Unveiling Hidden Truths: IPV-Related TBI in Women

1. Exploring the lived experience of survivors: The link between intimate partner violence (IPV) and traumatic brain injury (TBI) Chantele Joordens PhD student, PhD in Health program Dalhousie University

2. MITACS Accelerate grant • Partnership project between the University of Victoria & The Cridge Centre for the Family

3. Intimate Partner Violence (IPV) and traumatic brain injury (TBI) • 1/3 of all women will experience IPV at some point in their lives (NCADV statistics). • 92% of women who have experienced IPV report blows to the head, face, and neck, with 40% of these resulting in a loss of consciousness (Jackson et al., 2002). • One study of Chinese women living in Hong Kong found that head, neck, and face injuries were the most commonly documented injuries in IPV cases (Wong et al., 2014).

4. IPV and TBI • Valera & Berenbaum (2003) found that ¾ of their sample of women who had experienced IPV had also experienced at least one TBI at the hands of their partner. • 1/2 of their sample had experienced more than one TBI. • In 2016 it was estimated that 23 million women in the United States are currently living with an IPV-induced TBI (St. Ivany and Schminkey, 2016) • But, what constitutes a TBI?

5. Traumatic Brain Injury (TBI) • “A patient with mild traumatic brain injury is a person who has had a traumatically induced physiological disruption of brain function, as manifested by any period of loss of consciousness; any loss of memory for events immediately before or after the accident; any alteration in mental state at the time of the accident (e.g., feeling dazed, disoriented, or confused); and any focal neurological deficit(s) that may or may not be transient” (American Congress of Rehabilitation Medicine, 1993, p. 1).

6. Gaps • There needs to be more collaboration among the fields of IPV and TBI research, specifically, a necessity for interdisciplinary research (Hunnicutt et al., 2016). • Lack of awareness by healthcare practitioners about the frequency of TBIs in women who have experienced IPV (Jackson et al., 2002). • Lack of proper screening tools to screen a TBI with this population (Goldin et al., 2016).

7. Objectives • Main objective: semi-structured interviews to investigate women’s experiences with IPV-related TBI. • Through this research, I hope to provide an educational opportunity to better inform frontline workers and first responders who work directly with these women by garnering a more in depth understanding of the day-to-day challenges that these women face. • Secondary objective: to test the Valera Brain Injury Assessment Interview. • Because the currently used TBI screening tools are not specific for women who have an IPV-related TBI, it is important to test a new suitable option.

8. Methods • Step 1: 10-minute TBI pre-screening Interview for inclusion in the study • Modified HELPS questionnaire

9. Modified HELPS

11. Methods • Step 2: Qualitative interviews with 6 women from second stage supportive housing • 2 hour in-person interviews with 3 parts • (a) 2 self-administered scales: CESD-R and PCL-5 • (b) Valera Brain Injury Assessment Interview • (c) Semi-structured interview questions

12. PCL-5 • PTSD checklist for DSM-5 • 20 item, self-report Likert-type scale asking about feelings in the past month • Reference: Weathers, F. W., Litz, B. T., Keane, T. M., Palmieri, P. A., Marx, B. P., & Schnurr, P. P. (2013). The PTSD Checklist for DSM-5 (PCL-5) – Standard. [Measurement instrument]. Available from http://www.ptsd.va.gov/

14. CESD-R • “Centre for Epidemiologic Studies Depression Scale – Revised” • 20 item, self-report Likert-type scale asking about feelings in the past week Reference: Eaton, W. W., Smith, C., Ybarra, M., Muntaner, C., Tien, A. (2004). Center for Epidemiologic Studies Depression Scale: review and revision (CESD and CESD-R). In ME Maruish (Ed.). The Use of Psychological Testing for Treatment Planning and Outcomes Assessment (3rd Ed.), Volume 3: Instruments for Adults, pp. 363-377. Mahwah, NJ: Lawrence Erlbaum.

16. Valera IPV Brain Injury Assessment Interview • 30-40 minute open ended questions about head injuries caused by a partner • If the person answered ‘yes’ to any of the questions, the same follow-up questions about specifics of the incident, were asked.

17. 1. After anything that your partner has ever done to you, have you ever lost consciousness or blacked out? (If yes...) • 2. After anything that your partner ever did to you, did you ever feel dizzy...? (If yes...) • 3. After anything that your partner ever did to you, did you ever feel stunned, really disoriented or have the sense of not knowing where you were or what time it was? (If yes...) • 4. After anything that your partner ever did to you, did you ever "see stars or spots"...? (If yes...) • 5. After anything that your partner ever did to you, did you ever have any problems remembering things that happened right before or after that happened? (If yes...) • 6. After anything that your partner ever did to you, did you ever have to go to the hospital? Did you ever feel that you should have gone to the hospital even if you didn't go to the hospital?

18. Open interview questions • Demographics • Past services received (if any) • Services they would have liked to receive • If their TBI or other injuries (physical, emotional) have affected their day-to-day life (and how) • If their TBI has affected their experience within the legal system (and how) • Whether they knew if their abusive partners may have sustained a TBI • Anything they would like frontline workers to know to better support them

19. Results • Demographics • PCL-5 • CESD-R • Valera Brain Injury Assessment Interview • Potential themes

20. Demographics • 6 women sampled, total of 5 complete results • Malfunction with recorder for 1 interview • Age range: 35 – 64 • Most were living at the Cridge Centre in Supportive Housing • All women made less than $20,000/year. Only one worked part-time and the rest were on disability or income assistance. • Most women were taking a course or upgrading a past course. • All women had children but some did not have strong relationships with their children

21. PCL-5 and CESD-R PCL-5 • All women scored higher than the provisional PTSD diagnosis (>33), with scores ranging from 43 - 74 CESD-R • All women scored above the threshold for depression symptoms (>16) with scores ranging from 19 - 52.

22. Valera Brain Injury Assessment Interview Interviews scored based on: (1) frequency (# of brain injuries reported) (2) Recency (how long ago since most recent brain injury) (3) Severity (based on the duration of reported loss of consciousness and/or post-traumatic amnesia) • Scores ranged from 2 - 5 (8 pt. scale) • All women reported multiple TBIs, sometimes once per week for many years, with varying recency and severity (ranged from ‘no black outs’ to ‘hours of black outs’).

23. TBI recurring themes • Many women reported not having a good memory, or not being able to think straight; being disoriented or forgetting what they were doing in the middle of a task. • There were many reports of choking/strangulation; being hit in the head or temples specifically; having their head shoved against a wall or the ground; being shaken. • There were multiple accounts of mood swings they did not understand, having people tell them they aren’t acting like themselves, and having difficulty functioning under stress.

24. Descriptions of the feeling of a TBI • “It felt like my brain had smushed against my skull. Like it went splat, and then an aura of numbness in my gums. Also a buzzing. My nerves were damaged, tissues freaking out, causing an adrenaline rush, making me sick to my stomach”. • “… seeing red, and weird stuff”. • “… excruciating headache for 24 hours. I remember thinking I was going to die from the pain. I remember trying to sleep and people coming to my room, I thought I was dreaming, but I think it was a vision”.

25. Interview recurring themes • Pregnancy: Many women reported violence during pregnancy, and specifically violence to the abdomen. For some women this was when the violence first started. • “My children’s dad also um… like, picked me up when I was pregnant, and smacked – like picked me up and slammed me down. So I like fell on my bottom, and um, the baby’s head was engaged in here”. • Detachment: out of body experiences, detaching from oneself and having to pull yourself back to your body after the attack. • “…you have difficulty to… to ah… to come back to yourself. It’s like a detachment too. It’s like you’ve been detached. And it’s like, it’s difficult to come back”. • “….because ah, trauma can be almost an out-of-body experience. So… having a person on the phone to connect in with can really put you back together”.

26. Shame: Multiple reports or feelings of shame associated with the abuse • “He hit me in the belly. And I fell down. And I feel ashamed I remember. It’s like, you know, the thing about shame? It’s like, being ashamed that you’re not even human. You feel like less than a human”. • Plans to leave: 2/6 women reported saving change from groceries over several months in order to have money to leave. • “So I kind of learnt to like, when he was around and things were good, to like, at the grocery store, take cash back”. • Childhood trauma: Almost all women reported experiencing trauma when they were younger • “I’ve been exposed to domestic violence since infancy. I was exposed to violence my whole life. Um, so it seemed normal”. • Isolation: All women reported feeling isolated and alone. • “The damages sustained just um, puts um, stops like. Because you go into shock and then repair, and then it’s like the whole world falls away. And then it’s really hard to connect back in”.

27. Partners with TBIs: All women suspect that their previous abusive partner(s) were also victims of brain injury. • “We never talked about it but, one time he shaved his head and he had so many scars all over his head”. • Awareness: Some women reported incredible awareness at finding out their partners had previous head trauma. • “I blamed myself, all my life. There must be something wrong with me, because everybody blamed me. But not anymore. It wasn’t me”. • “I feel, you know what? That has lifted years and years of blame off of me. Like it’s gone! Like I feel like this heavy burden is gone, it lifted from this information you’ve given me! It’s like, this makes me really, really happy”. • Satisfaction with services: Half the women reported good luck in seeking out services, and always finding what they needed when they needed it.

28. Recurring violence: All women reported multiple abusive partners. • Hopelessness: Among the older women interviewed, there was a sense of hopelessness, of not seeing the point in setting future goals. • “I used to think I wanted to live until 95 or 100. And now I’m wondering if I’ll make 70”. • “Incompetence”: Seeing emergency room doctors (if they were able) and having doctors not ask about what happened or how it happened, not providing much support, and “letting her go back to her abusive partner”. • “…it’s the first doctor that ever said, ‘Well at least you had the self-esteem to stand up for yourself. Do you want to press charges?’”

29. Services they would like to receive • Trauma-informed care (counseling) • First responders with lived experience who will understand them and believe what they are saying • More visibility of services for IPV and TBI. • School programs for kids that teach them about family violence so they have a space to talk about it if it is occurring at home. • A support group for women with children, specifically, so that there is less isolation and the kids have each other. • Less delay in services. Everything takes so long to get into, but sometimes you need help right away.

30. What they would like healthcare professionals to know • “We are the experts on ourselves. If we’re coming to you, asking for help, it’s because we need it. Listen to us.” • “Just because I look like I have it together, and I smile and am happy, doesn’t mean that I am. We don’t need to be judged. We need empathy”. • “Legal implications for men who hurt women need to be stricter. They can’t get away with it”. • “Training for first responders and judges to know what to look for. It’s not always physical abuse. It’s not always physical evidence. I think a lot of us slip through the cracks and become re-traumatized from a system that doesn’t protect us”.

31. Final thoughts • TBI is extremely hard to diagnose. • Symptoms differ so drastically. • Many scans don’t pick up brain injuries • Current screening tools aren’t appropriate • Women need more services, or at least visibility and accessibility of these services • First responders (ER doctors, paramedics, police) need to receive training around IPV and TBI to better serve these women. • Also more empathy and understanding from frontline workers • The legal system should be a source of support, not re-traumatization for women.

32. Next Steps • More multidisciplinary research! • More attention and awareness of IPV-related TBI • Practical toolkits created for first responders and frontline workers to better understand and support people with IPV-related TBI.

33. Questions? Thank you!