Interview Project

Selection of Participants

Knowing that plentiful disparities in health care exist, I chose to investigate the health care conditions and circumstances surrounding an individual with Down Syndrome. Alicia, the subject of my interview project, is one of the students that I tutor at the Down Syndrome Association as part of the Adult Continuing Education Program (A.C.E.). By seeking to uncover differences in health care for an individual like Alicia, my objective to reveal inconsistencies in the health care systems will arise. Throughout Alicia’s lifetime, she has experienced various illnesses and conditions. Not only did she have Down Syndrome, she suffered from Dandy-Walker Syndrome and was born with a Ventricular Septal Defect. Because Down Syndrome and Dandy-Walker syndrome are both categorized as chronic conditions, I decided to interview a physician that did cure one of the acute conditions she suffered from. At only five months old, Alicia went under the knife to patch up the three holes in her heart. The provider interview was based on Dr. Armistead Wellford, a cardiologist at the Heart and Vascular Institute of Texas. He was a fitting subject for questioning due to his familiarity with open heart surgery procedures like the one Alicia experienced.

Questions asked for patient interview:

1. With what condition/illness have you been diagnosed? 2. How old were you at the age of diagnosis? Are you currently still living with the condition? 3. How did you find out you had the condition? 4. What was your insurance status at the time of diagnosis? Treatment? Did it change throughout the course of treatment? 5. What was your experience finding treatment for your condition? 6. What was the cost of treatment (with or without insurance)? 7. How well do you feel you understood your rights as a patient? 8. If still living with the condition (or of the condition could recur in the future), what are you doing to manage it? Are the management techniques covered by insurance? If not, are they affordable? 9. What do you wish you knew about the health care system before you experienced this condition?

Questions asked for provider interview:

1. What is your educational background and training with cardiology, heart disease, and heart surgery? 2. How long have you been working in your field? 3. How often do you see patients in need of heart surgery? 5 Running Head: HEALTH CARE SYSTEM AND DOWN 4. What types of insurance plans do you typically work with in treating patients with this condition? 5. Do you believe that the current health care system is conducive to the health of your patients? If so/if not, which specific elements do you like or would like to see changed? 6. What is the standard course of treatment for the condition? 7. What are the most challenging aspects of your work? 8. What do you wish patients knew about your work?

Patient Interview Summary

Alicia is a 30-year-old female living with Down Syndrome. The extra chromosome that she was born with led to increased care and atypical social situations, but nonetheless doesn’t make her any less of a human than you and I. Unfortunately, Alicia had other conditions that she was diagnosed with during her lifetime. At only five months old, Alicia was needing open-heart surgery. She was born with 3 holes in her heart. At age 20, Alicia was diagnosed with Dandy-Walker Syndrome, affecting motor and language skills, a contributor to why Alicia is mute, and why I had to interview Rose, her mother, for this project. Medical insurance was the key factor that paved the opportunity for Alicia’s wellness. Financial struggles never seemed to be an issue for Rose though. Because this was an interview surrounding her experience with the health care system as a whole, I was able to identify that she had an overall positive experience with cost, accessibility, and quality of treatments for Alicia. Application of this particular experience with the health care system to other individuals who also have Down Syndrome can result in a faulty comparison and here’s why. For many of the questions that I asked Rose, she relied heavily on her background as a nurse to make many circumstances easier. She was well informed of what Alicia’s benefits were, what she was entitled to, and even found Alicia’s primary care physician through one of her co-workers at the hospital she had worked at. She wouldn’t have known any of that information or would have 7 Running Head: HEALTH CARE SYSTEM AND DOWN known much less if she wasn’t associated with that line of work. She constantly used her profession as a means to better equip herself with the knowledge and resources to make Alicia’s health care circumstances better. Alicia’s medical coverage stemmed from 4 different insurers. The four that she mentioned during our interview were Medicare, Aetna, Medicaid, and Lifetime Living. If one insurer failed to cover an expense, the balance carried over to one of the others leaving Rose’s bank account free from harm. Being that Rose’s husband, Andy, was in the military, they also receive benefits from the Veterans Association as well. Overall, Rose’s benefits superseded the expenses that stemmed from the many health conditions Alicia possesses. Monetary costs were not an issue for Rose nor was finding access to a provider that would cover all of Alicia’s needs. At the very end of the interview, Rose didn’t care to add any additional information about the health care system itself. Her only ask was that when she had given birth to Alicia, was that her knowledge on successfully raising a child with Down Syndrome is as progressive as it is now. Down Syndrome isn’t a limitation, it’s a variation in experience.

Provider Interview Summary

Dr. Armistead Wellford went through 4 years of medical school, 3 years of internal medicine, 3 years of cardiology fellowship, and 1 year of echo cardiology. That is a total of 11 years in a graduate level program. He’s been working in cardiology since 1980. When it comes to treatment and diagnosis, this varies based on a multitude of factors. Specifically, heart surgery is a very broad procedure that can be used to treat heart problems that stem from a variety of causes. These causes can be either modifiable or nonmodifiable. Modifiable causes are major contributors for needing a Coronary Bypass Surgery (CBS), the most common type of open-heart surgery he performs. High blood pressure, diabetes, physical inactivity, obesity, and cigarette smoking are only some of the many examples that are considered modifiable factors. He claims that overall about 10-15% of his patients require open heart surgery. This percentage is inclusive of all types of heart surgeries, not strictly limited to CBS. A procedure like Alicia’s heart condition is inclusive in this statistic. Open heart surgery is a costly procedure making insurance vitally important. Dr. Wellford chooses to disassociate himself when it comes to payments for his services. The reason he does so is to eliminate bias that may come with knowing one’s ability to pay. Almost all of his 9 Running Head: HEALTH CARE SYSTEM AND DOWN patients have health insurance that is accepted by the Heart and Institute of Texas, which is the facility he works for. The Heart and Institute Facility is a cardiologic hospital under Tenet Health, a healthcare services company that is based in Dallas. Rarely will he ever see anyone that doesn’t have insurance coverage. Those individuals will have been deterred during the process of setting up the appointment. Dr. Wellford explains that the patients that he doesn’t get to see are the problem. The reason why he doesn’t get to treat some people stem from their lack of insurance or the type of insurance. To reiterate what was previously stated, the health care system in regard to monetary costs doesn’t deem to be an aspect that Dr. Wellford focuses on not because he doesn’t care, but because he wants to focus his efforts on the tasks that are present. He says that he doesn’t want to worry about what he can’t treat even though he would like to. As we started to wrap up our conversation, he ended with some of the challenging aspects of his work and information that he wished his patients knew about what he does. Dr. Wellford disclosed that the hardest thing about being a cardiologist is “getting people to do what they know is right.” He cannot choose what other people decide to do. The health of his patients will only be good as what they make it to be. Self-efficacy is key in his treatment processes as well as for many other health care professionals.

Analysis

Their experience with the health care system was overall positive despite the increased utilization of medical attention Alicia needed. While there are definitely factors that could have made their experience better, there are far more numerous elements that could have made their experience much worse. Social determinants of health like socioeconomic status, individual behavior, and community inequalities are only three of the many factors that impacted the quality and accessibility of care Alicia received. Health is variable across all individuals and population groups. Higher levels of socioeconomic status (SES) lead to advantageous health outcomes. SES is inclusive of education, occupation, income, gender, ethnicity, and social class. Rose’s educational attainment and field of study are supporting factors to the health care Alicia has now. Rose was studying to become a nurse, which increased her knowledge based specifically around health care system processes. Without this educational attainment, this could have negativity altered the type of quality of care Alicia received. If Rose didn’t know about costs, treatment, and access would she have been able to use her resources as efficiently as she did? “During the past several 11 Running Head: HEALTH CARE SYSTEM AND DOWN generations, education has become the principal pathway to financial security, stable employment, and social success” (Zajacova and Lawrence, 2018). (SEE APPENDIX A.) Individual behavior is another key determinant that paved the type of care that Alicia received. Rose’s self-efficacy was the foundation for providing the type of health care Alicia was able to receive. “…an individual’s health and health behaviors reflect physical endowments in combination with a cumulated set of experiences and circumstances that have unfolded over time, in distinct social and physical contexts” (Short and Mollborn, 2016). Her decision to get educated, to find a job, and to utilize her resources in order to create an experience that suited her needs are all individual behaviors. Getting an education meant gaining the knowledge to again aid the outcome of Alicia’s health, which ties back to socioeconomic status. Both SES and individual behavior share commonality in that one effects the other and vice versa. Community inequalities is another determinant that shifted Alicia’s overall health care experience. Social cohesion and social capital bridge the intermediary determinants to structural determinants. This describes the willingness for individuals in the community to make sacrifices and to cooperate with each other for a wider benefit. If we consider governance, policies, and values all found under the umbrella of structural determinants, we will find that this has led to an unequal distribution of material and monetary resources. There are tons of individuals that have such horrible experiences with health care. So, what made it so great for Alicia? Is it the fact that because she had Down Syndrome, she was entitled to more benefits that eased the financial burden? The qualifications for aid are distributed based on a set of guidelines all of which are different depending on what demographic is being helped. “Children with disabilities are eligible to receive Medicaid (government) insurance, regardless of family income” (Trisomy 21 Update, 12 Running Head: HEALTH CARE SYSTEM AND DOWN 2014). A lot of people struggle to get insurance, while Alicia has four different insurers. If we were to compare a kid without a disability, they wouldn’t qualify for Medicaid. It’s important to note that everything is a case by case basis. Everyone’s situation is different, which is important to acknowledge to avoid making large general conclusions. Nonetheless, a conclusion that can be made is that social determinants of health modifies one’s quality and accessibility to health care. Identifying the structural and intermediary determinants of health isn’t easy, for it requires actions in all sectors of society. This includes your local, national, and international levels. Actions will depend on the existing socioeconomic and political context, resources that are available, and the commitment. Luckily, for Rose it worked out in her favor. Her socioeconomic status, behavioral decisions, and the community inequalities are all interrelated factors that contributed to Alicia’s overall positive experience with the health care system. A visual illustrating how social determinants of education opportunity, process of education, and educational attainment all contribute to affect the outcome of one’s health (Zajacova and Lawrence, 2018).

References

Shi, Leiyu and Singh, Douglas (2018). Essentials of the U.S. Health Care System. Jones & Bartlett Learning. Retrieved from https://drive.google.com/file/d/1ObbDcPQbheV-GVVnjcJVRWilPYIaDgzL/view. Short, Susan E. and Mollborn, Stefanie (2016). Social Determinants and Health Behaviors: Conceptual Frames and Empirical Advances. NCBI. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4511598/. Trisomy 21 Update (2014). What You Need to Know About Insurance 15 Running Head: HEALTH CARE SYSTEM AND DOWN for Children with Down Syndrome. Children’s Hospital of Philadelphia. Retrieved from https://www.chop.edu/news/what-you-need-know-about-insurance-children-down-syndro me. Zajacova, Anna and Lawrence, Elizabeth M., (2018). The Relationship Between Education and Health: Reducing Disparities Through a Contextual Approach. Annual Reviews. Retrieved from https://www.annualreviews.org/doi/pdf/10.1146/annurev-publhealth-031816-044628.