"Starting to think that way from the start": approaching deprescribing decision-making for people accessing palliative care - a qualitative exploration of healthcare professionals views.

Background: Deprescribing has been defined as the planned process of reducing or stopping medications that may no longer be beneficial or are causing harm, with the goal of reducing medication burden while improving patient quality of life. At present, little is known about the specific challenges of decision-making to support deprescribing for patients who are accessing palliative care. By exploring the perspectives of healthcare professionals, this qualitative study aimed to address this gap, and explore the challenges of, and potential solutions to, making decisions about deprescribing in a palliative care context.

Professional perspectives on facilitators and barriers for high quality provision of health, education and social care services to disabled children in England during the COVID-19 pandemic: a qualitative study.

Objectives: To understand how health, education and social care services for disabled children changed during the COVID-19 pandemic, what did or did not work well and what the impacts of service changes were on both professionals and families.

Design: Qualitative study using semistructured interviews.

Setting: Telephone and video call interviews and focus groups with professionals working in one of five local authority areas in England.

Measuring patient-reported experience of solid organ transplantation healthcare: A scoping review of condition- and transplant-specific measures.

Background: Measures of patient experience are increasingly valued as key to healthcare quality assessment. We aimed to identify and describe publicly available measures assessing patient-reported experience of solid organ transplantation healthcare, and identify patient groups, healthcare settings, or aspects of patient experience underserved by existing measures.

Methods: We systematically searched MEDLINE, Embase, CINAHL, PsycINFO, Cochrane CENTRAL, Scopus and Web of Science from inception to 6th July 2023; supplemented with grey literature searches.

Young people's and adults' views and experiences of decision-making to manage compromised first permanent molars: a qualitative study.

Background: Little information on young people's and adults' views and experiences on decision-making for managing compromised first permanent molars (cFPM) exists.

Aim: To establish young people's and adults' views and experiences of decision-making for managing cFPM.

Design: Face-to-face (online) semi-structured interviews were undertaken using an iteratively designed topic guide.

Role modelling to support careers in general practice: a realist review protocol.

Background: Role models encountered during undergraduate training play an important part in shaping future doctors. They can act as powerful attractants towards, and deterrents away from, a career in general practice. Many GP educators, who act as role models, are burnt-out and wish to leave the profession, which may limit their ability to influence students positively, with consequent detrimental impact on recruitment to the specialty.

An ethnography of mealtime care for people living with dementia in care homes.

Many people living with dementia have difficulties at mealtimes, which can result in serious complications for physical and mental health, leading to hospital admissions and even death. However, current training in mealtime care for staff working with this population has been found to be poorly reported, with variable effectiveness. It is essential that care home staff are able to provide good care at mealtimes.

Assessing quality of life in solid organ transplant recipients: A systematic review of the development, content, and quality of available condition- and transplant-specific patient-reported outcome measures.

Purpose: We aimed to identify the condition- and transplant-specific patient-reported outcome measures (PROMs) available to measure quality of life (QoL) in solid organ transplant (SOT) recipients, examine their development and content, and critically appraise the quality of their measurement properties, to inform recommendations for clinical and research use.

Methods: We systematically searched MEDLINE, Embase, CINAHL, PsycINFO, Cochrane CENTRAL, and Scopus from inception to 27th January 2023. Search hits were screened for eligibility by two independent reviewers; papers reporting the development and/or validation of condition- and transplant-specific PROMs measuring QoL in adult SOT recipients were considered eligible.

A multicentre prospective evaluation of health-related quality of life and patient related outcomes in pancreatic and peripancreatic cancer: PROMCAN study.

Background: The temporal evolution of HRQoL and the importance of other PROs to patients, following resection for pancreatic and peripancreatic malignancy remains unexplored.

Methods: Patients undergoing pancreatic resection between 2021 and 2022 were enrolled from 2 UK HPB centres. Patients completed the EORTC QLQ-C30, QLQ-PAN26 tools and rated 56 PROs preoperatively (T1), at discharge (T2), 6-weeks (T3), 3-months (T4) and 6-months (T5) postoperatively.

Assessing impact, needs and quality-of-life among informal carers of people with pancreatic cancer, a prospective study: the PAN-CARER study protocol.

Introduction: Approximately 10 300 people are diagnosed with pancreatic cancer each year in the UK. The cancer and its treatment inflict a significant physical, functional and emotional burden on patients. Research suggests that patients have many ongoing needs for support and care, but that these needs are not met by existing services.

Exploring dental treatment decision-making experiences of people living with dementia and family carers.

Introduction: People living with dementia can have complex dental care needs. Dentists and patients should make treatment decisions together, yet some people living with dementia may be unable to make their own decisions about their dental care. Dental treatment decision-making and patients' experiences of this process have not been comprehensively researched.

How do patients make decisions in the context of a multidisciplinary team: an ethnographic study of four head and neck cancer centres in the north of England.

Objectives: To describe how patients are engaged with cancer decisions in the context of multidisciplinary team (MDT) and how MDT recommendations are operationalised in the context of a shared decision.

Design: Ethnographic qualitative study.

Setting: Four head and neck cancer centres in the north of England.

When should palliative care be introduced for people with progressive fibrotic interstitial lung disease? A meta-ethnography of the experiences of people with end-stage interstitial lung disease and their family carers.

Background: Little is currently known about the perspectives of people with interstitial lung disease and their carers in relation to the timing of palliative care conversations.

Aim: To establish patients' and carers' views on palliative care in interstitial lung disease and identify an optimum time to introduce the concept of palliative care.

Design: Meta-ethnography of qualitative evidence.

Patient Priorities in Autoimmune Hepatitis: The Need for Better Treatments, More Education and Challenging Stigma.

Background: Data show that patients with autoimmune hepatitis have significantly reduced quality-of-life and that corticosteroids carry marked side effects.

Aims: This study explored patients' experiences of autoimmune hepatitis and its treatments; key aspects for developing safe and effective new approaches to therapy.

Methods: An anonymised, internet-based survey collected data including patient demographics, treatments, side-effects, impact on day-to-day life, sources of support and attitudes towards autoimmune hepatitis between December 2019-January 2020.

Which factors influence the quality of end-of-life care in interstitial lung disease? A systematic review with narrative synthesis.

Background: People dying from interstitial lung disease experience considerable symptoms and commonly die in an acute healthcare environment. However, there is limited understanding about the quality of their end-of-life care.

Aim: To synthesise evidence about end-of-life care in interstitial lung disease and identify factors that influence quality of care.

'You can't start a car when there's no petrol left': a qualitative study of patient, family and clinician perspectives on implantable cardioverter defibrillator deactivation.

Objective: To explore the attitudes towards implantable cardioverter defibrillator (ICD) deactivation and initiation of deactivation discussions among patients, relatives and clinicians.

Design: A multiphase qualitative study consisting of in situ hospital ICD clinic observations, and semistructured interviews of clinicians, patients and relatives. Data were analysed using a constant comparative approach.

How do we provide good mealtime care for people with dementia living in care homes? A systematic review of carer-resident interactions.

People with dementia who live in care homes often depend on care home staff for help with eating and drinking. It is essential that care home staff have the skills and support they need to provide good care at mealtimes. Good mealtime care may improve quality of life for residents, and reduce hospital admissions.

Enhancing shared and surrogate decision making for people living with dementia: A systematic review of the effectiveness of interventions.

Background: Dementia can have a profound impact on decision making. People living with dementia (PLwD) often need to make decisions about health care, and, as dementia progresses, decisions may need to be made on their behalf. Specific interventions may support this process.

Disentangling a web of causation: An ethnographic study of interlinked patient barriers to planned dental visiting, and strategies to overcome them.

Objective: To explore barriers to planned dental visiting, investigating how barriers interlink, how they accumulate and change, and how individuals envisage overcoming their combination of barriers through personal strategies.

Methods: An ethnographic study was conducted of adult urgent dental care attenders who did not have a dentist, including 155 hours of nonparticipant observations, 97 interviews and 19 follow-up interviews in six urgent dental care settings. Data were analysed using constant comparison, first identifying barriers and personal strategies to overcome them, and subsequently analysing interlinks between barriers and personal strategies.

Information sharing challenges in end-of-life care: a qualitative study of patient, family and professional perspectives on the potential of an Electronic Palliative Care Co-ordination System.

Objectives: To explore current challenges in interdisciplinary management of end-of-life care in the community and the potential of an Electronic Palliative Care Co-ordination System (EPaCCS) to facilitate the delivery of care that meets patient preferences.

Design: Qualitative study using interviews and focus groups.

Setting: Health and Social Care Services in the North of England.

A critical exploration of professional jurisdictions and role boundaries in inter-professional end-of-life care in the community.

This article critically examines how professional boundaries and hierarchies influence how end-of-life care is managed and negotiated between health and social care professionals. Our findings suggest there is uncertainty and lack of clarity amongst health and social care professionals regarding whose responsibility it is to engage, and document, the wishes of patients who are dying, which can lead to ambiguity in treatment decisions. We go on to explore the potential role of a new electronic system, designed to facilitate information sharing across professional boundaries, in shaping and bridging professional boundaries in the delivery of end-of-life care.