Background: Pancreatic cancer is an aggressive disease with most cases diagnosed at an advanced stage resulting in low survival rates. Family members often take on a role of supporting patients' needs. Families tend to be unprepared for this and experience high levels of unmet needs and substantial impacts to their own wellbeing, heightened by the rapid deterioration and short life expectancy associated with pancreatic cancer.
View Article and Find Full Text PDFPurpose: There is an imbalance between demand for and availability of stem cell donors worldwide. The purpose of this systematic review is to provide the first comprehensive understanding of facilitators and barriers influencing unrelated stem cell donation (USCD) in adults, through a data synthesis of qualitative and quantitative evidence. Identification of the facilitators and barriers associated with stem cell donation intention and behaviour is essential to inform the development of behaviour change interventions to meet the current demand.
View Article and Find Full Text PDFBackground: Upper gastrointestinal cancers (UGICs) are increasingly prevalent. With a poor prognosis and significant longer-term effects, UGICs present significant adjustment challenges for individuals with cancer and their informal caregivers. However, the supportive care needs of these informal caregivers are largely unknown.
View Article and Find Full Text PDFBackground: Music therapy interventions with informal carers of individuals with life-threatening illness at pre- and post-bereavement is an increasingly important clinical area. This systematic review is the first to synthesise and critically evaluate the international evidence associated with music therapy with adult informal carers pre- and post-bereavement. Specifically, the objectives were: i) to describe the characteristics and effectiveness of music therapy interventions which aim to improve health-related outcomes for adult informal carers of adults with life-threatening illness (pre- and post-bereavement), and ii) to describe the experience of music therapy for adult informal carers of adults with life-threatening illness (pre- and post-bereavement).
View Article and Find Full Text PDFBackground: Pancreatic cancer, ranking seventh in global cancer-related deaths, poses a significant public health challenge with increasing incidence and mortality. Most cases are diagnosed at an advanced stage, resulting in low survival rates. Early diagnosis significantly impacts prognosis, making symptom awareness crucial.
View Article and Find Full Text PDFBackground: Informal carers of terminally ill patients play a vital role in providing palliative care at home, which impacts on their pre- and post-death bereavement experience and presents an up to 50% greater risk for mental-health problems. However, developing and implementing effective bereavement support remains challenging. There is a need to build the evidence base for music therapy as a potentially promising bereavement support for this vulnerable population.
View Article and Find Full Text PDFBackground: Individuals with chronic kidney disease experience difficult physical and psychological symptoms, that impact quality of life, and are at increased risk of anxiety and depression. Access to specialist psychological support is limited. This study aimed to support a new service development project, in collaboration with Kidney Care UK, to implement the Compassionate Mindful Resilience (CMR) programme, developed by MindfulnessUK, which provides accessible mindfulness techniques and practices to enhance compassion and resilience, and explore its feasibility for people living with stage 4 or 5 kidney disease and transplant.
View Article and Find Full Text PDFBackground: Kidney disease is a progressive, debilitating condition. Patients experience challenging physical and psychological symptoms and are at increased risk of anxiety, depression, and poor mental wellbeing. Access to specialist psychological or social support is limited, with inadequate provision of psychosocial support available across UK renal units.
View Article and Find Full Text PDFBackground: Oesophago-gastric cancer is an aggressive disease with a high rate of recurrence and mortality across the disease trajectory. Reduced psychosocial functioning has been evidenced amongst those with advanced disease, however little is known about the contributing factors. Determining these factors is an important clinical consideration to inform assessment and intervention.
View Article and Find Full Text PDFIntroduction: Individuals with chronic physical illness are at increased risk of negative psychological sequelae. Immersive virtual reality (VR) is an emerging treatment that might reduce these negative effects and increase quality of life in individuals with chronic physical illness.
Objective: To systematically review literature examining the use of immersive VR in adult populations with chronic physical illness to understand: (1) how immersive VR is used to improve psychological well-being of adults with chronic physical illness (2) what effect this immersive VR has on the psychological well-being of adults with chronic physical illness.
Background: Partnering with consumers in the planning, delivery and evaluation of health services is an essential component of person-centred care. There are many ways to partner with consumers to improve health services, including formal group partnerships (such as committees, boards or steering groups). However, consumers' and health providers' views and experiences of formal group partnerships remain unclear.
View Article and Find Full Text PDFBackground: There is evidence that a companion animal (CA) or 'pet' can be helpful during the management of chronic illness. However, the psychological effects of CAs and the mechanism by which they can be beneficial to individuals managing life-limiting conditions is unknown. This study addresses this gap and provides the first examination of the lived experience of CAs among community-dwelling adults with advanced cancer.
View Article and Find Full Text PDFBackground: Death literacy includes the knowledge and skills that people need to gain access to, understand, and make informed choices about end of life and death care options. The Death Literacy Index (DLI) can be used to determine levels of death literacy across multiple contexts, including at a community/national level, and to evaluate the outcome of public health interventions. As the first measure of death literacy, the DLI has potential to significantly advance public health approaches to palliative care.
View Article and Find Full Text PDFKidney disease is often progressive, and patients experience diminished health-related quality of life. In addition, the impact of the coronavirus (COVID-19) pandemic, and its associated restrictions, has brought many additional burdens. It is therefore essential that effective and affordable systems are explored to improve the psychological health of this group that can be delivered safely during the COVID-19 pandemic.
View Article and Find Full Text PDFBackground: For outcome measures to be useful in health and care decision-making, they need to have certain psychometric properties. The ICECAP-Supportive Care Measure (ICECAP-SCM), a seven attribute measure (1. Choice, 2.
View Article and Find Full Text PDFPalliative and hospice care health professionals may be at risk of poorer psychological outcomes. It is unclear what specific stressors are experienced by staff and what impact they have on their psychological wellbeing. To identify stressors experienced when working in an adult hospice inpatient unit environment and how these are managed.
View Article and Find Full Text PDFObjectives: Advance care planning is a key preparatory step in ensuring high-quality palliative and end of life care, and should be considered as a process, beginning with community-level conversations among lay persons. There is, however, indication that death talk among community-dwelling adults is not occurring, and there is a dearth of research examining why this is the case. This study aims to provide the first examination of barriers and facilitators to talking about death and dying among the general population in a UK region (Northern Ireland), and to provide a novel application of health behaviour change theory towards developing a theoretical understanding of the sources of this behaviour.
View Article and Find Full Text PDFBackground: Mindfulness can potentially positively impact well-being and resilience in undergraduate nursing students. The psychological well-being of such students undertaking clinical training is paramount to ensure optimal learning, and to equip them with skills to manage their wellbeing in future clinical practice. The aim of our study was to explore the views of undergraduate nursing students in relation to understanding and engaging with mindfulness, and how mindfulness could best be delivered within their university programme.
View Article and Find Full Text PDFThe COVID-19 pandemic has necessitated physical distancing which is expected to continue in some form for the foreseeable future. Physical distancing policies have increased reliance on digital forms of social connection and there are widespread concerns about social isolation and mental health in this context. This qualitative study sought to understand how loneliness was experienced during physical distancing in the initial national UK COVID-19 lockdown.
View Article and Find Full Text PDFCochrane Database Syst Rev
September 2021
Background: Health services have traditionally been developed to focus on specific diseases or medical specialties. Involving consumers as partners in planning, delivering and evaluating health services may lead to services that are person-centred and so better able to meet the needs of and provide care for individuals. Globally, governments recommend consumer involvement in healthcare decision-making at the systems level, as a strategy for promoting person-centred health services.
View Article and Find Full Text PDFBackground: Specialist palliative care (SPC) providers tend to use the term 'complex' to refer to the needs of patients who require SPC. However, little is known about complex needs on first referral to a SPC service. We examined which needs are present and sought the perspectives of healthcare professionals on the complexity of need on referral to a hospice service.
View Article and Find Full Text PDFBackground: Palliative care day services provide a safe environment for people with palliative care needs, enabling them to access a range of services while acting as a respite services for family caregivers. Viewed as marginal services, they are often under resourced and under researched. The aim of this study was to understand how palliative day care services contribute to client care from the perspective of management and hospice multidisciplinary teams.
View Article and Find Full Text PDFObjectives: Loneliness is a significant public health issue. The COVID-19 pandemic has resulted in lockdown measures limiting social contact. The UK public are worried about the impact of these measures on mental health outcomes.
View Article and Find Full Text PDFBackground: Ongoing assessment of psychological reaction to illness in palliative and end of life care settings is recommended, yet validated tools are not routinely used in clinical practice. The Distress Thermometer is a short screening tool developed for use in oncology, to detect individuals who would benefit from further psychological assessment. However the optimal cut-off to detect indicative psychological morbidity in patients with advanced cancer receiving specialist palliative care is unclear.
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