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.

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.

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.

"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.

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.

"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.

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.

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.

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

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.

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).

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.

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.

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.

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.

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.

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.

'Doing the "right" thing': how parents experience and manage decision-making for children's 'normalising' surgeries.

Using cleft lip and palate as an exemplar, this article examines parents' decision-making for children in the context of elective treatments which aim to 'normalise' a child's function, appearance, communication or identity. Using purposive and theoretical sampling, 35 parents with children from infancy to young adulthood were recruited through a specialist cleft centre in England. Parents were interviewed in-depth between 2006 and 2008 about their beliefs and motivations in relation to treatment decision-making in this context.

Parents' emotional and social experiences of caring for a child through cleft treatment.

Little is known about the experiences of parents caring for a child through long-term treatment for cleft lip and/or cleft palate. We conducted in-depth interviews with 35 parents with children between the ages of 20 weeks and 21 years to explore experiences across the treatment program. We analyzed the data using a constructivist grounded theory approach and present in detail in this article one subcategory from the analysis: managing emotions.

Shared decision making or paternalism in nursing consultations? A qualitative study of primary care asthma nurses' views on sharing decisions with patients regarding inhaler device selection.

Background: Although patients with asthma would like more involvement in the decision-making process, and UK government policy concerning chronic conditions supports shared decision making, it is not widely used in practice.

Objective: To investigate how nurses approach decision making in relation to inhaler choice and long-term inhaler use within a routine asthma consultation and to better understand the barriers and facilitators to shared decision making in practice.

Setting And Participants: Semi-structured interviews were conducted with post-registration, qualified nurses who routinely undertook asthma consultations and were registered on a respiratory course.

National survey of the current provision of specialist palliative care services for patients with end-stage renal disease.

Background: Patients with end-stage renal disease (ESRD) experience a significant symptom burden and have complex needs. However, involvement of specialist palliative care (SPC) services with these patients has previously been shown to be limited. This study assesses the current provision of and access to SPC services for ESRD patients in the UK and considers how the provision has evolved over recent years.

Exploring differences in referrals to a hospice at home service in two socio-economically distinct areas of Manchester, UK.

In order to provide equitable access to hospice at home palliative care services, it is important to identify the socio-economic factors associated with poorer access. In this population-based study we aimed to test the inverse care law by exploring how socio-economic status and other key demographic indicators were associated with referral rates in two distinct areas (Salford and Trafford) served by the same service. Secondary data from the UK National Census 2001, North West Cancer Intelligence Service (2004) and hospice at home service referral data (2004-06) was collated for both areas.