Informed consent with vulnerable populations

Well, the sun shined all of last week, and some people are saying it’s the only bit of “summer” we’ll get in Wales–I really hope that’s not the case! I love summer and I love swimming and spending time outside, but unfortunately I didn’t get to do much of that last week due to being busy with work and being ill. However, we did take a few drives in the country and spent Sunday afternoon beside a little pond in Carmarthen. It’s been funny to hear people discussing how “hot” it is, when it was only up to about 20 celsius/70 Fahrenheit! In the Midwest (where I’m from) we tend to get both extremes–fairly hot summers and fairly cold winters–so the climate here to me seems quite mild.

Last Wednesday I turned in my research proposal for ethical approval! I haven’t heard anything back on that yet but hopefully it gets approved so that I can get started on my recruitment and data collection! There was an impressive amount of forms to be filled out for that. The only thing I’m a bit worried about is whether the ethical review board will find my measures for dealing with issues of consent to be sufficient. As my research will involve interviewing people with dementia, I am faced with the issue as to whether people with cognitive impairment are capable of giving informed consent. When looking at this issue it’s important to remember that “informed consent” is two words for a reason. With any research population it’s important to make sure that the participants understand the research they are participating in, what it will be used for, and any potential consequences. This is the “informed” part, and it is just as important as the actual consent, meaning that you need to ensure that your participants do understand what they are signing when they sign their consent forms. There are mixed opinions regarding consent to research in people with dementia, but more recently researchers have begun to recognize the importance of doing research with people with dementia, as leaving this perspective out of the researcher could be doing even greater harm by limiting the insights we have into what it’s like to live with this condition. This is the perspective I have taken in my research proposal, and along with that I have emphasized the importance of consent as a process. This means that even once someone has signed their consent form, they still must agree to participate in every stage of the research, and if they change their minds they have the right to withdraw. With people with cognitive impairment it can be especially important to look for nonverbal cues that they are uncomfortable or tired, and to discuss these to ensure they are not being harmed and their consent to participation has not changed. One way I plan to incorporate the idea of consent as an ongoing process into my research project is by having my participants give signed consent on two occasions, once when they initially agree to participate and again on the day of their interview, to make sure they have not changed their minds in the time between these two dates. I feel confident that my methods and precautions will be sufficient to ensure that my participants are able to give informed consent, so hopefully my research does get approved, because I am quite antsy to get started!

I can’t believe I’ve been in Wales for 9 months now; the time has flown by! I’m done with lectures now and just have my dissertation due in the end of September. Our final set of essays was due last Wednesday, so in the days leading up to it I was spending every spare moment researching and writing essays. It’s been nice to have some time to breathe since then. I obviously have plenty to do towards my dissertation, but I really needed a break from reading policies and research non-stop. I’ve been assigned my dissertation advisor so I can finally start the whole process of ethical approval, which is the next step towards actually getting to do my research! This will all be a learning experience for me as I’ve never done any primary research, but I’m quite excited for it!

One of my friends shared this article with me on the potential use of “helper” robots as carers. Personally, I find the idea rather alarming because it takes the human connection out of the equation, and I think connections and relationships are crucial to person-centered care, as you may remember from my earlier post. If you read the article, do let me know what you think!

Dementia “tracking”

In the world of dementia care here in the UK, one of the biggest news stories of late was the announcement by the Sussex Police Department of plans to use GPS tracking devices for people with dementia who regularly go missing. The idea behind this is to reduce the costs on the police force for having to search for these individuals, as well as to provide peace of mind for families and caregivers. This announcement has been met with all sorts of criticism, with some individuals and advocacy groups for older adults calling it “inhumane” and comparing it to the electronic tagging of criminals. However, when I first heard about it, without hearing any of the public reactions at the time, my immediate thought was that it seemed like a good idea. From what I understand, it is not something that anyone diagnosed with dementia would automatically have to wear, but is specifically for people who have previously gone missing. There was an awful case in my hometown a few years back where a man with dementia went missing in the dead of winter, and he died of hypothermia. He’d actually been picked up at some point and given a lift by a college student, and to the student he seemed to know where he was going and what he was doing, so the student was not concerned. It was only later when he saw the man on the news that he reported having seen him, but unfortunately they could not find him in time. In such a situation, this man’s life could have been saved if such a device had been in use.

One of the main concerns expressed by those criticizing this scheme is that such schemes will be used in place of providing better quality of care and addressing the underlying issues or environmental problems. While I certainly agree that other factors should be considered and addressed to prevent a person from getting lost to begin with, the unfortunate reality  is that addressing the “causes” or the issues that can lead to a person with dementia “wandering” can be challenging, and may take quite some time to work out. In the meantime, I think ensuring their safety in case something does happen seems like it’s a worthwhile cause. It’s a situation where risk prevention seems to be the lesser of the two evils, but some people disagree with the implications of risk prevention on the individual’s freedom.

My biggest concern with this scheme, and one which I have been unable to find the answer to in all the news stories, is as to whether individuals will be given a choice in whether they wear these devices. It should be the individual’s choice, and not something forced upon them for the peace of mind of their carers and the police. But if their choice is taken into consideration, I don’t see a problem with it.

Interestingly when we discussed this one of my classmates said she didn’t think I would’ve had this opinion when we began the course in September; she thought I would have agreed with those who disagree with the scheme. I’m not sure if she’s right, but I think she probably is onto something about how the course has changed my perspective about some things.

The role of government in health and social care

As I may have mentioned previously, I’ve been reading a lot of Welsh Government policies and policy recommendations by various organizations for my essays. And in writing my essays, I critique these policies quite a bit. I’m also in a course currently called Policies and Practice for an Ageing Population, which involves similar discussions. And the most important thing I’ve learned from these discussions and essays has not been information about specific policies and how they’re enacted, nor has it been how to look at policies with a critical eye. It has been this: It’s far easier to criticize social policy than to fix it.

In my most recent essay on the health needs of older adult spousal carers in Wales, I found myself recommending that the government needs to put stricter regulations in place as to how local authorities support carers. Currently many of the policies outline “guidelines”, meaning that it’s recommended and encouraged for local authorities to do certain things, and they are given a “template” of sorts as to how this might work, but it’s still up to them to put into action. And if they don’t, they’re not breaking any laws–because, as we discussed in a lecture this past week, having the power to do something, in legal terms, is not the same thing as having a duty. In my essay I explored what services for carers I think local authorities should be required to make available (and of course such ideas apply to any health and social services, not just for carers). But even as I wrote the essay, sitting there and saying, “the government SHOULD do this; the government SHOULD regulate that” feels wrong. Because having worked (albeit briefly) in a nursing home in the United States, which is an extremely regulated environment, I can see from the other side that when a government regulated health and social care provision too strictly, you run the risk of losing any chance of “personalization”. So it’s a double-edged sword. On the one hand, the government regulating some services more strictly could lead to improved accessibility and service provision–but on the other hand, this could lead to service provision being too prescriptive, and not allowing any flexibility for the recipient’s unique needs and circumstances. And I find myself wondering if it’s even possible to find that perfect balance, or if, no matter what, this will always be an issue. I most certainly don’t have the answers, but if anyone else does, I’d love to hear them.

UK versus US grading system

Last Wednesday I turned in my research proposal, and tomorrow I will turn in my other second term essay, for my Health and Ageing course. So the waiting game begins–waiting for grades, that is. As I may have mentioned in the past, the UK grading system and US grading system are quite different–so much so that when I received my marks on my last set of essays and both of them were below 70%, my brain went into Red Alert and I had to quickly confirm with my classmates that I had not failed. Below is a chart comparing the two grading systems. The US grading system I have listed here is what it was for me from primary school through my undergraduate studies at the University of Iowa, but I’m sure there are places in the United States where it’s different–however this scale, or a similar one, is fairly commonplace. And the UK standards listed are, obviously, based on Swansea University–taken directly out of my student handbook. I’d also like to point out that I don’t have experience in a postgrad program in the States, so I may be completely comparing apples to oranges–but I just wanted to give it a go!

United States United Kingdom
93-100%: A, Excellent 70% & above: Distinction
85-93%: B, Very good 60-69%: Merit
78-85%: C, Average 50-59%: Pass
70-77%: D, Below average 40-49%: Tolerated Fail
Below 69%: F, Failure Below 40%: Fail

Now looking at the US system compared to the UK system, my first thought is, “Well, the UK makes more sense–they use more of the scale.” After all, what’s the point of having a 0-100% scale when it only matters down to 69%? But after having received our first set of essay marks, I find that the UK system has its own set of flukes. One of the most confusing things I found was that, from what I hear, it is fairly rare to score above a 75%–which means that the UK system has the same problem, but at the top half of the scale as opposed to the bottom. One of my classmates received quite high marks on her essay, and feedback that she should consider submitting her essay for publication–yet she did not surpass 80%, which made us question why. After all, if the essay is nearly of publishable quality, I would expect it to be much closer to a 100%. Now, I’m certainly not criticising the marking–I’m sure it’s more complicated than this, and I’m sure if I were to know all the details of the UK marking system it might make more sense. But one of the things I thought would be challenging in doing only a 1-year program is that there’s not much of a “learning curve” for how essays are marked in the UK–from day 1, my essay marks count equally, so I don’t really have time to learn what’s expected of me based on experience–I just have to do my best work and hope that’s sufficient! Which I would have done anyways, but it does make it a bit more stressful.

Hobbies–a bit more about me

I’ve lost track of time due to being on Easter holiday. Although I’ve still be working at the cafe, my weeks feel much less structured without being in uni on Wednesdays as my halfway mark. I’ve been taking advantage of the time off, though, finishing up my essays and trying to relax a little bit. I only need to shave another 200 words off my research proposal and it will be ready to turn in on Wednesday when we’re back in university!

I’ve spent the majority of my time on this blog talking about academically-relevant things, but there is more to my life than my program! It’s always been really important for me to find that balance between work and relaxation, so today I’m going to talk a little bit about my hobbies and passions and how I balance my academic life with the things I do for fun.

Literature/writing: It comes as a surprise to most people I meet, including my classmates in the program, when I say that my primary degree as an undergraduate was in English and Creative Writing. At most US universities you can choose multiple focuses in your degree by doing a “major” and a minor. Basically what this means is a major will require the full amount of class hours in that subject, but a minor requires only about half of that (depending on the program and university), so at the end of your 4 years you have a greater understanding to your minor than “just the basics”, but less than you would with it as a major.

When I started at the University of Iowa as a freshman, I was just doing a major in English, with a focus in creative writing. The University of Iowa is renowned for its Writer’s Workshop, which is a master’s creative writing program, and that means they also have a robust and excellent program for undergraduates in English and creative writing. I’ve loved reading and writing for as long as anyone remembers (my parents still have a copy of the first book I “wrote” at age three–dictated to my mother, dedicated to my brother, and illustrated by me!), so I knew that I wanted to study that at university. But when I was applying for universities I was also considering Social Work programs, as a more “practical” career. Ultimately, with my parents’ encouragement, I decided to go with what I loved and study English, but I knew Iowa also had a wonderful Social Work program if I changed my mind. Eventually I added a double-minor in Social Work and Ageing Studies, and that’s how I ended up here! But I kept my English major and got accepted to the undergraduate Creative Writing track, and my passion for books and writing certainly rivals my passion for Ageing Studies. I would love to someday complete an MFA program in Creative Writing, maybe after I’ve worked in the field of aging for a while and am needing a break, but I ultimately realized that writing is something I can continue to enjoy on my own, without needing a formal education in it, as much as I enjoyed it as an undergraduate.

It’s hard to find time for leisure reading these days, because honestly, I spend so much time reading and writing for my degree that when I do have free time I don’t always have the energy to pick up a book, but I have slowly worked my way through a few recently and have a growing stack of “books to read” that I look forward to devouring when I have free time, someday.

My main area of writing is fiction, though I dabble in poetry as well. The most writing I’ve been doing outside of academic work is on blogs, this one and a personal one that I keep to update my friends and family at home, but I really enjoy it and find it’s a small way to make sure I’m still using my creative voice. I’ve also begun submitting poetry to literary journals. I’d love to be published someday, particularly my fiction, but as I’m less attached to my poetry than my fiction, I’ve decided to start with that, partially because most of my fiction is too long to be published in a journal, and partly because I’m less attached to my poetry than my fiction, so I won’t be too discouraged if it gets rejected. I’d rather feel that I’m doing something to get my voice out there, because my work is doing nothing if it’s sitting on my hard drive gathering virtual dust.

Sewing:  My mother is a skilled sewer, and tried to teach me to sew when I was younger, and I wasn’t very interested, but that’s changed in the past couple of years and my parents bought me a sewing machine for Christmas three years ago. I was really torn about whether to bring it to the UK with me, but I’m so glad I did, because learning to sew is currently my favorite relaxation and pastime. So far I’ve made aprons for myself and Josh, a “tea wallet” for my tea-addict friend to carry teabags, two pillowcases, and an iPad cover. I’m currently working on a super-secret surprise project as a gift for my mom for Mother’s Day, and no, it’s not late–in the United States, Mother’s Day is in May! I’m working up to trying to make some actual clothes, but I don’t want to get too far ahead of myself.

Science fiction television: I grew up watching Star Trek with my mom and grandma from a fairly young age, and once I hit college I rediscovered it and began watching the different series on my own. My favorite is The Next Generation. I’m fascinated by science fiction because I love the idea of what reality could be, and the fact that some things that are “fiction” could actually become reality someday. Josh loves sci-fi as much as I do, and since moving over here he’s introduced me to a few other series which I love. Cuddling up and watching an episode of something sci-fi is our favorite way to relax at the end of the day. We watched through all of Battlestar Galactica (the remake) in the first three months I was here, and we’ve now moved on to the Stargate series. Between Stargate and Battlestar I’m not sure I could choose a favorite–I love them both in their own ways.

So there you have it–a bit more of “me”, and how I spend my time when I’m not buried in academic journals. Now back to my research proposal!

Two weeks ago we started our third and final set of lectures. Our lectures this semester are “Policies and Practice for an Ageing Population” and “Critical Practice with Older People”. Thus far, I really like them both and I have already chosen my essay topics (I think) and am quite excited about them as they are topics that really interest me and I’m passionate about (but then again, I just love the course in general and issues surrounding ageing so it’s not hard to find something to write about that I’ll enjoy). For the first essay I’m thinking of examining what policies exist addressing the needs and inclusion of either ethnic minority older adults or LGBT older adults. For Critical Practice I want to look into what services are available in terms of palliative care for older adults in Wales and the UK. Since these essays are due in May we have less time for them than we did for the last two sets, so I’ll have to decide as soon as possible so I can start my writing and research! As usual, the diversity of the group of students we have in our program makes for some fascinating discussions, though we have a tendency to talk too much and our lectures almost always run longer than expected…but I don’t mind because the discussions we have are so relevant and such a crucial part of learning.

As my friends and family can attest to, I’m all over the place about my dissertation. It may sound silly, but my mental soundtrack to thinking about my dissertation is the Katy Perry song Hot N Cold..because one minute I’ll be feeling awesome about my dissertation project, then the next I’ll read something or speak to a professor or realize something I hadn’t considered previously and I’ll be freaking out. My classmates get the brunt of my questions and frustrations, mainly because I think Josh would probably go mad if he had to hear me talk myself in circles about it all the time, but also because I know they can relate and may have similar questions/dilemmas.

We have the next two weeks off for Easter break, which really doesn’t mean much for how I spend my time since we’re only in classes one day a week anyways, and I’ll be working the same schedule as normal and continuing to try and get essay work done. Thanks for reading!

Essays, interests, and employment

My second set of essays is due in a little less than a month! Earlier this week I was feeling really nervous about that, but I’ve been really productive the past few days and am in a much better headspace regarding getting everything done. I’ve spent the past few days drowning in UK/Welsh policy readings for one of my essays, on the services available to unpaid carers. I realized today that I’ve already read nearly 50 articles/documents this semester, which is a ridiculous amount and I don’t even know how many pages! However this was kind of validating to see because I’ve felt like I’m never getting enough done, well clearly I have been! My dissertation proposal is due the 10th of April and my other essay is due the 17th. We started our third set of lectures this past Wednesday and have lectures this Wednesday, then we have 2 weeks off for Easter before we go back to lectures, and in mid-May our final set of essays are due. Then I have until the end of September to do my dissertation, and I’ll be done! Which seems crazy. This one-year program is certainly a whirlwind. I’m planning to start job-hunting at the end of the summer, which is going to be here sooner than I thought. I’ve already been keeping my eye on local job offers and researching organizations I’d like to work for so that by the time it comes to job hunting I’ll already have some groundwork done.

In other news, on Thursday I got to meet my client for volunteering with the British Red Cross, and I’ll be starting in 2 weeks, accompanying her once a week to come into town and socialize. The BRC has a ton of awesome programs and services for supporting older people in the community, and they are one of the organizations I’d be interested in working for if a position became available. There are quite a few though, and I keep learning about more. Aside from AgeCymru, there’s DementiaUK, the Alzheimer’s Society,  and there’s an organization called RECOOP that works with rehabilitating older ex-offenders into the community. In lecture last week when I mentioned my interest in dementia, one of my peers told me he works with older adults in the prison system and there is a complete lack of any sort of training or services for older adults in prison with dementia. I’m not sure how one would get involved in that but that’s an issue I’d find really interesting for research and advocacy–if it weren’t too late to switch, I might reconsider my dissertation topic!

What it comes down to is that there are TONS of things I would love to do and wish I could do, and I love people so much that of course anything that involves potentially improving people’s quality of life or raising awareness of their circumstances is highly appealing to me. It’s just a matter of translating this passion and interest into employment, so hopefully  when the time comes I can convince some employer/organization that I’m worth hiring.

Two weekends ago I ran the St. David’s Day 5k in Cardiff and raised £42 for the charity AgeCymru. This is especially cool because I also finished in 42 minutes, a great coincidence! I only started running in November so I was pretty nervous about the 5k but it went wonderfully!

Other than that I’ve been trying to keep up with my essay reading and feeling a bit overwhelmed at times, but I’m managing. I think my friends and peers must think I’m a bit crazy when it comes to my research proposal/dissertation, because one day I’ll say that it’s going splendidly and the next I’ll be pulling my hair out because I’ve realized I have to completely change or rethink parts of my plan. But I guess that’s the point of doing a research proposal, to iron out any major flaws rather than jumping into the research right away and then realizing your mistakes.

I’ve had a major realization in the past week that, one that some people may be surprised that it’s taken me this long to come to, but I guess it’s just something I hadn’t consciously considered. I’ve been feeling quite intimidated by my research proposal because I’ve never undertaken any direct research of my own before that involved gathering my own data, analyzing it, etc. The more I read up on my subjects the better I understand it and the clearer my own plan becomes, but there have been a few bumps in the road. However, I had this awesome moment this past week when I realized how pleased I am to be finding this program challenging! The whole reason I fell in love with Swansea’s Ageing Studies program is because it is research-based, and my undergraduate program was more general and all of my experience was in working with older adults, but I lacked the research focus or understanding. Although I ultimately want to be in a social services career (I think), I really felt like I wanted and needed a more research-based perspective of ageing to round out my views, and that’s definitely what I’m getting here. Plus, getting to design my own research is really interesting, exciting, and challenging. As an undergraduate I think I probably spent more time being stressed out about the practical side of things–having enough time to get my papers done, finding the right sources, and just generally balancing everything–but I’m finding this program quite challenging intellectually, which is awesome, because that’s what I’m here for.

I’m currently in the process of putting together a promotional video for the University about the Ageing Studies department, so I’ll let you guys know when that goes up :)

The complicated status of Wales

Since today is St. David’s Day and also the 6 month anniversary of my move to Wales, it seems like a good day for some reflection on Welsh patriotism. I tried to do some research on who St. David was and how he became the patron saint of Wales, and the best information I found was here. In modern times, St. David’s Day seems to be a day to celebrate what it means to be Welsh, and it’s tradition to wear either a daffodil, the national emblem of Wales, or a leek, which is apparently also a national emblem of Wales. When I was out in town this morning, I saw a lot of people with daffodils on their lapels, and the Carmarthen Town Council had a tent set up for singing traditional Welsh songs and reading of poems and speeches by local schoolchildren in traditional Welsh costumes. Carmarthen is reportedly the oldest town in Wales, having been inhabited since before the Roman rule. One thing I loved about Wales when I first visited 2 years ago is the amazing contrast you can see between the past and the present just walking down the street. I’ve seen this in Swansea, Cardiff, and Carmarthen, where you’ll find a historic castle surrounded by a thriving city and updated modern buildings. This makes sense, as obviously these towns originally developed around the castles and expanded beyond there, but it’s so fascinating as it’s something you never see in the states, because our history doesn’t go back nearly as far. Carmarthenshire (the county) also has one of the highest proportions of Welsh speakers in the country, which is pretty cool, and I think this is why Carmarthen feels so very devoted to its Welshness. There’s a conscious effort to hold on to these traditions and the language, like the singing of Welsh Christmas carols on the square during the holidays. I’m sure this is not unique to Carmarthen, but I think it is unique to the smaller and more rural parts of Wales. I asked my friend Amy, who lives in Swansea, if she knows anyone who speaks Welsh and she said no. In Carmarthen you hear it all the time–in cafes, in the shoes store, on the radio, or just walking down the street.

Josh has lived in Wales for as long as he can remember, but he was born in Yorkshire, England, and always corrects me if I call him Welsh. Yet he’s very keen to defend Wales to my friends and family from home, some of  whom, prior to me coming here, did not even know it existed, and he’s quick to point out that Wales is separate from England. Even though he’s not Welsh by birth, he has his own pride about living in Wales, which I think comes from the fact that Wales is so often overlooked or misunderstood by foreigners.

Ever since I met Josh, which was quite a few years before I moved to Wales, he’s tried to explain to me the status of Wales within the United Kingdom. But it seems, now that I’m here, that even the most basic questions have complicated answers. For example–”Is Wales a country?” is something I’ve asked plenty of people, because their answers interest me. What I’ve found is that the answers vary. Josh has always stood by the fact that Wales is not a country, but a principality. Other people will say that yes, Wales is a country, because it has its own government (the Welsh Assembly Government), however, from what I understand the laws and politics of Parliament hold sway in Wales as well. Interestingly, when I looked up “principality” on Google, this is what came up:

However, I then found out that Wales had been declared a principality way back in the year 1216, but despite how much things have changed politically since then, no one had ever bothered to look at this issue and address it–until 2012, that is. In January of 2012, Wales was officially reclassified as a country by the International Organization for Standards in Geneva, after examining the issue and deciding that to call Wales a principality was an extremely outdated idea. But even though its status officially changed only in 2012, it’s something that people have debated for a long time. I can see why people who have lived in and loved Wales all their lives, with its unique history, ancient language and picturesque landscapes, would want it to be recognized as a country. And I now have my answer as to whether it is!