I cared for my mother in my home through her 8-year decline with multi-infarct dementia and associated conditions. Even with the help of a formal caregiver, the physical and emotional experiences of caring for a loved one, so seriously ill, took its toll on me. I regularly participated in daily caregiving routines, but, as expected, there was no improvement, only continued decline. For me, it was a lesson in helplessness. Nearly 20 years ago, the last year of my mother's life, I turned to the Internet for guidance and perspective and I found both. It was 1999, and the Internet was comparatively primitive. Nevertheless, I discovered a journaling site where family caregivers told their stories. One journal by a single woman, Martha, caring for her bedridden mother was particularly poignant. I followed the postings that recounted Martha's experiences with professional caregivers who were not always helpful and occasionally applied detrimental interventions; with her attempts to balance family caregiving and work; with her own diagnosis of breast cancer in the midst caring for her mother; and with her reactions to chemotherapy and her days of despair. I recall the poignant description of her mother's death and her own inner conflict in considering the death as both a loss and a relief. As I read the postings every few days, I realized how fortunate I was and how resilient the human spirit can be in getting us through difficult situations-and all by the grace of the Internet.
Since 1999, there has been a dramatic evolution of health sites on the Internet and the use of social media to promote health and healing but, more importantly, to be heard and to receive support. A 2017 update1 of this evolution reveals the following:
* Social media users comprise 74% of Internet usage, and 80% these users are accessing health information.
* Those living with chronic illness and disability including mental disorder are the most actively engaged social media users.
* Among those 55 years and older, 24.7 million participate in social networking predominantly through Facebook.
* Health information is freely shared by adult patients with other patients, hospitals, insurers, and pharma companies.
This explosion in the use of the Internet and social media has also resulted in the rise of participatory medicine; "a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners."2 The Web site e-patients.net will give the reader a full appreciation of the power of the Internet to empower patients and families, including the White Paper by Ferguson3 on "e-Patients: How They Can Help Us Heal Health Care," including improving direct care, hospitals, and interventions.
Person-centeredness is a fundamental principle of holistic nursing practice. The Internet may be the perfect communication environment in which to foster person-centeredness-permitting patients to give unabridged feedback on their care in the absence of the social pressures and intimidation that come with face-to-face communication.
-Gloria F. Donnelly, PhD, RN, FAAN, FCPP
Editor-in-Chief
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