In this paper, I will review the process of that a parent whose child is diagnosed with chronic illness will encounter, the use stressors associated, the use of counseling interventions and services for parents adjusting to chronic illness after their child has been initially diagnosed, including the use of a continuity of care programs (COC).
The need to provide counseling and services in the beginning stages after the initial diagnostic process and its continuation could prove more efficacious in helping parents process grief, information, stress and adapt to aspire for a better quality of life through the establishment of a medical home model. In order to refine the topic of discussion for this paper, a review of the diagnosis of Dravet Syndrome, a catastrophic form of Epilepsy has been chosen to illustrate the main points in this paper and I will include information regarding this diagnosis and its impact on families.
The review will also include outcomes of the use of COC programs such interventions and some of the more efficient therapy modalities available. There will also be a review of current barriers to the implementation to such a programs and what role insurance provider criteria for hospitalization and lack of support for such services within the confines of the hospital setting itself exist. Finally, I will present an alternate resource modality used by parents whose child has been diagnosed with a chronic illness that support the use of a COC programs and the role that social work has to play in the future of such programs.
These challenges and disappointments are of the realities that some couples may contend with as all parents whose child is diagnosed and it all may begin when a couple first decide to journey into parenthood. A journey into parenthood Many adults will undertake the journey of becoming parents and taking on the responsibility and rigors of raising children. According to Rodriguez and Adamsons, first-time parenthood is one of the most common transitions experienced by couples as 1,000,000 first-born infants are born to U. S. couples yearly (U. S. Census Bureau, 2001). (Rodriguez & Adamsons, 2012a) .
The decision-making process that couples can be described anecdotally through many variations which include couples reporting that they knew they were born to be parents, others who due to circumstances of passion found themselves in the role or others who carefully plan finances, careers, and other factors before they choose to be a parent.
Rodriguez and Adamsons explain that the previous ideas of adults transitioning into parenthood have been re-imagined in the past years as professionals have distanced themselves from the notion that parenthood is to be seen as a “crisis” faced by couples but rather as couples transitioning into the role of parent via pregnancy. Rodriguez & Adamsons, 2012b)
Rodriguez and Adamsons continue to state that additional research supports this view by reports from Belksy and Rovine, (1990) “that 50% of couples had either unchanged or improved marital relations after the birth of their first child” and Instead couples studies have reported the opposite of a crisis and cite Shapiro, Gottman, and Carrere (2000) who also found a third of mothers reported an improvement or no change in their marital relationship. (Rodriguez & Adamsons, 2012b). This indication of transitioning into parenthood sets the stage for what is the expected roles that couples associate with parenthood.
It is clearly a very emotional time for any couple as the first ultrasound images and sounds cement the possibility the idea of parenthood into a certainty with tangible proof that can be proudly displayed to others by stating “this is my child”. There is no doubt that the arrival of a child will directly affect individuals and as Rodriguez and Adamsons point out that couples are now tasked with balancing “three interdependent identities the self as an individual, partner, and parent”(Cowan & Cowan, 2000)(Rodriguez & Adamsons, 2012a).
The idea of maintaining these roles for any couple can be challenging as they must also begin to create a multitude of preconceived schemas pertaining to parenthood and more importantly their role that is expected from them as new parents. The expectation of what it means to be a parent is defined by most couples transitioning into parenthood and as Rodriguez and Adamsons state is a “key factor”(Rodriguez & Adamsons, 2012a).
Rodriguez and Adamsons go on to explain that the expectations couples have about parenthood have an impact on their roles and can be either inhibiting or promoting a successful transition into parenthood. (Rodriguez & Adamsons, 2012a). This can be assumed in the anecdotal stories we are told by couples who decided to accept the mantle of parenthood when they explain they dealt with a myriad feelings and questions. One of the most important feelings experienced is Happiness which engulfs couples as the joy of holding their child or planning for the future they will provide for their child as they grow up into adults.
Another key emotion is the anxiety associated with being a parent; Are we ready? ; will they go to college, will they be healthy, will it be a boy or a girl? pink or blue? a baseball glove or ballet slippers? will they love me? will I love them? , will I get this right?. These roles and feelings are wrestled with by parents over the period of pregnancy of 9 months as they prepare to transition into parenthood where tangible measurements can be made in things as “baby bumps” and ultrasounds.
Rodriguez and Adamsons have even referred to previous research by Ruble et al. ,1990;Wylie, 1979 who reported that there was a link between prenatal expectations and postpartum satisfaction during the transition to parenthood, yet remark that other research that examined transition into parenthood from prenatal stages up until 9 months indicated very little impact of when the process of transitioning into parenthood began or ended.
They further elaborated that this was based on the contextual experience of each couple. (Rodriguez & Adamsons, 2012a) There is one clear point that Rodriguez and Adamsons confirm with research and that is that expectations regarding parenthood do have an impact on relationships and satisfaction with postpartum outcomes produce a positive result while expectation disconfirmation can produce negative outcomes including marital erosion as they claimed to report with their research. Rodriguez & Adamsons, 2012a)
Rodriguez’s and Adamsons research aimed at discovering these relationships does present with very impactful statement and that is that “the transition to parenthood does not reflect a mere passage of time, a return to a ‘‘baseline,’’ or a crisis; rather, it is a time of both stability and change within individuals and relationships” (Cowan & Cowan, 2000; Hackel &Ruble, 1992). Rodriguez & Adamsons, 2012a) Yet while the transition of couples into parenthood managing their roles with a certain preconceived role expectations and expectations of the child can alone be stressful, a diagnosis of chronic illness in that child can promise to add another layer of complexity into the role of parenthood a fact that is more apparent to more parents than others.
