Answered step-by-step1. Identify the theoretical framework u
Answered step-by-step1. Identify the theoretical framework used in the article below…1. Identify the theoretical framework used in the article below (post the name of the theory and explain the theory) 2. Go the reference section of the article and Identify/select at least one primary source and one secondary source (articles) that supports the theoretical framework (list only the reference of these articles Using in-text referencing and a reference list SCHOLARLY PAPERExploring life history methodology in chronic illness:a study in Relapsing Remitting Multiple SclerosisAUTHORSTherese BurkeRN, MSCNPhD Candidate, School of Nursing, The University ofNotre Dame, 160 Oxford Street, Darlinghurst, N..email@example.comJoanna PatchingRN, BA(Psych), MLitt (Psych) PhDAssociate Professor, School of Nursing, The Universityof Notre Dame, 160 Oxford Street, Darlinghurst, N..firstname.lastname@example.orgBoth authors made a substantial contribution to the manuscript. Therese Burke designed the study, performed theinterviews, developed the thematic data analysis and composed the initial manuscript. Joanna Patching supervisedthe study data collection and assisted with thematic data analysis, manuscript design and review.Acknowledgement: Therese Burke was the recipient of support through an Australian Government ResearchTraining Program Scholarship as a PhD candidate at Notre Dame University, Australia for this research study.KEY WORDSRelapsing Remitting Multiple Sclerosis, chronic illness, lived experience, life history, ethnographyABSTRACTObjectiveThe aim of this study was to gain insights into the lived experience of a chronic disease, Relapsing RemittingMultiple Sclerosis (RRMS). Selecting the most effective methodology to reflect the life span proved challenging.However, the life history approach proved to be a data-rich methodology for this study and is explored in detail in thispaper as a qualitative nursing tool.SettingThis study recruited participants through a state based Multiple Sclerosis organisation in the community.SubjectsThirteen participants living with RRMS were purposively recruited, ten female and three male, to discuss their livedexperience. Participants were from diverse backgrounds and were at various stages of disease progression.Primary argumentEthnography and life history is an under-utilised methodology in nursing research. However, the life historyapproach was used effectively to collect data to explore the life trajectory of living with a chronic illness. Semistructuredinterviews and Braun and Clarke’s (2006) method of thematic data analysis ensured a systematic,robust exploration of the lived experience of RRMS. The study developed eight key themes and over 70 subthemes,providing clarity into the experience of living with RRMS.ConclusionEmploying the life history approach to living with RRMS reflected the ebbs and flows of life, themes intertwining andchanging positions of importance according to life events, whether directly or indirectly related to RRMS. Life historyproved to be an effective method to gain a greater understanding of chronic illness and although often overlookedin nursing research, may represent an excellent methodology choice for nurse researchers working in other areas ofchronic illness.AUSTRALIAN JOURNAL OF ADVANCED NURSING Volume 36 Issue 4 46SCHOLARLY PAPERINTRODUCTIONMultiple Sclerosis (MS) is a progressive inflammatory disease of the central nervous system (CNS) with themost common form of MS at diagnosis being RRMS, affecting 85% of people living globally with the disease(Compston and Coles 2008). Recent data from Multiple Sclerosis Research Australia (MSRA) suggests thatthere may be 25,600 people living in Australia with MS (MSRA 2018). RRMS is characterised by unpredictablerelapses (exacerbations or attacks), which usually last several weeks before the individual returns to baselinefunctioning (Lublin et al 2014). There is currently no curative treatment for RRMS, although recently therehave been major advances in more efficacious treatments called disease modifying therapies (DMTs) tocontrol relapses and possibly prevent future disability (Stuve and Racke 2016). Aside from a highly variabledisease state and multitude of possible neurological symptoms, MS can also cause numerous secondaryand tertiary effects. Issues may develop in highly personal areas of intimacy and sexuality, mental health,relationships and employment.Although there exists an abundance of literature examining many different aspects of MS and MS symptoms,there is a paucity of literature exploring the whole life experience of living with MS, and more specifically,RRMS. The aim of this study was to gain insights and understanding into the lived experience of RRMS, sothat nurses may have a deeper understanding of the patient experience and be able to plan and adjust theirnursing care accordingly. To address these specific aims, the study sought to answer the research “What is the experience of living with Relapsing Remitting Multiple Sclerosis?”Exploring the literature for a suitable method for data collection and later data analysis that would span asmuch of the life trajectory as possible proved challenging. Using a qualitative approach to understand theexperience of living with RRMS would ensure the participant remained at the centre of the research process,and their lived experience the focus of the research. However, beyond that, there were very few studies(especially in recent times), which replicated methods in data collection and analysis in the speciality of MS.The aim of this paper is to explore life history as an interesting and effective methodology for qualitative nursingresearch in chronic illness. Full study results from the research have been published elsewhere (Burke 2019).The study most alike the current study in terms of participant numbers and focus (Miller 1997) was publishedprior to any disease modifying therapies being available and reflected a completely different prognosis than inmodern times. Miller’s (1997) study asked 10 participants living with RRMS “What is it like for you living withRRMS?”. Hermeneutic phenomenology was used to analyse the transcripts and 12 themes were developedto describe the experiences of living with RRMS including the importance of social networks, coping withRRMS, control, uncertainty and conflict. Miller’s (1997) study however, only concentrated on the present timeof living with their illness, not the entire life trajectory, posing s as to whether previous life eventsinfluenced this chronic illness and vice versa.Other studies have used various methodologies in phenomenology to explore single cases of women livingwith RRMS (Fawcett and Lucas 2006; Finlay 2003), or most recently a study exploring the life world of sixyoung women living with RRMS (Beshears 2010). However, the focus of the research was centred on thepresent time, and no male participants were included in the studies. There was only one narrative foundin the literature review for the current study which explored living with MS using a life history approach (deChesnay et al 2008). This short narrative presented an abbreviated story to teach others about overcomingobstacles in chronic illness (de Chesnay et al 2008).AUSTRALIAN JOURNAL OF ADVANCED NURSING Volume 36 Issue 4 47SCHOLARLY PAPERDISCUSSIONChoosing a research methodology for the current studyThe researchin the current study required a methodology that would gain deep, rich insights andunderstanding of the experience of living with RRMS. In seeking to understand and interpret meaning withincontext, the study also sought to be inductive (develop findings directly from the study data) and to seek bothpatterns and differences in data. The individual voices were important to hear, as well as the group voice ofthe entire data set. Finding individual meaning and understanding in stories from patients is fundamental tothe caring and compassionate culture of nursing, and something nurses strive for in daily practice (Munhall2012). Additionally, nurses are often attracted to qualitative research as they value the richness of deepunderstanding and the perspective of the individual living with chronic illness. Finding a data collection methodwhich considered the people living with RRMS as the experts (Windle 2011) was also important to consideras a component of the ontology and epistemology beliefs underpinning the current study.Ethnography methodologyEthnography is a research methodology which involves the process of learning about people by learning fromthem (Roper and Shapira 2000) and has its historical roots embedded in social and cultural anthropology(Holloway and Todres 2003). The goals of ethnography are to describe, interpret and understand characteristicsof a particular social setting, taking into consideration the diversity and multiplicity of voices from key informants,the experts who have rich knowledge of the subject under research (Holloway and Todres 2003). Essentiallykey informants who represent the culture under study discuss their lives, so that others can better understandthe culture (de Chesnay 2014). Ethnography has a place in health research, particularly with its focus on theemic, or the patient perspective (Morse 2012), being holistic, contextual and reflexive (Boyle 1994).Ethnography takes on many forms and has been adapted for use in different settings, depending on the goalsof the research. Early ethnographers spent long amounts of time in the field, known as ‘fieldwork’, gettingto know the study participant/s and encouraging them to share their life stories, often forming personalrelationships in the process (de Chesnay 2014). Often in recent times, economic and time constraints areconsidered to inhibit such long encounters between researchers and study participant/s, especially in thefield of nursing. In keeping with the important aspects of traditional ethnography (insights, understandingand culture), focused ethnography developed, wherein researchers attempt to learn about certain conditionsby asking about the experiences of those living with the condition (de Chesnay 2014; Cruz and Higginbottom2013).Life history as a form of focused ethnographyThe life history is a “retrospective account by the individual of his or her life in whole or part, in written ororal form, that has been elicited or prompted by another person” (Watson and Watson-Franke 1985, pp.2).This involves a person choosing to tell about the life he or she has lived, told as completely and honestly aspossible (Atkinson 1998). The terms life history and life story are sometimes used interchangeably (Plummer2001), but there is a subtle difference. Life history is defined as the life account told by a person to theresearcher (de Chesnay 2014) whilst life story is the narrative analysis created of the person’s life from thelife history told to the study researcher (Atkinson 1998). Focused ethnography, in particular life history, hasrecently become more popular in health research generally, as it is an effective method to gain informationfrom a culture that may not necessarily have direct contact with one another (Morse 2012), as is often thecase with people living with a chronic illness.AUSTRALIAN JOURNAL OF ADVANCED NURSING Volume 36 Issue 4 48SCHOLARLY PAPERLife history in nursingLife history in general is an underused methodology in nursing, but is perfectly suited to the profession, asnurses have always valued the stories and insights patients are able to provide to improve understanding oftheir world (de Chesnay 2014). Hagemaster (1992) advocated the use of life history in nursing research, andalthough still developing, more nurse researchers have used life history over the last two decades to investigatesocial, psychological and illness inspired phenomenon. Nursing studies using focused ethnography have beenused to explore illness in homeless youth (Ensign and Bell 2004), investigate health in immigrant adolescents(Garcia and Saewyc 2007), explore recovery from eating disorders (Patching and Lawler 2009), report theexperiences of community mental health nurses (Spiers and Wood 2010) and to examine the experiences ofa rare chronic health condition, lymphangioleiomyomatosis (Haylen 2015; Haylen and Fisher 2014).Given its ability to provide a comprehensive holistic examination of the subjective life experience, the life historyapproach was chosen as the most appropriate design for the current study, for the purpose of identifyingimportant themes experienced by individual people living with RRMS, which may also be experienced by theirpeers in similar situations (Field and Morse 1985). A great advantage of life history is that it retains the wholeindividual story and locates it in a wider social, cultural and historical moment (Plummer 2001). Life historyexamines events and how they impact individuals and their life trajectory, revealing turning points, epiphaniesand transformations that may occur over the course of the life living with disease (Haylen and Fisher 2014).It also provides a way of understanding the meaning of illness and how this meaning might change over time.Using life history in researching chronic illness reflects the complexity of the human experience it is examining(de Chesnay 2014), presenting an ideal methodology to gain insights and understanding. Being less timeconsuming than traditional ethnography, focused ethnography in the form of life history, is more practicalfor most nurse researchers. However, there are challenges inherent in using this methodology, includingdeeply personal narratives which may affect the researcher/s emotionally, and the fact that the interviewsand follow-up can be time consuming and prolonged.Conceptualising life history in the current studyAs suggested by de Chesnay and Fisher (2014), the purpose of the life history is to collect a focused historyaround a disease to document the story of each participant, but being careful not to frame this within a broaderethnography of all people living with a disease. The life history approach in the current study reflected thecultural and social contexts of each participant, allowing them to approach their life history in any way theychose, not necessarily in chronological order or centred only on their RRMS diagnosis. Interestingly, manyparticipants talked of other events in their lives being just as pivotal or more so, than their RRMS illnessdiagnosis. Others revealed life events and happenings which later played a significant part in coping withtheir chronic illness.In life history, the researcher and the participant come together as collaborators, composing and constructinga story (Atkinson, 1998). This was consistent with the ontology and epistemology of the current study witha strong focus on the emic (patient) perspective. Fostering a good relationship between the researcher andstudy participant is important in life history research, as it involves establishing a close relationship betweenthe two (Plummer 2001). Developing a trusting environment and good rapport early in the process is essentialto a successful study outcome.AUSTRALIAN JOURNAL OF ADVANCED NURSING Volume 36 Issue 4 49SCHOLARLY PAPERLife history and study methodsStudy participants were purposively recruited through a local, state based MS organisation using a flyer tocontact the researcher if people living with RRMS were interested in participating in the study. Fourteenpeople expressed interest and requested further information, thirteen people were subsequently enrolledinto the study and interviewed, and one person declined further involvement without giving a reason. Studyrecruitment followed the natural preponderance of RRMS, with ten females and three males agreeing to beinterviewed. Participants were asked to choose a pseudonym for the study process to protect their identity andany potentially identifiable information (about significant others and health care professionals) was removedfrom the study transcripts. Approval for the research was obtained from the University of Notre Dame HumanResearch Ethics Committee (reference number 016002) with particular attention to participant confidentialityand managing potential distress to participants recalling past life events.Semi-structured interviews have the purpose of obtaining descriptions of the life world of the participant withrespect to interpreting the meaning of the described phenomena (Kvale and Brinkmann 2007), making itespecially suited to life history research. Semi-structured interviews have some pre-defined s built-into the interview, however the researcher is also permitted to probe further and ask additional s asthe participant responds, often leading to the collection of powerful data in the form of insights, experiencesand perceptions (Peters and Halcomb 2015). Semi-structured interviews were the chosen data collectionmethod for the life history approach, performed in person and individually, with just the researcher and studyparticipant present.Interviews were performed at a location of the participant’s choosing, and mostly occurred in the home of theparticipant and less commonly in a public location such as a park or café. At the commencement of the interview,participants were provided with a verbal overview of the study, outlining the study aims. Each participantwas then invited to tell their life history, in any order they wished, and covering anything they wished to, withparticular thought to the”What is the experience of living with RRMS?”. This consistent approachensured the information gathered was rich and participant centred. Although predominately unstructured innature, the interviews were categorized as semi-structured for two reasons. Firstly, reflection s wereprovided to study participants a week prior to the interview to give some direction to the information that wassought. Secondly, the RRMS component of the researchgave particular direction about the topic tobe explored as part of the interview.Reflexivity in the study as a component of ethnographyReflexivity fits into the wider perspective of ontology and epistemology (Berger 2015) examining the role ofthe researcher in the generation and construction of knowledge and assisting the researcher to act withoutbias (Holloway and Galvin 2016). Unlike quantitative research where an objective stance is necessary, inqualitative research the active role of the researcher is valued and appreciated as an important researchtool (Braun and Clarke 2013). However, it is important that the researcher makes visible personal reflexivityas a form of quality control within the research (Braun and Clarke 2013), where the aim is for “empathicneutrality” (Ormston et al 2014).The majority of study participants had been cared for by an MS Nurse as part of their life journey with RRMS,with the MS Nurse valued by participants for their skills, knowledge and support. Belonging to the ‘MS Nurseclub’ most likely held some definite benefits for the principal researcher in terms of rapport and trust, gaininginstant entry into their life-world. Participants felt comfortable to discuss any issue they wished disclosinginsights into sensitive issues, such as parenting, sexuality, relationships, hopelessness, mental health,compromised care and fear. This enabled new understanding into living with RRMS and exposure of conceptsAUSTRALIAN JOURNAL OF ADVANCED NURSING Volume 36 Issue 4 50SCHOLARLY PAPERthat have been reported infrequently, or have not been reported at all in the specialty. Additionally, havingan understanding of the symptoms of MS (particularly participant fatigue) helped to manage the interviewsby organising breaks and rest when necessary.At times, the life history interviews contained highly emotive content and there was difficulty for the principalresearcher to disengage from the data, with vulnerable feelings surfacing as interview transcripts werere-listened to and re-read many times as the thematic analysis progressed. Several of the interviews wereemotionally intense, some participants had suffered neglected childhoods or had been subjected to tragedy,and others suffered mistreatment by health professionals. Constantly re-living these discussions to developcodes and themes often invoked sad and heart-rending emotions for the researchers. However, an earlierarticle by Tanner (2009) exploring experiences listening to sad situations during qualitative doctoral workproved very helpful in facilitating an effective mental health plan for the study researchers during this process.Life history and the study findingsAs a chronic illness, the life journey of RRMS takes many twists and turns; it is never a linear journey, butrather one of continual flux, which is mainly due to the innate unpredictability and uncertainty that comeswith the diagnosis of RRMS. This is also the case for many other forms of chronic illness. The great advantageof using the life history approach is that it reflects the entire life journey; with and without disease. Usingthis process uncovered many aspects of each participant’s life, which may have had an impact on their laterjourney with RRMS. In particular, many participants described events in childhood, which gave rise to theirlater development of resilience, such as childhood neglect, other illness and migration from non-Englishspeaking countries. This resilience was then helpful to the study participants in later life, drawing on copingskills to help them through the difficult and challenging times of RRMS. The process of telling the life historyto the researcher also helped participants to understand themselves in a different way, with many participantsopenly recognising their achievements in overcoming difficulty and challenge.Study themes were developed from the data, with eight key themes telling the story of living with RRMSas a chronic illness over the life span. Commencing with “Piecing Together the Puzzle” of symptoms at thebeginning of the RRMS journey in the years prior to and during diagnosis, followed by “(Re)defining ME nowthat I have RRMS” and coping with the diagnosis, “Battling the Demons” that followed diagnosis, relapsesand symptoms, for some the experiences of “Surplus Suffering” from others, and negotiating “High (In)visibility” of the symptoms. Eventually study participants were able to gain control by “Taming the Beast”,learning “The DMT Dance” managing their medications and side effects, and ultimately “Holding Hands withHope”, expressing hope and practising purposeful positivity. Although presented theme by theme in a logicalsuccession, the study findings did not always follow in sequence and definitely did not always “end up” withhope and positivity. Instead, the eight key themes intermingled with each other to reflect the ebb and flow oflife. They tell the story of possible stops along the life journey of RRMS and the constant moving backwardsand forwards when negotiating and managing living with a chronic illness. Nurses involved in all areas ofnursing care from community, surgical care, other medical specialities, emergency, midwifery and mentalhealth may encounter patients living with MS and benefit from insights into understanding the journey ofpatients to plan care which is patient centred, individualised and holistic. Specific clinical recommendationshave been published elsewhere to comprehensively address specific areas of care (Burke 2019). The nursecan also experience greater job satisfaction and fulfilment with a deeper understanding and insight into illness.As noted life history author Plummer (2001, pp.7) reflects, “life is in fluctual praxis, always in flow and evermessy.” Using ethnographic methodology, and the life history method in particular, to uncover the study themesworked skilfully with the “messy” life trajectory of RRMS, a chronic but unpredictable disease. Additionally,AUSTRALIAN JOURNAL OF ADVANCED NURSING Volume 36 Issue 4 51SCHOLARLY PAPERthe inclusion of subthemes in the data analysis gave the added ability to “drill down” even further into eachtheme, identifying more specific features of a theme under the same central organising concept, but with subtledifferences. This helped to give the study findings more structure and subsequently guided the developmentof recommendations for clinical practice (Burke 2019).CONCLUSIONUsing life history methodology to explore the lived experience of a chronic illness gave this study much moreemotion and insight than would have been achieved by simply asking pre-determined interview s in astructured format, or by presenting participants with a survey or naire of topics that the researchersfelt were important. Instead, life histories flowed naturally for the study participants, forming stories andpresenting an abundance and wide range of themes.Life history gives voice to the ordinary members of a culture as they cope on a daily basis with the joys andchallenges of life (de Chesnay and Fisher 2014), and was embraced by thirteen participants living with RRMSin the current study. The use of this focused ethnographic methodology worked cleverly with the ebbs andflows of living with a chronic illness, to reveal many themes and subthemes exploring the lived experience ofRRMS. As RRMS is most commonly diagnosed in young adults, it represents a long period of time to live witha chronic illness. Using the life history approach generated rich and detailed data about the experiences ofliving with RRMS and unearthed some extraordinary insights, which subsequently led to the developmentof clinical recommendations for nursing practice. This under-used ethnographic methodology could be veryuseful to consider in other nursing studies researching chronic illness in the future.REFERENCESAtkinson, R. 1998. The life story interview. Thousand Oaks, CA: Sage Publications.Berger, R. 2015. Now I see it, now I don’t: Researcher’s position and reflexivity in qualitative research. Qualitative Research, 15(2):219-234.Beshears, B.K. 2010. 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