Being a Sibling of a Child with an Intellectual Disability - Research Proposal Example

Section An exploration of the experience of being a sibling of a child (or children) with an intellectual disability Rationale of Research and Problem Statement Rationale: This study focuses on the psychosocial impact of having a brother or sister with a lifelong intellectual disability. Literature survey reveals mixed findings on such behavioral impact, ranging from depression, anxiety and psychological trauma on one end to no discernible negative impact on the other. It is also apparent from literature survey that more focused studies to investigate the psychological functioning of siblings of children with a chronic illness are needed. Studies have concluded that suitable intervention programs for the siblings of children with a chronic illness need further attention and development (Sharpe & Rossiter, 2001; Stoneman, 2005). The apparent impression discerning from literature surveys is that of lack of consensus. Cuskelly puts it forthright; the research studies dealing with psychological adjustment of the siblings of individuals with disability, gives an impression of contradiction, or confusion (1999). Another methodical advance of recent origin emphasizes quantitative research. This approach seeks to narrow the disagreements referred above through meta-analysis. The strategy used herein is to assess factors that produce inconsistencies, stemming from both, substantive and methodological. One popular approach of quantitative research is that of vote-count meta-analysis, which presents a tabulation of studies by their outcomes. Using this technique, Howe reviewed 21 studies to show that there appears to be a negative psychological impact on siblings of intellectually challenged individual (1993). However, even here, conclusions vary. Summers et.al, reported both positive and negative consequences on the sibling of an individual with disability (1994). Research Problem: The research problem embodies the research study, both in its scope and depth, and unambiguously defined (Fouche, 2005). In this study, the research problem is centered around the psychosocial effects on the siblings of individuals subject to intellectual disability. The World Health Organization estimates there are as many as 100 million people in the world with intellectual disability. The prevalence of intellectual disability is generally estimated to be between 1-3% of the population. People with intellectual disability (PWID) represent a heterogeneous group with a varied range of highly complex needs, yet they remain among the most vulnerable members of society (O'Hara, 2008). The underlying rationale and principles of care for PWID have undergone radical changes in countries such as, USA, Europe, Australia and Canada over the past four decades. The focus is now on civil and human rights, with social inclusion and citizenship free from discrimination (Bouras, 2002). The emphasis has shifted to the movement towards integration, participation and choice with the development of community based facilities, and growing empowerment and self advocacy for PWID and their families (Tsuda, 2006). The family is seen as the most appropriate living environment for PWID, which is a function both of cultural values and availability of services (Special Olympics, 2003). In this context, this study shall identify with recommendations, the counseling and support needs of siblings of individuals with intellectual disability. The study shall also seek to integrate the current efforts of agencies, organizations and support groups with the findings of this study. Research Theme: The researcher has selected the following main themes for focused study, research, and analysis with regard to siblings of children with intellectual disability: a) Psychosocial risks: kind, intensity, short and long term effects b) Coping strategies and family support systems c) Society and community empathy, sensitivity and support systems d) Cultural impact; gender impact; ageing factor; in adapting strategies e) Positive spin-offs, if any; for example, such siblings grow with more compassion (Hannah & Midlarsky, 1985). Aims and Objectives Motivation: The motivation for this study is both personal and professional. I have known a few families having individuals with intellectual disability. The support system they derive from their family, and in particular from siblings, are often close, and touching. Many such siblings who share the trauma of their affected brother or sister, themselves, unwittingly withstand psychosocial pressures in silence, without seeking any counseling whatsoever. Further, movies like "Rain Man", "Charlie", "The Ringer", and "I am Sam" had an impact in my feeling towards families bearing a fond member living with intellectual disability. These movies have inspired and sensitized me to their trauma. On a professional front, I feel that while the individual affected by intellectual disability gets clinical and counseling support being the primary sufferers, their siblings, who face the secondary effects of trauma, often get neglected. Through this study, I intend studying specific risks and needs the siblings face, and collate and analyze specific emerging themes and trends, which would be shared with the larger interest groups: social workers, psychologists, clinical specialists, parents and siblings of individuals affected by intellectual disability. I doing so, I shall also be able to add to the knowledge pool and help to improve the on-going efforts of NGOs, Government, Social Service Groups, and individuals spearheading the cause of individuals with intellectual disability. Aims: The aim of the research is to conduct needs assessment of siblings of individuals with intellectual disability. The findings would help social workers, counselors and other professionals to improve support and service delivery to the affected family. The findings would also highlight specific psychosocial difficulties faced by these siblings. The aim was reached by focusing on specific objectives. Objectives: The objectives of this research are exploratory and descriptive. The focus is on understanding the effects on siblings of individuals with intellectual disability. The study would also identify and recommend suitable support systems for these affected siblings. a) Objective-1: Undertake preliminary literature survey with a view to understand and build conceptual framework on available family support systems to individuals with intellectual disability. The study would discern what specific psychosocial effects do the families, especially siblings, of affected individuals' experience. b) Objective-2: Undertake semi-structured interviews, administer questionnaires, and carry-out observation, to explore, and understand the psychosocial pressures and trauma on siblings of individuals with intellectual disability. This would include amongst others, family life, education, career, bonding and marriage, health, and societal and counseling support systems. c) Objective-3: Describe the needs of siblings of individuals with intellectual disability. Through interviews and observations, the study shall identify emerging themes. The study shall also explore available institutional and social support systems and identify gaps between established needs and available services. d) Objective-4: The outcomes from the study shall be validated through peer and expert reviews and shall actively involve the participants to make firm recommendations for improving support delivery and counseling services to the families, especially siblings, of individuals with intellectual disability. The recommendations with supporting analysis - qualitative and quantitative, shall be published in the thesis report. Methodology Interpretive Social Science: This research study proposes to use the methodology of interpretive social science, where research is seen as a means to understand, and describe social action. People are viewed in a social context, where mutual and collective interactions, resonates with the reality of life (Neuman, 2003). The philosophical foundation of Interpretive Social Science is logically sound and more resistant to inadvertent researcher bias. Interpretive Social Science provides a number of advantages:- a) it uses both quantitative and qualitative techniques b) it helps in refinement of the research question. The methodology can influence the refinement of the research question (Garrison, & Shale, 1994). Therefore, the researcher can pose the broadest research question and refinement c) As add-on, researcher has the flexibility to augment research techniques with methods, such as, discourse, analysis, and in-depth interview of participants. The research design would include:- a) Collect data using questionnaires, interviews, on-line comments, focus group discussions, electronic journals, and observations. b) Analyze data to extract generalizations. Immersion in the data will allow discovering prevailing views on the broad questions posed. Common threads and re-occurring themes among the data that is gathered can be captured and reported. c) Undertake analysis to explore the nuances and subtleties emerging from interpretations from data. d) Expand analysis to seek deeper understanding, confirmation of the initial aims of the project, achievements, and areas that need addressing in future researches undertaken. Research Plan: a) Preliminary Literature Survey: This would be conducted before attempting any data collection. The idea of such a survey is to build background material on intellectual disability, and how family, especially siblings are dealing with their kin affected by intellectual disability. b) Identification of Participants: Suitable participants using purposive sampling procedure would be identified from (please specify the region) representing a wide spectrum of population in terms of ethnic background, economic status, gender, and age. In as much as possible, English speaking families would be chosen as a first preference. Informed consent would be obtained, and in case of participant being less than 14 years, parental concurrence with proxy consent shall be obtained. Informed consent shall be the norm before every interview session. Confidentiality would be guaranteed and anonymity maintained throughout the study by the researcher. c) Interviewing the participants: Verbal interview and structured questionnaire shall be the major instruments for data collection. This would be supplemented and validated with observation, wherever needed. A series of interviews with the participant at different stages of research is planned. d) In-depth Literature Survey: The outcome of data collected from interviews would be validated with research case studies available in public domain, scholarly reviews and published reports. The in-depth literature survey shall act as a control mechanism in the research study. e) De-briefing Participants: After each interview session, de-briefing shall be conducted with participants. De-briefing provides an excellent opportunity for participants to express their feelings about the study and affords the researcher a chance to rectify ant misunderstandings or incorrect perceptions between researcher and participants' point of view. f) Interim-reports and Peer Reviews: Discussion on analysis and emerging interpretations would be subject to peer review for a neutral party feedback. This would help to clarify any biases stemming into the study. Limitations The research study would be executed within the boundaries and constraints of an academic calendar. The researcher foresees the following limitations in this study: a) Sample size of participants may be limited owing to time and cost constraints. The sample would also be restricted to English speaking families, as far as possible to avoid a third-party translator services b) Informed consent may preclude some of the participants from joining or withdrawing from the study. c) Time and frequency of interviews with participants may have to be curtailed to match the availability of participants for the study, and in keeping with family and social pressures. d) Written or printed material like structured questionnaires as instrument for data collection may not work with participants who are children below age of 14 years. In such cases, photos, images, pictures and other animated video supplements may have to be used. Assumptions The researcher has made the following assumptions in formulating the research study: a) Counselor, and the medical specialists know the best line for treatment of intellectual disability b) Siblings of the affected child are prone to psychological impact c) Family culture and support system effects the sibling's responses d) Gender of the sibling and that of the affected child may possibly have some effect on the psychosocial behavior e) Siblings need counseling f) Inadequacy in available family support systems, which may need further strengthening and even paradigm shift in delivery services and methods. Schedule - Timetable (please add time lines) The key activities for the successful completion of this research study can be divided into three stages: a) Preparatory Stage: Conduct pre-research survey, problem recognition and formulation Evolve research plan, methods and identify key resources with timelines Elucidate scope and limitations of research work Submit proposal for acceptance by academic committee b) Research Stage: Conduct preliminary literature survey Identify key participants and obtain their consent Gather data through semi-structured interviews, questionnaire surveys and observations, as appropriate Collate, store, secure data in appropriate media, files and soft databases Analyze, summarize and report key findings and themes Undertake in-depth literature survey to validate key findings Undertake peer reviews to refine key findings c) Publish Findings: Publish interim reports, discuss findings with participants where appropriate Publish draft final reports for review Publish final research study report d) Post Research: Archive and secure all data files and case studies Archive all audio-video recordings Archive diaries and log-books Secure and ensure confidentiality of sensitive data Publish lessons learned and shortcomings in research study, if any, for posterity. References: Bouras, N & Jacobson J 2002, 'Mental health care for people with mental retardation: a global perspective', World Psychiatry, vol. 1, no. 3, pp.162-165. Cuskelly, M 1999, 'Adjustment of siblings of children with a disability: Methodological issues', International Journal for the Advancement of Counseling, vol. 21, pp. 111-124. Fouche, CB 2005, Writing the research proposal, in AS De Vos, H Strydom, CB Fouche, & CSL Delport (eds.), Research at Grass Roots: For the social services and human service professions, 3rd edition, Pretoria, Van Schaik Publishers. Garrison, DR, & Shale, D 1994. Methodological issues: Philosophical differences and complementary methodologies, in DR, Garrison (Ed.), Research perspectives in adult education pp.17-37, Florida, Krieger Hannah, ME & Midlarsky, E 1985, 'Siblings of the handicapped: A literature review for school psychologists', School Psychology Review, vol.14, pp. 510-520. Howe, GW 1993, Siblings of children with physical disabilities and chronic illnesses: Studies of risk and social ecology, in Z. Stoneman & P. W. Berman (Eds.), The effects of mental retardation, disability, and illness on sibling relationships: Research issues and challenges, pp. 185-213, Baltimore, MD, Paul H. Brookes. Neuman, WL 2003, Social Research Methods: Qualitative and Quantitative Approaches, 5th edition, Boston, Allyn and Bacon. O'Hara, J 2008, 'Attending to the health needs of people with intellectual disability: quality standards', Salud Publica Mex, vol. 50. Sharpe, Donald & Rossiter, Lucille 2002, 'Siblings of Children with a Chronic Illness: A Meta-Analysis', Journal of Pediatric Psychology, vol. 27, no. 8, 2002, pp. 699-710. Available at: http://jpepsy.oxfordjournals.org/cgi/content/full/27/8/699 Special Olympics 2003. Multinational study of attitudes toward individuals with intellectual disabilities - general findings and calls to action. Special Olympics, Centre for Social Development and Education, University of Massachusetts, Boston. Stoneman, Z 2005, 'Siblings of children with disabilities: Research themes', Mental Retardation, vol. 43, no. 5, pp. 339-350. Summers, CR., White, KR., & Summers, M 1994, 'Siblings of children with a disability: A review and analysis of the empirical literature', Journal of Social Behavior and Personality, vol. 9, pp.169-184. Tsuda, E 2006, 'Japanese culture and the philosophy of self advocacy: the importance of interdependence in community living', British Journal of Learning Disabilities, vol. 34, pp.151-156. Section-2 Questions Concerning Recruitment of Participants 1. How are participants to be recruited If there is more than one group of participants, describe how each group is to be recruited. The purpose of data collection is to explore and describe the specific influences on siblings of children with intellectual disability. The researcher would enlist affected families around (please insert the name of specific region / city / or state). The research design used in this study would be the case study method. The case study would encompass in depth data collection methods such as interviews, observations, and collation of published reports that are contextually relevant and rich. Specific families in the region would be identified through a preliminary survey from local psychiatric counseling centers and hospitals. These families shall be approached through introductory e-mails / mail-letters, followed-up with telephonic conversations. The purpose of research, confidentiality of the case, and terms and scope of study would be clearly spelt out. This would be followed up with a visit to the family to take them into confidence and obtain their concurrence. Once a family is identified, a mutual agreement with explicit terms of reference would be signed between the researcher and subject's family. The study shall identify (.... put the number here) families, and each family shall be enlisted through the same procedure detailed above. Equal number of male and female with intellectual disability in the age range from 10-15 years, with at least one sibling, would be selected for this study. To the extent possible, the study shall choose families with diverse ethnic groups, as possible. The relevant social, cultural and historical background of the participants would be taken into consideration and given appropriate importance in the planning and conduct of research. The technique of non-probability purposive sampling would be used. The respondent-families would be chosen to suit their relevance to the research. Strydom (2005b: 202) states that purposive sampling is based on the judgment of the researcher. The researcher specifically chooses those respondents that are most characteristic or representative of the population. Semi-structured interviews with parents and siblings of the affected child would be the primary method of data collection. The interviews would be organized around areas of particular interest, allowing considerable flexibility in scope and depth (Greeff, 2005). The areas of interest would be: Interactions with counselors School experience Effect on family life; especially impact and influence on the siblings Concerns and hopes for future Coping strategies Interviews would be recorded along with researcher's notes. These would be used for data analysis. Questions Concerning Provision of Information about the Research 2. How will consent be obtained from participants Will it be obtained in writing Will participants be asked to sign an "informed consent" form At what point in, e.g., the interview or observation session, will they be asked to do this Will consent be obtained informally, by verbal agreement As a responsible researcher, I shall proactively take all steps necessary for upkeep dignity, welfare and privacy of participants. This would be in consonance with the recommendations of National Human Research Protections Advisory Committee (2002). Confidentiality issues will be recognized and considered at every stage of the research process. These stages include the initial study design; identification, recruitment, and consent processes for the study population; security, analysis, and final disposition of data; and publication or dissemination of data and results. Further all interviews with the participant shall be conducted in utmost privacy. Participants would have autonomous right to choose whether or not to be part of the research. They also have the right to change their decision or withdraw the informed consent given earlier, at any stage of the research without assigning any reason. The researcher plans to obtain voluntary and informed consent. This would be formally obtained prior to beginning of the first interaction with the participant and every subsequent session. Where participants are children below the age of 14 years, the child, and their parent(s) / legal guardian's written consent would be obtained. Informed consent would seek to: a) explain purpose, procedures, and duration of the research including any benefits and risks b) disclose alternative procedures c) Answer any questions about the study d) inform the individual that (s)he can withdraw at any time e) describe procedures and limits to confidentiality f) inform regarding a contact for further information The participant would also be assured of the confidentiality and non-disclosure of participant's identity in writing by the researcher. The mutual agreement form would be signed and held as formal record. 3. How much and what kind of information will be supplied to participants When (at what point in the research process) will this information be provided Participants would be treated as indispensable and worthy partners in research. The rights of participants shall be protected at every stage and level of research. The risks and benefits of the research to the prospective participants would be fully considered (Richardson, 2003) Data collected during the research processes shall be scrupulously analyzed, and conclusions when drawn, shall have a scientific basis. Conclusion(s) on participant information, based on content and value, after requisite peer and ethical reviews, would be disseminated as advisory if it helps to: a) Improve the participant's ability to cope with given conditions b) Assists the participant to seek better counseling advice c) Alleviate participant's concerns and hopes However, any information shared with the participant shall be validated with professional reviews and assessments; and supporting evidence and can be shared after reasonable analysis during the research study. In particular, during debrief sessions, all counseling and referral services shall be provided to improve social, health or coping abilities of the participant. Also, during the research, if certain evidence of participant's psychological or physical problems is detected; such information would be shared with the participant in the interest of their wellbeing. In such cases, appropriate source of professional advice could also be provided to the participant. 4. Have you decided that it will be necessary to withhold certain information about the research and the reasons for conducting it, from those will be participating in it Yes, such a circumstance can arise where the research conclusions may not have complete scientific justification, and may in fact, call for more studies. In such cases, it may not be prudent to share the research findings with the participants. In some cases where the observation method on the participant is critical to supplement the research findings, it may become necessary not to disclose the reasons for conducting research. Else, it is likely that the participants may alter their real behavior leading to false conclusions. However, in such cases, the ethical grounds of research would be upheld at all times, and the dignity, privacy and cultural values of the participant will never be compromised. It would be ensured that the nature and kind of information shared would not cause undue physical or emotional stress to the participant nor create health hazards (SRA, 2003) 5. Have you decided that, for the research to proceed, you will need to provide an explanation for the research and its intentions which is not the one that you and the research team espouse Yes. Although, intentional deception of the participant over the purpose and general nature of the investigation would be avoided, the psychological nature of studies, backed with extremely strong scientific or medical justification, may however warrant such deception in extraordinary cases. If applied, there would be strict controls, and approval of ethical committee and advisors. However, before conducting such a study, the researcher will have a special responsibility to (Wiles, Heath, Crow, & Charles, 2005):- a) Determine that alternative procedures avoiding concealment or deception are not available; b) Ensure that the participants are provided with sufficient information at the earliest stage; c) Consult appropriately upon the way that the withholding of information or deliberate deception will be received. d) Ascertain benefits, in terms of knowledge gained, outweigh the risk to the participants e) Minimize possible harm to subjects as a result of deception After such an experiment where deception becomes necessary, a special de-briefing would be conducted to: a) Probe for adverse reactions b) Attempt to mollify the damage of deception c) Explain the reason for the deception d) Educate participant about research e) Acknowledge the value of the participant's help 6. Will it be necessary to make provision for translation into languages other than English or for interpretation of the information which you are providing No, for the purpose of this study English speaking families would be chosen. If such a need were to arise, services of a professional translator could be sought. In such a case, the translator shall be brought into the terms of reference for research with regard to confidentiality and ethics. 7. Will participants be able to comment on (and, possibly, amend) the final report, or other product of the research, before it is finalized or goes into the public domain Yes. This would be achieved by sharing transcripts with participants so that they can re-check that what they said in the interview has been correctly interpreted and included in the study (Smyth, 2004). Further, informed consent, in this study would also extend to include participants' agreement in the presentation of collected data in reports and publications. Questions Concerning the Rights of Participants in Research and Possible Vulnerabilities 8. Are some of your participants likely to belong to groups in society which might be judged to be vulnerable or who are more open to exploitation than others, e.g., children, people who do not speak English well, recently arrived migrants or refugees, people with a mental illness, women. Yes. Since this study would include siblings of children with intellectual disability, some of the participants may be young children. Obtaining informed consent with participants would mean parental concurrence (proxy consent) and interventions; during interviews, and interactions. It is also likely that some of the families selected may be from economically disadvantaged segment, new migrants and varied ethnic groups, and may not entirely understand English very well. In such cases, help would be sought from professional translators to help interpret the discussions and offer clarifications. In view of above, the study would seek to keep written information during interactions with participants to a minimum, and instead use more of graphics, pictures, videos and animated presentations (Alderson, 2004). 9. Considering the nature of your subject matter and the manner in which you have chosen to research it, is there a possibility that you may subject some or all of your participants to experiences which may be unpleasant or stressful for them or which might lead to distress later on, after they have left the interview or returned the completed questionnaire There is no possibility of such an outcome There is only a remote possibility of such an outcome There is some real possibility this might happen There is a very high possibility of this happening If there is any chance of such an outcome occurring, would you explain how you intend to deal with it and more generally, how you will make provision for the comfort, sense of security and well being of your participants immediately before, during and after their participation in the research Recalling emotional trauma of the sibling with intellectual disability can cause some stress. The researcher would moderate the interviews with care. The researcher would also inform the participants of the consequences of participating and at all cost, uphold anonymity. However, no undue unpleasantness or distress on the participants is expected, since the study would hinge upon nurturing and support orientation and dealt with empathy (Levine, 1978). 10. Is it possible to guarantee the anonymity of your participants How will you attempt to ensure anonymity is protected Anonymity here is interpreted as a case where the researcher will not be able to pair a specific response with a specific respondent. Since this study would be heavily based on interviews, the researcher would always know the respondent. Therefore, technically speaking, anonymity cannot be guaranteed. However, all interview transcripts and data-sets would be alias coded with geographic identifiers, and password protected. Such a coding scheme would help in non-disclosure of real identity. Further, it would be made clear to participants through "informed consent" that although use of complex data sets with postcodes, and other geographic identifiers applied to case records would provide anonymity to an extent, no guarantee can however be given, that the case records cannot be back-linked to individuals. 11. What do you see as the issues in the area of confidentiality which your research poses How do you intend to safeguard participant confidentiality Confidentiality, for the purpose of this study is interpreted as a case where the researcher declares not to identify the respondents publically, but can match a response with the respondent. During this study, the researcher would maintain confidentiality at all times. The respondent identities shall be removed from data collected, and thus, confidentiality would be protected and guaranteed (Babbie & Mouton, 2003). 12. How are the records from your research to be stored, who will have access to them and what security will be placed on paper records and computer records Case study supported with interviews and questionnaire would be the primary source of data. The data management would involve: collecting and recording data; storing data; summarizing and analyzing information; generating categories, themes and patterns. The project plan would include: (a) creating record keeping plan, (b) developing record sets and (c) validate framework for data organization through pilot test (O'Meara, 2008). The researcher shall employ the best practices for record keeping (NCSS, 2007) such that, records are: (a) concise; (b) accurate; (c) Up-to-date; (d) meaningful; and (e) internally consistent. The primary data identifiers like name, address, telephone number, would be coded with aliases, encrypted and password protected. The connected data shall be linked to the primary identifiers via codes. Standard categories of themes would be evolved and expanded. The content associated with the themes shall be stored in memo fields. A list of keywords extracted from memo field would be stored for ease in searching key themes. All data record shall be date-stamped and validated. The principal characteristics of record retention to be incorporated include: a) Records would be as case files, log books and databases with restricted access b) Confidentiality of records through password protection, limited access, monitoring and logging access activities, and encryption of data where appropriate. References: Alderson, P 2004, Ethics, in: Fraser, S., Lewis, V., Ding, S., Kellett, M. & Robinson, C. (Eds.) Doing Research with Children and Young People, London, Sage. Greeff, M 2005, Information Collection: Interviewing, in AS De Vos, H Strydom, CB Fouche, & CSL Delport (eds.), Research at Grassroots: For the social services and human service professions, 3rd edition, Pretoria, Van Schaik Publishers. Levine, RJ 1978, The role of assessment of risk benefits criteria in the determination of the appropriateness of research involving human subjects. National commission for the Protection of biomedical and behavioral research. Appendix, The Belmont report: ethical principles and guidelines for the protection of human subjects of research, Washington DC, US. National Council of Social Service 2007, 'Documentation and Record Keeping: A Guide for Service Providers', NCSS Guidelines: Serial No: 037/SDD24/MAR07. Singapore. Available at: http://www.ncss.org.sg/documents/Documentation_Record_Keeping_Guide5.pdf National Human Research Protections Advisory Committee 2002, 'Recommendations on Confidentiality and Research Data Protections', NHRPAC recommendations. Available at: http://ohrp.osophs.dhhs.gov/nhrpac/documents/dataltr.pdf. O'Meara, Erin 2008, 'Developing a Recordkeeping Framework for Social Scientists Conducting Data-Intensive Research', SAA Campus Case Studies. Available at: www.archivists.org/publications/epubs/CampusCaseStudies/. Richardson, J & Godfrey, B 2003, 'Towards ethical practice in the use of archived transcripted interviews', International Journal of Social Research Methodology, vol. 6, no. 4. Smyth, M 2004, Using participative action research with war-affected populations: lessons from research in Northern Ireland and South Africa, in Smyth, M. & Williamson, E. (eds.) Researchers and their 'Subjects': Ethics, Power, Knowledge and Consent, Bristol, Policy Press. Social Research Association 2003, Ethical Guidelines, SRA Report, UK. Wiles, R., Heath, S., Crow, G., & Charles, V 2005, 'Informed Consent in Social Research: A Literature Review'. ESRC National Centre for Research Methods Review Papers. Read More