Challenges Nurses Face in Delivering End of Life Care to Pediatric Oncology Patients Living in Rural Areas
A Research Proposal
Background...
Worldwide, an estimated 165 300 children are diagnosed with cancer yearly; 25 percent of these diagnoses have a terminal prognosis (Bell, Skiles, Pradhan, & Champion, 2010). When given a terminal prognosis, nursing care shifts from a curative focus to an end of life (EOL) focus where the goal of nursing interventions are to improve comfort and alleviate pain rather than achieve recovery (Bell et al., 2010; Montgomery, Sawin, & Hendricks-Ferguson, 2016). Due to escalated pediatric oncology mortality rates, nursing EOL care approaches have gained attention in an interest to better understand contributing factors that lead to positive patient experiences in their EOL treatment (Jantsch, Neves, Arru, Pieszak, & Gheller, 2012). According to Bell et al. (2010), registered nurses are often viewed as the foundation to patient care due to the fact that they spend the most time with patients and thus hold the most influence on patients and family members, as well as maintain roles which largely contribute to patient’s satisfaction and well-being. Given these identified circumstances, investigating nurses understanding of, and implementation of EOL care has been valuable in progressing the nursing profession in pediatric oncology and helped identify challenges nurses face and approaches to confront said challenges (Bell et al., 2010). However, lacking in current research are the challenges nurses face when delivering EOL care to palliative pediatric oncology patients living in rural areas. According to DeVoe, Krois and Stenger (2009) people in rural communities have poorer health status and greater needs for primary health care, however experience greater difficulty accessing health care services than people in urban centres. Furthermore, compared with children living in urban areas, rural children are more likely to have unmet medical care needs and experience worse health outcomes. Given these disparities in rural settings and the growing complexities of the pediatric oncology population, a need to explore challenges nurse face in delivering EOL care to pediatric oncology patients who live in rural settings has been proposed in order to better conceptualize the specific needs of the pediatric population in rural settings.
End of Life Care: care provided to a patient when curative options have been interrupted by disease progression and death is now the expected outcome (Kars, Grypdonck, & Delden, 2011).
Rural Areas: districts located outside of an urban town or city; these areas often lack medical facilities, resources, and supplies (McCoy, 2009).
Conceptual Framework...
Conceptual Framework: an outline of the key factors influential to the research study and the relationships amongst them (Maxwell, 2005).
This study will utilize a conceptual framework. Given this research proposals qualitative approach, a conceptual framework is deemed suitable as it is in alignment with research goals and will help refine objectives, establish achievable and applicable research questions, and guide methodology (Maxwell, 2005).
The first conceptual framework is end of life or palliative care. According to the Canadian Nurses Association (2015) EOL or palliative care can occur at any point of the lifespan, is highly individualized, and requires a holistic approach, one which considers physical, mental, spiritual and emotional aspects of the patient.
The second conceptual framework is rural area. Due to characteristics of rural areas, it is assumed to lack socio-economic resources, have limited access to services and reduced availability of primary health care and specialist health care (McCoy, 2009; Reed, Fitzgerald, & Bish, 2018).
Problem...
Up to date, nursing literature on pediatric oncology end of life care has focused on factors that influence the patient’s perspectives when receiving end of life care, as well as challenges nurse face when delivering EOL care in acute care settings.
However, given the identified barriers to accessible health care resources in rural areas, and the growing pediatric oncology population, a need to explore the particular challenges nurse face in delivering EOL care to pediatric oncology patients in rural areas in order to better meet the needs of this patient population is deemed warranted. A preliminary search of the nursing databases noted a lack of literature which focused on such problem, thus validating the need for this research proposal.
Purpose / Questions...
The purpose of this qualitative phenomenological study is to identify the challenges nurses face in delivering EOL care to pediatric oncology patients who live in rural settings. The principal research question is: “What challenges do nurses face when delivering EOL care to pediatric oncology patients living in rural settings?”. The objective is to recognize themes amongst challenges identified by nurses working in EOL pediatric oncology in rural areas and distinguish the specific differences in EOL care in rural areas in comparison to urban areas. Moreover, to identify the specific barriers relative to rural nursing practice in a manner that will improve patients’ experiences and better meet the particular needs of patients in rural areas.
Methodology...
Qualitative Research: a method of observation to collect data referring to concepts, attributes, and hidden meanings; this approach fosters systematic inquiry into lived social phenomenon and allows researchers an inside view into a population’s reality (Hasse & Mayers, 1988).
Phenomenology: exploration to the meaning of experience; this form of research collects natural data and assists the researchers in adjusting to new issues as they present (Donalek, 2004)
This study will utilize a qualitative methodology, with a phenomenological approach. A qualitative phenomenological methodology was deemed suitable for this study given its purpose as it focuses on the lived experiences of nurses providing EOL care and will require personal expressions from the participants in order to identify challenges they face when delivering care.
Setting...
The setting of this research study is rural areas across Ontario, Canada. Data will be collected from rural areas across Ontario which meet specific inclusion criteria and employ full time registered nurses (RNs). Although data is collected from RNs across Ontario, the main headquarters (HQ) building is located in the city of Sudbury, Ontario. The HQ building is a securely monitored and locked unit which consists of offices for the researchers to work, a boardroom for meetings, a password protected storage room to store all collected data, and an interview room which will be used for online video conferences.
Sampling...
For this study, purposive sampling will be utilized. Purposive sampling was chosen to ensure the sample consisted of RNs who met the specific inclusion criteria, the inclusion criteria is: all RN’s must be registered and up to date with documentation with the College of Nurses of Ontario (CNO), all RNs must speak English or French, all RN’s must be currently practicing a minimum of 30 hours per week caring for pediatric oncology patients receiving EOL care in rural areas- these areas will most likely consist of the patient’s home however, this setting is also open to include hospitals and long term care (LTC) facilities. Exclusion criteria includes RNs planning to retire before the year of 2022. The sample size for this study will vary between 10 to 15 RNs who meet the inclusion criteria.
In regard to the selection procedure, recruitment will occur throughout all of Ontario. All RNs practicing rurally, providing EOL care to pediatric oncology patients will be notified by the CNO of the opportunity to partake in the study. Once notified, the RNs have 30 days to decide if they are interested. If interested the RNs must contact the e-mail address included in the information given to them to set up a video conference to speak with the researchers and see if all inclusion criteria are met. Lastly, the researchers have the final decision on the participant selection and will contact the selected participants by a selected date.
Purposive Sampling: a selective process where participants are selected based on specific characteristics and qualifications they hold (Lobiondo-Wood and Haber, 2013).
Consent & Confidentiality...
All RNs selected to partake in the study must sign the informed consent paperwork, this action is required by anyone conducting research involving participants (Canadian institutes of health research, natural sciences and engineering research council of Canada, and social Sciences and humanities research council of Canada, 2014). The consent process is voluntary and continuous throughout the entire course of the research; if at any point the RN changes their mind and would like to withdraw from the study, they have the right to freely decline further participation (Canadian institutes of health research, et al., 2014). RNs participating in this study will be given adequate time to understand and analyze the information provided to them throughout the study to ensure consent is informed and current. In regard to confidentiality, RNs participating will receive a code of numbers and letters to be referred to as and to protect confidentiality at all times, this code will be used for data storage as well.
Data Collection...
Since our goal is phenomenological research, open-ended interviews via video conference will be used to gather data from our research participants. The interviews will be conducted via video conference as it is the most convenient method for the research participants in regard to travel considerations and their work in rural settings. The participants will be interviewed in the comfort of their home over video conference to facilitate a comfortable setting without the stress of travelling to the researchers. The researchers will be located in the HQ building in Sudbury, Ontario.
The data collection will consist of two separate interviews as multiple interviews per participant allows for a greater understanding of the lived experience to develop (Lobiondo-Wood & Haber, 2013). Each interview will last 30 minutes to one hour in length, they will be recorded, stored on a computer and notes will also be taken by the researchers during. Following the interview, the second interview will be scheduled, and researchers will not analyze data until the very end of the interviews to insure accuracy.
Phenomenological Research: a method used to identify personal meanings behind lived experiences (Lobiondo-Wood & Haber, 2013).
Data Analysis...
Thematic Analysis (TA): a data analysis method used to identify common themes and summarize a set of data as a whole or in connection to a specific research question (Aguinaldo, 2012).
Thematic analysis (TA) will be used to establish common themes and meanings behind the lived experiences of the research participants in this study. TA starts with familiarizing oneself and examining all of the content gathered so that there are not any important facts missed (Aguinaldo, 2012). Next, researchers eliminate insignificant data from the pile to allow common themes to merge and to create initial codes (Aguinaldo, 2012). According to Lobiondo-Wood (2013) coding is continuous naming, categorizing, repairing, describing, and re-describing of the gathered data. Analytical coding will be used in order to facilitate common themes (Lobiondo-Wood & Haber, 2013). This is done because of the large amount of data that is accumulated from qualitative studies; and allows for an organized summary to represent the collected data (Aguinaldo, 2012). After this, themes will be identified, titled, and described based on the major significance associated with those lived experiences (Aguinaldo, 2012). Following the formulation of common themes, researchers will re-examine the themes to make sure they are accurate and applicable for the specific research study at hand (Aguinaldo, 2012). The final step includes displaying exact quotes stated from the research participants in order to associate the feelings and emotions with the titled themes (Aguinaldo, 2012).
Rigour...
To insure quality and reliability of the study, the conducted open-ended interviews will be recorded over zoom, the video call application. Recording the interviews will allow the researchers to transcribe data and facilitate the common themes afterwards (Lobiondo-Wood & Haber, 2013). In order to establish rigour throughout the study credibility, audibility, and fittingness will be incorporated (Lobiondo-Wood & Haber, 2013).
Credibility will be maintained by completing member checks following the creation of themes (Lobiondo-Wood & Haber, 2013). Member checks will be done by showing the participants the themes and asking them if the researchers accurately discovered their lived experiences (Lobiondo-Wood & Haber, 2013). Audibility includes an audit trail consisting of analyzing all records associated with the study, like research agreements and conduct, notes and consistency, as well as used research tools. An audit trail will allow for the researchers to discover the fittingness of all collected data and data tools to the research study (Lobiondo-Wood & Haber, 2013).
Limitations...
The first limitation identified in this study is the small sample size. Although small sample sizes are recommended for qualitative methods, it may be a limitation to the study, as small samples increase the likelihood of a type II error which can skew the results, and in turn decreases the strength of the research findings (Lobiondo-Wood & Haber, 2013).
A second limitation to the study is the use of video conference interviews for data collection methods, as opposed to face-to-face interviews. According to Lo Iacono, Symonds and Brown (2016) it is difficult to develop a sense of trust with research participants when using video interviewing due to the inability to provide a comfortable and welcoming setting over a video conference.
Lastly, the sample of RN’s who participated in this study were limited to those living in Ontario, which ultimately limits application of findings to anywhere outside of the province. Although this limitation was a product of maintaining a small sample size that fit with the qualitative research approach and facilitated saturation and accuracy of the data, in order to further apply research findings, a more widespread inquiry will be needed in the future (Lobiondo-Wood & Haber, 2013).
Ethical Considerations...
Ethical considerations for this research study include informed consent, protecting confidentiality and providing the right to withdraw (Canadian institutes of health research, et al., 2014). Participants will be provided with an information sheet and consent form outlining details about the study. They will be required to fill these sheets out and mail it back to our location. Participants will have the option of video calling the researchers if they have any further questions prior to agreeing to participate. Participants will be repeatedly told before, during, and after the study that they may withdraw at any moment in time. This means that the person and their information will be discarded confidentially from the study. Also, all data and recorded interviews will be stored on a password-protected computer that only the researchers have access to. Participants names will be excluded from the database, and patients will be identified by randomized codes consisting of letters and numbers.
