Using the Carers' Alert Thermometer tool to identify needs and support family caregivers of people with motor neurone disease: moving beyond needs assessments.

Background: Family caregivers of people with motor neurone disease (MND) experience adverse health outcomes as a result of their caregiving experience. This may be alleviated if their support needs are identified and addressed in a systematic and timely manner. The objective of this pilot study was to assess the feasibility and relevance of the Carers' Alert Thermometer (CAT) in home-based care, from the perspective of MND family caregivers.

The diagnostic experience for people with MND and their caregivers in the U.K.

Objective: How an MND diagnosis is communicated has implications for how individuals adapt to their illness. The consultation process with the neurologist, diagnosis delivery, and adherence to UK guidelines, were explored from the perspectives of people diagnosed with MND and family caregivers.

Methods: A cross-sectional approach with people with MND and their caregivers in UK.

A different way of life: a qualitative study on the experiences of family caregivers of stroke survivors living at home.

There are approximately 1.3 million stroke survivors in the UK, with the majority of them relying on family caregivers for support. However, the needs of family caregivers are not routinely assessed by most services.

Healthcare professionals' perceptions of pulmonary rehabilitation as a management strategy for patients with chronic obstructive pulmonary disease: a critical interpretive synthesis.

Purpose: To establish literature regarding healthcare professionals' perceptions of pulmonary rehabilitation as a management strategy for patients with chronic obstructive pulmonary disease.

Method: A critical interpretive synthesis was conducted; CINAHL, PsychINFO and MEDLINE were searched between 1988 and August 2019, using MeSH headings and key terms. Reference lists of accepted papers were also searched.

The specification, acceptability and effectiveness of respite care and short breaks for young adults with complex healthcare needs: protocol for a mixed-methods systematic review.

Introduction: The number of young adults with complex healthcare needs due to life-limiting conditions/complex physical disability has risen significantly as children with complex conditions survive into adulthood. Respite care and short breaks are an essential service, however, needs often go unmet after the transition to adult services, leading to a significant impact on the life expectancy and quality of life for this population. We aim to identify, appraise and synthesise relevant evidence to explore respite care and short breaks provision for this population, and to develop a conceptual framework for understanding service models.

Continuing Bonds With Children and Bereaved Young People: A Narrative Review.

Background: Finding alternative ways to reconnect with the deceased is a common feature of bereavement. However, it is currently unclear how bereaved children or young people establish and develop a "continuing bond" with deceased family members.

Aim: To investigate how bereaved young people continue bonds with deceased family members.

The use of digital legacies with people affected by motor neurone disease for continuing bonds: An interpretative phenomenological analysis study.

Background: Motor neurone disease is a progressive neurodegenerative disease without cure. Little is known about how young people are affected when a family member has the illness and subsequently dies, resulting in a gap in understanding of how best to support them. One psychotherapeutic approach involves creating a legacy to pass onto the young person, but little research has investigated the use of an emerging format, digital legacies, where videos document a person's life, memories and achievements.

Teaching nurses to teach: A qualitative study of nurses' perceptions of the impact of education and skills training to prepare them to teach end-of-life care.

Aims And Objectives: To explore nurses' perceptions of the impact of a programme designed to train them to teach end-of-life care.

Background: Central to national and international policies are the need for generalist healthcare staff to have education in end-of-life care. Much end-of-life care education is provided by specialist nurses who often have no specific education development to prepare them to teach.

Meeting patients' spiritual needs during end-of-life care: A qualitative study of nurses' and healthcare professionals' perceptions of spiritual care training.

Aims And Objectives: To explore nurses' and healthcare professionals' perceptions of spiritual care and the impact of spiritual care training on their clinical roles.

Background: Many nurses and healthcare professionals feel unprepared and lack confidence, competence and skills, to recognise, assess and address patients' spiritual issues. Patients with unmet spiritual needs are at increased risk of poorer psychological outcomes, diminished quality of life and reduced sense of spiritual peace.

A qualitative study of health care professionals' views and experiences of paediatric advance care planning.

Background: Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health care professionals, focusing on exploring what their future wishes are; and the development of an advance care plan document. However, in paediatric and neonatal settings, there has been little research to demonstrate how advance care planning conversations take place.

Meeting the needs of young adults with life-limiting conditions: A UK survey of current provision and future challenges for hospices.

Aim: The aim of this study was to seek views of UK children's and adult hospices on the availability and challenges of providing services for young adults with life-limiting conditions.

Background: Internationally, there are a growing number of young adults with life-limiting conditions and/or complex needs which are degenerative, progressive and diverse and involve complex life-long symptom, medication management as well as palliative care. There are 55,721 young adults, aged 18-40 in England, which continues to increase.

The engagement of young people in their own advance care planning process: A systematic narrative synthesis.

Background: An increasing number of young people are living with life-limiting conditions. Current research about advance care planning for young people indicates differing experiences for those involved. Understanding how far young people are engaged in their own advance care plan is important to shape future practice and facilitate young people's wishes.

'The shock of diagnosis': Qualitative accounts from people with Motor Neurone Disease reflecting the need for more person-centred care.

The diagnosis of Motor Neurone Disease (MND) is devastating for people with MND (PwMND) and their families. The objective of this study is to describe the experiences of PwMND in receiving the diagnosis in order to inform a more person-centred approach to communicating such bad news. The design was an anonymous postal survey facilitated by all MND associations across Australia (2014-15).

A wolf in sheep's clothing? Patients' and healthcare professionals' perceptions of oxygen therapy: An interpretative phenomenological analysis.

Background: Despite emerging evidence and guidelines, poor prescribing and administration of oxygen therapy persists. This study aimed to explore healthcare professionals' (HCPs) and patients' perceptions of oxygen.

Design: Semi-structured interviews with 28 patients and 34 HCPs.

Supporting older people with cancer and life-limiting conditions dying at home: a qualitative study of patient and family caregiver experiences of Hospice at Home care.

Aim: To explore patients' and family caregivers' experiences and perceptions of Hospice at Home care.

Background: The public indicate a preference to be cared for and to die at home. This has inherent challenges, with a key factor being the family caregiver.

Short break and emergency respite care: what options for young people with life-limiting conditions?

Background: Service providers face difficult decisions about how best to develop services for the increasing numbers of young people with life-limiting conditions who require palliative care.

Objective: To explore alternative short break and emergency respite care options to children's hospice care.

Methods: A two-phase evaluation with young people, families and professionals.

Development of a Rheumatology-specific Patient Concerns Inventory and Its Use in the Rheumatology Outpatient Clinic Setting.

Objective: Successful management of rheumatic conditions involves increasing complexity of care. Delivering this in a holistic way is a growing challenge. The aim of our study was to develop a Patient Concerns Inventory (PCI) and assess it in the rheumatology clinic setting.

Delivering compassionate care: the enablers and barriers.

The importance of providing compassionate care to patients is well established. While compassionate care can be understood as an individual response to others' vulnerability, it is acknowledged that healthcare environments can impact significantly on this aspect of practice. This study sought to explore how health professionals and pre-qualifying healthcare students (HCS) understand compassionate care and factors that hinder or enable them to practice compassionately.

Gaining consensus on family carer needs when caring for someone dying at home to develop the Carers' Alert Thermometer (CAT): a modified Delphi study.

Aim: To report a multi-phase modified Delphi study conducted with carers and professionals to identify the priority areas for inclusion in an alert screening tool for carers providing support to someone dying at home.

Background: Internationally, there is a growing emphasis on increasing choice for patients who wish to die at home which relies heavily on care provided by the unpaid family carers. Family carers can have high levels of unmet needs comprising their psychological and physical health and their ability to provide effective care and support.

Development of the Carers' Alert Thermometer (CAT) to identify family carers struggling with caring for someone dying at home: a mixed method consensus study.

Background: There is an increasing international policy direction to promote home death for dying patients which will impact on the demands placed on family carers. The early identification of carer needs and appropriate intervention can help avoid crisis situations for the carer and avoidable hospital admissions which are reported to be a global concern. The aim of the study was to explore what professionals and carers of patients with cancer and advanced progressive illness, in their last year of life, find burdensome and to develop an alert system for use by non-specialist staff.

Difficult decisions: An interpretative phenomenological analysis study of healthcare professionals' perceptions of oxygen therapy in palliative care.

Background: The role of oxygen therapy to palliate dyspnoea is controversial. Without a clear evidence base oxygen is commonly prescribed, sometimes to the detriment of patients. This use of oxygen appears to be an entrenched culture, the roots of which remain obscure.

Spirituality and/or religious faith: A means for coping with the effects of amyotrophic lateral sclerosis/motor neuron disease?

Objective: The notion of spirituality/religious belief is recognized internationally as a domain within end-of-life care and is important in patients' and carers' quality-of-life. When faced with incurable illness, patients often become more philosophical about their life; many seek comfort in spiritual or religious philosophies. Our intention was to understand how personal spirituality and religious faith might help those living with amyotrophic lateral sclerosis/motor neuron disease (ALS/MND) cope with their impending death.

Supporting family carers providing end-of-life home care: a qualitative study on the impact of a hospice at home service.

Aims And Objectives: To explore bereaved family carers' perceptions and experiences of a hospice at home service.

Background: The increasing demand for the development of home-based end-of-life services is not confined to the western world; such services are also emerging in resource-poor countries where palliative care services are developing with limited inpatient facilities. Despite this growing trend, studies show a variety of interrelated factors, with an emphasis on the availability of informal carers and their ability to cope, which can influence whether terminally ill patients actually remain at home.

Family carer perspectives of acute hospital care following a diagnosis of motor neuron disease: a qualitative secondary analysis.

Objectives: The multifaceted nature of the problems faced by someone with motor neuron disease requires a knowledgeable multidisciplinary team approach. Where available, generally, such services are only provided on an outpatient basis, meaning that hospitalised patients are frequently admitted to non-specialist wards where understanding of their needs is limited. Little is known regarding the inpatient care received by patients.

The role of professional education in developing compassionate practitioners: a mixed methods study exploring the perceptions xof health professionals and pre-registration students.

Compassionate practice is a public expectation and a core health professional value. However, in the face of growing public and professional unease about a perceived absence of compassion in health care it is essential that the role of education in developing compassionate practitioners is fully understood. The aim of this study was to explore qualified health professionals' and pre-registration students' understanding of compassion and the role of health professional education in promoting compassionate care.