440 results match your criteria: "Cicely Saunders Institute of Palliative Care[Affiliation]"

Nutritional interventions in randomised clinical trials for people with incurable solid cancer: A systematic review.

Clin Nutr

December 2024

Edinburgh Cancer Research Centre, University of Edinburgh, Edinburgh, UK; St Columba's Hospice, Boswall Road, Edinburgh, UK. Electronic address:

Background & Aims: Malnutrition is highly prevalent in those with cancer and more so in those with incurable cancer. In incurable cancer, it is widely agreed that optimal nutritional care has the potential to positively impact patient and caregiver distress and oncological outcomes. The aim of this systematic review was to describe the diversity and frequency of nutritional interventions, whether given in isolation or as part of a multimodal intervention in those with incurable cancer, in randomised controlled trials.

View Article and Find Full Text PDF

Context: Heart failure has high, growing global prevalence, morbidity and mortality, and is a leading cause of death with serious health-related suffering in low- and middle-income countries. Person-centred care (PCC) is a critical component of high-quality healthcare and is particularly vital in the context of a serious illness such as heart failure. However, there are limited data exploring PCC in this population in low- and middle-income settings.

View Article and Find Full Text PDF

Background: The number of children requiring daily medical care is on the rise, with many being cared for at home. This situation places a significant burden on mothers, who often serve as the primary caregivers.

Objective: This study aimed to clarify the factors that affect the quality of life of mothers with children who require home health care.

View Article and Find Full Text PDF

Background: Development of a paediatric palliative care child and family centred outcome measure is a priority for health care professionals, researchers and advocates. It is methodologically challenging to develop a measure relevant for such a heterogenous population with complex needs. Involving children in measuring development is vital.

View Article and Find Full Text PDF

Experience-based co-design (EBCD) is a qualitative form of participatory action research supported by a toolkit providing guidance and recommendations. The toolkit is intentionally non-prescriptive, allowing EBCD practitioners the freedom to flex the approach to cater to the needs of their specific populations and contexts. For less experienced researchers, the lack of specificity can be a challenge when navigating activities such as data analysis, particularly as wider literature provides limited insights to methods, processes, methodological critique, and lessons learned.

View Article and Find Full Text PDF

Background: People in receipt of community palliative care usually receive care from a range of services and require access to care 24/7. However, care outside of normal working hours varies, with little understanding of which models of care are optimal.

Aim: To identify and characterise current models of out-of-hours community palliative care in the UK and explore healthcare professionals' views on the barriers and facilitators to providing high quality community out-of-hours care.

View Article and Find Full Text PDF

Background: Guidance and principles for involving the public in research or service planning exist but are not specific to the needs of parents of children with life-limiting conditions or bereaved parents.

Aim: Review the evidence on involving parents of children with life-limiting conditions and bereaved parents in research, service planning and advocacy, and use this to develop best practice guidance.

Methods: Rapid review following the Cochrane Rapid Reviews Methods Group Guidance.

View Article and Find Full Text PDF

The Janus Face of Person-Centred Care.

Int J Geriatr Psychiatry

December 2024

Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK.

View Article and Find Full Text PDF

Aggressiveness of Care at the End of Life of Children Dying with Cancer in Public Hospitals-A Nationwide Retrospective Cohort Study.

J Palliat Med

December 2024

NOVA National School of Public Health, Public Health Research Centre, Comprehensive Health Research Centre, CHRC, NOVA University Lisbon, Lisbon, Portugal.

Little is known about the aggressiveness of cancer care at the end of life (ACCEoL) for children with cancer in countries where palliative care (PC) is scarce. The aim of this study was to determine the frequency and time trends of ACCEoL in the pediatric population in a Western European country. We conducted a retrospective cohort study analyzing children between 0 and 17 years who died of cancer in public hospitals in Portugal, from January 2010 to December 2015.

View Article and Find Full Text PDF

Background: Cancer navigation programs aim to support, educate, and empower patients and families, addressing barriers to diagnostics, treatment, and care. Navigators engage with people to ensure timely access to services and resources. While promising for older people with cancer, these programs are scarce in Europe, and research on their effectiveness and implementation is limited.

View Article and Find Full Text PDF

Objectives: To investigate healthcare utilisation and cost in individuals with long COVID (LC) at population level.

Design: Case-control cohort analysis with multiple age-, sex-, ethnicity-, deprivation-, region- and comorbidity-matched control groups: (1) COVID only, no LC; (2) pre-pandemic; (3) contemporary non-COVID; and (4) pre-LC (self-controlled, pre-COVID pandemic).

Setting: National, population-based, linked UK electronic health records (British Heart Foundation/NHS England Secure Data Environment).

View Article and Find Full Text PDF

Background: Incurable cancer is a major contributor to societal suffering and disability, and palliative rehabilitation is recommended to be integrated within and between cancer services at all healthcare levels. However, little knowledge exists on how integration of palliative rehabilitation in cancer is understood and achieved in clinical practice. INSPIRE (Integrated short-term palliative rehabilitation to improve quality of life and equitable care access in incurable cancer) is a large European-funded project that aims to promote quality of life through a novel rehabilitation model for people disabled by advanced cancer.

View Article and Find Full Text PDF
Article Synopsis
  • - This study investigates the barriers and facilitators that affect how patients with ovarian cancer in China seek help for their symptoms.
  • - It utilized semistructured interviews with 17 patients, analyzing responses to identify key themes, such as low symptom awareness and cognitive and practical factors impacting their help-seeking behavior.
  • - The findings highlight the need for better recognition of symptoms and addressing psychosocial and practical obstacles to encourage patients to seek medical help more effectively.
View Article and Find Full Text PDF

Background: People living with serious respiratory illness experience a high burden of symptoms. This review aimed to determine whether multicomponent services reduce symptoms in people with serious illness related to respiratory disease.

Methods: Electronic databases were searched to identify randomised controlled trials (RCTs) evaluating multicomponent services that enrolled patients due to symptoms, rather than underlying disease, and provided at least one nonpharmacological intervention.

View Article and Find Full Text PDF

Background: Navigation interventions could support, educate and empower older people with cancer and/or their family caregivers by addressing barriers and ensuring timely access to needed services and resources throughout the continuum of supportive, palliative and end-of-life care.

Objectives: European Union (EU) NAVIGATE is an interdisciplinary and cross-country Horizon Europe-funded project (2022-2027) aiming to evaluate the effectiveness, cost-effectiveness and implementation of a navigation intervention for older people with cancer and their family caregivers in Europe. EU NAVIGATE aims to advance the evidence on cancer patient navigation in Europe.

View Article and Find Full Text PDF
Article Synopsis
  • The study focuses on how living with both HIV and frailty affects older individuals, spotlighting the need for chronic disease management as the HIV population ages.
  • Through in-depth interviews with 24 participants from a UK HIV clinic, it was found that frailty limits physical, psychological, and social wellbeing, and while the term 'frail' was generally accepted, participants suggested the need for clearer definitions specific to HIV.
  • The conclusion emphasizes the importance of healthcare professionals being honest yet sensitive when discussing frailty, advocating for a holistic approach to care that prioritizes maintaining independence and addressing the broader impacts of frailty.
View Article and Find Full Text PDF
Article Synopsis
  • Explicit end-of-life discussions are rare in Confucian-influenced Asian societies, making culturally sensitive advance care planning challenging, especially with the important role of families in decision-making.
  • A Delphi study involving 115 multidisciplinary experts from five Asian regions aimed to create a consensus definition of advance care planning and provide practical recommendations for a patient-centered and family-based approach.
  • The proposed definition emphasizes identifying personal values and preferences for future medical care while engaging family and healthcare providers, with high agreement on various recommendations that can inform practices, education, and policies for culturally relevant care in Asia.
View Article and Find Full Text PDF
Article Synopsis
  • Most care for dementia patients comes from family caregivers, making their well-being a public health concern due to the increasing complexity of care needs as the disease progresses.
  • Digital health interventions provide benefits like constant support, easy access, and remote monitoring, but they also face challenges such as privacy issues and unequal access for those lacking internet resources.
  • By addressing these challenges and focusing on the needs of caregivers, digital health solutions can enhance the quality of life for those caring for dementia patients.
View Article and Find Full Text PDF

Background: Since the development of the Death Literacy Index (DLI) in 2019 in Australia, subsequent internationally validated versions have prompted rewording and refinement of the original survey questions. Use of the DLI in the community has also resulted in requests for a short format.

Objectives: To examine and report on the psychometric properties of a revised version of the DLI-R and develop a short format DLI-9.

View Article and Find Full Text PDF

Background: Digital advance care planning systems are used internationally to document and share patients' wishes and preferences to inform care delivery. However, their use is impeded by a limited understanding of factors influencing implementation and evaluation.

Aim: To develop mid-range programme theory to account for technological, infrastructure and human factor influences on digital advance care planning systems.

View Article and Find Full Text PDF

Sarcopenia interventions in long-term care facilities targeting sedentary behaviour and physical inactivity: A systematic review.

J Cachexia Sarcopenia Muscle

December 2024

Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King's College London, London, UK.

Article Synopsis
  • Sedentary behavior and physical inactivity are key risk factors for sarcopenia in long-term care residents, and the study aims to analyze effective interventions to address these issues and improve management strategies for sarcopenia.
  • The research reviewed 21 studies involving over 1,000 participants, primarily targeting physical inactivity through interventions like resistance training, but faced challenges with inconsistent reporting on adherence to these interventions.
  • A Theory of Change model was developed to help visualize and improve intervention effectiveness, highlighting areas like educational resources, exercise tools, and motivational strategies that could enhance participant engagement and outcomes.
View Article and Find Full Text PDF

Advances in breathlessness support services for people with serious illness.

Curr Opin Support Palliat Care

December 2024

Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, King's College London, London, UK.

Purpose Of Review: Breathlessness remains a common and distressing symptom among people with serious illness, particularly in advanced disease. This review synthesises recent advances in the development, characteristics, and outcomes of breathlessness support services.

Recent Findings: The expanding body of evidence regarding breathlessness support services has broadened and strengthened our understanding of clinical and cost-effectiveness.

View Article and Find Full Text PDF