Study - PTSD in parents of CF'ers

K

ktsmom

New member
I found this fascinating. If you've ever had one of those days when you can't shake the blues about CF, this study may shed some light on why.

I'm not an expert on reading and analyzing these but it seemed pretty thorough. One of the study's authors has a child with CF. It was done on parents involved in the CF Association of Rio De Janeiro.

The knowledge that one's child has a life-threatening illness has only recently been recognized as a qualifying "traumatic event" for clinical diagnosis of PTSD. Also, if you read the study it seems that we don't express the symptom of "avoidance" as much, possibly because <i>"it might be hypothesized that a relatively low prevalence of the avoidance cluster reflects the fact that the parents in our study could have no effective ways of distancing themselves from the "traumatic event", since the majority of them were entirely responsible for the treatment of their children".</i>

We (and our kids) <i>can't</i> get away from it! Lacking the symptom of avoidance might actually cause cases of PTSD to be underdiagnosed.

So anyway here is the link to the study:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0101-60832010000100002&lng=en&nrm=iso&tlng=en">January 2010 Study re PTSD in parents of CF children</a>
 
K

ktsmom

New member
I found this fascinating. If you've ever had one of those days when you can't shake the blues about CF, this study may shed some light on why.

I'm not an expert on reading and analyzing these but it seemed pretty thorough. One of the study's authors has a child with CF. It was done on parents involved in the CF Association of Rio De Janeiro.

The knowledge that one's child has a life-threatening illness has only recently been recognized as a qualifying "traumatic event" for clinical diagnosis of PTSD. Also, if you read the study it seems that we don't express the symptom of "avoidance" as much, possibly because <i>"it might be hypothesized that a relatively low prevalence of the avoidance cluster reflects the fact that the parents in our study could have no effective ways of distancing themselves from the "traumatic event", since the majority of them were entirely responsible for the treatment of their children".</i>

We (and our kids) <i>can't</i> get away from it! Lacking the symptom of avoidance might actually cause cases of PTSD to be underdiagnosed.

So anyway here is the link to the study:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0101-60832010000100002&lng=en&nrm=iso&tlng=en">January 2010 Study re PTSD in parents of CF children</a>
 
K

ktsmom

New member
I found this fascinating. If you've ever had one of those days when you can't shake the blues about CF, this study may shed some light on why.
<br />
<br />I'm not an expert on reading and analyzing these but it seemed pretty thorough. One of the study's authors has a child with CF. It was done on parents involved in the CF Association of Rio De Janeiro.
<br />
<br />The knowledge that one's child has a life-threatening illness has only recently been recognized as a qualifying "traumatic event" for clinical diagnosis of PTSD. Also, if you read the study it seems that we don't express the symptom of "avoidance" as much, possibly because <i>"it might be hypothesized that a relatively low prevalence of the avoidance cluster reflects the fact that the parents in our study could have no effective ways of distancing themselves from the "traumatic event", since the majority of them were entirely responsible for the treatment of their children".</i>
<br />
<br />We (and our kids) <i>can't</i> get away from it! Lacking the symptom of avoidance might actually cause cases of PTSD to be underdiagnosed.
<br />
<br />So anyway here is the link to the study:
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0101-60832010000100002&lng=en&nrm=iso&tlng=en">January 2010 Study re PTSD in parents of CF children</a>
 
J

JORDYSMOM

New member
I have no doubt that I suffer from PTSD. <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />Stacey
 
M

mamaScarlett

Active member
I am not a parent of a child with cf, but I am a parent with Cf. I've been dx with PTSD twice in my life. My doctors believe it is something I will always deal with in episodes for the rest of my life.
My first major bout with PTSD involved issues stemming from child abuse and the past. But my 2nd major bout of it was after a serious cf exacerbation after I had become a mom myself. Till then I never realized the weight of health problems in connection with anxiety and depression-particularly when you are a parent. Parents like you, or the patient-parent like me. <i>I can only begin to imagine the stress and pain parents of cfers go through</i>. For me, the intense emotions and fear of being sick, getting worse, and being separated from my daughter, leaving her, (even if my fears were irrational at times) all of that-was intense. Even now, getting the slightest cold or coughing more, being around someone who is sick-can give me panic attacks.

My cf docs and I have had so many talks about it. I don't think we talk about it enough in the Cf world.
 
M

mamaScarlett

Active member
I am not a parent of a child with cf, but I am a parent with Cf. I've been dx with PTSD twice in my life. My doctors believe it is something I will always deal with in episodes for the rest of my life.
My first major bout with PTSD involved issues stemming from child abuse and the past. But my 2nd major bout of it was after a serious cf exacerbation after I had become a mom myself. Till then I never realized the weight of health problems in connection with anxiety and depression-particularly when you are a parent. Parents like you, or the patient-parent like me. <i>I can only begin to imagine the stress and pain parents of cfers go through</i>. For me, the intense emotions and fear of being sick, getting worse, and being separated from my daughter, leaving her, (even if my fears were irrational at times) all of that-was intense. Even now, getting the slightest cold or coughing more, being around someone who is sick-can give me panic attacks.

My cf docs and I have had so many talks about it. I don't think we talk about it enough in the Cf world.
 
M

mamaScarlett

Active member
I am not a parent of a child with cf, but I am a parent with Cf. I've been dx with PTSD twice in my life. My doctors believe it is something I will always deal with in episodes for the rest of my life.
<br />My first major bout with PTSD involved issues stemming from child abuse and the past. But my 2nd major bout of it was after a serious cf exacerbation after I had become a mom myself. Till then I never realized the weight of health problems in connection with anxiety and depression-particularly when you are a parent. Parents like you, or the patient-parent like me. <i>I can only begin to imagine the stress and pain parents of cfers go through</i>. For me, the intense emotions and fear of being sick, getting worse, and being separated from my daughter, leaving her, (even if my fears were irrational at times) all of that-was intense. Even now, getting the slightest cold or coughing more, being around someone who is sick-can give me panic attacks.
<br />
<br />My cf docs and I have had so many talks about it. I don't think we talk about it enough in the Cf world.
 
M

Mommafirst

Guest
Dana --

Thank you sooo much for posting this. I never understood the chemical need for antidepressants and antianxiety meds before I became a CF parent. AFter bouts in the hospitals I have had severe anxiety attacks that have impacted some of my other health issues....terrible reflux, difficulty breathing that is NOT asthma, etc. It is wonderful to see that these are reasonable reactions to haivng a chronically ill child.

Having a child diagnosed with CF changes a parent in soooo many ways. I'm not the person I was 5 years ago.

I plan to share this with my husband, who I'm sure will appreciate it as well.

Thanks again -
Heather
 
M

Mommafirst

Guest
Dana --

Thank you sooo much for posting this. I never understood the chemical need for antidepressants and antianxiety meds before I became a CF parent. AFter bouts in the hospitals I have had severe anxiety attacks that have impacted some of my other health issues....terrible reflux, difficulty breathing that is NOT asthma, etc. It is wonderful to see that these are reasonable reactions to haivng a chronically ill child.

Having a child diagnosed with CF changes a parent in soooo many ways. I'm not the person I was 5 years ago.

I plan to share this with my husband, who I'm sure will appreciate it as well.

Thanks again -
Heather
 
M

Mommafirst

Guest
Dana --
<br />
<br />Thank you sooo much for posting this. I never understood the chemical need for antidepressants and antianxiety meds before I became a CF parent. AFter bouts in the hospitals I have had severe anxiety attacks that have impacted some of my other health issues....terrible reflux, difficulty breathing that is NOT asthma, etc. It is wonderful to see that these are reasonable reactions to haivng a chronically ill child.
<br />
<br />Having a child diagnosed with CF changes a parent in soooo many ways. I'm not the person I was 5 years ago.
<br />
<br />I plan to share this with my husband, who I'm sure will appreciate it as well.
<br />
<br />Thanks again -
<br />Heather
 
J

jenspoon

New member
This post has made me feel so much more "normal" for a cf mum. Its been sixteen years now since my daughter was born and I still have anxiety attacks with memories of the telephone call that came to inform me my baby had cf. I live with anxiety that makes each day a challenge, currently trying to sort out meds to help.

We do however,press on each day, facing the challenges that cf brings and trying to be positive for the sake of our families but underneath my exterior is a person who has day to day struggles just holding it all together. The expectations we have of ourselves can be huge. Thank you for this post and thank you for sharing your own experiences, it helps to not feel so alone.
 
J

jenspoon

New member
This post has made me feel so much more "normal" for a cf mum. Its been sixteen years now since my daughter was born and I still have anxiety attacks with memories of the telephone call that came to inform me my baby had cf. I live with anxiety that makes each day a challenge, currently trying to sort out meds to help.

We do however,press on each day, facing the challenges that cf brings and trying to be positive for the sake of our families but underneath my exterior is a person who has day to day struggles just holding it all together. The expectations we have of ourselves can be huge. Thank you for this post and thank you for sharing your own experiences, it helps to not feel so alone.
 
J

jenspoon

New member
This post has made me feel so much more "normal" for a cf mum. Its been sixteen years now since my daughter was born and I still have anxiety attacks with memories of the telephone call that came to inform me my baby had cf. I live with anxiety that makes each day a challenge, currently trying to sort out meds to help.
<br />
<br />We do however,press on each day, facing the challenges that cf brings and trying to be positive for the sake of our families but underneath my exterior is a person who has day to day struggles just holding it all together. The expectations we have of ourselves can be huge. Thank you for this post and thank you for sharing your own experiences, it helps to not feel so alone.
 
M

Mommafirst

Guest
I can't stop thinking aobut this article. I brought it to our CF Family Council and everyone there was really intrigued. Some of the parents of older patients said they recognize after reading the article that their kids may have been struggling with this post a particularly bad hospitalization or infection. One of the adult patients said that he now realizes his mother must have suffered from this years ago. Everytime I think about this article it makes me cry, because it seems like its an answer to a lot of questions and hopefully answers will lead to help and maybe solutions.
 
M

Mommafirst

Guest
I can't stop thinking aobut this article. I brought it to our CF Family Council and everyone there was really intrigued. Some of the parents of older patients said they recognize after reading the article that their kids may have been struggling with this post a particularly bad hospitalization or infection. One of the adult patients said that he now realizes his mother must have suffered from this years ago. Everytime I think about this article it makes me cry, because it seems like its an answer to a lot of questions and hopefully answers will lead to help and maybe solutions.
 
M

Mommafirst

Guest
I can't stop thinking aobut this article. I brought it to our CF Family Council and everyone there was really intrigued. Some of the parents of older patients said they recognize after reading the article that their kids may have been struggling with this post a particularly bad hospitalization or infection. One of the adult patients said that he now realizes his mother must have suffered from this years ago. Everytime I think about this article it makes me cry, because it seems like its an answer to a lot of questions and hopefully answers will lead to help and maybe solutions.
 
J

JORDYSMOM

New member
I'm with you Heather. I cried last night telling my husband about this article. For so long I've felt like I needed to get a grip, and learn to handle my anxiety/panick disorder. I've felt that I'm a logical, intelligent person, so why can't I control my emotions?! Even feeling guilty about my seemingly unrealistic problems.

I told David that this article helps me see that there is a legitimate reason for my problems. It helps me see that I'm not the only one who feels this way. Even though I know you other parents here understand my fears, worries, and that waiting for the other shoe to drop feeling, I needed this article. Even though I've shared with everyone here that I have an anxiety/panick disorder, I've never really admitted the severity of it. Sometimes it's pretty bad. <img src="i/expressions/face-icon-small-sad.gif" border="0">

Stacey
 
J

JORDYSMOM

New member
I'm with you Heather. I cried last night telling my husband about this article. For so long I've felt like I needed to get a grip, and learn to handle my anxiety/panick disorder. I've felt that I'm a logical, intelligent person, so why can't I control my emotions?! Even feeling guilty about my seemingly unrealistic problems.

I told David that this article helps me see that there is a legitimate reason for my problems. It helps me see that I'm not the only one who feels this way. Even though I know you other parents here understand my fears, worries, and that waiting for the other shoe to drop feeling, I needed this article. Even though I've shared with everyone here that I have an anxiety/panick disorder, I've never really admitted the severity of it. Sometimes it's pretty bad. <img src="i/expressions/face-icon-small-sad.gif" border="0">

Stacey
 
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