Paradigm of Perseverence
This co-created model of perseverance is constructed by a family during a time of crisis. This mechanism becomes the family's way to construct and re-construct their new "normal," which changes all the time in situations of chronic illness, disease and disability.
The traumatic life-changing event or diagnosis that deeply affects all involved.
The initial shock subsides and a subtle recognition emerges. Families begin to adapt to the new changes and challenges presented.
Parents and caretakers discover their capacity and ability to surmount crises and persevere.
Parents and caretakers continue to build resilience as they manage their new lives.
Preparing for the "long haul," and develop coping strategies to maintain or create a normal life. Decisions are made and new roles assumed. A system of support begins to establish within the community.
Putting the pieces back together. Parents return to work, siblings go back to school, additional caretakers procured, and resources attained.
The typical method for identifying illness or injury is known as the medical model and it is “the traditional approach to the diagnosis and treatment of illness as practiced by physicians in the Western world since the time of Koch and Pasteur. The physician focuses on the defect, or dysfunction, within the patient, using a problem-solving approach.” Under this construct, a person is assessed, diagnosed, and treated, most often in isolation, and returned to the fold when their disease is cured or their disability corrected (Laing, 1971).
What happens when there is no cure or correction and there is no return to the fold? What happens to a family when their “normal” is completely obliterated in a moment yet they have to function in order to care for their loved one? How do they endure the crisis and survive?
This is where the Paradigm of Perseverance begins. It is a co-created, relational model of survival constructed by family members and/or caretakers of an afflicted child during a time of medical crisis in order to adapt to a life-changing event. It is a reorganized family structure driven by the family’s resilience and reformed belief systems in reaction to the dramatically altered circumstances in which they find themselves.
It begins at the “moment of crisis” when a child experiences a life-changing medical event or diagnosis, and the moments immediately afterward. Parents are often in shock and overwhelmed by a tremendous medical presence and feel incredibly helpless and confused. They find themselves trying to help their child cope with their medical trauma, while also experiencing their own less understood emotional trauma (Levine, 2008). Parents and caretakers are often forced to move through their own initial shock as they are required to make important decisions for their loved one who needs their protection and advocacy. Medical personnel have an enormous influence over a family’s sense of competence and strategies at this point (Rolland, 1993). This extreme situation forces the family system to adapt to the situation and their ability to do so is influenced by their personal and relational resilience which they are discovering through this process (Walsh, 1996).
As the initial shock begins to wane, and the reality of their circumstances starts to solidify, the family will then shift into an “activation” mode to begin to restructure their world, and to create their new “normal.” Resilience continues to be amassed throughout the process which helps a family surmount crisis and persevere. The family carves out new roles and assembles a system of support both within their extended family unit and within the community. They may also rework their family philosophy and beliefs and mourn the life and expectations they once had (Walter & McCoyd, 2015). This is also a crucial time as some members of the family may opt out of the unit because they are unable to handle the new situation.
The family now prepares for the "long haul" and they have started to come to grips with their new situation and develop coping strategies to maintain or create a "normal" life. They may also consider joining organizations affiliated with their medical condition and begin establishing a new identity in the community. Parents may return to work, or leave their jobs to care for their patient, siblings go back to school. Outside caretakers may need to be procured and overall resources attained and replenished. Families may have to engage with various government agencies for assistance as well (Rolland, 1993).
Family members may also attempt to assign meaning to their traumatic experience. They may see their experiences as a call to action within their community as part of their recovery process and become experts and/or advocates for others having similar experiences (Herman, 1992). The traumatic experience may even be characterized as a life-affirming event.