What is your experience as a young adult age 21-35 with SCD transitioning from adolescent to adult care, specifically acquiring a primary care physician? How did it affect your daily living?

CHAPTER 1: Introduction to the Study

Sickle cell anemia disease (SCD) is an illness that impacts the blood and often results in recurring and unprompted crises of pain, organ dysfunctions, pulmonary problems, as well as several other infections (Puri, Haywood, Beach, Lanzkron, Guidera, Valenzuela-Araujo, Rothman, & Dugas, 2016). Even though advances in the treatment of SCD have reduced the pain and lengthened survival, people with SCD frequently experience random episodes of acute pain that necessitate health care visits (Evensen, Treadwell, Keller, Levine, Hassell, Werner, & Smith, 2016). According to Jenerette et al. (2014), such clinical manifestations can sometimes cause feelings of inadequacy about the patient’s ability to access care; patients may face stigmatization or questioned about their reports of pain (Treadwell, Bell, Leibovich, Barreda, Marsh, Gildengorin, and Morris, 2014).
One of the primary reasons individuals with SCD visit the emergency department (ED) is because they have a pain crisis, also known as vaso-occlusive pain episodes (VOE) (Treadwell et al., 2014). Some of the barriers they face are lack of appropriate and rapid care in treating VOE, systems-based staffing limitations where there are fewer nurses than patients, lack of primary care physicians that specialize in treating the disease, and constraints of facilities like the absence of enough ED rooms to use for attending to SCD patients (Treadwell et al., 2014). Other barriers associated with access to care at the ED include misunderstandings and biases among healthcare providers concerning sickle cell pain and sufficient dosing of medication (Treadwell et al., 2014). These provider biases frequently result in inadequate treatment of the pain, which may cause pseudo addiction in addition to a series of increased inpatient and ED utilization (Treadwell et al., 2014). Negative experiences with the delivery of health care received by patients with SCD in the ED have lead families and patients to delay or avoid seeking care regardless of the VOE pain (Treadwell et al., 2014). Recent research has indicated that patients have conveyed frustration for not being considered after reporting their pain, insufficient administration of analgesics, and preoccupation of the healthcare staff (Treadwell et al., 2014).
Feelings of inadequacy are other barriers that hinder SCD patients from accessing primary health care (Jenerette & Brewer, 2010). Medical manifestations of SCD frequently result in unpredictable feelings of inadequacy as well as pain concerning the care of SCD patients, which may be an outcome of health-related stigmatization (Jenerette & Brewer, 2010). Stigma induces negative beliefs and attitudes and often leads to the discernment of the institution or that of an individual in different ways of life (Jenerette & Brewer, 2010). Such a standard of shame may result in unfair drawbacks like direct prejudice in schools, within the families as well as at the workplace, and can impact the receipt of quality and timely healthcare (Jenerette & Brewer, 2010).
According to a survey conducted by Jenerette and Brewer (2010), adult patients suffering from SCD have previously reported lack of access to primary care physicians in addition to inadequate treatment of pain in the ED resulting in increased hospitalizations; recurrent pain; and consistent lack of employment. Thus, this study will explore how lack of access to primary care physicians affect young adults with SCD ages 21-35 when transitioning from adolescent to adult care. The theoretical framework, which may give an understanding of the beliefs and attitudes of people with SCD regarding healthcare, is discussed in Chapter 2.
Background of the Problem
SCD is a genetic condition, which affects nearly 100,000 people in the United States (Ribeil et al., 2017). In the African American community, about one out of 500 individuals have this disease (Ribeil et al., 2017). SCD is a multi-systemic condition that has several complications; for example, stroke, recurrent pain, pulmonary complications, anemia, and joint pain (Ribeil et al., 2017). The social environments of patients with SCD are associated with direct inferences, which profoundly impact the biological disease and assertively contribute to pain. Generally, patients with SCD come from low socioeconomic settings which add to the difficulties in accessing healthcare because a majority relies upon government health services as their insurance provider (Ribeil et al., 2017). Lack of quality education is high amongst people with SCD. For instance, youths who have the SCD condition have high absence rates in the learning or work environment (Ribeil et al., 2017). The absenteeism is due to uncontrolled and unpredicted pain episodes. People with SCD should undergo regular treatments that include procedures such as monthly blood transfusions and periodic screening (Ribeil et al., 2017). These treatments help to reduce some of the unquestionable complications that SCD patients face in their day-to-day lives (Jenerette & Brewer, 2010).
Generally, genetic conditions do not have definitive guidelines for primary health care (Cançado, 2011). Therefore, loss of adequate follow-up from the patent and lack of assistance from family may take place (Cancado, 2011). Furthermore, the focus of SCD has been on specialized treatment due to minimum guidelines concerning how to construct primary care in a situation associated with genetic diseases (Cançado, 2011). According to Cançado (2011), the difference between SCD and other genetic illnesses like diabetes mellitus is that SCD is not incorporated in the primary care treatment guidelines proposed by various states and different federal governments across the globe. Nevertheless, there is a lack of access to primary care providers specialized in treating SCD as compared to providers available who specializes in treating chronic ailments like diabetes mellitus and hypertension, to treat SCD (Cancado, 2011). This gap addresses difficulties of access to primary care physicians since healthcare professionals lack the knowledge of how to deliver quality care to SCD patients (Cançado, 2011).
With improvements in managing SCD in the pediatric age cluster, several patients with SCD survive to adulthood (Bemrich-Stolz, Halanych, Howard, Hilliard, and Lebensburger, 2015). Researchers of adolescent with SCD have explored the experience of patients before transitioning to adult care, but none have studied the experiences of young adults age 21-35 with SCD and acquiring primary care when transitioning from adolescent care to adult care (Bemrich-Stolz et al., 2015). According to Shi (2012), lack of primary care physicians destroy the cornerstone that builds an individual’s healthcare system effecting health outcomes and equity. Shi (2012), confirmed that having a primary care physician enhances access to healthcare services, leads to better health outcomes, and decreases hospitalization and use of emergency department visits. Shi (2012) further elaborated that having a primary care physician can help stabilize the negative effect of poor economic conditions on health. This study utilizes a phenomenological qualitative technique to examine the lived experiences of this transition of young adults between the age of 21 and 35 years and their perspectives when accessing a primary care physician.
Variations and gaps in the delivery of medical healthcare lead to poor results for adult youths suffering from SCD (Treadwell et al., 2014). There is a quality gap in the medical management of SCD patients because of lack of access to primary care physicians, lack of physician knowledge on how to treat the disease, and the cost to maintain a healthy life with this illness (Treadwell et al, 2014.). One of the issues to be explored is the participant’s perspectives on access to primary care physicians and how this impacts the delivery of healthcare services they receive to maintain a good quality life.
Stigmatization is the process of identifying an attribute of a person or group and describing or regarding that individual as someone worthy of disgrace or great disapproval (Jenerette & Brewer, 2010). People with SCD face health-related stigma because of their condition and are looked upon as a form of devaluation, pre-judged, or a type of social disqualification because of their illness (Jenerette & Brewer, 2010). Health-related stigma is on the rise becoming a serious public health issue that adds to the burden of individuals and families affected by SCD (Jenerette & Brewer, 2010). According to Jenerette and Brewer (2010), stigmatization might begin with a parent of the affected individual. Daily coping challenges reported by parents of people with SCD are fear of their children dying; separation anxiety; and feelings of vulnerability, seclusion, and isolation (Jenerette & Brewer, 2010). These insights and sensitivities of parents of children with SCD may lead to intensified levels of domineering behaviors that impact the child’s life and may negatively influence self-care behaviors and overall health outcomes (Jenerette and Brewer, 2010).
This qualitative research study embodies a phenomenological approach using the Health Belief Model (HBM) as the theoretical framework. Researchers have previously successfully used the HBM approach for highlighting the lived experiences of people suffering from genetic disorders and acquiring health care (Tanabe et al., 2010; Treadwell et al., 2014).
The nature of this study is qualitative phenomenological research because it is essential to understand the experiences of young adults with SCD between the ages of 21-35 and acquisition of a primary care physician when transitioning from adolescent to adult care. Because of the multifaceted nature of accessing quality care, phenomenological qualitative research was chosen to enable a generation of theoretical inductive literature on the topic of lived experiences of individuals with SCD and accessing primary care.
Statement of the Problem
The number of individuals who live with the SCD condition is not known (Center for Disease Control and Prevention, 2017). The Center for Disease Control and Prevention (CDC) (2017), in collaboration with other health institutions, offer resource support to the health research projects that aim at understanding the patient population with SCD to improve the knowledge of how this disease affects health and well-being outcomes. According to a survey conducted by Batina et al. (2017), 93.6 % of their subjects reported that they were unable to access primary care associated with SCD since it was primarily unaffordable. Also, there is a lack of primary care physicians with accessible health care institutions that can manage SCD (Batina et al., 2017). Most SCD young adult patients experience different needs and challenges when it comes to handling and living with SCD and acquiring a primary care physician (Bemrick-stolz et al., 2011). It’s essential for primary care physicians to understand the needs and challenges of SCD patients in order to know how this disease affects the health and the well-being outcome of this population.
The research questions utilized to gain insight into the lived experiences of young adults with SCD acquiring a primary care physician are as follows:
Research Questions
1. What is your experience as a young adult age 21-35 with SCD transitioning from adolescent to adult care, specifically acquiring a primary care physician? How did it affect your daily living?
2. At what age did you obtain a primary care physician, and what was your experience?
3. Did you experience any challenges when seeking primary care services when transitioning from adolescent to adult care? Tell me about this experience?
4. What factors influenced you as a young adult with SCD to seek care from a primary care physician?
5. On a scale of 1-5 with 5 being extremely knowledgeable, what was your perceived knowledge as a young adult about SCD? How old were you when you gained this knowledge?
Purpose of the Study
The purpose of this study is to describe the experiences of young adults between the ages of 21-35 with SCD and acquisition of a primary care physician once they transition from adolescent to adults. There is a necessity to comprehensively understand the care needs of SCD-affected individuals to ensure that evidence-based therapeutic interventions can be done to address the gaps in health services. The literature in this study will provide an understanding that besides alleviation of physical debilities such as bodily pain, SCD-affected individuals experience challenges when accessing primary care physicians. The methodology used to investigate this phenomenological approach is provided in Chapter 3 and Appendix B.