Health information

A disorder is considered a rare disease if it affects 1 in 2000, hence, while independently unique, collectively, these conditions are quite common. Many rare diseases are diagnosed during childhood, and therefore parents become primary caregivers in addition to their parental role. Despite the prevalence of rare diseases among children, there has been little research focused on parents' experiences of navigating the healthcare system, a gap we begin to address in this study.

Objectives Describe preferred learning modalities for clinical care task assistance among general adults and family caregivers. Report differences by rural/urban residence in learning modalities for clinical care task assistance among general adults and family caregivers. Importance. Rural family caregivers for patients with serious illness receive minimal formal training but often perform clinical care tasks far from clinical settings. Evidence-based strategies to prepare caregivers for these tasks are needed. Objective(s).

Effective communication improves family satisfaction, trust in ICU physicians, clinical decision-making and psychological well-being being of family members (Lilly et al., 2000; Wood, 2018). Complete isolation due to the COVID-19 pandemic restrictions disables clinician-family meetings and the limitations of hospital visitation policies do not permit caregivers to be near their loved ones, with the risk of leaving them without any form of trusted representation and advocacy. Always be open minded to new ways of acting your mission.

[...]I would like to revise his statement slightly, to read: ‘We acknowledge that family and significant others can play a significant role in the process of decision making in some patients from non‐Western or Western cultural backgrounds more or less.’ [my emphasis]. [...]we equally know that doctors do not fulfil the obligation of medical information provision from the perspective of Chinese patients.

The increase of chronic illness as a leading cause of death has given rise to self-care and expert patient initiatives. Caring for chronically ill people places a tremendous economic burden on the health care system, informal carers, the labour market and benefit system (Department of Health 2001, 2004, 2005). Thus, in many countries health policy encourages patients to become ‘experts’ in the self-management of their conditions in the belief that it will help save money and improve health and well-being (Wanless 2002).