Abstract
The purpose of the proposed study will be to examine the psychological and social issues that patients having Inflammatory Bowel Disease (IBD) with a newly formed stoma face from a perspective of stoma specialist nurses. While there lacks a cure of IBD, one of the treatment options is undergoing a stoma surgery. Unfortunately, for many IBD patients a stoma surgery means having to deal with a complex feeling of social, emotional, and physical problem associated with the formed stoma. These occurrences in a patient’s life have been largely associated with causing depression, anxiety, and deterioration of life quality. Considering only few data is available on the perspective of stoma specialist nurses on psychological and social issues that patients having Inflammatory Bowel Disease (IBD) with a newly formed stoma face, the study proposed will use an exploratory research design. The methodology to be adopted will be qualitative. The study will include stoma specialist nurses having five years experience on dealing with patients who have undergone stoma surgery. Primary data will be collected through open-ended interviews that shall be recorded. The recorded data will be transcribed for analysis using content and thematic analysis. Before collecting the data, consent will be obtained from all the respondents.
Table of Contents
Abstract 2
Introduction 4
Overview of topic 4
Mini literature review 5
Research Problem 8
Statement of Need 8
Purpose of Proposed Study 10
Researcher Positionality 10
Research Design 11
Research Question 11
Methodology 11
Participants 12
Data collection 12
Data analysis 13
Trustworthiness of Findings 13
Limitations 13
Significance 14
References 15
Introduction
Overview of topic
The proposed topic for the study is examining the psychological and social issues that patients having Inflammatory Bowel Disease (IBD) with a newly formed stoma face from a perspective of stoma specialist nurses. IBD is a concept that includes numerous diseases where a significant part of the intestines as well as other digestive system parts is inflammatory. There are two major categories of IBD; ulcerative colitis (UC) and Crohn’s disease (CD). While ulcerative colitis and Crohn’s disease are chronic infections, they are not contagious but heredity develops predisposition for them. IBD remains a long-life disease that has no cure. As a treatment option, people with this disease undergo surgery which often results into either a permanent or temporary stoma. According to Stjernman, Tysk, Almer, Ström, & Hjortswang, (2010) a major concern of IBD patients is the fear of developing a stoma in addition to disease and bowel control, fatigue, and unpredictability of disease (Lesage, Hagege, Tucat, & Gendre, 2011). Undergoing a stoma surgery means that the patients have to experience immediate physical changes in addition to a psychological impact, whose outcome is the formation of stoma. Therefore, patients have to deal with a complex feeling of social, emotional, and physical problem associated with the formed stoma. Consequently, these occurrences in a patient’s life can cause depression, anxiety, and deterioration of life quality (Sainsbury, & Heatley, 2005) particularly if not managed properly by specialist nurses and other stoma professionals. The proposed study will therefore seek to investigate psychological and social issues that IBD with a newly formed stoma face through the viewpoint of stoma specialist nurses. To achieve this purpose, the concept paper highlights the methodology of conducting the research.
The concept paper has been organized into three major sectors that include the introduction, research design and limitations. The introduction details a mini literature review, research problem, statement of need, purpose of the proposed study and researcher positionality. On the other hand, the research design provides for a research question, methodology, participants, data collection and analysis, and trustworthiness of the findings. Finally, the anticipated limitations are highlighted and the significance of the study.
Mini literature review
After formation of the new stoma, the most critical period for a patient is during the first weeks in the post-operative stage. According to Simmons, Smith, Bobb & Liles (2007) there are constant reports of social and psychological dysfunction in individuals who acquire a colostomy. Individuals might face difficulties when seeking to manage their stoma for example the inability to know how to change the stoma bag appropriately. According to Brown & Randle (2005), when this happens, patients can have a low mood. Simmons et al. (2007) states that at this point in time, offering necessary support and reassurances from friends, family and stoma professionals could offer much help. In their study, White & Hunt (1997) concluded that 18-26 percent of IBD patients who underwent surgery and resulted in stoma formation experienced psychological symptoms. According to Li (2009), the psychological change for patients with newly formed stoma is complicated. The first feeling that an individual has to experience is contradiction and denial (Li, 2009). After this, patients might feel anxiety and stress. When a person wakes up from anesthesia immediately the surgery has been performed, first time seeing the abdominal stoma can lead to suffering from injustice and anger (Wang, Wang, Ye & Guo 1999). Due to this, Li (2009) mentioned that during this period, the psychological trauma experienced by the patient might be severe than the pain emanating from the physical wound. While patients are prepared psychologically for the surgery, the lack of capability in controlling bowel movement and complication that emerge due to improper care easily cause panic, desperation, fear, and loss of confidence in life. Further, Li (2009) observed that when undergoing rehabilitation, patients consider themselves futile and disabled and often have fear of being discriminated. Xu & He (2011) reports that approximately 80 percent of stoma patients associate lifestyle changes to affecting their emotional state while 40% felt that sexual problem impacts on emotional feeling. In their study, Xu & He (2011) found out that medical staff did not discuss with the patients on the expected sexual changes, an aspect that highly contributes to low-self esteem. Xu & He (2011) also emphasized that urination disorder was a significant component that increases the psychological pressure among patients with newly formed stoma. According to Wu & Yan (2010) the lack of knowledge on stoma care is also a psychological issue that they have to deal with.
At the same time, IBD patients with newly formed stoma have to deal with social issues that are referred to as challenges to maintain quality of life and social relationships for instance embarrassment. Individuals with newly formed stoma must manage social changes and functional limitations. Patients face restrictions on social activities in addition to their free time. Having to cope with daily activities diminishes, some are forced to have early retirement, experience financial stress, alteration of self-image and change of roles (Avşar & Kaşikçi 2011).
Minimizing the psychological and social effects that patients with newly formed stoma have to face requires input from stoma specialist nurses. According to Davenport, (2014) the role stoma nurses play in rehabilitating individuals with newly formed stoma is of paramount importance. Borwell, (2009) noted that patients who have undergone stoma patient require specialist care that has the capability of meeting both their psychological and social needs. According to Waller, Chalmers, Jowett, & Disley, (2009) an emphatic specialist stoma nurse positively influences the patient’s quality of life as he or she is responsible for giving advice and educating the family and the affected. The primary role of stoma nurses is ensuring that the patient is adequately prepared for life after the stoma surgery and living with a stoma. Thus, it includes psychological counseling, assessing the willingness and capability of the person to care for the stoma, as well as physically identifying where to place the stoma. Borwell (2009) state that there is evidence to support the importance of the assessment and the preoperative meeting in terms of achieving successful rehabilitation. For many patients adjustment from the hospital to their home during the first few days and weeks after surgery can be difficult. Black (2009) argues that stoma patients might develop doubts on how to cope at home in particular because they are required to practically manage their stoma. According to Fearon et al (2005), one of the ways of ensuring that the patients return home with confidence is by establishment of a follow-up system that ensures health professionals provide routine contact after returning home. Mitchell (2013) points out that nurse-initiated call could be the best method of providing reassurance, and confidence to the stoma patients who are discharged. De la Quintana Jimenez et al, (2010) noted that when there is an intensive follow-up, the quality of life of the stoma patients is improved.
Marquis Marrel & Jambon (2003) further supports the stoma specialist nurses role of improving the quality of life during the first year following the stoma surgery through the findings that support provided after discharge was a significant component of improving life quality. Patients with a newly formed stoma can develop complications related to the surgery and quality of life complications even after six months. According to the findings by Pringle, & Swan (2001), only 33 percent of stoma patients resumed normal social activities after one year of their surgery.
Research Problem
Notwithstanding the available literature on the psychology and social issues that IBD patients with newly formed stoma face, there lacks extensive studies on the input of stoma specialist nurses. While the importance of stoma specialist nurses cannot be understated in terms of their positive influence to patients with newly formed stoma, few researchers have attempted to examine their perceptions and experiences on the psychosocial implications of the stoma-formation surgery. For many stoma specialist nurses, their role is faced with challenges among them communicating the importance of care in terms of quality (Vidall, 2011) and demonstrating their worth to the major stakeholders in terms of value and cost (Leary, 2011) considering many people lack knowledge of this particular nursing role. Therefore, conducting a study that relies on the perception of these stoma specialist nurses will be critical to gaining knowledge on psychosocial stoma issues and how they can be managed. The study will thus investigate psychological and social challenges associated with newly formed stoma from the viewpoint of specialist nurses.
Statement of Need
In 2015, it was estimated that 1.3 percent of the United States adult population which translated to 3 million people had been diagnosed with IBD. In 1999 it was approximated 0.9 percent of the adult population which was 2 million had been diagnosed with IBD. The difference shows a large increase. Individuals who are more likely to be diagnosed with the disease includes those aged 45 years and older, people with less education level, those not in employment, and those living in poverty. The estimates do not include children who are young considering that diagnosis for the disease is often done by people in their 20s and 30s. Across the United States, annually, there are about 24,000 people who undergo surgery often resulting in a temporary or permanent stoma. Considering the high incidence rate of IBD, the public health burden continues to increase. Apart from this, the psychosocial impact caused by the newly formed stoma to thousands of patients and their families is critical as it reduces productivity. For many patients who have undergone a stoma surgery, the sense of the disease controlling how they live is common (Woodward, et al. 2016). Anxiety and depression are mainly identified in almost previous studies (Skrautvol & Nåden 2017). Todorovic (2012) stated that in comparison to the public, patients with IBD have a double risk of suffering from depression. Among the factors, contributing to the high levels of depression is the lack of social support. Other psychological effects include constant experiencing of fatigue, psychological stress, self-image changes and numerous concerns and fears. At the same time, IBD affects social activities and is a major cause of distress in social relationships (Woodward, et al. 2016) and at the same time negatively causes problems during leisure activities (Magalhães et al. 2014). There is the fear that patients social activities are restricted including their partners. Often, due to these aspects, Sammut et al. (2015) noted that social withdrawal often occurs particularly due to fear of situations that are embarrassing. Due to these psychosocial aspects, it is significant to understand them from the point of view of stoma specialist nurses who have the responsibility of caring for these patients before and after the surgery with an aim of mitigating the expected psychological and social challenges.
Purpose of Proposed Study
The purpose of the proposed study will be to examine the psychological and social issues that patients having Inflammatory Bowel Disease (IBD) with a newly formed stoma face from a perspective of stoma specialist nurses.
Researcher Positionality
My research interests are a reflection of the experiences that I have got with individuals with a newly formed stoma. Over the years, I have interacted with people with IBD and to some extent seen the psychological and social challenges that they undergo especially after undergoing a stoma surgery. My hope is that the results from the study will be significant in shedding more light on the psychosocial challenges that people with a newly formed stoma face and how they can be minimized from the perspective of stoma specialist nurses. I will collect the necessary data and analyze it for purposes of making meaningful conclusions.
Research Design
The study proposed will be conducted using an exploratory research design. The exploratory design is used when investigating a problem where only few studies or no past data is available to be a reference (Creswell, & Creswell, 2017). When using this research design, the researcher seeks to examine the nature of the problem in addition to having a better understanding of the problem. An exploratory study is flexible and is critical in providing original background for researches to be conducted in the future. In the proposed study, the researcher will seek to collect data from stoma nurses who have experience in relation to the psychosocial issues that patients with newly formed stoma have to face. Previously, there exists lack of extensive data findings on how stoma specialist nurses perceive psychological and social issues that individuals with stoma experience. Consequently, the exploratory design will be perfect for conducting the current proposed research.
Research Question
The question under investigation will be; what are the psychological and social issues that patients having Inflammatory Bowel Disease (IBD) with a newly formed stoma face from a perspective of stoma specialist nurses?
Methodology
A qualitative research will be adopted for this particular study. In a qualitative study, the researcher’s main tool for data collection is interviews. The choice of qualitative method was deliberate because of the research problem under investigation. The researcher seeks to understand the genesis of psychological and social issues that affects patients with newly formed stoma from the perspective of stoma specialist nurses. Thus, to have an understanding of these challenges, the research will have to interact with the respondents. Qualitative study allows for open-ended interviews which provide an opportunity for the researcher to ask follow-up questions in matters that the provided answer was not sufficient (Maxwell, 2012). At the same time, through this method there will be no restrictions to the respondents in relation to what they can reply. At the end of the process the researcher will have gained more insight than anticipated.
Participants
The proposed research will seek to examine the perception and experiences of stoma specialist nurses on the experiences of IBD patients with a newly formed stoma. Consequently, stoma specialist nurses will be the research participants. The participants will be recruited from local institutions that provide stoma surgery services for patients with IBD. The recruitment process will be through the facility administration. Considering the lack of many stoma specialist nurses the researcher targets to recruit at least 15 individuals. The inclusion criteria will involve being a registered stoma nurse, and have a minimum of five years caring for stoma patients. On the other hand, those to be excluded will be those who have less than five years working experience as stoma nurse, and other medical professionals for instance managing IBD patients. In the study proposed there will be no incentives provided and hence will be a voluntary exercise. During the recruitment process the researcher will ensure that this is communicated to potential respondents for their decision making.
Data collection
Data for the study proposed will be collected using open-ended interviews as the main and only instrument. Primary data that is raw will be collected from the respondents in this case the stoma specialist nurses. The researcher will gather the primary data. The interviews will be scheduled with each participant based on their schedule and shift. All the interviews will be done inside the IBD facility. An audio record of the interview will be done with the consent of the respondent. Considering the shortage of nurses, the researcher will ensure that relevant data is gathered within the shortest time possible.
Data analysis
Analysis of the collected data will be done through content and thematic analysis. However, this will be after transcription of the recorded interviews. Transcribing the recordings will be critical in making the analysis. Thematic analysis allows data collected to be rearranged into themes that form a similar pattern. These themes will be about psychosocial issues that face patients with newly formed stoma and ways to minimize the negative effects.
Trustworthiness of Findings
The findings of the study will be considered trustworthiness because the researcher will not in any influence the data collection process. Ethical considerations required when conducting a study that involves human subjects will be adhered to among them obtaining consent from the participants. Secondly, the privacy and confidentiality of the stoma specialist nurses will be observed. Finally, the collected data including the audio records will be stored in a place where no third parties gain unauthorized access.
Limitations
The anticipated limitations of the study would include budget constraints and the research sample size
Significance
Conducting the proposed study will be significant for a number of stakeholders including the patients, their families, the government, and stoma specialist nurses. For the nurses, they will get to understand more on how to provide adequate care to stoma patients. On the other hand, stoma patients will benefit from the necessary support they require from family members and friends.
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