I recently had the opportunity to participate in a focus group aimed at reviewing the process for families of children with long term hospitalization and how they can transition successfully back to school. The impact of chronic illness on an individual as well as a family does not get lost in my practice. In my teen years I had multiple doctor's appointments, biopsies, labs, and diagnostic tests. Answers did not come quickly or easily. I ended up with blood transfusions and years of mismanaged medical advice. As I learn more about wellness, diagnostics, and the health care system I reflect on my experience and the experiences of many of my students with chronic illness. The history I experienced helps me reflect on the challenges and changes that need be addressed.
Medical Adherence.
Medical adherence is impacted by the ability to cope, emotional development and socio-economic difficulties. We might look at an assessment of adherence to include direct observations including labs and diagnostics. Objective assessment and medication assessment would be included. Medical adherence should also include a pain management intervention assessment. Pain management should not only include medication or chemical pain control, but include alternatives such as physical therapy, massage or biofeedback. Part of therapy for medical adherence may also consider acceptance and commitment to therapy.
Family Functioning.
A chronic illness impacts the entire family. A good provider will be attune to the family dynamics. Being mindful of of how long term illness, hospitalizations and such can impair the family dynamic. Impaired communication, roles and affective involvement, how much family members are involved with each other, impacts patterns of behavior that can pose problems for families. Family coping is dynamic and will vary based on the needs of the individual family. Every family needs to look at their quality of life, well-being and adaptive family functioning to build resilience.
Individual Impacts.
Clients impacted by a chronic health condition are at risk for social isolation and anxiety. Non-compliance is always a risk, especially when the treatment is years long. It is important to look for any inattentive or depressive symptoms. Based on the illness, the condition may influence the individual in functional independence, psychosocial stress and maladjustment. Any mental and behavioral concerns may look like externalizing behaviors such as aggression, disobedience and anxiety.
Treatment Strategies.
Collaborative care treatment will first begin with the initiation of a treatment plan, follow-up and treatment to target, then the completion and relapse prevention. Common strategies should include functional improvement, be behaviorally defined and measurable. Most importantly, a treatment plan must be "owned" or "co-owned" by the client. Shared goals for treatment must be client-centered.
Personal Reflection.
I never received collaborative care with my condition. I was placed in multiple silos that did not connect dots, making my experience inconsistent at best. After about 3 years of "treatments" never actually making me any better I became non-compliant, struggled with depression and often was hospitalized to treat the impacts of my condition. Meanwhile, I had attended the same office, hospital and clinics, but the providers were always rotating. No one took time to get to know me, my life or my impacts. I vividly remember a conversation with my provider, after a failed cardiac ablation, persistent inflammation and they wanted to start infusions. These infusions would significantly impact my life. I knew what it meant taking low dose chemo for the rest of my life and I wasn't there. I refused treatment. It was not the quality of life I wanted at 30. Nearly a decade later, after finding a holistic, intelligent provider who addresses the person as a whole and doesn't let insurance dictate their decisions for care, I have been healing. If you work in a setting with people getting chemo or bone marrow transplant or infusions, how does your provider support their clients in a unique way?
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