How Staff Can Improve Patient Participation - Book Report/Review Example

Detailed Critical Evaluation of a Published Research Report Introduction Tutton's (2005) study had two objectives: To understand what participationmeans to older people in a specific hospital To explore how staff can improve patient participation. The key ingredients of collaboration and change were critical to the study. In this report I will take a critical look at the report and evaluate aspects of it. This study was done on frail patients and Young (2003) defines "[f]railty [] as the presence of three or more of the following criteria: unplanned weight loss (10 lbs in last year), weakness, poor endurance and energy, slowness, and low activity." This study was done in an institution with patients over 60 years and a majority of them over 75 years old. 2 Comment on report The sub-topics that follow are as they appear in the report. The approach has been to comment directly under each heading and then later cover general comments and conclusion. 2.1 Design The study was well suited to the use of action research methodology since it was attempting to bring about change (action) in a system with the collaboration of participants in the system. A formal definition of action research is given by Gilmore et al (1986) as: Action research...aims to contribute both to the practical concerns of people in an immediate problematic situation and to further the goals of social science simultaneously. Thus, there is a dual commitment in action research to study a system and concurrently to collaborate with members of the system in changing it in what is together regarded as a desirable direction. Accomplishing this twin goal requires the active collaboration of researcher and client, and thus it stresses the importance of co-learning as a primary aspect of the research process. (Cited by O'Brien, 1998). It is a pity that the study was confined into one cycle. At least two cycles should have been done in order for the outcomes to become more validated. A single pass that involves only a few members of staff and patients might not initiate sustainable change in the system. A second cycle would have reinforced the findings of first cycle and given momentum to the change processes. Another area that touches on collaboration is the fact that no one from the hospital staff or patients was involved in the design planning phase. The failure to get a co-researcher1 which is mentioned in the report undermines the process since it then appears to be an external intervention. This work could have been approached using a Case Study methodology and useful results could have been obtained. 2.2 Participants Only those who were interested among staff became reflective participants. They had their own reasons for 'volunteering' which was "an interest in developing their practice" (Tutton, 2005). This raises the difficulty of generalising their views since they are a self-selected group. They clearly had ulterior motives and two of them went on to present "three different papers at conferences" (Tutton, 2005)2. Although active research does not depend on statistical sampling there is a question of representativity of the results for such a sample. It is a fact that there was a problem with getting patients to participate since most of them were too frail. This means that those who participated may not be representative of all the patients since they come from a minority group of patients with capacity to communicate. 2.3 Data Collection In the data collection the questions asked are vague. The investigator states that she let the interviewees control the discussion. This raises the question whether they would wilfully disclose information that is painful or embarrassing to them. The focus groups consisted of three people and we are not told how many different focus groups were involved. Also we are not told what the composition of focus group was. Did it mix staff and patients or were there different focus groups for each category. The fact that there were more staff (13) than patients (9) who participated in this study is borne out by the overall bias of the results towards staff views. 2.4 Ethical Considerations The Belmont Report (1979) gives ethical guidelines for research involving people. Basically these principles involve are Beneficence, Justice and Respect for Persons. Respect of persons with regard to patients appears problematic. The Belmont Report (1979) states that "persons with diminished autonomy are entitled to protection". Patients obviously have diminished responsibility and as demonstrated in this report where a patient says to the caregiver "You know better" (Tutton, 2005). It is not clear how frail patients were made to understand what they were consenting to because there is no mention of this being clarified individually to patients. The principle of justice demands fairness in selection of subjects and when patient participants are selected according to their capacity to communicate and the study shows that those are in a minority then selection cannot be seen to be fair. 2.5 Findings The researcher finds the necessity for a biographical booklet to keep background information about a patient and any communications with the patient. Disclosure of private information should not be mandatory otherwise it becomes an invasion of a patient's privacy. The researcher should state clearly that the information is gathered with informed consent although with diminished capacity of most patients one wonders how the information can be gathered without infringement of the patient's rights. The researcher has done good work in terms of main themes picked out in the first data gathering cycle and subsequent categorisation of responses. 2.6 Facilitation This section raises some power issues between patients and nurses. That patients communicate with nurses with "What do you want me to do now" or "If that's what you want dear" or "You know better" indicates the skewed power relationship. In such a case subtle coercion cannot be ruled out. In terms of analysis of themes again the research has done a good point of identifying and classifying the response. 2.7 Partnership The related incident where a rule on compulsory use of compression bandages displays the disconnect between the change program being advocated by the researcher and the behaviour of those in authority. It clearly shows that whoever issued the rule had not consulted the nurse or the patients and this person had considerable authority. The researcher has done well to mask identity of person. The name given to Betty is assumed to be a pseudonym otherwise the researcher will have breached patient privacy. Therefore if a pseudonym is being used the researcher should make a note to state that as a fact. 2.8 Understanding the person In this action it seems one-sided view. We get nothing from the patients themselves. It is hard therefore to believe that we are getting the right picture. Winter (1989) clearly states the six principles of active research to include reflexive critique, dialectical critique, collaborative resource, risk, plural structure and theory-practice-transformation. In two of these (dialectical critique and plural structure) principles consensus is emphasised. It is therefore not in the spirit of these principles to present views from one side. It leaves the research unbalanced. 2.9 Emotional work The quotation attributed to Patient 2a illustrates persistence of a skewed power relationship. They're very good, and during the night there may be only so many staff on, and you may have to wait a little while, say, for me to rum from one side to the other because of my bed sores, but I have patience and there are more serious patients than me to be seen to. (Patient 2a) In this comment the patient is not stating her preference but reflecting a fortitude that accepts delayed relief due to conditions in the hospital. Is the waiting period reasonable Are there indications of under-staffing Does she take part in the decision of who has to be attended and how much delay one gets before being attended Absolutely not! Is there no hint of fear of criticising lest at night the patient may be victimised I feel there is a strong possibility this happening. "However, there was a strong feeling that accepting things was the best way to cope with dependency and hospitalisation." I think the researcher missed a point of interrogating the adequacy of the system to meet patients' requirements and expectations. Patients should be allowed to state what their preferences are in the way they are treated. 2.10 Discussion I like the diagrammatic visualisation of issues given. The core contextual issues of are indicated to be facilitation, partnering, emotional work and understanding the person. I find that psycho-religious issues are missing. We understand that at the point of death these are very powerful but the research has not captured that part. Cassel and Foley (1999) recommend that it is important to "[a]ssess and manage psychological, social, and spiritual/religious problems." Indeed in the report it is stated that "[b]oth patients and staff also experienced strong negative emotions about life and death on the ward."3 It is therefore surprising that the psycho-religious considerations are entirely missing. 2.11 Limitations of study There are basically three limitations acknowledged by the author. 1) Limitation on patient selection for participation due to frailty of most patients 2) That the exercise was done by an outsider without an "insider" collaborator 3) Lack of organisational support for the research after departure of ward leader. These are valid observations and as noted earlier, the lack of strong patient views about participation process is regrettable because it reduces the credibility of research efforts in terms of meeting patient needs. 2.12 Conclusion This study by and large is focused on caregivers more than the patients. It comes as an interesting point when the author notes that "Patients, although aware that they were part of a group process and grateful for their care, did express a need to be listened to and for their knowledge of their own bodies to be accepted as valid.4" There is no hint of such sentiment in the report proper and it goes to show the self-censorship that comes when one side (staff) is dominant in a research of this nature. 3 Evaluation of report This report raises interesting issues pertaining to participation process for frail patients. Although it started as a balanced two objective approach it ended up being one sided. This study in my opinion failed to cater for psycho-religious requirements of the patients. It is expected that these are important for people who are essentially terminally ill. Advanced Directives (2001b) in a similar situation observed that: When we understand our patients' values, we can more readily decide what they would want should catastrophic illness befall then, and cause them to lose capacity for medical decision making. In taking a values history, we need to understand what makes life worth living for our patients and under what circumstances (if any), would they no longer value living." Patients' values and beliefs are very important and as a matter of course the hospital should be able to note them. Sarkisian et al (2001) also report that "Older adults differed from physicians by describing five mental-health related domains: anxiety, emotional-well-being, happiness, sleep, and length of life/death." It is important to understand the patients' mental and emotional states and what drives them. It is further acknowledged that "Their psychological, mental health, and rehabilitation needs are often ignored" (Department of Health, 2001). The failure by frail patients to communicate should have been circumvented by use of proxies or surrogates. Faced with a similar situation Advanced Directives (2001a) realised that "identifying all potential surrogates early in the process, and speaking with them together" was important. Similarly for very frail patients the researcher could have looked for a patient's surrogate and use them to participate in the communication process on behalf of the patient. There is no a priori reason to treat patients as a homogenous group. Advanced Directives (2001c) "found that participants differ significantly in their health care wishes and how they choose to express them." The data analysis component is strong. The participation themes as presented in report provide a framework that can be used by further studies. Further work on exploration and elaboration of these themes will be a welcome addition to this work. 4 Impact The research will have limited impact in the organisation studied. This is due to the fact that there is no leadership support for the program. The report has raised awareness of the plight of the frail patients and there should be follow-up research work to solve those problems. In fact there must be a follow-up second cycle active research. The usability of the results in another similar institution is limited due to minimal participation by target patients. The same methodology can be used in other institutions with refinements to introduce participation by frail patients in similar institutions. The thematic structure uncovered should aid other researchers in similar organisations. 5 Alternative research design As explained earlier the Case Study methodology could be used for this research. Yin (1984) defines the case study research method as "an empirical inquiry that investigates a contemporary phenomenon within its real-life context; when the boundaries between phenomenon and context are not clearly evident" (cited by Soy, 1997). Over the years Case Study has had an up and down history with the main objection being that one cannot make generalisation. Trellis (1997) observes that one "salient point in the characteristic that case studies possess [is that] [t]hey give a voice to the powerless and voiceless." This is precisely what is required in a study of this nature where the frail are not able to clearly articulate their wishes. An exploratory preliminary study could have been done to enable the researcher to understand the issues. Yin (1994) emphasizes the need for a structured approach even in exploratory studies (cited by Trellis, 1997). The exploratory phase would then be followed by a descriptive phase where causal effects are explored. Yin (1994) provided a framework for a case study methodology as follows: Overview of the project (project objectives and case study issues) Field procedures (credentials and access to sites) Questions (specific questions that the investigator must keep in mind during data collection) Guide for the report (outline, format for the narrative) (cited by Trellis, 1997) 6 Conclusion The author has tackled a difficult problem. The weakness of the work lies in the one sidedness of the findings. The thematic structure uncovered should remain valid and be used in further researches on similar organisation. Active research is a valid methodology in conducting such research. The researcher has to be careful not to be influenced by convenience in choosing participants. There is need for an inside collaborator to work with an external research as an equal partner. It is important to maintain balance between staff considerations and patients' views. The researcher has not taken cognisance of power relationship between patients and nurses. This has the effect of reducing patients' openness on issues. As a result the report appears biased in favour of staff. There is no justification for treating patients as a homogenous group. Different races have different expectations and the study should reflect that. References Advance Directives (2001a) Communicating with Families and Surrogates [Online]. Available at: http://classes.kumc.edu/som/aamc/icm851/adv_directives/Terms_communicating.htm [Accessed January 25, 2006] Advance Directives (2001b). Advanced Directive Discussion [Online] Available at: http://classes.kumc.edu/som/aamc/icm851/adv_directives/Terms_AdvDirDiscussion.htm [Accessed January 25, 2006] Advance Directives (2001c) Terms [Online]. Available at: http://classes.kumc.edu/som/aamc/icm851/adv_directives/Terms_SelectIssues.htm [Accessed January 25, 2006]. Cassel, C.K and Foley, K.M (1999). Principles for Care of Patients at the End of Life: An Emerging Consensus among the Specialties of Medicine [Online]. Available at: http://www.milbank.org/endoflife/index.html [Accessed January 25, 2006] Department of Health (2001). Caring for Older People: A Nursing Priority Integrating knowledge, practice and values. Report by the Nursing and Midwifery Advisory Committee, March 2001. [Online]. Available at: http://www.advisorybodies.doh.gov.uk/snmac/caringforolderpeople.pdf [Accessed January 26, 2006] Gilmore, T., Krantz, J. and Ramirez, R. (1986). Action Based Modes of Inquiry and the Host-Researcher Relationship, Consultation 5.3 (Fall 1986). p.161. Madison Metropolitan School District (n.d.) What is Action Research [Online] Available at: http://www.madison.k12.wi.us/sod/car/carisandisnot.html [Available January 25, 2006] North Central Regional Educational Laboratory (n.d.). What is action research [Online]. Available at: http://www.ncrel.org/sdrs/areas/issues/envrnmnt/drugfree/sa3act.htm [Accessed January 25, 2006] O'Brien, R. (2001). Um exame da abordagem metodolgica da pesquisa ao [An Overview of the Methodological Approach of Action Research]. In Roberto Richardson (Ed.), Teoria e Prtica da Pesquisa Ao [Theory and Practice of Action Research]. Joo Pessoa, Brazil: Universidade Federal da Paraba. (English version) Available: http://www.web.ca/robrien/papers/arfinal.html [Accessed January 26, 2006] Sarkisian C.A, Hays R.D., Berry S.H. and Mangione C.M. (2001). Expectations regarding aging among older adults and physicians who care for older adults. [Online] Med Care. 2001 Sep;39(9):1025-36. Available at: http://www.ncbi.nlm.nih.gov/entrez/query.fcgicmd=Retrieve&db=PubMed&list_uids=11502959&dopt=Abstract [Accessed January 25, 2006] Soy, S.K. (1997). The Case Study as a Research Method [Online]. Available at: http://www.ischool.utexas.edu/ssoy/usesusers/l391d1b.htm [Accessed January 26, 2006] Tellis, W.(1997). Introduction to Case Study [Online]. The Qualitative Report, Volume 3, Number 2, July, 1997. Available at: http://www.nova.edu/ssss/QR/QR3-2/tellis1.html [Accessed on January 26, 2006] The Belmont Report (1979) Ethical Principles and Guidelines for the Protection of Human Subjects of Research [Online] The National Commission for the Protection of Human Subjects of Biomedical and Behavioural Research, April 18, 1979. Available from: http://www.hhs.gov/ohrp/humansubjects/guidance/belmont.htm#xselect [Accessed January 25, 2006] Tutton, E.M.M. (2005). Issues And Innovations In Nursing Practice: Patient participation on a ward for frail older people. Blackwell Publishing Ltd, Journal of Advanced Nursing, 50(2), 143-152 Winter, R. (1989) Learning From Experience: Principles and Practice in Action-Research (Philadelphia: The Falmer Press, 1989) 43-67. Young, H.M. (2003). Challenges And Solutions For Care Of Frail Older Adults [Online]. Available at: http://www.ana.org/ojin/topic21/tpc21_4.htm [Accessed January 25, 2006] Read More