University of Liverpool and 5 Boroughs Partnership NHS Trust

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1 Stigma, emotion appraisal and the family environment as predictors of carer burden for relatives of individuals who meet the diagnostic criteria for borderline personality disorder University of Liverpool and 5 Boroughs Partnership NHS Trust Jenna Kirtley, Trainee Clinical Psychologist; Prof. Jon Cole (primary supervisor); John Chiocchi (Clinical Advisor); Dr. Mark Sampson (Secondary Supervisor)

2 Aims of Presentation Why I chose this area Background literature Methods Results Discussion Limitations Future research

3 Why I chose this area? Background in working in forensic/complex needs services: Negative attitudes and lack of understanding about personality disorder Personality disorder is mainly about relationships therefore a more systemic approach is needed Focus within this area on formulation with teams, helping develop compassion and understanding. What about families?

4 Why I chose this area? Harmful, negative beliefs about the origins of personality disorder need to be challenged. Carers generally neglected within research and that which does exist is largely in psychosis and bipolar

5 Background literature 13 empirical studies have focused on the impact of caring for a relative with borderline personality disorder (BPD). Carers of persons with personality difficulties experience grief, worry, guilt and feelings of powerlessness. Factors linked to carer distress are: relationship conflict with the person they cared for, financial strain and lack of consistent and adequate support from services. Greater psychological distress, compared to both the general population (Goodman et al., 2011; Scheirs & Bok, 2007) & carers of other mental health problems (Bailey & Grenyer, 2013)

6 Background literature: Expressed emotion Carers of individuals with BPD reported elevated criticism and emotional overinvolvement within the family environment (Bailey & Grenyer, 2014) Higher levels of criticism were associated to greater burden Family environments high in emotional overinvolvement are associated with greater burden for carers (Bailey & Grenyer, 2014) but better outcomes for service users (Hoffman, 1999)

7 Background literature: Stigma Parents were often blamed for the personality disorder psychopathology by mental health professionals and communities (Gunderson et al., 1997) Carers report stigma from professionals, and exclusion from information and discharge planning (Dunne & Rogers, 2013; Ekdahl et al., 2011).

8 Emotion Appraisal Individuals who appraise their emotions as dangerous have a heightened awareness of danger, attempt to avoid emotions, and use maladaptive coping methods (McCubbin and Sampson, 2006) Threat from specific emotions significantly predicted obsessionality in a non-clinical sample. Emotion appraisal was correlated with each of the symptom presentations in OCD (Smith et al., 2012) Association between symptoms of hoarding and a lower tolerance of negative emotions and perceiving negative emotions as more threatening (Timpano & Shaw, 2014).

9 Overview of study Aim: Investigate whether 3 factors: perceived stigma, perceived threat of strong emotions and expressed emotion within the family environment predict carer burden. Rationale: Gaining awareness of what predicts carer burden means we can tailor future interventions to better support carers.

10 Overview of study How? Compared parents and partners of individuals who met the diagnostic criteria for borderline personality disorder to parents and partners of individuals with other mental health problems (control group). So What? Comparison should highlight whether the same interventions can be applied to all carers or whether the focus of interventions will be dependent on specific difficulties and/or relationship with individual.

11 Hypotheses Feeling of judgement from others was reported in previous research on carers supporting someone with a personality disorder. Therefore, high levels of perceived stigma will be associated with greater carer burden compared to control group (and for parents more than partners).

12 Hypotheses Managing intense emotions and witnessing negative consequences, such as aggression and self-harm will result in negatively appraising strong emotions (BPD group) High scores on threat of emotions will be associated with greater carer burden for all groups. However, this is the first study to examine perceived threat from emotions within this population.

13 Hypotheses High expressed emotion (criticism & emotional over involvement) will be associated with greater burden. Relatives of individuals with a personality disorder will have greater levels of expressed emotion compared to relatives of individuals with other mental health problems.

14 Methods A quantitative cross-sectional study Questionnaire design: face to face or telephone Recruited a total of 98 participants Participants were parents and partners supporting someone who either met the criteria of a personality disorder (screening tool used) or another mental health problem (control group)

15 Measures Participants were asked to complete the following measures: McLean Screening Instrument for Borderline Personality Disorder-Carer Version (MSI-BPD-C) Burden Assessment scale (BAS) The Family Questionnaire (TFQ) Devaluation of Consumer Families Scale (DCFS) Perceived Threat from Emotions Questionnaire (PTEQ)

16 Analysis Mann Whitney (non parametric of independent t- tests) to see differences between groups. Spearmans Correlation to see relationship between burden and other variables. The factors will be analysed using a hierarchal regression with carers of individuals with BPD and control group as a binary predictor, following a log transformation.

17 Carer Age Gender of participant Employment Relationship to relative Living with relative Relative s diagnosis Main carer Have children/other children Mode of data collection Female Male Yes No Parent Partner Yes No BPD Mental health problem Yes No Yes No Face to face Phone Percentage 13% 45% 42% 72% 28% 28% 72% 58.4% 37.6% 60% 30% 56.4% 40.6% 32% 68% 70% 30% 73.3% 23.8%

18 Demographics of Care recipient 53.5% male A range of diagnoses were reported by carer including personality disorder, anxiety, depression, bipolar, schizophrenia, PTSD, Schizo-affective disorder, OCD

19 Descriptive statistics Max BAS=76 23 or above high criticism 27 or above high overinvolvement Max Stigma=28 Max PTEQ=35

20 Preliminary findings Data not normally distributed therefore non-parametric equivalent used Four groups were compared using Mann Whitney test (1) Parent BPD group compared to Parent Mental health group (2) Parent BPD group compared to Partner BPD group (3) Partner BPD group compared to Partner mental health group (4) Partner mental health group compared to parent mental health group

21 Preliminary findings: Mann Whitney Burden: Parent BPD group (Mdn=53) experienced significantly higher levels of burden than parent MH group (Mdn=42), U=248, z=-2.94, P<.01, r=-.38 Partner BPD group (Mdn=53) significantly higher burden than partner MH group (Mdn=34.5), U=82, z=-2.60, p<.01, r=-.422 No significant difference between parent and partner for both groups

22 Preliminary findings: Mann Whitney Emotionally over-involved: BPD parent (Mdn=32) were significantly more emotionally over involved than MH parent (Mdn=30) U=304, z=-2.11, p<0.05, r=-0.27 Critical: BPD partner (Mdn=30) experienced significantly higher levels of criticism within the family environment than MH partner (Mdn=24) U=91, z=-2.34, P<0.05, r=-0.38

23 Preliminary findings: Mann Whitney Perceived threat of strong emotions: BPD parent (Mdn=20) significantly negatively appraised strong emotions more than MH parent(mdn=16) U=292.5, z=-2.28, P<0.01, r=-0.29 BPD partner (Mdn=21.5)significantly negatively appraised strong emotions more than MH partner (Mdn=17), U=93, z=-2.28, P<0.05, r=-0.37 Stigma: No significant difference between any of the groups (overall M=18.62; Range 7-28)

24 Preliminary Findings: Spearmans Correlation There was a significant relationship between burden and carer group, r=-.389, p (one tailed) <.01 There was a significant relationship between burden and stigma, r=.287, p (one tailed) <.01 There was a significant relationship between burden and criticism, r=.617, p (one tailed) <.01 There was a significant relationship between burden and emotional over involvement, r=.675, p (one tailed) <.01

25 Preliminary Findings: Spearmans Correlation There was a significant relationship between burden and perceived threat of emotions, r=.257, p (one tailed) <.05 There was no significant relationship between burden and carer relationship to recipient (parent or partner). The results show that all but one variable are significantly related to carer burden. Therefore, only 5 variables will be entered into a hierarchical regression to see if they predict carer burden.

26 Discussion Relatives caring for someone with a diagnosis of BPD experience higher levels of burden than relatives caring for individuals with other mental health needs. This is consistent with past research and the hypothesis. Parents of individuals with BPD are more emotionally involved than parents of individuals with other mental health problems. Partners of individuals with BPD are more critical than partners of individuals with other mental health problems. The relationship to the care recipient had not been explored in past studies on expressed emotion. However, it is a logical finding that parents were more emotionally over involved and partners were more critical.

27 Discussion Relatives of individuals with a diagnosis of BPD are more likely to perceive strong emotions as threatening, which is linked to maladaptive coping strategies. This result supports the hypothesis Carer group (BPD & MH), stigma, expressed emotion and perceived threat of strong emotions were all positively related to burden.

28 Discussion These results suggest that carers of individuals with a BPD diagnosis suffer higher levels of burden, greater levels of expressed emotion and are more likely to negatively appraise their experience of strong emotions compared to relatives of individuals with other mental health problems. This group of relatives have previously been overlooked and this research highlights the need to increase support.

29 Clinical implications Interventions could focus on managing strong emotions and complex interpersonal dynamics to reduce the high levels of expressed emotions and the negative appraisal of strong emotions. DBT might be a helpful intervention (Hoffman, 2005; 2007: evaluated a programme called Family Connections, based on the strategies of DBT) Parents and partners may be offered the same intervention because the relationship showed no difference

30 Limitations No qualitative element even though lots of participants gave feedback on their experiences including that services had not offered adequate support Controlling for those with current or previous support vs those with none Some participants did not consider themselves to be in a caring role as their relative was currently well Carer s own mental health not assessed Carers pre-morbid mental health. Was the caring role the cause?

31 Limitations Bipolar and BPD yield similar results on the Mclean screening. Those who have additional support from friends and family vs those with none Only focused on perceived stigma not internal stigma Comorbidity not addressed

32 Future Research Stigma was identified by carers as an important factor, however; there was there not a significant result? Perhaps the measure was not the best to explore this concept. Developing a stigma measure Exploring stigma (internal and external) What other factors could predict carer burden for this group of carers? Pilot a programme designed specifically for these carers-what does the evaluation tell us?

33 Whose research is it anyway? Co- Production This research was co-produced with John Chiocchi, who is an expert by experience (and here today-give him a wave! ) We need to focus more on co-produced research to make it meaningful People know what they want, what they struggle with, what would make things better for them (they are the experts!) And.. we have the skills to do research that can support what they are asking us to do so let s work together!

34 Go check out my poster! Exploring psychological and interpersonal factors accounting for distress in family caregivers of individuals with personality difficulties: A systematic review

35 References Bailey, R. C., & Grenyer, B. F. S. (2013). Burden and support needs of carers of persons with borderline personality disorder: A systematic review. Harvard Review of Psychiatry, 21(5), Bailey, R. C., & Grenyer, B. F. S. (2014). Relationship between expressed emotion and wellbeing for families and carers of a relative with borderline personality disorder. Personality and Mental health, 9(1), Dunne, E., & Rogers, B. (2013). It s us that have to deal with it seven days a week : Carers and borderline personality disorder. Community Mental Health Journal, 49(6), Ekdahl, S., Idvall, E., Samuelsson, M., & Perseius, K.-I. (2011). A Life Tiptoeing: Being a Significant Other to Persons With Borderline Personality Disorder. Archives of Psychiatric Nursing, 25(6), e69 e76. Goodman, M., Patil, U., Triebwasser, J., Hoffman, P., Weinstein, Z. A., & New, A. (2011). Parental burden associated with borderline personality disorder in female offspring. Journal of Personality Disorder, 25(1), Gunderson, J., Berkowitz, C., & Ruiz-Sancho, A. (1997). Families of borderline patients: A psychoeducational approach. Bulletin of The Menninger Clinic, 61(4), Hoffman, P., Fruzetti, A., Buteau, E., & Struening, E. (2005). Family Connections: Programme for relatives of persons with a personality disorder. Family Process 44(2): Hoffman, P., Fruzetti, A., & Buteau, E. (2007). Understanding and engaging families: An education, skills and support program for relatives impacted by borderline personality disorder. Journal of Mental Health, 16 (1),

36 References McCubbin, R. A., & Sampson, M. J. (2006). The relationship between obsessive-compulsive symptoms and appraisals of emotional states. Journal of Anxiety Disorders, 20(1), Reinhard, S. C., Gubman, G. D., Horwitz, A. V., & Minsky, S. (1994). Burden assessment scale for families of the seriously mentally ill. Evaluation and Program Planning, 17(3), Scheirs, J. G. M., & Bok, S. (2007). Psychological distress in caretakers or relatives of patients with borderline personality disorder. International Journal of Social Psychiatry, 53(3), Smith, A. H., Wetterncek, C, T., Hart, J. M., Short, M. B., Bjorgvinsson, T. (2012). Differences in obsessional beliefs and emotion appraisal in obsessive compulsive symptom presentation. Journal of Obsessive Compulsive and Related Disorders, 1, Struening, E. L., Perlick, D. A., Link, B. G., Hellman, F., Herman, D. B., & Sirey, J. A. (2001). The extent to which caregivers believe most people devalue consumers and their families. Psychiatric Services, 52, Timpano, K.R., Shaw, A.M., Cougle, J.R., & Fitch, K.E. (2014). A multi faceted assessment of emotional tolerance and intensity in hoarding. Behavior Therapy 45(5). Wiedemann, G., Rayki, O., Feinstein, E., & Hahlweg, K. (2002). The Family Questionnaire: Development and validation of a new self-report scale for assessing expressed emotion. Psychiatry Research, 109, Zanarini, M. C., Vujanovic, A. A., Parachini, E.A., Boulanger, J. L., Frankenburg, F. R., & Hennen, J. (2003). A screening measure for BPD: The McLean Screening Instrument for Borderline Personality Disorder (MSI-BPD). Journal of Personality Disorders, 17(6),

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