UNIVERSITY RESEARCH PROJECT: Your experiences as a support person

[sandpiper]

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.

[Hermione]

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.

[Rachel Bailey]

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.

[Carri1]

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

[sandpiper]

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.

[Rachel Bailey]

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.

[Rachel Bailey]

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.

[Rachel Bailey]

In 2012, I contacted you in regards to including a link to my survey on your website. I am writing to advise you of the outcome of this research. The survey aimed to explore the unique burden of carers or support persons for people with personality disorder as part of a larger PhD research project linked with the Project Air Strategy for Personality Disorders (www.projectairstrategy.org).

Two publications arose from the results of the survey. I have included the abstracts (summary of the findings) and a link to the full articles below:

Supporting a person with personality disorder: A study of carer burden and well-being

Personality disorders are characterized by impaired interpersonal functioning. There are few studies and little data available using validated questionnaires on the impact of caring for a person with personality disorder. The 287 carers included in this study were administered the McLean Screening Instrument for Borderline Personality Disorder - Carer Version, Burden Assessment Scale, Grief Scale, Difficulties in Emotion Regulation Scale, Mental Health Inventory–5, and a qualitative question. Scores were compared to those of published comparison groups. Burden and grief were significantly higher than that reported by carers of persons with other serious mental illnesses. Carers endorsed symptoms consistent with mood, anxiety, and posttraumatic stress disorders. A qualitative concept map highlighted the impact of caregiving on the interpersonal environment. Carers of persons with personality disorder report grieving their change in life and impairment in well-being. Carers are burdened, and appear more so than carers of persons with other serious mental illnesses. The results highlight the need for interventions to support carers.

This article can be located at: www.ncbi.nlm.nih.gov/pubmed/24689763

You can also view a presentation of these results: www.youtube.com/watch?v=e5HBHDWHIHQ

The relationship between expressed emotion and wellbeing for families and carers of a relative with Borderline Personality Disorder

Background – Previous research has found that family environments high in expressed emotion, in particular emotional overinvolvement, are beneficial to the clinical outcome of patients with Borderline Personality Disorder (BPD).

Aim – This study aims to investigate the relationship between expressed emotion, carer burden and carer wellbeing.

Method – A total of 280 carers of a relative with BPD were administered the McLean Screening Instrument for BPD – Carer Version, The Family Questionnaire, Burden Assessment Scale and Mental Health Inventory.

Results – Carers reported family environments high in expressed emotion, particularly criticism (82.9% of carers) and emotional overinvolvement (69.6%). Elevated emotional overinvolvement was correlated with higher burden and mental health problems.

Conclusions – Elevated criticism and emotional overinvolvement in family environments represent a dynamic involving high conflict, anxious concern, overprotection and emotional closeness. The findings suggest that carers may benefit from intervention and support options considering the challenged interpersonal dynamic, burden and impaired carer wellbeing reported in this study.

This article can be located at: www.ncbi.nlm.nih.gov/pubmed/25195577

You can also view a powerpoint presentation of these results: ihmri.uow.edu.au/content/groups/public/@web/@ihmri/documents/doc/uow140677.pdf

We hope that these publications add to the international knowledge and appreciation of the carer struggle and increase support options offered to carers of persons with personality disorder.

Please do not hesitate to contact me should you require more information. As you may be aware, copyright issues restrict authors from sharing the full article on websites – however authors are able to send full articles to interested individuals. Therefore, if any of the bpdfamily carers would like a copy of the full articles, please have them contact me directly by email (rcb805@uowmail.edu.au) and I will reply with the articles as PDF’s.

Please also take the opportunity to view the Project Air Strategy website (www.projectairstrategy.org) which contains information on latest research, conferences and events, and helpful resources for families and carers, consumers and mental health professionals that can be downloaded freely.

All the best

Rachel Bailey

BA-Psych (Hons), PhD (Clinical Psychology) Candidate / Associate Research Fellow

Project Air Strategy for Personality Disorders