Browse Items (9 total)

Few studies have described the goals and wishes of parents caring for their children with rare diseases, specifically when children are unable to communicate their preferences directly. The purpose of this study was to describe the parent's…

Today every aspect of our life is published and shared online, including grief. The virtual cemeteries and social networks' use could be considered as a new modern mortuary ritual. Starting from the keyword stillbirth, 50 videos published on YouTube…

Objectives: * Describe state of current science and theory related to grief and bereavement. * Discuss variations of grief and strategies to support bereaved individuals. * Identify best practices to support healthy grief in hospice and palliative…

Objectives: * Apply the principles of plain language to deliver easy-to-understand, evidence-based palliative care information to those with serious illnesses and their families. * Utilize common forms of telecommunications (text messaging and email)…

Program Goals: Appropriate use of electronic media in a pediatric palliative care setting enhances a family's experience of care given to their child over time and assists in the grieving process. Here we explore multiple uses of electronic media in…

Objectives: *Establish the need for a family caregiver intervention for parents of children with rare diseases.*Introduce the intervention and its components.*Disseminate findings from the piloting of this intervention. In the U.S. a rare disease is…

Background: Accessible information about palliative care available to the public on the Internet is growing. We do not know whether this information is consistent with the current accepted definition of palliative care. Aim: To identify resources on…

Two bereaved mothers recount how they made meaning after the deaths of their children, recounting how opportunities to tell their stories in medical settings enabled them to construct narratives that promoted resilience and a sense of control.…

Social media is an important access point for engagement of children and adolescents. For individuals with a life-limiting illness or serving as the caregiver for an ill child, social media can be a helpful outlet for support and information…
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