Inspire Insights: What You Learn From Caregivers

Inspire Insights: What You Learn From Caregivers By Kathleen Hoffman, PhD MSPH According to the AARP’s 2015 report, “Valuing the Invaluable,” around 18% of adults in the US provide care as unpaid caregivers to family members. Over half of these caregivers are women. 1, 2 Of Inspire’s 1.3 million members, about one-third are caregivers. Yet the number of caregivers in a community truly depends on the medical condition: the rare disease community, Tuberous Sclerosis Alliance Support Community on Inspire, has over 13,000 members, over half of which (53%) are caregivers.  Likewise, the Alzheimer's Foundation of America Support [...]

Do you really hear patients?

Do you really hear patients? Communication breakdowns between healthcare providers, patients, and caregivers can have profound impacts on long-term health.  Even for those not working directly with patients, as payers, hospital administrators and life science industry professionals, it is crucial to learn from documented failures in communication. As an example, consider parents whose children were born prematurely and who had extended stays in a neonatal intensive care units (NICUs).  A survey of parents conducted in the Inspire Preemie Community revealed significant problems in their experiences with NICUs. The survey findings, detailed in an Inspire eBook called Untangling the [...]