Speaking Up for Fundamental Care: the ILC Aalborg Statement.

OBJECTIVE: The International Learning Collaborative (ILC) is an organisation dedicated to understanding why fundamental care, the care required by all patients regardless of clinical condition, fails to be provided in healthcare systems globally. At its 11th annual meeting in 2019, nursing leaders from 11 countries, together with patient representatives, confirmed that patients' fundamental care needs are still being ignored and nurses are still afraid to 'speak up' when these care failures occur. While the ILC's efforts over the past decade have led to increased recognition of the importance of fundamental care, it is not enough. To generate practical, sustainable solutions, we need to substantially rethink fundamental care and its contribution to patient outcomes and experiences, staff well-being, safety and quality, and the economic viability of healthcare systems. KEY ARGUMENTS: We present five propositions for radically transforming fundamental care delivery:Value: fundamental care must be foundational to all caring activities, systems and institutionsTalk: fundamental care must be explicitly articulated in all caring activities, systems and institutions.Do: fundamental care must be explicitly actioned and evaluated in all caring activities, systems and institutions.Own: fundamental care must be owned by each individual who delivers care, works in a system that is responsible for care or works in an institution whose mission is to deliver care. RESEARCH: fundamental care must undergo systematic and high-quality investigations to generate the evidence needed to inform care practices and shape health systems and education curricula. CONCLUSION: For radical transformation within health systems globally, we must move beyond nursing and ensure all members of the healthcare team-educators, students, consumers, clinicians, leaders, researchers, policy-makers and politicians-value, talk, do, own and research fundamental care. It is only through coordinated, collaborative effort that we will, and must, achieve real change

Speaking up for Fundamental Care: The ILC Aalborg Statement

This is the final version. Available on open access from BMJ Publishing Group via the DOI in this recordObjective The International Learning Collaborative (ILC) is an organisation dedicated to understanding why fundamental care, the care required by all patients regardless of clinical condition, fails to be provided in healthcare systems globally. At its 11th annual meeting in 2019, nursing leaders from 11 countries, together with patient representatives, confirmed that patients' fundamental care needs are still being ignored and nurses are still afraid to 'speak up' when these care failures occur. While the ILC's efforts over the past decade have led to increased recognition of the importance of fundamental care, it is not enough. To generate practical, sustainable solutions, we need to substantially rethink fundamental care and its contribution to patient outcomes and experiences, staff well-being, safety and quality, and the economic viability of healthcare systems. Key arguments We present five propositions for radically transforming fundamental care delivery: Value: fundamental care must be foundational to all caring activities, systems and institutions Talk: fundamental care must be explicitly articulated in all caring activities, systems and institutions. Do: fundamental care must be explicitly actioned and evaluated in all caring activities, systems and institutions. Own: fundamental care must be owned by each individual who delivers care, works in a system that is responsible for care or works in an institution whose mission is to deliver care. Research: fundamental care must undergo systematic and high-quality investigations to generate the evidence needed to inform care practices and shape health systems and education curricula. Conclusion For radical transformation within health systems globally, we must move beyond nursing and ensure all members of the healthcare team - educators, students, consumers, clinicians, leaders, researchers, policy-makers and politicians - value, talk, do, own and research fundamental care. It is only through coordinated, collaborative effort that we will, and must, achieve real change

International development of a patient-centered core outcome set for assessing health-related quality of life in metastatic breast cancer patients

Purpose For patients living with metastatic breast cancer (MBC), achieving best possible health-related quality of life, along with maximizing survival, is vital. Yet, we have no systemic way to determine if we achieve these goals. A Core Outcome Set (COS) that allows standardized measurement of outcomes important to patients, but also promotes discussing these outcomes during clinical encounters, is long overdue. Methods An international expert group (EG) of patient advocates, researchers, medical specialists, nurse specialists, and pharmaceutical industry representatives (n = 17) reviewed a list of relevant outcomes retrieved from the literature. A broader group (n = 141: patients/patient advocates (n = 45), health care professionals/researchers (n = 64), pharmaceutical industry representatives (n = 28), and health authority representatives (n = 4)) participated in a modified Delphi procedure, scoring the relevance of outcomes in two survey rounds. The EG finalized the COS in a consensus meeting. Results The final MBC COS includes 101 variables about: (1) health-related quality of life (HRQoL, n = 26) and adverse events (n = 24); (2) baseline patient characteristics (n = 9); and (3) clinical variables (n = 42). Many outcome that cover aspects of HRQoL relevant to MBC patients are included, e.g. daily functioning (including ability to work), psychosocial/emotional functioning, sexual functioning, and relationship with the medical team. Conclusion The COS developed in this study contains important administrative data, clinical records, and clinician-reported measures that captures the impact of cancer. The COS is important for standardization of clinical research and implementation in daily practice and has received accreditation by the International Consortium for Health Outcomes Measurement (ICHOM)

Sleep-wake Disturbances in Patients With Cancer and Informal Caregivers -:the Added Value of a Dyadic Approach in Their Assessment and Management

No abstract available

Informal carers: A focus on the real caregivers of people with cancer

Background: Those who become active caregivers out of their simple need to be included in their loved ones' experience may act as a force in the support and sustenance of the person with cancer. Apart from family members, individuals "considered as family" by the patient may actively participate in the patient's cancer journey. The purpose of this clinical review is to raise clinician awareness on the multiple responsibilities assumed and the impact of active caregiving experienced by informal carers of patients with cancer, also offering a number of practical suggestions to promote person-centred support. Patients & Methods: An electronic search for original and review articles published between January 1990 and July 2011 in three research and evidence databases (MedLine, CINAHL, EMBASE) was carried out using the terms "caregiver" and "cancer". Results: Informal caregivers are often required to assume numerous roles and make changes in their lives until they find themselves striving to balance a host of responsibilities. By being practically and emotionally involved, however, caregivers' own lives can be affected, sometimes overwhelmingly. The physical, emotional, social, and financial stress that caregivers can face in this role may result in the neglect of their own needs, adversely affecting their quality of life. Conclusions: Research-driven support interventions such as peer support groups or psychological/emotional therapy, as well as honest, open and personalised communication with health care professionals and ongoing assessment of their needs can be of utmost importance in supporting those who contribute the most to the patients' cancer journey