This research proposal comprises two parts. Part 1 introduces the topic of diabetes management in older people with type II diabetes, posing the problem statement to be investigated. The aims and objectives are presented, along with the significance of the proposed research and some of the background literature pertaining to the problem statement. This is followed by Part 2, which identifies the theoretical and philosophical underpinnings of research method chosen to explore the problem statement. Justification for the chosen methodological approach will be provided, followed by an outline of methods of sampling, data collection and analysis, and ethical considerations. Throughout the proposal rigour will be demonstrated with supporting evidence from the literature.
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There are more than 220 million individuals in the world living with diabetes (World Health Organisation, WHO, 2011). Type II diabetes, which results from the body’s ineffective use of insulin, comprises 90% of individuals with diabetes worldwide (WHO, 2011). It is primarily caused by preventable lifestyle factors such as excess body weight and lack of physical activity (Steyn et al., 2004). The world is facing an epidemic of unhealthy lifestyles and obesity, and subsequently type II diabetes is on the increase (Farag & Gaballa, 2010). Diabetes is especially prevalent among the older population and such prevalence is growing along with an ageing population (Mooradian, McLaughlin, Boyer, & Winter, 1999). This is of great concern given the serious complications associated with the condition, which include increased risk of heart disease and stroke, loss of vision, kidney failure, and neuropathy (nerve damage) (Madani, 2008). In addition, mortality risk is doubled among individuals with diabetes compared to individuals without the condition. The World Health Organisation has predicted that mortality rates from diabetes will double between 2005 and 2030 (WHO, 2011).
These figures highlight the need for urgent action in terms of preventing the overall burden of the disease. One way that this can be achieved is by helping individuals with diabetes to take control of their condition through self-management and improved adherence to treatments. Treatment generally involves lowering blood glucose through changes in lifestyle (i.e. diet, physical activity, smoking cessation, etc.), oral medication, insulin injections, blood pressure control, and foot care. The evidence suggests that adherence to such treatments is not always forthcoming (Moreau et al., 2009). Older people have been found to have greater problems with health care adherence due to cognitive problems such as failing memory (Feil et al., 2009). Therefore, it is argued that there is even more reason to explore the reasons for lack of adherence among this vulnerable population so that interventions can improve adherence and health outcomes.
A key component of how individuals adjust to diabetes, thus minimising any associated complications, is their perceptions of the risks and benefits of their treatment. These perceptions are implicated in decisions regarding treatment, adherence to treatment, adjustment to treatment, and efficacy and outcome of treatment (Nair, Levine, Lohfeld, & Gernstein, 2007). Qualitative researchers are making efforts to examine the perceived risks and benefits of diabetes treatment (Nair et al., 2007), but there remains a paucity of phenomenological insight into how older people with type II diabetes perceive the risks and benefits of their treatment (Hope, 1999). There is also a lack of qualitative research into the impact these perceived risks and benefits have on the lived experiences of older people with diabetes and their treatment management.
Problem Statement and Research Question
Older people living with type II diabetes are vulnerable to serious complications that can be further influenced by their expectations, knowledge and understanding of the risks and benefits of treatment. This study will explore the question: What are diabetic elder patients’ perceptions of the risks and benefits of their treatment?
Aims and Objectives
The aim of this study is to gain phenomenological insight into diabetic elder patients’ perceptions of the risks and benefits of their treatment. This will be achieved by conducting semi-structured interviews with a heterogeneous, purposive sample of older people with type II diabetes, which will be analysed via interpretive phenomenological analysis.
The significance of this study is that it will provide new insight into the unique experiences of older people with type II diabetes and the personal meanings they attach to the risks and benefits of treatment. By illuminating how older people attempt to balance the risks and benefits of treatment according to their experiences and expectations, this study will facilitate a better understanding of how these individuals can be helped to adhere to treatment and thus experience longer, healthier lives. This study will add to the qualitative research evidence for the effective treatment of diabetes through an analysis of qualitative factors such as psychological profiles, perceptions, attitudes, and behaviours in relation to the disease and its treatment.
Background and Literature Review
The literature indicates that individuals with diabetes want to know both the benefits and risks of treatment in order to help them make treatment-related decisions (Astrom et al., 2000; Berry, Knapp, & Raynor, 2002; Ziegler, Mosier, Buenaver, & Okuyemi, 2001). Nair, Levine, Lohfeld, and Gerstein (2007) sought to build on this knowledge by examining the experience of benefits and risks assessment in people with type II diabetes when making treatment decisions. Using a grounded theory approach, they conducted semi-structured interviews (n=18) with participants following various treatment regimens (i.e. nutritional treatment, oral medications, and insulin). It was concluded that individuals with diabetes engage in a cycle of complex decision-making, balancing potential and actual risks of treatment with their benefits to gain a sense of control and mastery in their lives. However, they also found that participants did not tend to consciously assess treatment benefits and risks, indicating that in the proposed study prompts might be needed to make this a conscious process during the interviews.
The study by Nair et al. (2007) did have a number of theoretical limitations, one being that the sample was fairly homogenous in terms of treatment regimen, thus limiting the interpretation and generalisation of findings. Furthermore, the grounded theory approach is questionable in terms of seeking to gain insight into the meanings individuals attach to their lived experiences. Since grounded theory starts with a hypothesis, this is likely to raise implications for data authenticity. It could be argued that an inductive approach would be more appropriate when exploring subjective experiences. This is supported by research conducted by Bogatean and Hancu (2004), which took such an approach and subsequently produced richer data than that which was produced by Nair et al. (2007).
Bogatean and Hancu (2004) used a phenomenological approach to explore the lived experiences of people with type II diabetes (n=18) starting insulin therapy in order to establish factors involved in psychological insulin resistance. By using an inductive approach, they were able to illuminate new insight into the subjective experiences of individuals with diabetes by identifying salient themes within semi-structured interviews. This study highlighted the potential benefits of further phenomenological research into the perceived risks and benefits of treatment for type II diabetes.
In terms of qualitative research comprising older people with diabetes, there is a paucity of high quality studies in this area. Tjia, Givens, Karlawish, Okoli-Umeweni, and Barg (2007) explored the concerns of older people (age 65-years and older) with diabetes about the complexity of their medication regimens (n=22). It was found that despite perceived risks of medication, participants were reluctant to discuss these concerns with their health care team, which affected treatment decision-making.
Another qualitative study, using a grounded theory approach, explored self-reported goals of older people (age 65-years and older) with type II diabetes (n=28) (Huang, Gorawara, & Chin, 2005). It was found that goals were highly influenced by perceived risks, supporting the rationale for examining this issue further in the proposed research. Indeed, this was supported in a quantitative studies examining age related comorbidity and its affect on patterns and goals of diabetes treatment (Glynn, Monane, Gurwitz, Choodnovskiy, & Avorn, 1999) and the impact that such risks can have on feelings of independence and control (Howorka, Pumpria, Wagner-Nosiska, Schlusche, & Schabmann, 2000).
The proposed study will expand on the findings presented by Nair et al. (2007) that individuals with diabetes balance potential and actual risks of treatment with their benefits, by utilising the methodological strengths inherent within the phenomenological study conducted by Bogatean and Hancu (2004). Rather than take a theory-driven approach, as Nair et al. (2007) did, an inductive, interpretive approach will be taken in order to gain insight into the lived experiences and shared meanings that shape diabetic elder patients’ perceptions of the risks and benefits of their treatment.
Part 2: Methodology
The proposed study will be underpinned by an interpretive perspective, using the phenomenological approach to explore the lived experiences of older people with diabetes. A naturalistic approach to the science of this human phenomenon will be utilised (Husserl, 1962; Heidegger, 1962). By focusing on the essence and structure of the lived experiences of older people with type II diabetes, and showing how complex meanings are built from these direct experiences, attempts will be made to understand treatment related perceptions and behaviours within this population (Patton, 1990). Knowledge and understanding will be gained through the social constructions of language, consciousness, and shared meanings implicit within participant narratives (Klein & Myers, 1999, 2001). Thus, focus will be on the unique processes involved in conceptualising the risks and benefits of diabetes treatment and in participants very ‘being’ within the world – focus will be on the ‘how’ of the experience as opposed to what the experience is, supporting Heidegger’s (1962) philosophy. No hypotheses will be developed prior to data collection as the aim will be to seek subjective insight into the experiences of older people with diabetes. Thus, understanding and insight will be inductive and data-driven, guided by participants’ individual and shared experiences (Woods & Catanzaro, 1988; Morse, 1989).
The problem statement posed for this study aims to explore personal perceptions as opposed to attempting to produce objective accounts, providing the rationale for the interpretive phenomenological approach. In order to gain a holistic picture of the phenomena under investigation, individual characteristics and mannerisms of participants will form an important aspect of gaining insight into their production of meaning. Reflexivity will underpin the methodology and any personal beliefs and presumptions about the phenomena under investigation will be acknowledged and placed to one side during data collection and analysis.
Semi-structured interviews will be utilised in support of the underlying philosophy of phenomenological inquiry, offering a flexible method of gaining rich data on individual and shared experiences. The flexibility of semi-structured as opposed to structured interviews will facilitate the generation of new and unexpected ideas during the study so that lived experiences can be explored with less bias than when the interview agenda is guided purely by the researcher. Such interviews allow ‘inquiry from the inside,’ so that interviewer and interviewee jointly guide the direction in which the interview goes (Everet & Louis, 1981). In this sense, phenomenological research is not only data-driven but also participant-driven.
In order to maintain the subjective, phenomenological approach of the research, interpretative phenomenological analysis (IPA) will be utilised to interpret the meanings that participants attach to their perceived risks and benefits of diabetes treatment. IPA will be used to explore in detail the processes through which people make sense of their own experiences (Chapman and Smith, 2002; Smith et al., 1997). IPA is believed to have particular relevance to exploring personal experiences of living with chronic illness (Smith et al., 1999). It is an approach that has been recommended for use in research concerned with “complexity, process or novelty,” (Smith and Osborn, 2003, p. 53), the rationale for its use within the proposed research being that people’s cognitions, perceptions and attitudes regarding the risks and benefits of treatment are complex processes (Nair et al., 2007). The appropriateness of IPA to this study is further supported by a systematic review describing studies that have adopted this technique (Brocki and Wearden, 2006). A number of the identified studies explore similar concepts to those included in the proposed study, such as subjective health (Chapman, 2002) and the psychosocial impact of illness (Duncan et al., 2001; Green et al., 2004).
Interpretation of data will be idiographic in nature, with the aim being to go beyond the surface issues shared by participants to develop a deeper, more intricate understanding of their experiences and the meanings they attach to them. This will be achieved by exploring participants’ interpretations of their own thoughts, feelings, and experiences (Heidegger, 1962). Thus, interpretation will not be a methodological procedure as such, but will be an inevitable and natural process within the lived experience. Taking a hermeneutic philosophy, prior knowledge on the phenomenon, in this case on the perceived risks and benefits of diabetes treatment will not be ‘bracketed,’ but will be acknowledged, with reflexivity being exerted throughout the study (Giorgi, 1994; Halling, Leifer, & Rowe, 2006).
In adopting a phenomenological approach, the proposed study will follow a process starting from the development of the problem statement or research question to the collection of rich, subjective, participant-driven data. This data will then be understood through the generation of themes, as guided by IPA, which can then be related back to addressing the problem statement. The final understanding provided into the perceived risks and benefits of treatment experienced by older people with type II diabetes will thus be one that is the subjective interpretation of participants and their social reality. Through the use of quotes to illustrate interpretations of the lived experiences of older people with type II diabetes, the authenticity of individual mental representations and meanings can be maintained, as can the essence of pure experiences (Husserl, 1962; Merleau-Ponty, 1962). This authenticity will be enhanced further through methodological triangulation and the confirming of interpretations with participants. In other words, the essence of phenomenology, which is “to return to things themselves” will underpin the proposed study (Merleau-Ponty, 1962, p.viii). Such methods of triangulation are purported to add rigour to qualitative research (Jordan, Buchbinder, and Osborne, 2010).
Sampling and Recruitment Strategy
Participants will be recruited through advertisements sent out in mailing lists of diabetes organisations. Diabetes Australia, a national federated body comprising state and territory organisations supporting people with diabetes, will be approached for assistance with this.
In accordance with the data analysis method of IPA, participants will be purposively selected in order to clarify the problem statement and to develop a full interpretation of the data that addresses the problem statement (Touroni and Coyle, 2002). Thus, a small sample size of no more than ten participants will provide sufficient perspective (Smith and Osborn, 2003) as a ‘maximum variety sampling’ technique (MacLeod, Craufurd and Booth, 2002) will be used. This will ensure that despite a small sample size, the group will be heterogeneous and thus rich data can still be generated. In the proposed study, participants will be selected with the aim of acquiring insight into the lived experiences of individuals following different treatment regimens and thus experiencing varying levels of treatment invasiveness. This approach will be taken to gather comparative information on perceived risks and benefits in relation to different treatments. It is anticipated that this will result in the generation of diverse data from the target population, as well as provide opportunity for including examples of all potential outcomes (i.e. perceived risks and benefits, positive and negative experiences) (Trochim and Donnelly, 2007).
Pre-defined inclusion and exclusion criteria will facilitate sampling and recruitment. The inclusion criteria are as follows:
Adults formerly diagnosed with type II diabetes no less than 1-year previously
Aged 65-years or older
Following a diabetes treatment regimen such as nutritional or lifestyle advice, oral medication, or insulin
Despite comorbidities, diabetes is the primary chronic condition
The exclusion criteria are as follows:
Cognitive deficit rendering individuals unable to provide informed consent
Semi-structured interviews, which are the ‘gold standard’ data collection tool in IPA (Smith and Osborn, 2003), will be used to collect data in a systematic way. Semi-structured interviews are more flexible than standardised methods of research such as structured interviews or surveys (Economic and Social Data Service, 2009). Although some established general topics will form the basis of the interview schedule (i.e. problems with treatment), the use of semi-structured interviews will allow for the exploration of emergent themes and ideas rather than relying solely on concepts and questions defined in advance of the interview. Whilst a general format and order of questions will be devised in order to allow comparisons between participants, there will be scope for pursuing and probing for novel information through additional questions and prompts.
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The researcher will immerse themselves in the interview, increasing their engagement in the process and thus making the interview process more comfortable for the interviewee as the dynamic will be conversational rather than formal (Legard, Keegan, and Ward, 2003). The value of this is that participants are less likely to place limitations on the information they feel comfortable enough to share when in a more relaxed and less artificial environment
An interview schedule will be developed and prompts used to maintain the ‘flow’ of the interview. Interviews will last no longer than 45-minutes and will be conducted with participants in a mutually agreed upon location. Interviews will be tape recorded for later analysis and to ensure accuracy of quotes used.
Questions to be included in the interview schedule will be informed by the literature. In particular, the study conducted by Nair et al. (2007) highlights that individuals do not tend to consciously assess treatment benefits and risks, indicating that in the proposed study prompts might be needed to make this a conscious process during the interviews. In order to reduce bias, the questions will not directly ask about risks and benefits but will broadly explore these issues through an examination of lived experiences of diabetes treatment. Potential interview questions and prompts are presented in Figure 1.
Figure 1: Interview Schedule
What treatment are you currently taking to control your diabetes?
Prompts: For example, diet, exercise, oral medication.
Is there any information would you like to know about this treatment?
What are you hoping this treatment will do for you?
Are there any barriers that you see with this treatment?
Prompts: For example, costs, side-effects, interference with daily life.
Do you have any concerns about your treatment?
How does managing your diabetes fit into your life?
Data collection will be data-driven, with additional questions outside of the interview schedule being generated from participant responses to previous questions. In particular, participants will be asked to expand upon certain experiences in order to provide richer data for subsequent analysis.
Data Management and Analysis
Each interview will be transcribed verbatim before being analysed via IPA (Smith and Osborn, 2003; Willig, 2001). IPA is a data-driven approach, involving a systematic analysis of interview data, whereby a number of steps are followed (Figure 2). Thus, a cyclical process will adopted, whereby new themes from each transcript will be checked against previous transcripts (Biggerstaff and Thompson, 2008). Transcripts will be read with the aim of providing deeper insight into the perceived risks and benefits of treatment experienced by older people with type II diabetes.
Figure 2: IPA Process
On identifying the super-ordinate (i.e. prominent) and subordinate (i.e. less prominent) themes emerging from each interview transcript, narrative accounts will be used to form individual case studies. This will be followed by a shared experience narrative, where super-ordinate and subordinate themes between interviewees will be merged and examined together. The identification of recurrent themes across transcripts will facilitate some generalisations to be made.
One transcript will be independently themed by another researcher for cross-validation purposes. Furthermore, narratives will be presented to participants to validate the interpretation of their interview data. This method of verifying researcher interpretation has been supported for research aimed at providing insight into the subjective experiences of participants (Patton, 1999).
Data will be analysed until saturation is reached and no new themes emerge.
Participant information sheets outlining the research and details pertaining to participant involvement will be provided to individuals interested in taking part in the study so that they can make an informed decision regarding their participation. Two consent forms will also be provided for participants to confirm that they read and understood the participant information sheets and would like to take part in the study. Interested individuals will be advised to take at least 24-hours to consider their participation and to raise any questions they might have. One signed consent form will be retained by the participant and the other returned to the researcher.
The participant information sheets will outline issues around confidentiality, explaining that all data will remain anonymous and that pseudonyms will be used in any documents that present the data. Participants will also be informed of their right to withdraw from the study at any point, without this in anyway affecting their treatment or the support they receive from Diabetes Australia. Furthermore, the older age of participants will be considered in terms of the length of interviews, with a short break being offered half way through.
Information on local support groups will be provided at the end of interviews in case any of the questions provoke any distress. Since perceived risks of treatment will be discussed during the interview, it is possible that participants will require information or support to address these perceived risks, which can be sought via the list of support groups provided.
These ethical considerations will be highlighted within an application for ethical approval from the University.
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