Hello everyone! I have a special guest blog post this week from Dr. Elizabeth Kelly, and her blog: Having Community-based Conversations around Human Services through Listening, Engaging and Connecting (HCCHSLEC). I’m excited to share her point of view with you as she comes from a place of understanding chronic illness through being a mother and a community-based nurse. Be sure to follow her blog and follow more community-based conversations through her Twitter account.
Chronic illness is a significant, yet quiet health issue currently occurring within the current United States healthcare system. It is defined as an illness lasting longer than three months and is not self-limiting; it affects almost half of the United States population and accounts for three-fourths of health care costs in this country. (Von Korff, M, et al. (1997)
I came to understand this definition and its application when our six-week-old son received his first asthma diagnosis. I dutifully followed every medical treatment including washing the walls and floors of the baby’s room daily, using special room filters, and limiting visitors because “he would out-grow it.” Many other medical treatment suggestions followed, all with the same health outcomes. He wheezed, coughed, and cried for years. As he grew and started attending school he often asked “why can’t I keep up with the rest of the kids?”
The most reliable source I found to understand our son’s disease over time was the wisdom and experiences of other mothers with children who also struggled with the disease. We put our heads together, shared information, followed and documented medical treatments, and compared notes on our several children. What we discovered is that we lacked advocacy skills that better prepared us for the long-term implications of the disease, how it cycles through each child’s life and development, and the long term effects of the variety of treatments received.
While trying to understand asthma as a disease, I also found I was missing my role as a support and advocate for my child. Other mothers asked similar questions, “What am I not understanding about the doctor’s treatments,” “how do I ask the physical education teacher to consider exercise and endurance levels?” Sharing these experiences with other mothers helped me to begin a learning process by discovering the definition of words I was using.
Advocacy involves the “efforts of an individual or group to effectively communicate, convey, negotiate, or assert the interests, desires, needs, and rights of the individual or group of individuals speaking on behalf of or in support of themselves or another person.” (www.schooladvocacy.ca)
One who participates in the activities of advocacy is identified as an “advocate,” a “person who speaks up for, and defends the rights of him or herself, or of another person. (www.schooladvocacy.ca)
Discovering the meaning of each term sets into motion improved advocacy activities and skills.
The activities involve a variety of skills necessary for the advocate(s) to understand, apply, evaluate, and assess for next steps. The overarching framework for these activities is collaboration, which involves knowledge of 1) the patient, both short and long-term, and 2) the disease of the patient. Also included in collaboration efforts are the patient’s family, healthcare services, and supportive services. Because of the current changing nature of patient care, it is important to understand and plan advocacy strategies that relate to the patient’s goals, who will be involved in achieving the goals, levels of expectation, and methods by which to monitor both the standards of care as well as that of the patient’s care status.
This framework for advocates is also “keen to communicate with health policy members at the local, state and national level, and follow legislation that has both direct and indirect influence for the patient.” (www.medscape.com) Evidence for this level of collaboration recently appeared while discharging a patient from the hospital. Although the hospital was aware that a state healthcare policy, related to the patient’s ongoing care had lost its funding, the patient left the hospital without information about the policy change. After several days of waiting for service delivery, a family member learned about the policy change. Several days later and numerous phone calls by the family to both the hospital and legislative representatives, advocacy activities shifted to agencies that could provide the equipment. As the family reflected on the circumstances to a newspaper, they said: “never again will there be trust between us and those who provide health care.”
Practicing collaboration includes ongoing knowledge-based communication skills at all levels of activities and with all participants. With the patient as the center of focus when planning care, listening to the patient’s experiences sharpens the care plan. Drawing on a variety of voices that contribute to the care plan reveals innovative opportunities for care. From the discovery and inclusion of innovations comes new data that enables decisions to shift patient needs and help avoid medical errors.
At the same time that patient care is being monitored, evaluated, and reported, information from the activities and strategies is gathered. Sharing the information is an important advocacy strategy because knowledge is power and when individuals receive knowledge, communication improves, new questions develop, and meeting daily challenges with the new knowledge allows for an expanded discussion with others, their experiences, and their strategies. Sharing knowledge strengthens and gives voice to the community that currently remains in the background while costs rise.
Advocacy is a vehicle to raise the volume of quiet voices for those living with chronic illness and who find themselves overlooked, misjudged, and misguided. Collaborative activities and strategies provide guidance toward increasing knowledge of the patient, keeping the patient at the center of the care process, and care providers aware of how the patient progresses. Communication between the patient, family, and various support systems leads to discovering innovative best practices for a patient over time. Now is the time to enhance everyone’s voices that find themselves caring for those with this type of illness.
It’s so important for us to understand different perspectives as patients, providers, loved ones, friends, and caregivers of chronic illness. Thank you so much to Dr. Kelly for sharing her perspective! If you’re interested in guest blogging on Chronically Kristin, please send me an email: firstname.lastname@example.org.