Free The Lived Experiences of People with Sickle Cell Disease and Acquiring Health care Dissertation Example
The Lived Experiences of People with Sickle Cell Disease and Acquiring Health Care
Dissertation Proposal Submitted in Partial Fulfillment
of the Requirements for the Degree of
Doctor of Philosophy
People with sickle cell disease (SCD) often face recurring and severe episodes of pain requiring them to frequent emergency rooms for treatment. For many people with SCD employment is not maintainable and episodes can lead to organ failure leaving family members and caretakers the responsibility of making their health care decisions. Research has documented the treatment and evaluation of SCD, but no treatment prevention has been explored. As the SCD population increases, so do the need for access to quality healthcare. This proposal will describe the experiences of people with SCD ages 21-35 and acquiring health care. This proposal will also address current literature regarding physical and psychological debilities, barriers with access to primary care physicians, the theoretical basis, which guides this research, as well as the suggested methodology to understand the SCD patients’ experiences and acquiring health care. The phenomenological inquiry will help to comprehend the experiences of life of these patients.
Keywords: sickle cell disease (SCD), SCD population, treatment, evaluation
Table of Contents
TOC o “1-3” h z u CHAPTER 1 PAGEREF _Toc526188023 h 4Introduction to the Study PAGEREF _Toc526188024 h 4Background of the Problem PAGEREF _Toc526188025 h 7Statement of the Problem PAGEREF _Toc526188026 h 10Research Questions PAGEREF _Toc526188027 h 11Purpose of the Study PAGEREF _Toc526188028 h 12Theoretical Framework PAGEREF _Toc526188029 h 12Operational Definitions PAGEREF _Toc526188030 h 14Assumptions, Limitations, Scope, and Delimitations PAGEREF _Toc526188031 h 15Assumptions of the Survey PAGEREF _Toc526188032 h 15Limitations of the Survey PAGEREF _Toc526188033 h 15The Scope of the Study PAGEREF _Toc526188034 h 16Delimitation Criteria PAGEREF _Toc526188035 h 16The Significance of the Study PAGEREF _Toc526188036 h 16Summary of Chapter One PAGEREF _Toc526188037 h 17References PAGEREF _Toc526188038 h 17
CHAPTER 1Introduction to the StudySickle cell disease (SCD) denotes a chronic condition of the blood which often results in repeated and unprompted crises of pain, resulting in organ dysfunctions, pulmonary problems, as well as several other infections (Puri et al., 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 et al., 2016). According to Jenerette et al., 2014, such clinical manifestations can sometimes cause feelings of inadequacy about the patient’s ability to access care. SCD patients face numerous barriers when seeking care, including stigmatization as opioid addicts, negative provider attitudes as well as being mistrusted or questioned about their reports of pain (Treadwell, Barreda, Kaur, and Gildengorin, 2015).
One of the primary reasons for ED (emergency department) visits for SCD patients is pain specifically VOE (vaso-occlusive pain episodes). However, there are barriers to appropriate and rapid care for patients with VOE in the ED. Such restrictions include systems-based limitations like staffing limitations where nurses are fewer than patients and constraints of facilities like the absence of enough ED rooms to use for attending to the SCD patients (Treadwell et al., 2014). Other barriers associated with management of pain at the ED section include misunderstanding and biases among healthcare providers concerning sickle cell pain as well as sufficient dosing of medication. These provider biases frequently result in inadequate management of the pain which may cause pseudoaddiction in addition to a series of increased inpatient and ED utilization (Treadwell et al., 2014).
Another barrier associated with adequate ED treatment of SCD patients is related to prior negative experiences of the patients in the ED, which may lead families and patients to delay or avoid seeking care regardless of the VOE pain. Recent research has indicated that patients had conveyed frustration for not being considered after reporting their pain, insufficient administration of analgesics, preoccupation of the healthcare staff with fears of drug dependence as well as general absence of trust and respect from the healthcare staff (Treadwell et al., 2014).
Access to health care is critical for individuals who have sickle cell disease. Access might be defined as the ability to produce services as well as address the health needs of a specific group (Cancado, 2011). Accessing health care is essential given that patient satisfaction should be the outcome of care delivery and determining and responding to satisfaction is critical concerning not only treatment compliance but also the extent of utilization of the healthcare system (Adams-Graves, Bronte-Jordan, & Bronte-Jordan, 2016).
Apart from patient satisfaction, the assessment of development and growth particularly of children enables the detection of the health status of the child with the sickle cell illness. Moreover, during follow-up, it is possible to identify issues which can interfere with the process of growth and development of a child, thereby reducing the severity or occurrence of the sickle cell illness (Matthie, Hamilton, Wells and Jenerette, 2016). Therefore, in the case of children, child rearing consultations for the disease are chiefly intended to prevent acute conditions and the development of chronic diseases that may compromise multiple tissues and organs.
Feelings of inadequacy are other barriers that hinder SCD patients from accessing primary health care. 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. 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 and Brewer, 2010). Such a standard of shame may result in unfair drawbacks for the stigmatized parties like direct prejudice in schools, within the families as well as at the workplace, and can impact the receipt of quality and timely healthcare. Furthermore, certain illnesses like episodes of poorly treated pain as well as depression can result in feelings of inadequacy including even ideations of committing suicide in patients with SCD. According to a survey conducted by Jenerette and Brewer (2010), adult patients suffering from SCD have previously reported low self-esteem feelings in addition to the opinions of hopelessness due to frequent hospitalizations, recurrent pain as well as the consequent loss of jobs.
Anemia affects people adversely. For instance, it delays the developmental processes of the youths. Another effect is fatigue that hinders patients from engaging in regular physical activities. The patients have insufficient breathing patterns that limit the supply of oxygen in the body cells (Bender, 2017). Thus, this study illustrates the unique experiences of patients with SCD. These are some of the surveys that have a look at the effect individuals with SCD face when acquiring health services. Other investigations are evaluated in the literature review in Chapter 2.
Background of the ProblemSCD is a genetic condition, which affects nearly 100,000 people in the US (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). Concerning the genetic feature is social environments of patients with SCD that are associated with direct inferences, which profoundly impact the biological disease and assertively contribute by aggravating the illness. Generally, patients with SCD come from low socioeconomic settings including difficulties in accessing healthcare where the majority is attended by government health services as well as bad schooling. 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 regular treatments, which are given to the SCD patients (Ribeil et al., 2017). The procedures include monthly blood transfusions and periodic screenings (Ribeil et al., 2017). These conditions explain the unquestionable complications that SCD patients face in their day-to-day lives and which are responsible for their greater social vulnerability status (Jenerette and Brewer, 2010).
Generally, genetic conditions do not have definitive guidelines for primary health care (Cançado, 2011). Therefore, loss of adequate follow-up of families may take place. Furthermore, the focus of SCD has been on specialized treatment, and there are minimum guidelines concerning how to construct primary care in a situation associated with genetic diseases. Cançado (2011) notes that there is a difference between SCD and other genetic illnesses like diabetes mellitus because SCD is incorporated in the primary treatment guidelines proposed by various states as well as different federal governments across the globe. Nevertheless, there are no primary care procedures similar to those indicated for chronic ailments like diabetes mellitus and hypertension. This gap may present difficulties of access to treatment since healthcare professionals may not acknowledge their part in delivering care for SCD patients (Cançado, 2011). Therefore, this survey is intended to evaluate the efficiency of services offered to the SCD patients by professional healthcare practitioners in addition to their knowledge on the available guidelines of managing SCD cases.
With improvements in managing SCD in the pediatric age cluster, several patients with SCD survive to adulthood. Even though there is an increase in life expectancy, evidence suggests that patients experience growing mortality rates during the period of transition from pediatric to adulthood. (Bemrich-Stolz et al., 2015). Most researchers of pediatric SCD patients including other chronic ailments have directed their fears on patients before transition, but few have studied patient experiences of SCD patients who have joined adult care. Therefore this study utilizes a phenomenological qualitative technique to examine the lived incidences of SCD patients between the age of 21 and 35 years in addition to the difficulties they face during their care, which contribute to higher mortality rates.
Variations and gaps in the excellence of medical healthcare lead to poor results for adult youths suffering from SCD. There is a wide quality gap in the medical management of SCD patients because of limitations like untimely and inadequate assessment and management of patients with VOE in the emergency room and feelings of inadequacy (Treadwell et al., 2014). Therefore, the purpose of this survey is to provide reasons for such an occurrence by investigating the lived experiences of SCD patients by answering the research questions. One of the issues intended to be solved is struggles that young SCD patients aged between 21 and 35 years face in trying to achieve or maintain a good quality of life. Another question is involves the strategies that young SCD patients aged between 21 and 35 years utilize to support self-care. Other questions concern the perceived barriers to acquiring health care services by adults aged between 21 and 35 years and how health experts assist the youths in the childbearing age, 21 to 35 years, in mitigating the genetic transmission of SCD to their children.
The theoretical framework of the paper embodies a qualitative research study with a phenomenological approach using the Health Belief Model (HBM) as the conceptual framework. Most researchers have previously successfully used the HBM approach to for highlighting the lived experiences of people suffering from genetic disorders and acquiring health care (Tanabe et al., 2010; Treadwell et al., 2014). Since inadequate pain management in patients with SCD, negative provider attitudes and lack of trust in SCD patients are some of the chief objective pointers of decreased quality of care, the HBM model defines ‘distress-raising’ events and actions as the guidelines of the study (Tanabe et al., 2010; Treadwell et al., 2014). The model employs various vital components and constructs for highlighting the lived experiences of people with SCD such as perceived severity, perceived threat, and perceived benefits.
The nature of the study is qualitative phenomenological research intended to understand the beliefs and attitudes as part of their lived experiences of adult youths with SCD. It is essential to determine the fears that are justified as well as which new concerns are recognized in adult youths ailing from SCD to develop precise modalities to address the concerns. Because of the multifaceted nature of such individual issues as the barriers to accessing care, phenomenological qualitative research was chosen to enable a generation of theoretical inductive research on the topic of lived experiences of individuals with SCD and issues associated with their access to primary care.
Statement of the ProblemThe specific population of individuals who live with the SCD condition is not known. The Center for Disease Control (CDC) in collaboration with other health institutions offer resource support to the health research projects that aim at understanding the patient population with SCD and improve the knowledge of how the disease affects the health and wellbeing outcomes. Patients who have SCD are unable to access adequate health care, unlike other patients who have genetic conditions, such as cystic fibrosis or hemophilia (Ribeil et al., 2017). SCD is a significant health issue to the high cost of care. For example, between 1989 and 1993 in the United States, there were about 75,000 admissions in health institutions because of the SCD condition (Piel, Steinberg & Rees, 2017). The total care expenses during the period are approximately $475 million (Piel, Steinberg & Rees, 2017). The youths are in the childbearing stage of life, and as a result, they can pass the condition on to their children genetically and bear the additional care costs (Piel, Steinberg & Rees, 2017).
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. Most families that live in poverty stay in arrears that are quite far from accessible health care institutions which can manage SCD. Such long distances pose as a barrier to access of primary care for SCD because of increased costs associated with travel expenses. As I dilemma, the patients in this situation may develop a sense of hopelessness in modern medicine or ignore the SCD illness and choose alternative medications for treatment of Batina et al., (2017). For instance, traditional and self-care therapies are often used to manage medical conditions like SDC where in some cases there is even involvement of spiritual intervention (Busari and Mufutau, 2017). The broad, primary research questions utilized to gain insights into the lived experiences of individuals ailing from SCD are as follows:
Research Questions 1. RQ1 – How common do adults between 21 and 35 years with SCD access the health care system and how efficient are the services delivered?
2. RQ2 – What are the perceived barriers to acquiring health care services by adults aged between 21 and 35 years?
3. RQ3 – What are the struggles that young SCD patients aged between 21 and 35 years face in trying to achieve or maintain a good quality of life?
4. RQ4 – What are the strategies that young SCD patients aged between 21 and 35 years utilize to support self-care?
5. RQ5 – How do adults between the age of 21 and 35 years with SCD experience interruptions to the workplace, family and social roles?
6. RQ6 – How can the health experts assist the youths in the childbearing age, 21 to 35 years, in mitigating the genetic transmission of SCD to their children?
Purpose of the StudyThis qualitative phenomenological research will help to understand the health care beliefs of the study participants and identify the barriers to accessing health care. The goal of this inquiry is to describe the experiences of people with SCD and to acquire primary care health services once they transition from minors to adults between the ages of 21-35. There is a necessity to understand the care needs of SCD-affected individuals comprehensively to ensure that evidence-based therapeutic interventions can be done to address the gaps in disparities. The literature in this study will provide an understanding that besides alleviation of physical incapacities such as bodily pain, SCD-affected individuals face psychological weaknesses and barriers with access to primary care physicians. The methodology used to investigate this phenomenological approach will be provided in Chapter 3 and Appendix B.
Theoretical FrameworkThis paper is a qualitative research study with a phenomenological approach using the Health Belief Model (HBM) as the conceptual framework. This approach is supported by the delineate criteria for ‘distress-raising’ events and actions, which have been found to be objective pointers that pain management is unsuccessful and the trust between the patient and provider is broken (Tanabe et al., 2010; Treadwell et al., 2014). The survey questions are closely connected to the problem statement as well as the study purpose. Thus, this will be an experimental study design employed with the aim of discovering qualitatively the different ways in which people with SCD conceptualize and understand various aspects of pain management and access to primary care physicians. The phenomenological design is necessary since it enables the researchers to collect authenticity data based on the ways the respondents experience a phenomenon, the way they see it, perceive it, and the way they apply the skills related to it (Porter et al., 2012). The proposed study will employ the health belief model (HBM), which is a psychological paradigm that focuses on people’s beliefs and attitudes as part of their lived experiences to anticipate and elucidate health-related behaviors. The HBM attempts to explain the thoughts and actions of individuals regarding their health behaviors, as well as how this influences their attitudes toward acquiring health care (Skinner et al., 2015).
The model will be used in determining the health-related behaviors of persons with SCD, and it employs various vital components and constructs that make it appropriate for highlighting the lived experiences of people with SCD and acquiring health care. Such components include perceived severity, perceived threat, and perceived benefits. However, there should be expected in this study concerning its effectiveness in predicting and effecting behavioral change, that it makes it hard to draw conclusions based on the use of the HBM (Skinner et al. 2015). It is imperative to encourage SCD patients to seek appropriate information from health practitioners. The information is critical in improving the care processes of the patients and help them understand the knowledge of effective care medication (Bender, 2017). The patients can access useful information by communicating with health professionals in private clinics or public institutions. Also, there are online platforms that enable SCD patients to share helpful care information with each other.
The patients should have sufficient self-efficacy skills to enable them to have adequate crisis prevention strategies. Self-efficacy allows them to have enough confidence to seek important medication and care programs (Piel, Steinberg & Rees, 2017). The patients understand that the SCD condition is manageable, and with proper treatment, nutrition, and exercise, they can live a long life with sufficient wellbeing and quality of life. Counseling is important in enhancing the crisis-prevention programs. The health practitioner must create a good environment for the patients to participate in the counseling activities (Bender, 2017). Counseling improves the mental health of the patients. Furthermore, they get the motivation to seek medical solutions and think about the strategies for furthering their wellbeing (Bender, 2017).
Operational DefinitionsSCD – Sickle Cell Disease is a condition which upsets the RBCs (red blood cells). This disease results in pain and organ dysfunction in the human body. There is no cure, but medications that prolong life and make the patients comfortable are available (Bender, 2017).
Crisis prevention programs – Formal activities that aim at improving the health and wellbeing of SCD patients. Patients are encouraged to adhere to the medication schedule and live a healthy life to have a good quality of life (Bender, 2017).
Healthcare – It is the professional service that aims at improving the well-being and quality of life of patients. Healthcare involves the provision of medications that treat or enhance the management of health conditions like SCD (Piel, Steinberg & Rees, 2017).
Lived experience – Implies the wellbeing of patients. SCD is a painful condition and, therefore, patients experience trauma. Health practitioners are necessary for developing the medication that makes the patients live a comfortable life. Some medicines lower pain levels and prolong the life of the patients (Piel, Steinberg & Rees, 2017).
Phenomenological inquiry – A research approach that aims at understanding the thinking and behavior approaches of individuals. It is important in the SCD study as the patients experience physical pain and trauma. There is no cure for the condition, and thus the patients must be mentally and physically ready to adopt lifelong care practices (Ataga et al., 2017).
HBM model – Health Behavioral Model analyzes the beliefs and attitudes of patients with the aim of improving their lived experiences and enhancing their healthcare-related behavior (Bender, 2017). For example, counseling enables an individual to adhere to the treatment schedule effectively.
Assumptions, Limitations, Scope, and DelimitationsAssumptions of the SurveyThe investigation assumes that the participants will provide honest and transparent responses to the research questions since they are SCD patients who are also looking to reduce mortality and morbidity. The participants’ personal information including their names will be strictly kept anonymous and confidential.
The survey also assumes that young adults with SCD possess insight into their illness which enables them to elaborate and discuss the topic lived experience with the ailment. Young adults suffering from SCD have been shown to have the capability to self-reflect on previous life and elaborate on those experiences with regards to their condition (Matthie, Hamilton, Wells and Jenerette, 2016).
Limitations of the SurveyThe participants must articulate their feelings and thoughts concerning their lived experiences. However, some of them may find difficulties in expressing themselves because of issues like stigmatization, language barrier, cognition and embarrassment (Jenerette and Brewer, 2010).
The survey requires interpretation from the researcher which makes phenomenological reduction a significant aspect of this research to minimize assumptions, pre-conceived ideas, and biases about the experience of young adults with SCD (Bender, 2017). However, it is essential to note that researcher bias is very difficult to detect or determine.
The Scope of the StudyThe inclusion criteria of the survey are young adults with SCD and who are aged between 21 and 35 years.
However, the excluded individuals include family members of SCD patients who do not ail from the condition as well as the healthcare providers of the participants.
Delimitation CriteriaThe study is limited to young adults with SCD.
The ethnic diversity of the study participants might impact their cultural and social perceptions.
The Significance of the StudyThis study will add to the current literature that describes the impact of access to health services for people with SCD. By looking at the experiences of patients with SCD and acquiring health care, it will be possible to describe their lived experiences and understand how gap disparities in the quality of care and treatment of pain can be addressed to ensure improved care for this patient population. Previous research has primarily looked at evaluating and treating SCD, not at treatment intervention. It is not known what people with SCD between the ages of 21-35 experience in acquiring health care, this study can add to existing literature focusing on the barriers of accessing health services for people with SCD. This study intends to capture the professional and public attention to make them aware that this growing population requires access to primary care physicians. The outcome of this study may also provide insight into developing appropriate treatment interventions for people with SCD. Out-patient care facilities, public health programs, and all others providing treatment intervention services to people with SCD can benefit from what is learned in this study by creating policies and procedures that would meet the healthcare requirements of this population.
Summary of Chapter OneSickle cell anemia (SCD) mainly refers to a chronic blood condition, which produces considerable pain and afterward leads to organ dysfunctions and pulmonary problems, among other complications. Individuals with this disease not only experience significant pain but also lack access to adequate care due to various barriers. These people also face a challenge of not attaining and maintaining employment due to their condition. Besides that, their families or caretakers have the burden of having to assist them in health care decision-making. Therefore, this chapter provides background information on the SCD condition, how to manage it, who is most affected and so forth. It then aims to look at the needs and experiences of a specific population of people (between age 21 and 35) with SCD. Ultimately, this chapter introduces some theoretical framework to help understand this population, various operational definitions, assumptions, limitations, scope, and delimitations, in addition to the significance of the survey.
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