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.

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.

Views and experiences of young people, their parents/carers and healthcare professionals of the advance care planning process: A summary of the findings from a qualitative study.

Background: Advance care planning for young people is relatively new in the UK. There is a lack of understanding about the engagement of young people in their own planning process, optimal timing of discussions and the facilitators and barriers to the engagement of young people.

Aim: To explore the views and experiences of young people, their parents/carers and HCPs of the advance care planning process.

A realist evaluation of a home-based end of life care service for children and families: what works, for whom, how, in what circumstances and why?

Background: Children's palliative and end of life care is underpinned internationally by a commitment to provide care and support in the family's preferred place, which may include home, hospital or hospice. Limited evidence on models of best practice for the provision of children's end of life care at home is available. This realist evaluation of a novel, home-based end of life care service explored what works for whom, how, in what circumstances and why.

What does effective end-of-life care at home for children look like? A qualitative interview study exploring the perspectives of bereaved parents.

Background: End-of-life care for children with life-shortening conditions is provided in a range of settings including hospital, hospice and home. What home-based, end-of-life care should entail or what best practice might look like is not widely reported, particularly from the perspective of parents who experienced the death of a child at home.

Aim: To explore the value and assess the effectiveness of an innovative model of care providing home-based, end-of-life care as perceived by families who accessed the service.

Home-Based End of Life Care for Children and their Families - A Systematic Scoping Review and Narrative Synthesis.

Problem: There is a growing international drive to deliver children's palliative care services closer to home. Families should have choice of where end of life (EOL) care is provided with home as one option. This review aims to establish the current international evidence base relating to children's EOL care at home.

A study of childhood cancer survivors' engagement with long-term follow-up care: 'To attend or not to attend, that is the question'.

Purpose: In the UK, there are over 40,000 childhood cancer survivors (CCS); this figure grows approximately 1300 annually. Two-thirds are at risk of developing serious disabling or life-threatening conditions due to adverse late effects of the cancer or treatment received in childhood. Life-long, follow-up care for the surveillance and management of late effects is recommended.

A Network Approach to Neonatal Palliative Care Education: Impact on Knowledge, Efficacy, and Clinical Practice.

More than 80 000 babies are admitted to specialist neonatal units in the United Kingdom every year, with approximately 2109 neonatal deaths a year; 98% in hospital. A common element in guidance and pathways to facilitate the provision of palliative care to infants and their families is the importance of good education and training to develop high-quality staff and services. This article presents a mixed-methods, sequential, explanatory design evaluation of 1 day palliative care education workshops delivered using a network-wide approach to multidisciplinary professionals.

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.

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.

Research priorities for respiratory nursing: a UK-wide Delphi study.

Respiratory nurses make a significant contribution to the delivery of respiratory healthcare, but there is a dearth of nurse-led, practice-focused, published research. Using a modified three-round Delphi, this study sought to identify research priorities for respiratory nursing to inform a national research strategy. Study information and the survey link were sent electronically to members of UK professional respiratory organisations.

Student nurse non-attendance in relation to academic performance and progression.

Background: High levels of non-attendance are reported in nurse education programmes even though literal interpretation of UK national guidelines implies mandatory student attendance is a requirement for all elements of pre-registration undergraduate programmes.

Objectives: To examine relationships between undergraduate student nurse non-attendance, academic performance and progression.

Design: A quantitative study using audit approaches was undertaken.

Improving end of life care in care homes; an evaluation of the six steps to success programme.

Background: There are approximately 426,000 people residing within care homes in the UK. Residents often have complex trajectories of dying, which make it difficult for staff to manage their end-of-life care. There is growing recognition for the need to support care homes staff in the care of these residents with increased educational initiatives.

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.

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.

Patient access to healthcare services and optimisation of self-management for ethnic minority populations living with diabetes: a systematic review.

A higher risk of diabetes mellitus in South Asian and Black African populations combined with lower reported access and self-management-related health outcomes informed the aims of this study. Our aims were to synthesise and evaluate evidence relating to patient self-management and access to healthcare services for ethnic minority groups living with diabetes. A comprehensive search strategy was developed capturing a full range of study types from 1995-2010, including relevant hand-searched literature pre-dating 1995.