attach to asthma self-management, to describe their existing asthma management routines, and to generate innovative implementation strategies. We recruited 33 participants (23 general practitioners; seven nurses; three administrative staff) from 14 general practices. The 12 interviews and three focus groups were transcribed, coded and analysed thematically. Supported self-management was largely a nurse-led task within clinic-based annual reviews. Barriers included poor attendance at asthma clinics, lack of time, demarcation of roles, limited access to a range of tailored resources, and competing agendas in consultation, often due to multimorbidity. Suggestions for initiatives to improve the provision of supported self-management included emphasising the evidence for benefit (to influence prioritisation), improving teamwork (including team-based education), organisational strategies (including remote consulting) which need to fit within existing practice routines. Technology offers some potential solutions (e.g., improved templates, 'app'-based plans), but must be integrated with the practice information technology systems. Building on these insights, we will now develop a theoretically-based implementation strategy that will address patient, professional, and organisational buy-in, provide team-based education and offer a range of practical options and tools, which can be adapted and integrated within existing routines of individual practices.OVERCOMING THE ORGANISATIONAL BARRIERS TO IMPLEMENTING ASTHMA SELF-MANAGEMENT: Understanding the routines of primary care practices can suggest strategies to implement supported self-management in general practice. Supported self-management of asthma including provision of individual action plans improves patient health and reduces the burden on healthcare services, but is not well implemented in routine practice. As part of a large-scale programme to implement self-management into UK general practice, Hilary Pinnock at the University of Edinburgh and co-workers conducted interviews and focus groups with 33 participants from 14 general practices to explore the organisational routines that hinder or enable professionals to provide support asthma self-management. Poor attendance at asthma clinics, demarcation of roles, lack of time and limited access to tailored resources were identified as specific barriers. Improvements suggested included improved teamwork between doctors and other medical healthcare professionals, comprehensive training, and improvements to IT systems.

Principles for discharging patients from acute care: a scoping review of policy.

BACKGROUND: Acute medicine units (AMUs) are part of acute hospital care, where length of patient stay is short and turnover is high. Expediting patient discharge safely is a major function of AMUs, which need up-to-date bespoke guidance. AIM: To carry out a scoping review of UK discharge policy to critically consider, compare and contrast the relevant discharge policies and guidance that underpin the assessment of acute patient discharge. OBJECTIVES: To inform the production of bespoke patient discharge guidance for AMUs. Design and stages: Identify the review questions; identify relevant studies; select the studies; chart the data; collate, summarise and report the results. FINDINGS: 28 patient discharge policy guidelines were identified that had no specific guidance for patient discharge from AMUs. New bespoke principles for AMUs were created through a pragmatic interpretation of current relevant policies. CONCLUSION: There is a gap in specific patient discharge guidance for AMUs. New guidance should contribute in practice to improve patient discharge.

A study of attitudes, beliefs and organisational barriers related to safe emergency oxygen therapy for patients with COPD (chronic obstructive pulmonary disease) in clinical practice and research.

BACKGROUND: Patients can be harmed by receiving too little or too much oxygen. There is ongoing disagreement about the use of oxygen in medical emergencies. METHODS: This was a mixed methods study (survey, telephone interviews and focus groups) involving patients, the public and healthcare professionals (HCPs). RESULTS: 62 patients with chronic obstructive pulmonary disease (COPD), 65 members of the public, 68 ambulance crew members, 22 doctors, 22 nurses and 10 hospital managers took part. For five factual questions about oxygen therapy, the average score for correct answers was 28% for patients with COPD, 33% for the general public and 75% for HCPs. The HCPs had an average score of 66% for five technical questions. Patients (79%) and members of the public (68%) were more likely than HCPs (36%) to believe that oxygen was beneficial in most medical emergencies and less likely to have concerns that it might harm some people (35%, 25% and 68%). All groups had complex attitudes about research into oxygen use in medical emergencies. Many participants would not wish for themselves or their loved ones to have their oxygen therapy determined by a randomised protocol, especially if informed consent was not possible in an emergency situation. CONCLUSIONS: We have found low levels of factual knowledge about oxygen use among patients with COPD and the general public and many false beliefs about the potential benefits and harms of using oxygen. HCPs had a higher level of factual knowledge. All groups had complex attitudes towards research into emergency oxygen use.

Is pelvic vein incompetence associated with symptoms of chronic pelvic pain in women? A pilot study.

OBJECTIVE: Pelvic vein incompetence (PVI) affects 15-20% of all women, yet we know little about how it affects sufferers. The aim of this prospective pilot study was to explore symptoms experienced by women with PVI, and determine its impact on quality of life and NHS costs. STUDY DESIGN: Case-control study at a UK University teaching hospital conducted over an eight-month period. Cases were 40 premenopausal women aged 18-49 years with PVI and varicose veins (VV). There were two age-matched controls groups: (i) 40 healthy women with no PVI but with VV, and (ii) 40 healthy women with no PVI and no VV. Subjects were asked to complete a structured questionnaire on disease specific outcomes, health status and use of healthcare resources. RESULTS: Mean age (range) was 39.8 (24-47) years for cases, 39.1 (24-49) for VV controls and 38 (25-49) for healthy controls. Pelvic pain was reported by 38 of 40 (95%) PVI cases, compared with 25 of 40 (62%) VV controls, and 26 of 40 (65%) healthy controls (p=0.001). The median (range) EQ-5D utility score for PVI cases was 0.80 (0.29-1.0) compared with 0.80 (0.09-1.0) for VV controls and 1.0 (0.62-1.0) for healthy controls (p=0.002). Of the 40 PVI cases, 35 (88%) visited a consultant in the previous 12 months compared with 12 of 40 (30%) VV controls, and 14 of 40 (35%) healthy controls (p<0.001). CONCLUSIONS: Women with PVI report a greater frequency of pelvic pain with reduced health status and increased use of healthcare resources compared with matched controls.

Trans-venous occlusion of incompetent pelvic veins for chronic pelvic pain in women: a systematic review.

Chronic pelvic pain (CPP) affects 24% of women worldwide; the cause cannot be identified in 40% despite invasive investigations. Dilated, refluxing pelvic veins may be a cause of CPP and treatment by trans-venous occlusion is increasingly performed when gynecological causes are excluded, but is it effective? A systematic review of the literature published between 1966 and July 2014 was conducted. Two authors independently reviewed potential studies according to a set of eligibility criteria, with a third assessor available as an arbiter. Thirteen studies including 866 women undergoing trans-venous occlusion of pelvic veins for CPP were identified (Level of evidence: one study grade 2b, 12 studies grade four). Statistical significant improvements in pelvic pain were reported in nine of the 13 studies. Technical success was reported in 865 of 866 (99.8%) with low complication rates: coil migration in 14 women (1.6%), abdominal pain in ten women (1.2%) and vein perforation in five (0.6%). In a study on varicose veins of the legs, recurrence was seen in 13% of 179 women 5-years following coil embolization. Subjective improvements in pain were seen in all 13 studies after treatment by trans-venous occlusion. All 13 studies were of poor methodological quality. Complication rates were low and no fatalities occurred. Well-designed studies are essential to determine whether pelvic vein incompetence (PVI) is associated with CPP, and to explore whether trans-venous occlusion of PVI improves quality of life for these women.

Perceptions, experiences and needs of patients with idiopathic pulmonary fibrosis.

AIMS: To understand the perceptions, needs and experiences of patients with Idiopathic Pulmonary Fibrosis. BACKGROUND: Idiopathic pulmonary fibrosis is a progressive interstitial lung disease, with a mean life expectancy similar to some forms of cancer of 2-4 years from diagnosis. Unlike the cancer literature, which is rich with studies exploring the needs of their disease group, few publications exist on patient needs with this severe fibrotic lung disease. DESIGN: A Qualitative study which took place between 2007-2012. METHODS: Seventeen patients with a multidisciplinary team confirmed diagnosis of Idiopathic Pulmonary Fibrosis, with moderate to advanced disease severity and six of their informal carers were interviewed. An interview topic guide was developed by the researchers and service user group. The interviews were audio-recorded, semi-structured and took place at a regional respiratory and lung transplant centre in North West England. Interviews were transcribed verbatim and data analysed using Framework Analysis. FINDINGS: Three main themes were identified: 'Struggling to get a diagnosis'; 'Loss of the life I previously had'; and 'Living with Idiopathic Pulmonary Fibrosis'. Patients reported struggling to get a diagnosis and coping with a life-limiting, rapidly progressive illness with no good treatment and few support structures. CONCLUSIONS: There is an urgent need for a better understanding of the difficulties faced by people with Idiopathic Pulmonary Fibrosis and their carers. This can be used to develop better supportive care in the United Kingdom and ultimately improve the quality of life of these patients.

Referral and management options for patients with chronic kidney disease: perspectives of patients, generalists and specialists.

BACKGROUND: Chronic Kidney Disease (CKD) is increasing in prevalence and significance as a global public health issue. Appropriate management of CKD stages 3-4 in either generalist or specialist care is essential in order to slow disease progression. As various consulting options between services may be used, it is important to understand how patients and practitioners view these options. OBJECTIVE: To elicit patient and practitioner views and preferences on the acceptability and appropriateness of referral practices and consulting options for CKD stage 3-4. DESIGN: A mixed methods approach involving a semi-structured interview and structured rating exercise administered by telephone. SETTING & PARTICIPANTS: Adult (18+) patients with CKD stage 3-4 were recruited via their General Practitioner (GP). Practitioners were recruited from both general and specialist services. RESULTS: Sixteen patients and twenty-two practitioners participated in the study between July and September, 2011. Both patients and practitioners preferred 'GP with access to a specialist' and least preferred 'Specialist Review'. Computer review and telephone review were acceptable to participants under certain conditions. Practitioners favoured generalist management of patients with CKD 3. Specialists recommended active discharge of patients with stabilised stage 4 back to generalist care. Both generalists and specialists strongly supported sharing patients' medical records via electronic consultation systems. CONCLUSION: Participants tended to prefer the current model of CKD management. Suggested improvements included; increasing the involvement of patients in referral and discharge decisions; improving the adequacy of information given to specialists on referral and encouraging further use of clinical guidelines in practice.

Living with encapsulating peritoneal sclerosis (EPS): the patient's perspective.

BACKGROUND: Although relatively rare, encapsulating peritoneal sclerosis (EPS) is nonetheless a major concern within the renal community. Risk of developing EPS is associated with long-term peritoneal dialysis (PD). High mortality was previously reported, although surgery has since improved outcomes. Research into EPS focuses on imaging and early detection methods, genetics, biomarkers and preventive strategies. No previous studies have examined patients' experiences of EPS. AIMS: The aim of the present study was to explore the experience of patients who have undergone surgery for EPS in one center in the North of England. METHODS: A qualitative phenomenological approach, involving in-depth interviews, was adopted. Nine participants were recruited out of a total of 18 eligible. Most participants were interviewed twice over a 12-month period (October 2009 to October 2010). ANALYSIS: Interpretive data analysis was conducted, following the philosophical tradition of hermeneutics, to draw out themes from the data. Data collection and analysis took place concurrently and participants were sent a summary of their first interview to allow a period of reflection prior to the subsequent interview. RESULTS: EPS presented the most serious challenge participants had faced since developing chronic kidney disease (CKD). Three major themes were identified, each with subcategories. The key issues for patients were related to identification of early symptoms and lack of understanding. The patients' sense of 'not being heard' by health care professionals led to a loss of trust and enhanced their feelings of uncertainty. The enormity of the surgery, the suffering, and what they had to endure had an enormous impact, but an overriding aspect of this experience was also the loss they felt for their independence and for the PD therapy over which they had control. CONCLUSIONS: The findings of this study highlight a number of important issues relevant to clinical practice, including lack of information and understanding of EPS, particularly its early symptoms At the time patients transfer from peritoneal to hemodialysis, the provision of adequate information about the risks and potential early signs of EPS may not only improve their experiences, but may also assist in early detection.

Understanding the experience of patients with chronic obstructive pulmonary disease who access specialist palliative care: a qualitative study.

BACKGROUND: Palliative care for people with life-limiting non-malignant disease is increasingly prioritised. People with end-stage chronic obstructive pulmonary disease are among a key group of non-cancer patients likely to benefit from specialist palliative care, but it remains uncertain whether the needs of this group are met by existing services. AIM: To evaluate the experiences of patients with chronic obstructive pulmonary disease who accessed specialist palliative care. DESIGN: Data from semi-structured interviews were analysed using a hermeneutic phenomenological approach. SETTING/PARTICIPANTS: Eight patients accessing specialist palliative care within one city in North West England. RESULTS: Perceived benefits of specialist palliative care included reduced frequency of hospital admission, improved physical and psychological symptoms, reduced social isolation and a broadened physical environment. Participants were mainly aware of their poor prognosis, but discussion of referral to palliative care sometimes caused distress owing to the historical associations between dying and hospice care. Following engagement with services, participants' perceptions changed: palliative care was associated with social inclusion and opportunities to engage in reciprocal and altruistic social action. Negative associations were replaced by uncertainty and anxiety about the prospect of discharge. CONCLUSIONS: Much within existing services works well for people with chronic obstructive pulmonary disease, but opportunities to enhance palliative care for this underserved group remain. Future research might focus on prospectively evaluating the impact of key components of palliative care on core patient-centred outcomes. Additionally, work must be done to raise awareness of the benefits of specialist palliative care for non-cancer patients, as negative associations can form a barrier to access.