What I really need right now is to hear from other parents with a child like mine

What I really need right now is to hear from other parents with a child like mine

Lord B; Duncan J; Joselow M; O'Malley P

Journal of Pain and Symptom Management

2018

anxiety

Objectives * Describe two benefits of a web-based educational tool for parents of children with serious illness and clinicians who care for them. * List three common themes explaining what is most important to parents of seriously ill children in coping with the diagnosis. * State two ways this educational tool could be used with parents and clinicians. Upon learning that their child has a life-threatening illness, parents are typically overwhelmed and griefstricken. A diagnosis usually comes from clinicians who provide written resources and verbal explanations to begin helping parents understand what lies ahead. Clinicians can offer support however cannot truly understand the anxiety and grief parents experience or the scary questions parents may have lurking in their minds but are often afraid to ask. Parents do ask how on earth they are ever going to make it through this 'nightmare,' and how it is that other parents like them have done it. While support and empathy from their clinicians is critical, parents crave insights and wisdom of fellow parents who have walked in their shoes. Parents trust other parents and seek them out. There are significant practical and legal limitations, however, as to how clinicians can connect parents with other parents in person. Through this interactive session, participants will learn about an innovative online resource for families, available at no cost and 24/7, devoted to the medical, emotional, and psychological issues families face while caring for children with serious illness. Courageous Parents Network offers intimate video interviews profiling the diversity of family experience and perspectives, tips for family care, the value of palliative care, and perspectives from clinicians on questions that families ask - about diagnosis through end of life and bereavement. This resource helps families learn from the experience of others and lessens feelings of isolation that parents often experience. In this session, participants will learn how and when to introduce families to this resource, as well as how to use it to prompt and facilitate difficult conversations with patients and families, including those who are facing end-of-life.

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May 2018 List