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Author Topic: Re: University Survey: Your experiences as a support person  (Read 3471 times)
claudiaduffy
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« Reply #20 on: March 29, 2012, 12:14:21 AM »



The survey can be found at



Rachel,

I may be the only one with this problem, but I'm stuck on one of the first pages, not knowing how to answer one of the questions:

"What is your relationship to your relative?"
-Mother
-Father
-Child
etc.

I am a non, and my mother has BPD. My relationship to my relative is "child." My relative's relationship to me is "mother." However, my first reading of this was that you wanted to know which word out of the list applied to my person with BPD, not which word applied to me...probably because that's the way most surveys tend to go...and now I really wonder which it was meant to be, and if everyone else just read it correctly and didn't have a problem with the phrasing like I did!
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Rachel Bailey
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« Reply #21 on: March 29, 2012, 03:36:42 AM »

Hi there.

Unfortunately I do not have the capacity to monitor this thread, however I am very grateful to everyone who has completed the survey.

I hope that the results of this survey will increase awareness for the unique experiences of caring/supporting/being in a relationship with a person with personality disorder, and therefore reduce stigma and increase support options.

This survey is part of a larger research initiative for personality disorders and I welcome those interested to have a look at our website: www.projectairstrategy.org

Thank you again for completing the survey. Your opinions are valued and I hope that through this research we can not only understand your experiences, but also learn of the intricate issues of caring for a person with personality disorder so that future research will capture more of your story.

Kind regards,

Rachel Bailey.
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Rachel Bailey
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« Reply #22 on: March 29, 2012, 05:57:15 AM »

Hi there,

This question is aimed at determining the relationship that you have with your relative with personality disorder. In reading your comment, your relationship would be "child". Thank you for your feedback on the phrasing of this question. I have now modified it slightly to hopefully reduce confusion for future participants.

All the best

Rachel Bailey.





The survey can be found at



Rachel,

I may be the only one with this problem, but I'm stuck on one of the first pages, not knowing how to answer one of the questions:

"What is your relationship to your relative?"
-Mother
-Father
-Child
etc.

I am a non, and my mother has BPD. My relationship to my relative is "child." My relative's relationship to me is "mother." However, my first reading of this was that you wanted to know which word out of the list applied to my person with BPD, not which word applied to me...probably because that's the way most surveys tend to go...and now I really wonder which it was meant to be, and if everyone else just read it correctly and didn't have a problem with the phrasing like I did!
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GENERAL ANNOUNCEMENT

This board is intended for general questions about BPD and other personality disorders, trait definitions, and related therapies and diagnostics. Topics should be formatted as a question.

Please do not host topics related to the specific pwBPD in your life - those discussions should be hosted on an appropraite [L1] - [L4] board.

You will find indepth information provided by our senior members in our workshop board discussions (click here).

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« Reply #23 on: March 29, 2012, 06:19:31 AM »

I also feel the parameters of the survey, at least from the introduction to be too narrow. Most of us are not really "carers" in the true sense of the word. For example under Australian Centrelink rules I doubt that I would have been considered a carer for my exh until he had a bi polar meltdown and his diagnosis for disability support was based on bi polar, not his bpd which was also diagnosed but not the focus.

From my point of view, as a carer for my adult D (not bpd) the level of support required as a true carer is totally different from the level of support required for a bpd relative.  Most do not acknowledge the bpd a being an issue and our support is therefore more a "holding the family together" and sole parenting while married rather than physically caring for someone with a mental illness. It is also trying to cope with mental, emotional and sometimes physical abuse.

I found cutting to be non existent in my exbpdh but he certainly had other risk taking behaviours. But you can't "caretake" for that I feel - caretaking to me implies the consent and co-operation of the person you are caring for as much as they can, if they are not in a coma.  My D for example is well aware of her need to have a caretaker and although she can be difficult, she doesn't decide to go off and do her own thing. She works with me as much as she can, to be independent. This is totally different to a high functioning, high IQ individual who doesn't think he has a problem but who thinks everyone else is the issue. More like an alcoholic I guess and I don't think we generally look at caretaking an alcoholic.

Perhaps my definition of caretaker needs to be broadened out. But I feel that mostly during the relationship it was taking care of all the family responsibilities - breadwinner, child raiser, peacemaker, social counselor and trouble shooter rather than caretaker.  And never any respite so that eventually you become so run down that the only thing left is to stop.

Rose
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UKannie
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« Reply #24 on: March 29, 2012, 07:37:30 AM »

I completed the survey but towards the end when I asked "is there anything we have missed?", I wrote

My mother is a 67 year old adult and undiagnosed. There is no prospect of her ever receiving the kind of help with her mental health that she needs.

BPDs do not get professional help for three main reasons
- provision of appropriate mental health services and expertise is unsatisfactory
- many of them do not believe they are ill
- many of their 'carers' do not insist they get help

I think the definition of 'carer' is problematic. The person who ends up being a PD'ed person's carer is often the relative (usually a spouse) who is prepared to hang around and take their cr*p. Is my dad a carer I wonder, or an enabler? He is never, ever likely to raise the prospect that she needs professional help with her.

I don't think this questionnaire will enable the authors to get to the bottom of a lot of the issues Adult Children face, or the difficulties (ie, abuse/neglect) we faced when growing up.

love Annie
« Last Edit: March 29, 2012, 07:57:07 AM by UKannie » Logged
Ankakusu
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« Reply #25 on: March 29, 2012, 08:50:11 AM »

I completed the survey but towards the end when I asked "is there anything we have missed?", I wrote

My mother is a 67 year old adult and undiagnosed. There is no prospect of her ever receiving the kind of help with her mental health that she needs.

BPDs do not get professional help for three main reasons
- provision of appropriate mental health services and expertise is unsatisfactory
- many of them do not believe they are ill
- many of their 'carers' do not insist they get help

I think the definition of 'carer' is problematic. The person who ends up being a PD'ed person's carer is often the relative (usually a spouse) who is prepared to hang around and take their cr*p. Is my dad a carer I wonder, or an enabler? He is never, ever likely to raise the prospect that she needs professional help with her.

I don't think this questionnaire will enable the authors to get to the bottom of a lot of the issues Adult Children face, or the difficulties (ie, abuse/neglect) we faced when growing up.

love Annie

I agree! This also seems like it's more geared towards helping the PD'd than their traumatized children/families. I felt like saying, "but what if we *DON'T* care? For the sake of our own peace of mind? Can I be an uncarer?"
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peacebaby
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« Reply #26 on: March 29, 2012, 10:22:13 AM »

When I first saw this and responded to it, it was on the Staying board, so I assumed it was about care-taking partners with BPD. Which is how I answered it, but luckily didn't finish. I never did any care-taking for my step-mother with BPD, so I couldn't have answered this anyway.

Quote
Unfortunately I do not have the capacity to monitor this thread,

Wrote the original poster, making me wonder why any of us should have the "capacity" to take the survey?
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argyle
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« Reply #27 on: March 29, 2012, 11:07:09 AM »

@imma Y'know, from writing proposals and reviewing a fair amount of the available literature, I  believe that this university survey is a fairly reasonable approach to the study of relatively high functioning borderlines. (Basically, there isn't much literature because it is very difficult to identify and recruit the target population.cool

Sure - you're right - the sample is highly self-selected.  The results will be highly self-selected. They may very well be highly biased.  And - frankly - there's not too much of a guarantee that the surveyed people are answering accurately. If someone figures out a way to do a large study without these limitations - the results from this survey wouldn't qualify as much more than a sanity check.

That said - HF borderlines are very difficult to identify from the general population. (You're recruiting people with personality disorders?  Not me.  I'm fine.)  And, they're a big problem.  The problem with HF borderlines is that they seem to do an awful lot of collateral damage - so studying the impact on those associated with people with this disorder is important.  I strongly suspect that BPDs are far more damaging to those around them than most other mentally ill people.

Nearly any reasonable reviewer would accept an argument along the lines of:
'Yes, the data is limited.  But, well, there's nothing else available and this is a really important problem.'

Now, personally, I'm more interested in impacts on children, prognosis, and economic/medical impacts on spouses.  Ah...interest groups... But, the questions Rachel is asking are still quite interesting and could easily serve as justification for larger - population-based studies.  Well...maybe... I guess you'd need to recruit probably 100+k people taking a long survey MMPI to get a reasonable sampling of BPD caregivers - and - even then - the data would be pretty self-selected.

Only way I've seen to promote that would be offering discounts on marriage licenses to people who take the MMPI. smiley

@Rachel GL with your research and best wishes.  You seem to be working on one of the more difficult to access and important populations of the mentally ill.**

--Argyle
*And, if you know of good studies on HF borderlines - I'd really like to hear about them.
**Oh, and if you're ever discouraged...remember that doing a PhD thesis involves a lot of drudgery and despair.
« Last Edit: March 29, 2012, 11:15:42 AM by argyle » Logged
OTH
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« Reply #28 on: March 29, 2012, 01:53:49 PM »

Staff only

Hi Guys!

I'd like to ask that we focus our comments on the survey questions, options, or lack of questions, options or other comments regarding the content matter of the research.

Comments regarding the design of the sample size, or research bias' are more appropriately handled by the monitoring professor or the peer review. We haven't seen the research objective or the sampling plan.
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« Reply #29 on: March 29, 2012, 03:37:07 PM »

Hi,

On the survey.

I have an 83 year old UD BPD mother and recently had a RS with another BPD person.

The survey kind of missed what I suspect is common for many having a parent or loved one sibling with BPD and then ending up with a BPD partner.

I felt the focus of the test was on the NON and how they were as opposed to anything else.
Having dealt with my mother all my life boundaries are intact and at times like another said we have to step away and if anything be the uncarer ... for self preservation.

What happened with my BPD partner very different and not knowing of BPD despite my mother till post RS ... was different and boundaries were non existant in the main.

Neither of them sought help ... BPD partner thought as they do despite a record of smashed RS and people it was everyone else. Mother ... well she is the same and somewhat milder due to age ...

Healthcare ... my point would be I never had heard of BPD till I sought professional help.
It was like reading a book when I learnt about it. I had developed other means for dealing with my mother.

Specifically healthcare and also being an Australian found it to be very good ... went and saw my local doc and he was great ... got a T ... with 30 years in the field so again no problems there with the system other than never hearing of this PD prior to the breakdown of a RS with someone with 8-9 out of 9 of the BPD criteria.

I suppose its a dream to have learnt about PD's somewhere in 12 years normal school and another 10 uni and post grad ... but like most totally unawares.

Suspect this is the same for many if not most.

Good luck
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« Reply #30 on: March 29, 2012, 04:18:16 PM »

Posters, and OTH, perhaps it would be a suitable alternative if we could start another thread discussing our responses to the survey?
OTH is right, the thread is entitled 'your experiences as a partner' and as such perhaps our contribution as adult children of the BPD isn't what the study is designed to examine.
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« Reply #31 on: March 29, 2012, 06:48:12 PM »

Rachel, There were two questions about health (health and overall health).  Was one supposed to be a rating of our mental health?  I can pass a physical, but it takes me a week to recover from a family get-together.
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Rachel Bailey
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« Reply #32 on: March 29, 2012, 07:24:12 PM »

Hi there,

I am appreciative of all your thoughtful feedback. As this is a developing area of research we are still learning ourselves about how to best capture the experiences of carers/support persons/relatives of a person with personality disorder in a survey format. I understand that some of the questions may not capture your unique experiences, however the use of empirically validated measures prevents me from altering most of the survey without risking the validity of the results.

I hope, however, that you are able to complete the survey as best you can, and that the open-ended questions at the end of the survey provide you with enough space to enlighten us about your opinions and experiences that weren't captured by the standard questions.

I thank you also for the feedback concerning the term "carer/support person". This survey is designed to capture the experiences of carers/support persons/relatives of a person with personality disorder who interact on a regular basis in a supportive relationship. I heard your feedback and have attempted to explain this in the survey as:
'Care/care giving' refers to regular interactions with the person involving tasks to promote the wellbeing and recovery of the relative. Therefore, this could include simply being in a general supportive relationship (rather than "caretaking" in the traditional, practical sense).

Therefore, for those persons who have a relative with a personality disorder who are no longer engaged in a supportive relationship may find some of the questions difficult to answer, yet are encouraged to respond as best they can. Similarly, those who are in a relationship with a high functioning person with personality disorder may not consider themselves "carers" in the traditional sense, yet are likely to be able to respond to the survey in considering the relationship and how it affects you. All opinions and views are valued and I hope that future research will be able to better capture your experiences!

All the best,

Rachel Bailey.
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« Reply #33 on: March 31, 2012, 10:23:27 AM »

It took me 2 seconds!  I was asked "do you have a relative with a personality disorder?"
Answered No.  Done!  He's a Significant Other!
Sheeesh
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sandpiper
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« Reply #34 on: March 31, 2012, 10:14:41 PM »

I have come back to look at the responses here and I had trouble finding it, as this post seems to have jumped around a bit. Initially I found it at the message board for adult children, I think yesterday I saw it in 'articles' and today it's in Staying or Leaving.
Not sure what's going on there.
I think that this survey might get a better response over at the parenting board, as this is the demographic where you are most likely to find caregivers who are dealing with a diagnosed BPD.

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Rachel Bailey
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« Reply #35 on: April 01, 2012, 10:15:02 PM »

Hi there Carri1,

Thank you for taking the time to have a look at the survey.

There is a disclaimer at the start of the survey stating:

"PLEASE READ:
For the purpose of this survey, 'relative' refers to the person with personality disorder that may be a family member or significant other to whom you support.
'Care/care giving' refers to regular interactions with the person involving tasks to promote the wellbeing and recovery of the relative. Therefore, this could include simply being in a general supportive relationship (rather than "caretaking" in the traditional, practical sense)."

Therefore, you are welcome to complete the survey - as your significant other would be considered a "relative" for the purposes of the survey.

Kind regards,

Rachel Bailey.
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Rachel Bailey
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« Reply #36 on: April 01, 2012, 10:20:32 PM »

Hi there SaNPDiper,

Thank you for your comment.

I believe that the thread has moved around due to some confusion regarding the target population of the survey. The survey is not intended for only partners or only parents of a person with personality disorder. Anyone who is in a supportive relationship with another person may consider themselves eligible to complete the survey. This includes parents, adult children, partners/spouses, siblings and significant others (including friends). Further the term "caregiver" is loosly applied in the survey as you need not be a caregiver in the traditional practical sense, rather provide supportive care within your relationship.

I hope this helps to clarify some of the confusion.

All the best,

Rachel Bailey.
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