Adults Suffering from Intellectual Disabilities - Research Proposal Example

THE PERSPECTIVE OF BOTH THE PARENTS AND THE STAFF IN THE EXPERIENCES IN HOSPITALS WITH THE ADULTS SUFFERING FROM INTELLECTURAL DISABILITIES ThePerspective of Both the Parents and the Staff in the Experiences in Hospitals with the Adults Suffering from Intellectual Disabilities ABSTRACT/SUMMARY People with intellectual disabilities, have a need for healthcare, like everyone and actually may need it more so. There is a tendency in this group to seek care at the last minute or later than they should. They come into increasing contact with professionals in emergency units and hospitals as they meet their needs there instead of with a primary provider. When it is an accident and the person arrives in the emergency service, the preparation for caring for them seems not to be a problem. However, the experiences of people with intellectual disabilities with acute general hospitals in the UK and internationally has been reported to be quite negative. (Sowney, & Barr, 2008). At the same time, little is known about the experiences of nurses or the families of these patients nor the nature of the challenges that are faced. There is a lack of understanding that weakens the ability of the nursing staff to reduce barriers and provide a service that is equitable for people with intellectual disabilities. There is the belief that because many of the issues that occur, care should be given in a community setting instead of a hospital setting, however this is under debate (Lennox, Rey-Conde, Purdie, et.al., 2007). INTRODUCTION People with intellectual disabilities comprise about 2% of the UK population. Demographics have been changing, however, and intellectual disabilities increased by 54% over a period of 35 years from the year 1960 to 1995 (Cooper, Melville, & Morrison, 2004). There then followed another 9% increase over the years of 1998 to 2008. These changes have occurred due to improvements in socioeconomic conditions, intensive neonatal care, and increasing survival rates. The health needs of people who have intellectual disabilities impact primary healthcare services as well as secondary healthcare specialties. There are many health inequalities in this group of people and their disabilities may affect their experience in the hospital as well as their family and the staff working there in either a positive or negative way based on how prepared everyone involved is. There are many special issues in healthcare in with people who have intellectual disabilities. The majority of people with intellectual disabilities live in the worlds less developed countries. However, there is a lack of understanding in their care in all countries. There is still so little known about the types of care that are needed most. There is also a great lack of understanding as to the experiences of this group of adults and what their perspectives are about them. Industrialized countries are witnessing an increase in the longevity of persons with intellectual disabilities which brings about a greater need to understand their experiences with healthcare and their needs as well as how the healthcare industry can best meet them. Literature Review Once a problem is identified, research is very important. A comprehensive review of the literature that covers all of the relevant research must be done to find supporting as well as the latest information available on the subject. Similar and related studies are found on which a new study can be built while at the same time providing a conceptual framework that helps in supporting ideas in the study (Chitty & Black, 2007, pg278). The literature review was undertaken using databases from several online databases including CINHAL, BIDS, ASSIA, PsychINFO, EMBASE, MEDLINE, and ClinPsych. Each of the databases was searched using the same inclusion and exclusion criteria. One researcher reviewed each article, removing those that were duplicates, abstracts, or of poor quality. The remainder was kept for formal literature review. Inclusion and exclusion criteria have been defined ahead of time. Inclusion criteria included all qualitative studies done within the last 12 years related to hospitalization of adult patients with intellectual disabilities and their perspectives. Exclusions include abstracts, articles not coming from scholarly journals, and studies that are done including non hospitalized participants. Aims and Objectives In an effort to assure that the research that is done is concentrated within the need for the answer to our research questions, aims and objectives have been determined as guides. To understand what the perspective of intellectually disabled adults is to acute care hospitalization and the issues that surround treatment in this atmosphere. To investigate the perspective of the staff that take care of intellectually disabled adults. To determine staff attitudes toward caring for intellectually disabled adults. To determine the perspective of the parents of the disabled adults as to the experiences that happen to disabled adults when in an acute care hospital. Research Design and Methodology Every type of research has a research design. The logical sequence in which a research project is carried out comes from the design. The blueprint or design of each research tells what questions to ask, what data is relevant, what data to collect, and how to analyze that data (McEwen & Wills, 2007). A research design also describes a flexible set of guidelines that connect the theoretical paradigms to the strategies that are used for inquiry and the methods that are used to collect the data. In this case a quantitative design will be used. Cresswell (1997, pt 48), defined "a quantitative study as a study that was an inquiry into social or human problems and was based on testing a theory that was composed of variables, measured with numbers and analyzed with statistical procedures in order to determine whether the predictive generalizations of theory hold true." Qualitative approaches are meant to be studied in a natural setting which does not work well for this research as the concern is the reaction to the hospital setting. Methodology is equally important for several reasons as it is important to know how data was obtained in order to understand its validity as well as showing consistency in a field of study. Sample Size Research may become inaccurate based on the sample size alone. There are times when because of the small size of a sample, the researcher does not have a choice, however, when a choice is available, it is important that it is well thought out. The Quantitative method does have the advantage of not requiring a large sample size (Bartlett, Kolrelik, Higgins, 2009). However, there are two things that can happen if the sample size is not appropriate. First, in the alpha case, there may be a difference found that does not exist and the beta case, a difference may be missed that does exist. Acceptable margin of error must also be considered when determining what the sample size will be. In the case of categorical data, that acceptable margin is 5%. Sample sizes can be determined in many different ways but once they are determined, they should be part of the reporting structure of the research, allowing the reader to determine whether they think the assumptions are correct based on the sample size. This allows data to be reliable and valid (Kolrelik, et.al. 2009). Research Instruments This study will use the survey questionnaire technique. The aim was to determine the perception of the parents of the adult patients with disabilities while in the hospital. The questionnaire can be seen in Apeendix B. There is always the choice of using open or close ended questions. In this case, the study will use close ended questions. The Likert scale will be used for one group. The advantages of using close ended questions is that they are more easily analyzed by allowing each answer a number that is statistically interpreted and can be assessed. They are also better suited for computer analysis. They are designed to be more specific thus more likely to communicate similar meanings and they take less time for the participant to answer or the interviewer to ask. Procedures Approval will be sought through the ethical committee. The letter used can be seen in Appendix A. This study will be conducted over more than one centre and therefore the approval process is to obtain ethics center approval for a multi-centre study. This is done through the submission of a letter to one local research committee who does review and clearance when a survey or questionnaire is used. The local ethics committee will consider the ethics of the proposed research. The reason for this is to assure that the rights, dignity and welfare of the respondents is upheld. A copy of the cover letter, nature of the study, questionnaire, as well as data collection methods is attached. A first class stamp is attached to show the urgency of the request and a follow up reminder will be sent in two weeks for the original mailing, containing another copy of the questionnaire. Piloting Stage A questionnaire should be piloted prior to giving it to those who would be respondents. This determines whether the questions will be answered as well as whether the information that is obtained is what is needed. A pilot study is conducted with respondents that are as similar in background as possible to those that will be chosen for the study. The results are reviewed prior to a full study being done and the results from the pilot are not usually considered in the full results of the study. Although if the total sample size is forced to be quite small, the pilot study results can be included in the full study. The pilot helps to refine the data collection plans with respect to both content and the procedures to be followed. It also provides a trial run for the questionnaire in the sense that it identifies ambiguous questions, testing the technique that was used to collect the data, measuring the effectiveness of the respondent etc., getting the bugs out so to speak. Ethical Consideration The ethical consideration of any research must include the ability to assure that the rights of all individuals involved are adhered to . We see ethics as a question of morality, of doing the right thing. Respondents to this questionnaire must be treated with dignity and in a just way. Misconduct happens easily in research and must be guarded against. Questions should not be misleading and respondents must understand their rights when it comes to answering and any information given must be treated with the strictest of confidence (Stein, Elliott, 2009)l. Reliability and Validity Validity refers to the degree to which a study accurately reflects or assess the specific concept that the researcher is attempting to measure while reliability is concerned with accuracy. Validity is concerned with the study’s success at measuring what was set out to measure (OSU.org). Researchers should be concerned with both external and internal validity. External is the extent to which the information is transferable. Internal is the rigor with which the study is conducted, as well as the extent to which the designer has taken into account alternative explanations of all causal relationships. Data Analysis Data collection for cases will rely on the evidence collected from the questionnaires. This data will be collected from each questionnaire as the answers to the questions are rated and recorded. The questionnaires will be sent to the homes of the participants with a letter stating why there is a need for the information and requesting that they return it in the stamped envelope that has been retuned. It is understood that there are times when this data is not sufficient due to the lack of participation in answering a questionnaire but it is believed that the survey questions have been generated in such a way that it should take little time, in hopes of receiving a good response. Limitiations The data will be limited by the number of responses that are received and then again by the number of responses that are done within the instructions. There are also some limitations as to what data is acceptable but it is hoped that the early screening and exclusion questions are enough to prevent many limitations in the data. Benefits of the study As discussed in the literature, there are many more patients with intellectual disabilities than there once were. These limitations cause perceptions by the parents of these adults that may or may not be true. There are also care issues that are generated because of both the perceptions of the parents and the perception of the staff that care for them. These perceptions may lead to misunderstanding that limits care both as inpatients and as seeking outpatients (Lennox, Taylor, Bain, 2007). This study will allow for an understanding to take place of what drives the perceptions that over time decrease the adequacy of care that this group of patients receives. . Resources Bartlett, J., Kolrelik, J., and Higgins, G. 2009. Organizational research: determining appropriate sample size in survey research. Information Technology Learning and Performance Journal. 19(1). Chitty , K, and Black, B. 2007. Professional Nursing Concepts and Challenges. 5th ed. Saunders. Elsivier: Boston. Cooper S., Melville C., Morrison J. 2004. People with intellectual disabilities. BMJ. 329. 414 415. Cornwell K. 2004. People with intellectual disabilities: people registered disabled with learning difficulties tend to fall through the net. BMJ 329. 917. Lennox N., Bain C., Rey-Conde T. et.al. 2007. Effects of a comprehensive health assessment programme for Australian adults with intellectual disability, a cluster randomized trial. Int. J. Epidemiol. 36. 139-146. McEwen, M. & Wills, E. 2007. Theoretical Basis for Nursing. 2nd ed. Lippincott Williams & Wilkins. Philadelphia. Mitchell, J. Kemp, B. Special feature compliance with multiple treatment recommendation by old adults and disabilities. Topics in Geriatric Rehabilitation.15(4) 77-88. Morgan, C., Baxter, H. & Kerr, M. Prevalence of epilepsy and associated health service utilization and mortality among patients with intellectual disability. American Association on Intellectual and Development Disabilities. 108(5) 293-300. Smiley E., Cooper S. Finlayson J. 2007. Incidence and predictors of mental ill-health in adults with intellectual disabilities: Prospective study. BR. J. Psychiatry 191: 313-319. Stein J. & Elliott, D. The Ethics of Scientific Research. Harvard School of Medicine. Sowney M., & Barr O. 2008. Caring for adults with intellectual disabilities: perceived challenges for nurses in accident and emergency units. van Schrojenstein Lantman-de Valk, H., Walsh, P. 2008. Managing health problems in people with intellectual disabilities. BMJ 337. 2507. OSU.org. University of Colorado Writing Center. Young A., Chesson R., Wilson A. 2007. People with learning disabilities, careers and care workers awareness of health risks and implications for primary care. Family Practice. 24. 576-584. Appendix A Draft Letter Ethics and Governance Approval NHS Research South East London SE London Strategic Health Authority 1 Lower Marsh, Waterloo, SE1 7NT 4/29/2010 Dear To fulfill a course requirement as a final year BSc Nursing and Social Work student of the University, I am undertaking a research project about The perspective of both the parents and the staff in the experiences in hospitals with the adults suffering from intellectual disabilities. Specifically, the purpose of the study is to measure the perceptions of these parents to what happens to their adult children in the hospital. This research is not funded and is under the supervision of a senior lecturer from the Research in Practice unit by the name The research will conform to ethical requirements for research dealing with families and patients. Therefore this proposed study will take into account issues of confidentiality and anonymity, information collected will be handled with strict adherence to the principles of the Data Protection Act. Attached please find research proposal outlining the research process under specific headings. It covers the title, abstract, introduction, literature review, aim and objectives, research design, and methodology, sampling, research instruments used, piloting stage, procedures, ethical considerations, data analysis, and benefits of the study to be done. It also cover the reliability and validity points of the study. You will also note an attached copy of the survey tool to be used as well as the cover letter that will be used. This study will provide information on how parents of adults with intellectual disabilities perceive a hospital stay. It will also provide information on how staff perceive this care. The information gathered from this study will give a basis to understand why this group of people do not seek care as soon as they should and why there are disparities in this care. Your cooperation is counted on. If any further assistance or information is needed please feel free to contact me at the above address. Thank You Appendix B COVERING LETTER TO PARTICIPANTS Faculty of Health and Social Care London South Bank University London SE1OAA Date Dear I am a final year student of the joint BSc Nursing and Social Work course at the above University. I am undertaking the study of the what the parents of adults with intellectual disabilities think about what happens during a hospitalization. This will also include the study of what the caring staff think about what happens. The research has been approved by the local ethics committee at SE London Strategic Health Authority. You have been randomly selected for inclusion in this study because of your recent hospitalization with your adult child. The method that is used for this survey is the first class mailing of the postal survey which does not pose any mental or psychological risk to you or your family. The enclosed questionnaire is created in such a way to seek only information that is pertinent to the study. Any information that is gathered through this study will be kept in the strictest of confidence. You will note there are no personal details noted n the questionnaire and a stamped addressed envelope has been included to return the survey directly to me at the University. There is no way to trace the responses to you or anyone else and no one will see the results but me. The information will be tabulated and included in a study result meant to improve the inpatient healthcare response for adult children with disabilities. I would much appreciate it if you would complete and return the enclosed questionnaire to the stamped address on the reply envelope as soon as possible. Your consent will be assumed if you complete and return the questionnaire. Please remember that your response is entirely voluntary. If you would like more information about this study you are welcome to call me at London South Bank University. I look forward to the receipt of your questionnaire and thank you in advance for your participation in this research. Yours sincerely Appendix C The perspective of both the parents and the staff in the experiences in hospitals with the adults suffering from intellectual disabilities. Completing the Questionnaire Please answer by placing a tick in one or more of the boxes as instructed at each question All of the answers given will be kept in the strictest of confidence as stated in the Data Protection Act of 1998. It should not take long to complete the questionnaire and when complete please place it in the stamped addressed envelope as soon as possible. THANK YOU FOR YOUR PARTICIPATION SECTION A Please tick one box only Q(1) Are you the parent of an adult child with intellectual disabilities? Yes No Q(2) In general were you satisfied with the treatment received in the hospital? Yes No Q(3) Did you feel that the staff understood your childs care needs? Yes No Q(4) Does the fact that there is an intellectual disability determine the care that is given? Yes No Q(5) Do you feel that staff were uncomfortable around your adult child? Yes No SECTION B Please circle the most appropriate answer Q (6) This has been 1. First hospitalization 2. Second hospitalization 3. Third or greater hospitalization Q (7) You and your child come for care 1. Only when it is absolutely necessary 2. We see a primary provider regularly 3. We avoid it as long as possible Q (8) I was upset with the care received because 1. NA 2. It was related to my adult child having an intellectual disability 3. The inability of the staff to understand special needs 4. Not the staff but other hospital issues Q (9) You would choose to improve care through 1. Education of staff 2. Overall hospital education 3. Special department for care 4. Other Thank you very much for completing this short questionnaire. Again this information will not be shared with anyone and the hope is for this research to improve the care that adult children with intellectual disabilities receive in the hospital. Read More