Thursday, January 24, 2013

Psychological Study

A few months ago we were asked to participate in another study. This one doesn't affect Victor at all, it's mostly about the family. This study is run by a group of psychologists and the study is investigating social and economic factors affecting cystic fibrosis outcomes, and also investigating whether families need more or better access to certain services and how that affects the family and the child with CF.

Phil and I agreed to participate and were sent out large questionnaires, one for each of us. The questions ranged from basic ones about our life, such as total household income, our education levels,  how many people are in our family, are we renting or do we own our house, to questions asking about how we cope with a child with CF: do we use any of the following methods to cope (with a long list); how do we parent? How do we discipline? How are we feeling? All questions were multiple-choice and there was space to add comments if we needed to.

Phil didn't like the questionnaire; he decided to not participate in the second half of the study.

I went on with the second half of the study, which was an interview with the research psychologist in charge of the study. She visited us at home on a Saturday just to make it easier for us. She was very nice and easy to talk to which is probably a good trait for a psychologist to have!

We chatted for about half an hour when she arrived, and she explained what the study was about in a bit more detail. The questions she asked were read off a piece of paper as they were standardized. She explained they were the exact same questions asked in a study on families of oncology patients, with a few extra added in to make it relevant to CF. The interview was recorded.

The questions started with: Name three adjectives to describe Victor and give an example of each. I think I chose active, content and happy (it's actually fairly difficult thinking of ONE word, think I needed a thesaurus handy!). Then I had to do the same, but describing myself, which was a million times harder (especially as I was trying to think of positive describing words!). I had to describe my relationship with Victor, what I hoped for in Victor's future, what I worried about in Victor's future, how do I behave when anxious or stressed, how does Victor behave when I am feeling anxious, and a lot more questions along that theme.

The interview took just over an hour as predicted. For the most part, the questions were pretty easy (just had a few mental blanks and couldn't think of a single word with the descriptive meaning I was after! Got there in the end though!).

Even though she was friendly and easy to talk to, I did get the feeling that I was being 'analyzed', but I accept the possibility that it was only happening in my mind! I also felt as though she was prodding me for answers at times, and for a while tried to guide the conversation in a more pessimistic direction (for lack of a better term). She threw in a few reminders along the lines of 'terminal illness' and 'he is really sick' and 'if' instead of 'when'. I wondered perhaps if I was coming across as too positive and therefore not seeming completely honest and open and she was trying to get my real feelings out? Perhaps I'm not normal then because seriously, this is just what I'm like. I don't have any energy to put up a fa├žade so this is it. If I'm happy people know about it, if I'm not, then people definitely know about it. Luckily I'm usually pretty content. And of course I am aware of what cystic fibrosis is, but I don't see the point on dwelling on the negative possibilities, things which haven't happened yet and may not ever happen. We'll cross the hurdles when we come to them. The fact is that even with cystic fibrosis, Victor seems really healthy. He takes his medicine and does his physiotherapy every day, but aside from that no one would ever suspect anything was wrong with his health. I'd rather focus on our preventative treatment now and trying to keep him this healthy for as long as possible instead of getting stressed out thinking about what might happen if he were to become sick.

It's taken me almost a week to write this entry, I think I've just been really tired. Victor is getting so strong now, he is crawling very fast, getting into everything, can sit well on his own and has started to try to pull himself up on things. Felix is getting smarter every day, he wants to know how to spell everything and knows how to spell out his name, Victor's name, and several other words using magnetic letters or alphabet blocks. I am encouraging him to sound out the word when he asks the spelling of it and you can see he's proud of himself when he gets the right answer on his own. We are also getting ready for his third birthday, which is just around the corner!

Both boys have been painting pictures this week, Felix is the only one who decided to paint himself though!



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