Monday, 16 November 2009

How do I do this ethically?

So here's the thing....

I have to undertake a Community Profile for my Community Development module. The lectures so far have been on the history of Community Development (the theory and thoughts that have shaped what we do today), who has the power and how is that power used (It's scary how many organisations use their power to keep people oppressed), how communities are represented (Who is 'the voice' of that community and do they actually represent those they claim to or are they just voicing their own views), how to involve communities in the decision making process (in most instances the people that use the services are the best people to make decisions on how to improve those services) and what the best practices are for engaging and empowering the community. Last weeks lecture was cancelled because we were to spend the whole day on Saturday learning how to go about doing a Community Profile.

Now, before I go any further a Community Profile is defined as

'A comprehensive description of the needs of a community, and the resources that exist within that community, carried out with the active involvement of the community itself, for the purpose of developing an action plan or other means of improving the quality of life of the community' (Hawtin et al, 1994:5) (Ooohhh get me with my referencing!!)

Oh, and I should probably say that a community can be either a group of people living in a specific area, a group of people that share a common interest, a group of people from a particular ethnic group or a mixture of all of the above.

The community I am going to focus on is what is known as a 'hidden community'. I am going to be looking at people who are housebound due to illness in an area of Tower Hamlets (Tower Hamlets is too big to cover so I will have to chose a specific, smaller, location within it....I'm not sure where that will be yet but I have a few organisations to speak to who should be able to help me narrow it down).

I already know that the statistical part of the profile will not be easy to do but I am planning to get statistics from a number of organisations and then compare them in order to try and build up an overall view (I'm thinking Age Concern, GP Register, Social Services, NHS Trusts and the benefits agency...I will use the 2001 census as a starting point but the information contained in it will be very out of date so I don't think it will be very reliable.....if anyone has any other thoughts they would be most welcome) but there are two things that are worrying me. The first is the time scale, I only have three weeks in which to do everything, and the second is the reasons for doing the profile in the first place.

Don't get me wrong, I think Community Profiles are a wonderful tool that can be used for all sorts of brilliant things (to show where there are gaps in services, to highlight the fact that a service needs to be improved or expanded, to be used as part of a funding proposal....the list goes on). My problem is that I will be doing it because I need to submit a Community Profile for what do the people I am profiling get out of it? Do you see what my problem is? If I just do it in order to pass my course then I'm just as bad as all those organisations who use people for their own gain and that goes against everything I stand for!!

My solution, sorry I'm using this post as a way of structuring my thoughts, is to identify three (I don't think I can do any more in the time I have) housebound patients to visit with the purpose of undertaking a 'Discovery Interview'. (This is an interview technique used to enable a patient to tell their 'health story' in their own words. It gives them an opportunity to talk to someone about the problems they have encountered, what experiences have been positive, how they feel emotionally as well as physically and how they feel things could be improved upon). If I did this then I could make the information anonymous and, via THINk, feed it directly back to those providing the services in that area. That way the people I was speaking to would benefit from the process and I could use the information to cover the community aspect of my profile and to form the action plan. I can't see any other way of doing the profile without exploiting those I want to help and I just can't do that!!

What do you think?


LadyFi said...

Sounds like your solution is a win-win situation: for the community and for your!

DJ Kirkby said...

Do a discovery interview. Get info and stats from the local PCT, they will have loads but may ask you for a copy of your report in return to help them plan/structure primary care services in the future.

SueG said...

I think the fact that you're asking these questions shows how good you will be at this. certainly, teaching hospitals always have interns sitting in on examinations and procedures. The patients don't necessarily get anything out of that, though the students increase their knowledge and experience. it seems to me that your situation is analogous. No problem there.

French Fancy said...

I think you are taking a very ethical stance with this profiling and I'm sure there are many students who just go out there with a view to completing their assessments in order to get their merit marks. I know that when you have the MA under your belt and have found the perfect role in which you will shine, well you will really make a difference in whichever community you will be helping.

I know this sounds a bit unctuous and creepy but when I think of some of the people I encountered as my father deteriorated, I would have thought it was my lucky day if someone as caring as you had appeared.

Carol said...

LadyFi - I just couldn't think of another way of doing it!! I hope that by doing it that way no-one will feel like they are being exploited!!

DJ - I'm so glad you think that's a good idea!! I was planning to offer a copy of the profile to everyone that assists me, whether it's by giving me info or time.

I got a fab e-mail from Queenie giving me loads of advice and information and she suggested that I offer a bit of my time to do something (within reason of course) for the patients who agree to do the interviews. I think that's a great idea and I'm going to build it into my action plan!!

SueG - Awww, that's a lovely thing to say!! I agree with the Uni that the best way of learning is by doing but I just felt that it might have been better, given the time frame, to ask us to submit a proposal regarding how we would go about doing it rather than expecting us to do it in three weeks. If they had done that then it would eliminate the possibility of people being exploited so a student can complete an assignment!!

Oh, and you've taught me a new word...I had to go and look up analogous :-)

C x

Carol said...

French Fancy - You managed to sneak in there!!

You say such lovely things honey (and I now have a big lump in my throat!!). It's just something that I feel very strongly about...I hate any kind of injustice which is one of the reasons that I chose to work in this field.

It doesn't sound unctuous and creepy at all!! I've encountered the type you are referring too...they can certainly make a difficult situation much much worse!! I'm so sorry you had to go through that!!

C x

French Fancy said...

In the end I wrote to the MP Glenda Jackson (he was in the Royal Free in Hampstead which is her constituency) and she was no end of help. They lost his notes which had all my contact details on and when I would ring up from France to see what was happening nobody would tell me - why? Because there was nothing to prove I was his daughter. And that was when it all started - that was the good bit - it got much much worse.

Anyway Ms Jackson was superb, no end of help.

French Fancy said...

(and they then got his notes mixed up with someone else and the whole situation became quite ludicrously stupid)

I can see this is still all very fresh inside me - despite it being over three years ago. Sorry to go on.

Carol said...

French Fancy - Your not going on!! It's terrible what some people have to go through when it comes to their health...and the worst of it is that the majority will not say anything because they are scared that the care they are receiving will be effected!! I have heard some really awful horror stories...

I'm glad that you got help, it's important that there is someone to fight your corner.


C x

Debs said...

I think if you can help give these people a voice or way to get their story heard by anyone that could be of help to them that will surely be a positive thing.

Carol said...

Mark - That's a very good point but I would rather not be compromised in the process of getting my masters degree which is why I was looking at how to do it ethically. I also believe that by doing the way I am I will get a higher mark because I can show that I didn't view my own needs as more important than those of the community I am working with.

The other issue I have is that, in my experience, a community (or people within a community) only have to have one bad experience with a Community Development worker to make it extremely difficult for anyone to engage with them again. If I go all out for number 1 then the next person will have to work twice/three/four times as hard to get them to gain their trust!!

C x

Carol said...

Mark - Sorry, that is full of typing errors...I have a cat yowling at me (very persistently and loudly) for his dinner!!

He's now attempting to eat my to go

C x

Suburbia said...

An ethical dilemma, fairly standard in Social science (!) though I am not sure what your course is. There is so much data about Tower Hamlets, incredibly interesting. I would like to know more about your study,I am completely useless with advice though!!!

Carol said...

Debs - I couldn't agree more!! Unfortunately, for various reasons, I think a lot of the profiles will be done for the course and no other reason so the information gathered will not be passed to anyone!!

Suburbia - *sigh* It's just not easy trying to balance what needs to be done vs the right thing to do!! I guess that will be true for which ever job I get at the end of the course this is probably good practice!!

I'm studying for a MSC in Organisation and Community Development.

Hopefully there will be lots of stats available on that group and I'm keeping my fingers crossed that they will be easy to lay my hands on (although I'm not going to hold my breath...I'm don't really suit purple :-D)

C x

HelenMHunt said...

I think you've hit on a perfect solution. Hope the cat didn't eat your toe!

Carol said...

Helen - He had a good go at my toe but decided that his cat food was more tasty :-)

I hope I have!!

C x

Lane said...

Gosh it's been all go for you these last couple of months Carol. It sounds like you've really settled into it. Brilliant.

And as for your question - I think you've hit upon the solution and those you interview will benefit as it's all for the common good in the long run.

cheshire wife said...

I think that you have worked it out for yourself. I was very interested to read this post as I have just posted about problems with our village hall, which needs rebuilding.

Ann said...

I am still on " bloody brilliant news " doh!, I need to search more thoroughly first thing in the morning.

This sounds very interesting Carol, wonder if you will get emotionally involved, it must be very difficult, though if something good comes out of this via feedback to those who can help, this would be wonderful.

Like FF, I too had dreadful problems when dad had cancer, they sent dad home from the Beatson in Glasgow, with the words I will never forget " go home, eat as much as you can, and have a good life ", for a start he could not eat anything, his stomach cancer had spread to his oesophagus, then suddenly he had a voice, me, I took on the top brass and won, dad had laser treatment, stents, he lived another 6 months, and it made me realise how awful it is for patients with nobody to help them, like you I hate injustice.

Carol, will you feed your bliddy cats, toes are not good for their digestion, and not good for the balance, when two of the digits are missing, especially when inebriated.

Carol said...

Lane - I'm not sure I would use the word settled but I'm getting there!! It's taking a bit of getting used to!!

I'm hoping that I'll get some good news tomorrow. I spoke to a guy who runs The Carer's Centre and he seemed to think that I would have a lot of people wanting to speak to me because their views would be fed back into the system without fear of it affecting their treatment. I'm keeping my fingers crossed!!

Cheshire Wife - That sounds interesting!! I've not managed to make it round everyone's blog's yet....

Ann - I think some of the interviews I will be doing will be with patients accessing end of life services. I'm not sure how I'll cope with that if I'm honest but I think it's important for their views to be heard. I don't think it's right to avoid something because it's difficult!!

I'm so sorry to hear about your Dad hon, that must have been absolutely awful!! As you said, you wonder how people manage when they have no family fighting their corner.

Ann, you have seen photo's of our cats...neither of them look like they are in any danger of starving!!! The wee bugger had just decided that he didn't want to wait anymore (and he get's a bit jealous of the laptop....stupid cat!!).

LOL, I'm going to use that as an excuse the next time I'm a bit wobbly after a glass of two of wine...'It's not my fault!! The cat ate my toe' *snigger*

C x

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