Dementia Related Stigma in Australia - Research Proposal Example

Research Proposal: Dementia Related Stigma in Australia Name Institution 1. Introduction Background Current estimates suggest that there are more than 25 million people living with dementia all over the world. This figure is projected to double in the next twenty years to reach over 50 million by 2034 (Ferri et al., 2010, p.101). In Australia, there are about 35,000 people diagnosed with dementia with new case recorded every year. Dementia causes a person to have an impaired ability to learn and reason, a very poor memory and extremely high stress (Marshall, 1997, p.42). The impact of this condition is quite extensive, since the effects are visible in all aspects of the victim’s life. However, nothing much is understood about having dementia from the victim’s perspective (Aggarwal et al., 2003, p.194). Having a chronic condition, disability or illness, for instance dementia, can bring the perception that the sufferer is different from the average person. This often subjects the individual to discrimination and stigmatization by those that do not suffer the illness (Acorn & Joachim, 2000, p. 245). Stigma is a sign or show of discredit and /or disgrace, considered as undesirable by the mainstream society (Jones et al., 1984, p.29). Thus, stigma usually affects the identity of a person and also affects the care-givers and family members. Such situations deprive the involved people of their dignity, interfering with their effective participation in everyday life. It has long been known that stigma is a major concern in the provision of care for dementia patients and is an obstacle to the quality of life (Reidpath et al., 2005, p.469). What is dementia? In the distant past, dementia was categorically understood just as a disease and was only a concern for professionals in the fields of medicine, pathology and genetics (Hellstrom et al., 2005, p.287). The medicalization of dementia consequently led to searches for cures and treatments, whilst little consideration was directed to the everyday care for the patients or to the necessary relationships with care-givers. As a result, society has over time tended to see persons with dementia as lesser than human, hence the disempowerment, loss of self-esteem and depersonalization of the victims. However, recent studies have shown that dementia cannot be explained in terms of assumptions of a linear relationship with brain pathology (Harding & Palfrey, 1997, p.63). Today, dementia is seen as a conglomeration of a number of illnesses and is better conceptualized as a disability resulting from many factors, which are both socio-psychological and neurological (Kitwood, 1990, p.177). These discoveries and perspectives have led to a more reasonable practice of dementia care. The new approach underscores the humanity of the patient suffering from dementia and has an imperative of promoting the individual’s personhood. Dementia taken as a disability The Disability Act of the World Health Organization describes disability as “the restrictions in the capacities of an individual to take on an occupation, profession or business enterprise in a State, or to effectively participate in cultural and/or social life in society for the reason of enduring or recurring sensory, physical, intellectual or mental health impairment.”The disability experience is thus a personal as well as global phenomenon that carries cultural, political and economic ramifications (Barnes, 2002, p.312). Thus, dementia has been identified as one of the major causes of disability and poses serious challenge to the social and health care services. Iliffe et al. (2005, p.5) proposes that dementia should be thought of as an evolving disability and this is helpful in that communication is improved and anxiety reduced for all the involved parties. Taking dementia as a disability places emphasis on its environmental and bio-psycho-socio components; encourages focus on the individual’s remaining abilities and respects the sufferer’s personhood. Rationale for current study To this day, little is known of the Australian perspective about the experiences of persons suffering from dementia and the experiences of the family members and care-givers, in relation to experiences and perceptions of stigma emanating from dementia. The purpose of this research is to conduct a qualitative study to understand the phenomenon of dementia related stigma in Australia. Additionally, the study seeks to understand various perspectives of all the affected, since this is crucial before the development of any interventions. In a bid to address this research purpose, people with dementia, family members, care-givers/nurses and all other involved health professionals will be interviewed. Research Question What is the level of dementia related stigma and what are its impacts on all those involved in an urban Australian neighbourhood and the surrounding rural areas? Aims and Objectives The aim of this research is to conduct a study on stigma related to dementia and its impact on those involved/affected, that is, the individual with dementia, the family members, care-givers and allied health personnel. Specific objectives of the study include: The utilization of grounded theory techniques/methods to understand the phenomenon of stigma in dementia. Examination of all elements leading to the construction of dementia allied stigma and to understand their application and manifestation in everyday life. To explore the concepts of discrimination and fear associated to dementia, especially as a disability. To identify possible strategies for deconstructing the stigma associated to dementia. Research gap The impact of dementia related stigma and its components on the practices of health care and on dementia policy need further exploration, especially the influences of prejudice, discrimination and stereotyping. In the case where the care givers have wide experience handling dementia patients, there is potential to explore the effects of dementia on health professionals’ perspectives and how this impacts relationships. There is need to create a unifying theory which effectively outlines the components of stigma related to dementia and its impact on relationships between care-givers and the sufferers. Such a theory would come in handy in guiding the development of intervention programs and education to address stigma in dementia. Research is required to anchor the design and implementation of integrated approaches to dementia related health services and on how training, media and policy approaches might impact on dementia related stigma. More research is needed to illuminate on how dementia emanating stigma affects socio-cultural interactions and creates a social distance. The Health Research Board, the National Council on Ageing, the National Disability Authority and all other private and public funders should prioritize addressing stigmatization issues and development of effective evidence based approaches to address the same. 2. Methodological Approach The Research Approach The research will utilize a sociological analysis method in a bid to understand stigma related to dementia. Consistent with the research requirements, grounded theory methods will be predominantly utilized to inform the course of this study. Studies show that researches into stigma have not thoroughly accounted for stigmatization in terms of social relations; hence no real analysis has been carried out to determine the social processes involved (Grytten&Maseide, 2005, p.239).As such, research grounded in the experiences of those affected by dementia is needed. Grounded theory is fundamentally used in social and health sciences to create meanings and distill pertinent issues that are of great importance to health and people in general (Mills et al., 2006, p.13). Such theory is designed to bring to the surface that which needs to be known and also bring forth the important issues emerging from a given research process. Therefore, using such a practical approach, it is anticipated that information related to concerns of dementia and the conditions, contexts, causes and consequences of stigma related to dementia as well as the processes leading to stigmatization will emerge. Sample Considering the mature of this research and various parameters to be used, non-probability methods of sampling, that are in line with the grounded theory will be used in the identification of participants with experience and knowledge of socio-cultural processes attached to dementia. Initially, purposive sampling will be used and as various concepts emerge, theoretical sampling techniques will continue in a bid to attain saturation of data (Carpenter &Sreubert, 2003, p. 96). Persons with dementia and their family members To get potential participants suffering from dementia as well as their care-givers and/or family members, these potential participants that fulfill the criterion of the study will be approached; the situation explained to them and they be given letters of invitation as well as study information pamphlets. Gatekeepers from a professional body such as the Alzeimer’s Society of Australia can be engaged to act as the liaison body between potential participants and the researchers. Additionally, they will see to it that the potential participants will not be exposed to excessive or inappropriate demands of the research process (Manders, 1992, p.1462). Any person wishing participation will complete the letter of invitation and return it to the researcher. The potential participants will then be contacted to discuss eventual participation. Health professionals and participants from the disability organization In accordance to the research criteria, members of the selection team will find health professionals and members from disability organizations/agencies with knowledge and experience in dementia and stigma related issues. These individuals will contribute to the analysis of the subject matter, leveraging the multiplicity of their varied perspective. As in the previous case, to access these individuals, letters of invitation will be sent out and study information pamphlets given out to them. Potential participants considering the offer will complete the letter of invitation and return it to the sender/researcher. The potential participants will then be called to discuss their involvement. Appropriate considerations should be made to seek permission from appropriate employers for all employed participants. Participant Profiles In addition to interviewing the potential participants, some basic background information will be collected as the research ensues. To ensure adequate information is collected and considering the timeline of the research, a sample size of about 25 participant interviews is appropriate. Around 6 urban and rural geographic locations should be considered. Individuals with dementia Interviews will be conducted with 12 individuals living with dementia. Some of these participants will be from urban areas and others will be from rural areas. Additionally, the participants should be living with at least one family member and should currently be accessing a memory clinic, a consultant or a care-giver on a weekly basis. The participant with dementia will have a family member present during the interview. Care-giver/family members At least 12 interviews will be conducted with the care-givers and/or family members. 10 of these participants must be currently taking care of a person with dementia. The location of these participants (local or urban) should be noted. Additionally, the time/years that the participants have been giving the care should be recorded. The age and sex of the participants of the individuals will also be given. Below is a sample table that can be uses to fill the details discussed above. Sample Table 1: Family members and care-givers by sex and age Age bracket Male Participants Female Participants 20-29 0 3 30-39 0 2 40-49 1 1 50-59 2 0 60-69 0 1 70-79 1 0 80-89 0 1 Total 4 8 Sample Table 2: Care-giver and Family members’ relationships with the individual with dementia Relationship to the individual with dementia No. of Participants Husband 1 Wife 3 Son 0 Daughter 2 Daughter- in -law 1 Trained care-giver 4 Total 11 Sample Table 3: The types of dementia reported Type of Dementia No. of people with dementia Vascular dementia 7 Alzheimer’s disease 2 Fronto-temporal dementia 1 Others/unknown 2 Sample Table 4: The services accessed by family or care-givers Type of Service No. of participants Day-care service 8 Consultants (Medical or any other) 11 Care-giver coming to the home 6 Public nursing homes 3 Alzheimer Society of Australia 10 Private nursing home 3 Respite services 9 Health professionals and participants from disability societies At least 8 interviews will be conducted with health professionals participating in this research and two interviews will be done with 2members of a disability society. The health professionals participating should have relevant experiences working with dementia patients. The other two participants from the disability organization should not necessarily have experience with dementia but should be well versed with stigmatization concepts and the socio-cultural construction processes of stigma. Sample Table 5: Health professionals and disability society representatives- occupation and dementia related experience Occupation of participant Years of experience in dementia care Consultant geriatrician 18 General practitioner 7 Day-care manager 6 Home-care coordinator 5 Public-care coordinator 4 Social worker in dementia society 16 Care-giver support resource 9 Disability society representative N/A 3. Data Collection and Analysis Data Collection Instruments of data collection – Interview guides Data will be collected by means of non-directive and semi-structured interview guides. This is because very structured methods of data collection are not consistent with the grounded theory. Additionally, highly structured guides will not likely to give room to the participant to explain some of their vague responses. The guides will also be structured so as to properly address and reflect the research aims, by ensuring that they contain all the relevant topic areas. The topic areas are crafted to facilitate and enhance the exploration and analysis of multi-faceted dementia experiences and in the process declassify the experience of stigma associated to dementia. Many probes will be added to extract detailed participant elaborations. Pilot Study/Piloting The researchers will conduct a pilot study. The pilot interviews will be necessary to test the feasibility and suitability of the developed guides and all adopted procedures prior to the actual research study. This process will also be important in identifying any problems and obstacles to study and hence enable the refinement of the entire process (Mead, 1993, p.64). The experience of this pilot program will additionally demonstrate the level of affective and cognitive engagement necessary for a successful interviewing process and also give a realistic impression of what to expect during the actual data collection process. Piloting should also highlight any need for topic guide adjustments. Above all, piloting will give sufficient interviewing practice to the researchers, reduce their self-consciousness and clear any other research obstacles lurking in the background. The interviewing process The interviewing process will be conducted inflexible, systematic manner. The interviews will range from 20 to 40 minutes and will be held in on the convenience of individual participants, for instance, in a participant’s home. All interviews will be recorded in video and audio modes upon the consent of the participant. These recorded interviews will be essential in providing accurate and critical records of first-hand experiences and will be critical in the consequent analysis process.The researchers will also continually take field notes during each interview. These notes will underscore various points of importance relating to the many research contents and contexts.They will also come in handy during the analysis process. During the interview period, the chief investigator will listen to the interviews and after completion, he/she will discuss with the research team for possible adjustments or additions to the next interviews. The developed interview guides will thus be used organically. Care will be taken to reduce the frequency of using the term ‘stigma’ so as to avoid possible influencing of participant responses. Flexibility will be factored in by allowing the nature of responses given by participants to guide the direction of the process. The researchers will strive to build rapport with the respondents, show genuine interest and use a friendly conversational approach. Trust, openness and a supportive attitude are paramount virtues for a successful process. The exploration of issues will have little to do the interviewer’s direction, constraints, probing or prodding but on the willing divergence of information by the respondent upon feeling comfortable and at ease with the whole setup (Charmaz, 2003, p.44). Data Analysis Polit& Beck (2010, p.552) define data analysis as a systematic organization and consequent synthesis of data collected in a research process. The processes which will be utilized to execute the analysis phase will be consistent with the grounded theory techniques. The whole process will involve the simultaneous collection of data and continuous comparative coding, analysis, categories’ identification and generation of theories (Jeon, 2004, p.255). During the entire course of this study, idea write-ups andkeeping of reflective diaries will be critical in enhancing flexibility and developing elaborative categories. In the initial stages, transcripts will be read many times whilst playing the interview recordings. This will enable early immersion of the investigators into the available data. The data will thereafter be subjected to open coding (manual line-by-line) in a bid to identify various processes and consequently assign coded labels. Transcribed interviews will then be loaded into an analysis computer program, such as the NVivo 8 (QSR International, 2007) package and further analysis carried out. Use of an effective computer program will assist in efficient management and storage of data. Additionally, the program will be instrumental in creating audit trails that can elaborately illustrate all research processes. Action codes can also be employed in the initial stages to assist in visualizing isolated static topics in contrast to interrelated processes (Charmaz, 2003, p.53).Whilst the coding proceeds, the labels will be organized to construct categories, given that similarities and differences have been clustered. The categories can then be organized further into themes. The process of data analysis can be summarized into the following 8 steps: Step 1: Data preparation - This phase involves the selection of the units of analysis which will be properly defined in the following stage. The content of the data must match the study question. Researchers analyze interview transcripts to reveal participant responses. Step 2:Definitions of units of analysis –A unit is a collection of statements and/or words which have the same meaning. Sentences, paragraphs or phrases are kinds of units that can be placed under analyses. In this research, the investigator will go through the interviews while simultaneously playing recorded tapes so as to validate transcripts and get an initial impression of the data. Step 3: Coding scheme and Development categories–A coding scheme is developed from previous studies, theories and the presently available data. For consistency, the researcher needs to construct some coding manual. Step 4:Testing code scheme on a text sample – The coding scheme needs early validation. This is best done by coding some sample of the collected data and also checking its consistency. This is carried out during piloting. If consistency is low, coding rules need revision until acceptable levels of consistency are reached. Step 5: All text coded – Upon achieving reasonable consistency, coding rules are now applicable to the whole body of data Step 6:Assessing consistency of coding – The fact that the coded sample showed consistency and dependability should not lead to the presumption that the research is consistent. Consistency needs rechecking. Step 7:Drawing conclusions using the now coded data –Upon complete coding, the researcher can now derive meanings from the data Step 8: Reporting finding and methods used –The researcher will finally report on the findings of the study and the processes used to arrive at a trustworthy result. Rigour To address issues of rigour and ensure the collected data is trustworthy, some measures will be employed in the entire duration of the research process. Criterion developed from the grounded theory will be utilized as shown in the table below. Sample Table 6: Criterion for guiding evaluation of research findings Fit– the emergent theory must fit with the data it emerges from and will not be derived from existent theoretical leanings. Relevance– The emergent theory will be quite general so that it is applicable in other contexts Work– The theory should provide a practical organization of collected data that pragmatically explains the specific areas to which it applies. Modifiability– The theory is in a form that can be modified in case of additional data or conditional changes. Credibility - Anybody reading the research should be convinced enough that the research is an illustration of the actual experience (Moule& Goodman, 2009, p.81). There are a number of activities that can be applied in improving the credibility of research and include: triangulation, member checking and prolonged engagements. In this research, member Checking will be adapted, whereby the research participants are involved in the verification of the researcher’s interpretations. Dependable & Confirmable - Dependability means that the findings of the research are accurate and consistent. As such, it calls for the involved investigators to account for all contexts and findings. Dependability in this research will be reinforced by utilization of an audit trail, which is a path that the investigator follows in the process of constructing and interpreting themes. Transferability - There is good reason to demonstrate that the findings of the research are transferable. This implies that knowledge and meanings derived in a certain environment should be applicable (at least to a certain degree) in another setting. The findings of the research and the suggested recommendations evaluation will be constructed by considering the entire research undertaking and also how the main components of the theory (Grounded theory) affect the quality of research. Additionally, peer briefing will be incorporated to stimulate exploration and consideration of possible additional explanations and perspectives at the various research stages (Long & Johnson, 2000, p.35). Peer briefing will also help in attaining the aim of ensuring that the category analysis is quite accurate and all findings fit in with the existent data. 4. Ethical Considerations In such a research undertaking, it is likely that many participants in the study will be drawn from very vulnerable and underprivileged populations, especially the persons suffering from dementia who will be participating in the study. Such people have had emotionally draining, rough experiences of stigmatization. As such, a multiphase approach will be adopted to address all the ethical issues of this research. Phase A Ethical approval for carrying research forward will be sought from the Ethics Committee affiliated to the Faculty of Health Sciences of this institution. Phase B All potential participants will be sent letters of invitation to ask them to participate in this research. Additionally, information pamphlets will be forwarded to accompany the letters of invitation.\ Gatekeepers (protectors) will be sought to facilitate the correct access to the research sample. This will be in order to protect the participants against mishandling during the research process and also make sure that the participation is absolutely voluntary. During the drafting of the letter of invitation and the information pamphlets, the content, readability, font size, spacing and length of the pamphlet given to all participants, especially to those with dementia, must be well considered. . Phase C In order to protect the rights and honour of persons with dementia, the researchers must meet the participants and their family member(s) or care-givers, before actually engaging them in the research process. The purpose, nature and direction of the research study and the involvement of each individual participant must be explained in an unhurried, sensitive and understandable manner Phase D Consent will be sought in writing from all participants before any form of research interview is conducted. A tick-box acceptance form will be designed to improve the readability and ease process of making decisions by the potential participants. The form will be in the format of simple steps that are presented in logical consequences. Codes will be assigned to each and every participant during the entire research process to ensure confidentiality and anonymity, hence protecting their identity of all involved. The participants will be referred by their codes during the entire period of this research. Ongoing assurance process will be adopted whereby participants’ wishes are granted and capacities observed during the research period. All data collected in the entire research exercise will be stored in accordance to and with the Data Protection Act. All participants suffering from dementia will be afforded the privilege/opportunity to be interviewed in the presence of a family member or a care-giver. Participants will be assisted with all relevant information and support services from a reputable health society such as the Alzheimer Society of Australia and also from the Faculty of Health Sciences. In case there is an indication of discomfort or upset during the period of a research interview, the researchers will immediately discontinue the engagement and continue onlywhen the participant feels sufficiently ready to resume the engagement. 5. Research Timeline January 2015 February 2015 March 2015 April 2015 May 2015 June 2015 July 2015 Research team appointment Dealing with ethical approvals Literature review Field work Transcription Data analysis Draft report Final report Report launching July 10th 2015 References Aggarwal, N., Vass, A.A., Minardi, H.A., Ward, R., Garfield, C. and Cybyk, B. (2003) People with dementia and their relatives: personal experiences of Alzheimer’s and of the provision of care. Journal of Psychiatric and Mental Health Nursing.10(2): 187-197. Acorn, S.& Joachim, G. (2000) Stigma of visible and invisible chronic conditions. Journal of Advanced Nursing.32(1): 243-248. Barnes, C. (2002) Introduction: disability, policy and politics. Policy and Politics.30(3): 311-318. Charmaz, K. (2003) Grounded theory, objectivist and constructivist methods In: Denzin, N and Lincoln, Y. (eds) Strategies of Qualitative Inquiry, 2nd Edition. Thousand Oaks: Sage Publications. Ferri, C.P., Prince, M., Brayne, C., Broadty, H., Fratiglioni, L., Ganguli, M., Hall, K. and Gibbons, F. (1985) Stigma perception: social comparison among mentally retarded persons. American Journal of Mental Deficiency.90(1): 98-106. Grytten, N. and Maseide, P. (2005) ‘What is expressed is not always what is felt’: coping with stigma and the embodiment of perceived illegitimacy of multiple sclerosis. Chronic Illness.1(3): 231-243. Hellstrom, I., Nolan, M. and Lundh, U. (2005) Awareness context theory and the dynamics of dementia. Dementia.4(2): 269-296. Harding, N. and Palfrey, C. (1997) The Social Construction of Dementia. Confused Professionals?London: Jessica Kingsley Publishers. Iliffe, S., De Lepeleire, J., Van Hout, H., Kenny, G., Lewis, A., Vernooij-Dassen, M. and the Diadem Group. (2005) Understanding the obstacles to the recognition of and response to dementia in different European countries: a modified focus group approach using multinational, multidisciplinary expert groups. Aging and Mental Health.9(1): 1-6. Jones, E.E., Farina, A., Hastorf, A.H., Markus, H., Miller, D.T. and Scott, R.A. (1984) Social Stigma: the Psychology of Marked Relationships. New York: W.H. Freeman and Company. Jeon, Y.H. (2004) The application of grounded theory and symbolic interactionism. Scandinavian Journal Caring Sciences. 18: 249-256. Kitwood T. (1990). The dialectics of dementia: with particular reference to Alzheimer’s disease. Ageing and Society 10(2), 177-196. Long, T. and Johnson, M. (2000) Rigour, reliability and validity in qualitative research, Clinical Effectiveness in Nursing.4 (1): 30–37. Marshall, M. (1997) Therapeutic design for people with dementia. In: Hunter, S. (ed) Dementia: Challenges and New Directions. London: Jessica Kinglsey. Mills, J., Bonner, A. and Francis, K. (2006) Adopting a constructivist approach to grounded theory: implications for research design. International Journal of Nursing Practice.12: 8-13. Mander, R. (1992) Seeking approval for research access: the gatekeeper’s role in facilitating a study of the care of the relinquishing mother. Journal of Advanced Nursing. 17(12): 1460-1464. Mead, D. (1993) Personal experiences of designing questionnaires.Nurse Researcher. 1(2): 62–70. Long, T. and Johnson, M. (2000) Rigour, reliability and validity in qualitative research, Clinical Effectiveness in Nursing.4 (1): 30–37. Moule P. & Goodman M. (2009) Nursing research an introduction. Sage, Los Angeles. Polit D F. & Beck C T. (2010).Essentials of nursing research: Appraising Evidence for nursing practice, 7th edn. Lippincott, Williams and Wilkins, London. QSR International Pty Ltd. (2007) NVivo 8.Doncaster Victoria: QSR International Pty Ltd. Reidpath, D., Chan, K., Gifford, S. and Allotey, P. (2005) He hath the French pox: stigma, social value and social exclusion. Sociology of Health and Illness.27(4): 468- 489. StreubertSpeziale, H. and Carpenter Rinaldi, D. (2003) Qualitative Research in Nursing. Advancing the Humanistic Perspective.3rd Edition. Philadelphia: Lippincott. Read More