Living with cough and secretion issues: the experiences of people with amyotrophic lateral sclerosis and their caregivers.

Purpose: To explore the experiences of people living with amyotrophic lateral sclerosis (ALS) and their caregivers managing cough and secretion problems.

Methods: A qualitative study was completed with 15 individuals participating in 10 interviews; 10 people living with ALS and five informal caregivers. Interview methods were adapted to ensure inclusivity of participants who had physical, respiratory and communication impairments.

Process evaluation of the flucare cluster randomised controlled trial: assessing the implementation of a behaviour change intervention to increase influenza vaccination uptake among care home staff in England.

Background: Influenza (flu) vaccination rates of Care home staff (CHS) in England are consistently lower (≈ 15% in 2023) than World Health Organisation recommendations (≥ 75%). The FluCare trial examined the effectiveness of a multi-component intervention (including on-site flu vaccination clinics, information materials including video, £850 incentive and monthly monitoring with feedback) designed to address known barriers to flu vaccine uptake amongst CHS. This paper reports an embedded process evaluation designed to understand implementation of the FluCare intervention and provide explanations for observed effects in the trial.

Development of a behaviour change intervention to increase care home staff influenza vaccination uptake.

Background: To protect care home residents the World Health Organisation recommends that 75 % of care home staff are vaccinated for influenza. In the UK this value is less than 30 %. Previously reported interventions have not been informed by theory and usually only addressed one or two known barriers to uptake.

Influential Factors when Making Decisions About Dementia Medications in Memory Assessment Services; a Focused Ethnography and Interview Study.

BackgroundDiscussing pharmaceutical treatment for dementia is challenging because of variation in disease progression, lack of curative treatments, and communication difficulties. Research in the context of dementia suggests shared decision making is limited, this study examined how dementia medications are discussed in practice.MethodsFocused video/audio ethnography of clinical appointments (n = 14), semi-structured interviews with patients/supporters (n = 23) and clinicians (n = 5) were employed to examine communication practices.

How healthcare professionals support cough and secretion management in amyotrophic lateral sclerosis (ALS): a UK national survey.

Objective: To understand the practices of healthcare professionals supporting people with Amyotrophic Lateral Sclerosis (ALS) to manage cough and secretion issues. This includes utilization of and confidence in assessment and treatment techniques and barriers and enablers of care.

Methods: An online cross-sectional survey was distributed to UK healthcare professionals involved in cough and/or secretion management care in people with ALS.

Caring for older adults with severe mental health problems in care homes: a qualitative study of staff experiences.

Objectives: Severe mental health problems are often overlooked within the older adult population. Older people with severe mental health problems are at higher risk of discrimination and may experience a variety of complex needs. Within a care home setting, these factors may pose additional challenges for staff.

The uncertainties and questions of care home residents, relatives and staff as a basis for evidence-based improvement and research.

Background: Research in long-term residential care settings (or care homes) for older people should address questions and uncertainties that matter most for those receiving and delivering care. Whether research does this effectively is unclear. In part, because the uncertainties and questions of key stakeholders are unmapped.

Exploring mechanisms of behavior change for healthcare professionals in cough and secretion management in ALS.

Objectives: To explore healthcare professionals' experiences managing cough and secretion problems in Amyotrophic Lateral Sclerosis (ALS).

Methods: A qualitative study was completed with 23 individuals participating in four focus groups. Data was analyzed using reflexive thematic analysis and COM-B and theoretical domains framework (TDF) behavior change frameworks.

Barriers and facilitators to implementation of mental capacity legislation in care homes for older adults in the United Kingdom: a mixed-methods systematic review.

Objective: Mental Capacity legislation defines when a person lacks capacity and subsequently supports individuals to make as many decisions as possible for themselves. Whilst frameworks exist, care home staff often feel unsupported with insufficient knowledge and training. This review aimed to understand barriers and facilitators of implementing mental capacity legislation in care homes for older adults in the United Kingdom.

The Use of Digital Devices to Monitor Physical Behavior in Motor Neuron Disease: Systematic Review.

Background: Motor neuron disease (MND) is a progressive and incurable neurodegenerative disease. The Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) is the primary clinical tool for assessing disease severity and progression in MND. However, despite its widespread use, it does not adequately capture the extent of physical function decline.

Effectiveness of a theory-informed intervention to increase care home staff influenza vaccination rates: a cluster randomised controlled trial.

Background: Care home staff's (CHS's) influenza vaccination rate in England is 30%-40%, below the 75% WHO recommendation. We describe the effectiveness of a theory-informed and feasibility-tested intervention (in-home clinics; posters/videos to address vaccination hesitancy and care home financial incentives for uptake) to improve CHS vaccination rates.

Method: Recruited care homes in England with CHS vaccination rates <40% were randomised at the home level for intervention or control.

"There is always a reason why someone is doing something": The importance of life history and personhood when supporting people with dementia to "wander" in care homes.

Up to 60% of people living with dementia who reside in care homes will 'wander' at some point. A person-centred approach should be taken to support each person's individual needs through tailored interventions when wandering. This study aimed to identify care home staff perspectives on what supports safe wandering for people living with dementia in care home environments.

A Psychosocial Critique of the Consequences of the COVID-19 Pandemic on UK Care Home Staff Attitudes to the Flu Vaccination: A Qualitative Longitudinal Study.

Vaccinating care home staff is essential to protect vulnerable residents by reducing infection risks and creating a safer care environment. However, vaccine hesitancy amongst staff remains a challenge, particularly since the COVID-19 pandemic raised concerns about side effects and vaccination mandates. This study examines how the pandemic influenced flu vaccine hesitancy amongst UK care home staff.

Development and Evaluation of the Telehealth in Motor Neuron Disease System: The TIME Study Protocol.

Background: For more responsive care provision for motor neuron disease and caregivers, a digital system called Telehealth in MND-Care (TiM-C) was created. TiM-C sends regular symptom questionnaires to users; their responses are sent to health care professionals (HCPs). To enable people with motor neuron disease to participate in research studies more easily, a parallel platform was developed from TiM-C, called Telehealth in MND-Research (TiM-R).

A meta-ethnography of shared decision-making in mental health care from the perspective of staff and service users.

Background: Human rights, recovery, and value-based approaches are integral to strategic changes and development in mental health care. Successfully integrating such person-centred values in mental health services requires a paradigm shift from traditional biomedical models of care to a more human rights-based approach. An important aspect of this is shared decision making (SDM) between mental health staff and service users.

Development of a novel patient reported outcome measure for health-related quality of life in amyotrophic lateral sclerosis (PROQuALS): study protocol.

Background: Patient reported outcome measures (PROMs) can be used to assess the impact of health conditions upon an individual's health-related quality of life (HRQoL). Whilst PROMs have been used to quantify the HRQoL impact of amyotrophic lateral sclerosis (ALS), existing instruments may not fully capture what matters to people living with ALS (plwALS) or be appropriate to be used directly to inform the cost-effectiveness of new treatments. This highlights a need for a new condition-specific PROM that can both capture what's important to plwALS and be used in economic evaluation.

Development of the Guide to Disseminating Research (GuiDiR): A consolidated framework.

Background: Less than one third of research evidence is translated into policy or practice. Knowledge translation requires effective dissemination, adoption and finally implementation. These three stages are equally important, however, existing knowledge translation models and frameworks provide little and disparate information about the steps and activities required for effective dissemination.

Measuring Health-Related Quality of Life in Amyotrophic Lateral Sclerosis: A Systematic Review and Conceptual Framework.

Background And Objectives: The assessment of health-related quality of life (HRQoL) in patients with amyotrophic lateral sclerosis (ALS) is heterogeneous and inconsistent. The objectives of this study were (1) to develop a comprehensive conceptual framework of HRQoL in ALS and (2) map the content of existing patient-reported outcome measures (PROMs) used in ALS to this novel framework.

Methods: Our model of HRQoL in ALS (Health-related Quality of life in Amyotrophic Lateral Sclerosis, QuALS) was developed from a systematic literature review and consultative input from key stakeholders (patients, carers, and health care professionals).

Exploring the impact of care home environments and culture on supporting residents to 'wander' safely.

Objectives: Up to 60% of people with dementia living in care homes will 'wander' at some point, which has typically been seen by staff as a problematic behaviour. A range of non-pharmacological interventions have been tested to either support or prevent wandering. However, even recent innovative practice continues to maintain a focus on reducing or preventing wandering.

Researchers' experiences of the design and conduct challenges associated with parallel-group cluster-randomised trials and views on a novel open-cohort design.

Background: Two accepted designs exist for parallel-group cluster-randomised trials (CRTs). Closed-cohort designs follow the same individuals over time with a single recruitment period before randomisation, but face challenges in settings with high attrition. (Repeated) cross-sectional designs recruit at one or more timepoints before and/or after randomisation, collecting data from different individuals present in the cluster at these timepoints, but are unsuitable for assessment of individual change over time.

Protocol of the process evaluation of cluster randomised control trial for estimating the effectiveness and cost-effectiveness of a complex intervention to increase care home staff influenza vaccination rates compared to usual practice (FluCare).

Background: Influenza (flu) vaccination rates in UK care home staff are extremely low. Less than 40% of staff in care homes are vaccinated for influenza (flu), presenting risks to the health of frail residents and potential staff absence from cross-infection. Staff often do not perceive a need for vaccination and are unaware they are entitled to free flu vaccination.

Dementia care navigation: A systematic review on different service types and their prevalence.

Background: Dementia Care Navigators (DCNs) are professionals without clinical training, who provide individualised emotional and practical support to people living with dementia, working alongside clinical services. Navigator services have been implemented but the service offered vary without a consistent overview provided. The aim of this narrative systematic review was to describe and compare existing service formats, and to synthesise evidence regarding their implementation and impacts.

Cancer care for people with dementia: Literature overview and recommendations for practice and research.

As many countries experience population aging, patients with cancer are becoming older and have more preexisting comorbidities, which include prevalent, age-related, chronic conditions such as dementia. People living with dementia (PLWD) are vulnerable to health disparities, and dementia has high potential to complicate and adversely affect care and outcomes across the cancer trajectory. This report offers an overview of dementia and its prevalence among patients with cancer and a summary of the research literature examining cancer care for PLWD.

Cluster randomised control trial protocol for estimating the effectiveness and cost-effectiveness of a complex intervention to increase care home staff influenza vaccination rates compared to usual practice (FLUCARE).

The care home staff influenza vaccination rate in England is significantly lower than the 75% World Health Organisation recommendation. This represents a substantial potential for resident harm. Barriers to staff vaccination stem from individual and organisational levels.