Developing and testing a toolkit of interventions to improve adherence to non-invasive ventilation in children: the SPIRITUS study protocol.

Introduction: Non-invasive ventilation (NIV) is a known effective and safe treatment for children and young people with sleep disordered breathing (SDB). Adherence can be challenging and poor adherence risks undertreatment of SDB. While the risk factors for non-adherence have been widely reported, very few interventions have been tested in any capacity to address barriers to adherence.

How do GPs communicate the urgent suspected cancer referral pathway to patients? A qualitative study of GP-patient consultations.

Background: The UK National Institute for Health and Care (NICE) recommends that GPs inform patients referred onto the Urgent Suspected Cancer (USC) pathway about what to expect from the service. However, there is a lack of evidence on patient experience and information needs at the point of referral. It is a challenge for GPs to communicate the reasons for referral and provide reassurance.

Communicating effectively to patients about a cancer referral.

Background: The UK's National Institute for Health and Care Excellence (NICE) advises GPs to inform patients referred to the Urgent Suspected Cancer (USC) pathway about their impending service and expectations. However, little is known about patient experiences and information needs post-referral. GPs often grapple with conveying the urgency of referrals while offering reassurance.

Being a child with intellectual disabilities in hospital: The need for an individualised approach to care.

Background: There is limited qualitative research focussed specifically on what it is like for children and young people with intellectual disabilities coming into hospital, with much of the evidence-base being about those with Autism Spectrum Condition or adults with intellectual disabilities.

Aim: To share rich detail of the emotional and physical impact on children and young people with intellectual disabilities of attending hospital, from their own and their parent's perspective.

Methods: Talking Mats interviews, sticker survey and photography with children and young people with intellectual disabilities, and in-depth interviews, hospital diaries and photography with their parents.

Assessing awareness of blood cancer symptoms and barriers to symptomatic presentation: measure development and results from a population survey in the UK.

Background: Low levels of cancer awareness may contribute to delays in seeking medical help and subsequent delays in diagnosis. For blood cancer this may be a particularly prominent problem due to the high prevalence of undifferentiated symptoms such as bodily pain, weakness, nausea and weight loss, resulting in low symptom awareness. The delay is exacerbated by the dismissal of similar symptoms which are often interpreted as mild disease, resulting in multiple consultations prior to diagnosis.

The relationship between patient enablement and help-seeking in the context of blood cancer symptoms.

Objective: Approaches to improve earlier diagnosis of cancer often focus on symptom awareness as a key driver of help-seeking behaviour and other psychological influences are less well understood. This is the first study to explore the role of patient enablement on help-seeking for people experiencing potential blood cancer symptoms.

Methods: A cross-sectional, nationally representative survey was completed by 434 respondents (>18 years).

Chaplain reported plans for end-of-life care conversations: Role clarity for the spiritual care specialists.

The present study examined chaplain reported plans for patient conversations regarding end-of-life (EOL) care through the lens of multiple goals. Chaplains ( = 69) were asked to curate a plan for engaging with a patient about EOL treatment options, including how they would engage in the conversation and what they would plan to discuss. Findings indicated that plans primarily consisted of relational and identity goals, with a majority navigating multiple goal orientations.

Clinician perspectives on what constitutes good practice in community services for people with complex emotional needs: A qualitative thematic meta-synthesis.

Introduction: The need to improve the quality of community mental health services for people with Complex Emotional Needs (CEN) (who may have a diagnosis of 'personality disorder') is recognised internationally and has become a renewed policy priority in England. Such improvement requires positive engagement from clinicians across the service system, and their perspectives on achieving good practice need to be understood.

Aim: To synthesise qualitative evidence on clinician perspectives on what constitutes good practice, and what helps or prevents it being achieved, in community mental health services for people with CEN.

Service user perspectives of community mental health services for people with complex emotional needs: a co-produced qualitative interview study.

Background: There is consensus that services supporting people with complex emotional needs are part of a mental health care system in which change is needed. To date, service users' views and co-production initiatives have had little impact on the development of interventions and care. This needs to change, and our paper evidences the experiences and perspectives of a diverse range of people on how community services can best address the needs of people with complex emotional needs.

Sanctification of couple relationships and communal coping in married and cohabiting African American couples.

Throughout history, African Americans have endured much, and their experiences with discrimination and racism continue today. Despite ongoing challenges, African Americans have also shown their resilience. Religion and spirituality are two of the largest resources of resilience that African Americans employ.

Service user experiences of community services for complex emotional needs: A qualitative thematic synthesis.

Background: There is a recognised need to develop clear service models and pathways to provide high quality care in the community for people with complex emotional needs, who may have been given a "personality disorder" diagnosis. Services should be informed by the views of people with these experiences.

Aims: To identify and synthesise qualitative studies on service user experiences of community mental health care for Complex Emotional Needs.

A Multiple Goals Approach to Exploring Social Worker Conversational Plans for Advance Care Treatment with Terminally Ill Patients.

Social workers play an integral role in end-of-life planning and patient outcomes, and yet how social workers approach such conversations with patients is not well understood. The current study employed a cross-sectional design to examine social worker planned communication about end-of-life care using a multiple goals framework. Recruited from online listservs, a content analysis was conducted with social worker curated plans ( = 20) for end-of-life conversations.

Parents' responses to prognostic disclosure at diagnosis of a child with a high-risk brain tumor: Analysis of clinician-parent interactions and implications for clinical practice.

Background: Previous studies have found that parents of children with cancer desire more prognostic information than is often given even when prognosis is poor. We explored in audio-recorded consultations the kinds of information they seek.

Methods: Ethnographic study including observation and audio recording of consultations at diagnosis.

Learning disability nurse provision in children's hospitals: hospital staff perceptions of whether it makes a difference.

Background: In response to multiple United Kingdom investigations and inquiries into the care of adults with learning disabilities, Mencap produced the Getting it Right Charter which campaigned for the appointment of a Learning Disability Liaison Nurse in every hospital. More recent best practice guidelines from the Care Quality Commission included the need for all children's units to have access to a senior learning disability nurse who can support staff and help them manage difficult situations. However, little evidence exists of the extent of learning disability nurse provision in children's hospitals or the nature and impact of this role.

A mixed-methods evaluation of a Recovery College in South East Essex for people with mental health difficulties.

Recovery Colleges aim to assist people with mental health difficulties in the journey to recovery through education. They bring together professional and lived experience of mental health challenges in a non-stigmatising college environment and operate on college principles. All courses are designed to contribute towards well-being and recovery.

To flag or not to flag: Identification of children and young people with learning disabilities in English hospitals.

Background: Children and young people with learning disabilities experience poor health outcomes and lengthier hospital admissions than those without learning disabilities. No consistently applied, systematic approach exists across the NHS to identify and record this population. This paper describes practices in English hospitals to identify children and young people with learning disabilities.

Health-Care Provider Planned Responses to Patient Misunderstandings about End-of-Life Care.

This study examined health-care provider planned responses to patient misunderstandings about end-of-life care using a multiple goals framework. Plan topics and content alignment with task, identity, and relational goal types were coded. Findings suggested that content was predominately task-oriented and concerned implications of treatment options such as choice outcomes and efficacy rates.

The First Isolation and Whole Genome Sequencing of Murray Valley Encephalitis Virus from Cerebrospinal Fluid of a Patient with Encephalitis.

Murray Valley Encephalitis virus (MVEV) is a mosquito-borne Flavivirus. Clinical presentation is rare but severe, with a case fatality rate of 15⁻30%. Here we report a case of MVEV from the cerebrospinal fluid (CSF) of a patient in the Northern Territory in Australia.

Mapping staff perspectives towards the delivery of hospital care for children and young people with and without learning disabilities in England: a mixed methods national study.

Background: Children and young people (CYP) with learning disabilities (LD) are a vulnerable population with increased risk of abuse and accidental injury and whose parents have reported concerns about the quality, safety and accessibility of their hospital care. The Care Quality Commission's (CQC) view of best practice for this group of patients includes: access to senior LD nurse provision; a clearly visible flagging system for identifying them; the use of hospital passports; and defined communication strategies (Glasper, Comp Child Adolesc Nurs 40:63-67, 2017). What remains unclear is whether these recommendations are being applied and if so, what difference they are making.

Modulating in vitro gastric digestion of emulsions using composite whey protein-cellulose nanocrystal interfaces.

In this study, we designed emulsions with an oil-water interface consisting of a composite layer of whey protein isolate (WPI, 1wt%) and cellulose nanocrystals (CNCs) (1-3wt%). The hypothesis was that a secondary layer of CNCs at the WPI-stabilized oil-water interface could protect the interfacial protein layer against in vitro gastric digestion by pepsin at 37°C. A combination of transmission electron microscopy, ζ-potential measurements, interfacial shear viscosity measurements and theoretical surface coverage considerations suggested the presence of CNCs and WPI together at the O/W interface, owing to the electrostatic attraction between complementarily charged WPI and CNCs at pH 3.

Single-stranded RNA viruses infecting the invasive Argentine ant, Linepithema humile.

Social insects host a diversity of viruses. We examined New Zealand populations of the globally widely distributed invasive Argentine ant (Linepithema humile) for RNA viruses. We used metatranscriptomic analysis, which identified six potential novel viruses in the Dicistroviridae family.

Keeping all options open: Parents' approaches to advance care planning.

Background: Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life-limiting condition (LLC). However, most families have little knowledge or experience of ACP.

Objective: To investigate how parents of children and young people with LLCs approach and experience ACP.