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Jan. 13th, 2007 @ 12:55 pm I'm PUBLISHED!!!!!!!!!!
Current Mood: accomplished
Just found out that my short piece was published in the Cleveland Clinic Alumni Connection.  You can see my article by following this link: http://www.clevelandclinic.org/education/alumni/pdfs/VolXXVII_3_06.pdf it is on  page 15.  I am hoping to still work on my large piece and see where I can take it!  No matter what, this was a great experience to have and really opened my eyes to a new division that I believe plays a large role in the health care setting.

Thanks for reading!
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Aug. 2nd, 2006 @ 02:41 pm Ending my Internship but not My Experience

In the last few weeks of my internship I attended another journal club, this one containing the article I had found during my research. Moreover, I worked on a shorter piece to put in the Cleveland Clinic Alumni Connection magazine in the Controversies in Caring section, while also working on my longer article to hopefully submit to some other journals. I will update this journal if anything else happens and to links of the article if it gets published!

The journal article which I had found through my research brought up a lot of research ethics questions. Particularly how to gain consent in young children – adolescents if their parents are ill and have a bias of not giving consent.

Meadus, R. J., and B. Johnson. "The Experience of being an Adolescent Child of a Parent Who has a Mood Disorder." Journal of psychiatric and mental health nursing 7.5 (2000; 2000): 383-90.

This article indicates the experiences of adolescent children of depressed parents by recording three children’s experiences. There were three themes that emerged from these adolescent’s including: “serious disruption in the family due to the unavailability of the ill parent, which evoked feelings of an intense sense of responsibility, fear and loss” leading the child taking on parenting roles, they had a “lack of knowledge and understanding , leading to frustration and fears that their parents may not get better, and that they themselves may become ill like their parents” which made them look for information to understand, and lastly the effort and attempts to cope with the experience (383).  When a child is ill, the family, especially the parents are involved, however when the parent is ill, children are neglected from care even though they are at risk for certain problems including depression (383), thus it may become important to incorporate the child in the treatment of depression. It then gives dialect the three 17-year old female children shared on the experience of having a parent suffering depression. It also voices that more help is needed to these young children by nurses for instance involving a family-focused care, school personnel/counselors, and the development of support groups. This study also calls for longitudinal studies of the same to also help identify what makes a child ‘resilient’ vs. vulnerable to the risks.

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Jul. 26th, 2006 @ 10:31 am Mid-July Work

These weeks I have continued working on my review of literature articles of both young care givers and children of depressed parents.


 


This week’s journal club used the following articles:


Kim, S. Y., et al. "What do People at Risk for Alzheimer Disease Think about Surrogate Consent for Research?" Neurology 65.9 (2005): 1395-401.


 


Kim, Scott Y. H., et al. "Proxy and Surrogate Consent in Geriatric Neuropsychiatric Research: Update and Recommendations." American Journal of Psychiatry 161.5 (2004; 2004): 797-806.


These articles were interesting to think about, as they were things I had never really considered. They discussed incapable decision makers such as in Alzheimer’s Disease if a proxy or surrogate should be able to make decisions involving their participation in research. They also outlined the interesting ethical questions involving including these patients in research, and how legally there really are no clear guidelines that decipher what can and can not be done, and it is really up to institutional review boards to make decisions. They also considered advance directives, which prior to incapacity to make decisions a person would consent, and if these were able to be used in research then. Interesting aspects of advance directives are they may not cover each situation that could arise, and also there need to be guidelines and a support system to watch the person in research if they get worse in order to withdrawal them and also if the risks-benefits change to re-evaluate whether they should still be in the study or not. It is very hard to decide if an incompetent person should be allowed to be studied in this kind of research especially when there may be no therapeutic value to the patient and risks are associated with it.

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Jun. 30th, 2006 @ 07:33 pm Finishing up June....
This is a rather large entry – it outlines the articles I had read for journal club and just some interesting things to think about -
The journal club this week was about articles I had previously read and found interesting about the decisional capacity of those severely depressed patients involving electroconvulsive therapy. The articles I had read for this journal club included:

Appelbaum, P.S., T. Grisso, E. Frank, S. O’Donnell and D.J. Kupfer. 1999. Competence of depressed patients for consent to research. Am J Psychiatry 156:1380-1384.
Depression does in fact impact the concentration, information process, and reasoning; however to what extent? The main question which arose throughout this article was do psychiatric patients truly have the capacity needed to consent to research? This is a new emerging topic that has been found in: popular media, professional literature, administrative agencies, & courts. Questions that arose from the article worth contemplating: are these patients more susceptible to succumbing to research (ie. Does depression make them more apt to research due to a possible decrease in motivation of protecting one’s self)? Also, to what point, concerning strict rules are helping these patients, and as to what extent are they beginning to hinder research and findings? The problem that needs first to be resolved is that there is no clear cut way to evaluate decision making capacities. Moreover, this study was very small, a group of 26 females who measured of a moderate intensity of severe depression. Psychopharmacy treatment was not used in this study and the women did not need hospitalization. Thus an important concern is what about the decision making of those who are hospitalized, on drugs, or severely depressed?

Lapid, M. I., T. A. Rummans, K. L. Poole, S. Pankratz, M. S. Maurer, K. G. Rasmussen, K. L. Philbrick and P. S. Appelbaum. 2003. Decisional capacity of severely depressed patients requiring electroconvulsive therapy. The Journal of ECT 19:67-72.
Electroconvulsive therapy is used with severely depressed patients as treatment. With the patient being severely depressed, are they still able to make the decision to proceed with electroconvulsive therapy? The person must be competent to decide, after weighing the risks and benefits if the treatment is appropriate for them. As there is “no widely accepted standardized approach to assess the decisional capacity of people to accept of refuse treatment” (67) it is even harder to make standards and evaluate if a patient is truly competent to make a decision. In general, psychiatric disorders, such as depression “typically affect emotion, cognition, and motivation and potentially impair the overall decision making capacity of people” (68). The patients were given a standard education including the reasons for electroconvulsive therapy and a videotape. The experimental portion received extra intervention with a psychiatrist with a specific session which had frequently asked questions and answers regarding the electroconvulsive therapy. It was found that the severely depressed were capable to make decisions. There was also improvement noted in testing by the education being given to the patients, but however, the experimental extra education did not necessarily equate to better decision making scores. How accurate though is the MacCAT-T test as some of the tests lasted 15 minutes but could range up to 1.5 hours in the interview? (71).

Wolpe, P.R. and A. Caplan. 2001. Ethical issues in research and treatment of patients with mood disorders. Treatment-resistant mood disorders. Pages 504-514.
This article outlined the main issues that patients with mood disorders present. Depressed patients often times are “indecisive or resistant to treatment, which raises the dilemma of when to consider such resistance a reasonable refusal of consent and when the resistance is a product of the illness itself” (504). It is necessary for the patients to understand the risks and benefits of the treatment and alternative treatments associated with their disorder prior to giving consent. As consent has become a legal issue, competence must be determined prior to making a decision and this decision must not be coerced. The capacity to give consent is difficult to measure, as there is neither clear nor acceptable test in existence. Current standards that are utilized by the courts include: “the ability to communicate a choice, the ability to understand information relevant to the decision about treatment, the ability to appreciate the significance for one’s own situation of the information disclosed about the illness and possible treatments, and the ability to manipulate the information rationally” (508). Those who suffer from depression also have judgment problems, as they focus on negative feedback and believe treatments will not work for them due to their feelings of hopelessness (509). There is also the question of morality of “washout studies”, as a person will be taken off the medication and thus susceptible to the suffering if they relapse, but on the other hand, a washout study insist that with care will not give the patient anymore risk of relapse and due to the side-effects of drugs a drug-free period is more beneficial if it works for the patient. Moreover, in terms of placebo testing, is it ethical to deny a patient treatment? Many conquer this issue by insisting placebo testing only be used when absolutely necessary and that the patient know before testing that if given placebo the risks with it and also having some form of therapeutic benefit.

Questions and Concerns which arose:
--Depression does in fact impact the concentration, information process, and reasoning; however to what extent?
--Do psychiatric patients truly have the capacity needed to consent to research?
--Are these patients more susceptible to succumbing to research – by this I mean does depression make them more apt to research due to a possible decrease in motivation of protecting one’s self?
--Another article questioned if because depressed patients often times are “indecisive or resistant to treatment, which raises the dilemma of when to consider such resistance a reasonable refusal of consent and when the resistance is a product of the illness itself” (Wolpe 504)?
--To what extent, concerning strict rules are helping these patients, and as to what extent are they beginning to hinder research and findings?
--In addition, depression has many symptoms that include pessimism regarding the self, world, future, sadness, diminished thinking/concentration etc… and these symptoms of depression may play a role in deciding if they want to refuse treatment or not – so what if a patient is deemed competent but still refuses treatment, but maybe it is due to the fact the patient does not care about the outcome due to their symptoms? Emotional/motivational factors – do they play a role also in competence?
--Another large problem that needs to be resolved is finding a clear cut standardized method of ascertaining if someone is at the capacity to make decisions (Am J 67).
--Currently – using MacArthur Competence Assessment Tool for Treatment instrument, and the problems that arose with it were that some people took 15 minutes others up to an hour and a half (Am J 71). Also, the scores after education were in the close to maximum range (J Ger 44), and the articles state it is possibly due to the ceiling effect, but what if the standard for making a decision is too low? How do you gauge then when a person is competent?
--Capacity to make a decision as outlined by the courts: “the ability to communicate a choice, the ability to understand information relevant to the decision about treatment, the ability to appreciate the significance for one’s own situation of the information disclosed about the illness and possible treatments, and the ability to manipulate the information rationally” (Wolpe 508). What does this mean for the testing and how do you measure this?

Problems within the Lapid articles:
--The “Decisional Capacity of Depressed Elderly to Consent to Electroconvulsive Therapy” article was found in both the Journal of Geriatric Psychology and Neurology and the Journal of ECT. In the Geriatric article, the authors are at first honest that they did not begin this study for geriatric vs. nongeriatric effects, but only after the study was completed realize this and then review the results (43 Intro then Data Analysis). How valid are their results if the study was not aimed at geriatric patients and the sample size was quite small?

The journal club discussion this week was interesting, as we discussed the various approaches specifically of the two Lapid articles and how the approach to even writing/presenting the studies may not have been honorable or appropriate, or even misgiving at times. The articles were interesting to read, and also it was interesting to read the editorial letters to the Journal of ECT and whether family should be present, and the one letter attributed the calming help of the husband of a patient when present, but that they had feared the wife would not consent without the husband – which is the husband calming her fears or acting more coercively? In addition, the test standard used was not properly managed it seems, as they were tested and then retested with the same test – what about knowing the answer to the questions because they had just been asked it days earlier? A control would seem to be necessary where someone was tested and then retested without education to see the level of improvement in testing, as they would know what answers were wanted.
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Jun. 24th, 2006 @ 06:21 pm Continuing on in researching...

This week, I worked on my introduction and outline of my paper as well as continuing to research and annotate numerous sources.

This week’s articles for journal club were:

Illes, J., et al. "Ethics. Incidental Findings in Brain Imaging Research." Science 311.5762 (2006): 783-4.

-and-

Kirschen, M. P., A. Jaworska, and J. Illes. "Subjects' Expectations in Neuroimaging Research." Journal of Magnetic Resonance Imaging 23.2 (2006): 205-9.

This was an interesting topic about conducting research and who hold obligations and responsibilities in research that I had not considered previously. It was first interesting the different language used in the medical vs. nonmedical setting of one study. Also, it was interesting that the consent forms gave false reassurance/confidence to those participating in the study as they expected any ‘incidental findings’ to be revealed to them, not understanding completely that the research testing was not a complete medical diagnostic test. An ‘incidental finding’ referred to anything the researchers were not looking for ranging from serious tumors to malformations to benign forms. Another interesting aspect was if neuroradiologists were to be a part of the studies or not, and if they were not looking at the scans, then those who did were not qualified to look for other things and could not tell if something was life threatening or not, but the cost to have a neuroradiologist on staff at certain places is too much that it would hinder research. It was an interesting debate over what researchers, physicians, etc. are compelled or obligated to reveal of the findings and that most physicians would feel compelled to reveal to a subject incidental findings and direct them to other physicians to have more comprehensive scans completed. However, who would pay for this follow up?, especially where incidental findings that are meaningless are at such a high rate? Also, is it a subjects’ right to ask not to know about any findings that are found even if they are life threatening? And if so, is it fair to have an exclusion criteria for these subjects from the study so the physicians could tell then anyone who they find things for. Moreover, are studies where de-identification occurs just side-stepping the whole responsibility aspect by not even knowing if a life threatening tumor or such emerges whom it belongs to? All in all, an interesting topic of research ethics, specifically in brain imaging research.

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Jun. 16th, 2006 @ 06:19 pm This Past Week
On my way to my final project! I wrote my abstract and have started on the Introduction and have an idea of the headings of my paper. Still have a bunch of articles to get through and annotate, but its nice to know I have an exact topic within sight!
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Jun. 10th, 2006 @ 06:16 pm Continuing my Research...

Week of June 5th 2006:  This week, my main goal is to read through and create an annotated bibliography of the articles I have found about: young caregivers and children of affectively ill parents. I also started writing an abstract for my project in order to put into words exactly where I intend on going. Also this week, a journal club has started here where a group of students and other faculty meet to discuss an article of interest. This week’s article:


Cranford, R. "Facts, Lies, and Videotapes: The Permanent Vegetative State and the Sad Case of Terri Schiavo." Journal of Law, Medicine & Ethics 33.2 (2005): 363-71.


This was an interesting article that brought up comments about the long 10 year legal battle while a life was held in limbo along with who truly suffers the most? In response to that question, I do not know who is suffering more, her, her husband, her parents and siblings, or society as a whole. Interesting notions were brought up about the choice in the title of Permanent Vegetative State vs. Persistent, and how medically it is hard to say anything is permanent when only one instance is necessary to call into question a ‘fact’. Also, it was interesting to debate whether or not the parents or husband should have just given in for Terri or if they had become too committed just for the fight. In addition, it amazed me that certain ‘expert witnesses’ provided misled testimony and would fill the Schindler’s (Terri’s family) with hope that was not associated with any evidence. Someone also brought up the fact that this case gained the coverage it did due to the initial decisions to provide care, while in many instances in the ER or ICU many patients undergo similar cases but the families or guardians make decisions not to be given respiration devices or feeding tubes and thus they pass away, but that this decision was publicized and more difficult as it was the removal of such care. This truly is a hard decision to make, as she had been living in this state over 10  years yet her family wanted her kept alive as they were clinging to hopes, possibly falsely stated from their expert witnesses that did not even give her a full neurological exam.

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May. 31st, 2006 @ 06:52 pm This past week

Met with a Pediatric Clinical Psychologist and this meeting helped to focus my topic and open my idea to realizing children at young ages exhibit different developmental stages that should be taken into consideration.

I am still working on my topic about the role of children in parent’s depression. The research I have found for ‘young carers’ in general for any illness is surprising, as the United States just did the first study of children as caregivers in September of 2005. I found this extremely interesting, as other countries have been studying young caregivers for a considerable amount of time.

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May. 22nd, 2006 @ 05:52 pm The Start of a New Week
Current Mood: anxiousanxious
May 22nd 2006: Today I worked at the Lerner Institute library to learn about their web databases, and I found a new database to find more articles. Currently I am working on refining my search to a specific topic that ‘bothers’ me. The case I attended a hearing on last week was rather interesting as many doctors and ethicists of a variety of backgrounds met to discuss what they would have done in the given scenario. Pending approval will be the case scenario and the questions which arose.
Also, today, I have potentially narrowed down my topic to exactly what I wish to consider for research: There is little information regarding a child/adolescent’s role in care giving or even rights or obligations to a parent with moderate to severe depression. However, children and adolescents have been shown as caretakers for other illnesses, and thus it may be necessary to become aware of these circumstances and be able to accommodate for such. Hopefully this will send me in a more specific direction.
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May. 16th, 2006 @ 06:11 pm Day #2
Current Location: @ home
 Research…Research…Research: I kept looking for more articles and journals that interested me. Found a few interesting topics today: informed consent for mentally ill – when are they able to make decisions for or against treatment, and when are they incapable OR a family’s role in decision making involving treatment for depression. I attended an in-depth discussion about a case study that was presented by the bioethics department here where a bioethicist was called in to make a consultation on what should be done. It was really interesting to hear the viewpoints of other doctors and realize how difficult it is to make life-changing decisions in a patient’s life that is incapable of making their own decisions. 
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