Exploring Intimacy after Traumatic Brain Injury (TBI) for TBI Survivors and T heir Partners

1. Exploring Intimacy after Traumatic Brain Injury (TBI) for TBI Survivors and Their Partners Nina Robins, Ph.D. Funded through NIDRR Rehabilitation Research and Training Center on Community Integration of People with TBI (Grant #H133BO31117)

2. PRESENTATION OUTLINE Introduction Literature Review Statement of Problem Design Methods Results Discussion

3. TRAUMATIC BRAIN INJURY (TBI) DEFINITION: “Alteration in brain function, or other evidence of brain pathology caused by an external force” -- Brain Injury Association of America (BIAA, 2012)

4. IMPORTANCE OF TBI RESEARCH SOCIETAL - 1.7 million people sustain TBI annuallyand 235,000 people are hospitalized in the US CLINICAL - Discrepant rehabilitation priorities - Ineffective intervention models - Limited assessment of relationship DISABILITY STUDIES SCHOLARSHIP PERSPECTIVE - Virtually no TBI research informed by a disability studies perspective PERSONAL CONCERN - Many people with TBI struggling to reconstruct relationships

5. REVIEW OF THE LITERATURE LOSS AND CHANGE Impairment related - Rolechange for partner - Survivor not the same person - Loss of pre-injury selves or “void” Socially constructed - Disabled people asexual or sexually deviant - Creation of barriers to access - Loss of self “in the eyes of others” - Health professionals’ low expectations

6. STRESS AND BURDEN THEMES Increased responsibility Partner’s pre-injury functioning Perceived support related to stress Temporal aspects mediating stress - Relationships get worse with time - Relationships do better with time

7. INTIMACY (in general) RESEARCH Communication matters Reciprocal Support

8. GENDER DIFFERENCES AND INTIMACY Offering “positive event” support Verbal communication versus proximity Sexual identity more positive with women than men

9. GENDER DIFFERENCES IN TBI and INTIMACY Women partners struggle more than men partners Sexuality self-confidence and identity Loss of marital vulnerability Role shifts for uninjured wives

10. SOCIAL SUPPORT AND REHABILITATION RESEARCH General problems with TBI support and services - Limited, disjointed, unresponsive - TBI not understood or well-represented Gaps in TBI rehabilitation support - Focus on medical and functional independence - Family not part of rehabilitation Sexuality and intimacy support in context of TBI - Professionals not comfortable about topic -Training and education facilitate comfort with sexuality issues

11. SOCIAL SUPPORT AND REHABILITATION RESEARCH (continued) TBI peer mentor and training support interventions - Mentorship promotes coping strategies - Mentor program improves perception of support Frameworks to guide TBI relationship intervention - Strength based strategies - Transformed selves Socio-politically oriented social support - Diverse cultures - Complex conceptualization of support

12. PROBLEMS IN PAST RESEARCH Limited first hand perspectives Personal relationships after TBI viewed in terms of negative outcomes Lack of diverse representation Few studies examining relationship stability Little examination of both partners as a cohesive "unit” Intimate/sexual identity lacks exploration Limited examination from theoretical frameworks Limited socio-political perspective

13. PRIMARY RESEARCH QUESTIONS • How does the experience of TBI affect intimate relationships of TBI survivors and their significant others? • What does intimacy mean to each individual in the aftermath of TBI? • What factors lead to positive or negative relationship outcomes? What are the barriers or facilitators or supports that make a difference in the experience of intimacy? • How do survivors’ and uninjured partners’ experiences compare and contrast with each other?

14. SECONDARY RESEARCH QUESTIONS 1. How is the experience of the intimate relationship stable or changing for both partners, and what factors contribute to that stability or change? 2. How is identity as an intimate partner after TBI affected for survivors and partners? 3. How do social reactions from significant others and family members, acquaintances, professionals, and media images affect intimacy experiences after TBI? 4. What recommendations do survivors and partners suggest for improved clinical and community supports that are helpful to their adjustment process?

15. THEORETICAL FRAMEWORKS Social model of disability (Anderson & Kitchin, 2000; Shakespeare et al, 1996; Tate & Pledger, 2003) Family systems (Laroi, 2003; Vangel et al., 2011) & secondary trauma (Goff et al., 2006; Mills & Turnbull, 2004) Social support (Vangel et al., 2011; Ergh et al, 2002; Magasi & Hammel, 2004; Chenoweth & Stehlik, 2004; Hibbard et al., 2002; Struchen et al., 2011)

16. METHODS • Research Design Two year qualitative study -- phenomenological as explained by Taylor & Bogdan (1998): open and capturing experience • Elements of emancipatory research (Priestly, 2003) • Multiple qualitative methods Data collected through in-depth, semi-structured interviews – initial and follow-up; an exit focus group conducted for additional data, reflections on the process, and member checking.

17. RECRUITMENT PROCEDURES • Distribution of research announcements • Recruitment through rehab liaisons, TBI support organizations, presentations to TBI groups and • word-of-mouth “snowballing”

18. Demographics of participants Participants with TBI Partners (n=13) (n=13) Female 4 10 Male 9 3 Age y; mean(median)(range) 37.61 (38) (23-64) 38.38 (38) (26-66) White (non-Hispanic) 11 10 Black 2 2 Hispanic 0 1 LGBT 1 1 Not married 4 4 Married 9 9 Length of relationship <5 y 6 6 >5 y 7 7 Relationship begun Prior to TBI 9 9 After TBI 4 4 Yrs post-TBI: mean(median) 5.69 (3) -

19. INTERVIEW GUIDE DEVELOPMENT Domain of questions -Factors supporting and challenging intimacy -Attitudes about others’ understanding of TBI/disability -Identity as person with TBI or partner to TBI survivor -Perceptions of people with disabilities: changed or same since TBI -Experiences with healthcare/professionals Utilization of TBI Advocates: Research Consultants to ensure relevance of study Two TBI advocates in community acted as research consultants during creation of interview guide questions to assure questions were relevant to research topic, respectful and clear to prospective participants Follow-up Interviews -Review of initial interviews -Exploration of temporal factors affecting intimacy -Focus groups -Separate focus groups for survivors and partners -Review of themes and concepts

20. DATA MANAGEMENT AND ANALYSIS • Transcription and organization of data • Grounded theory framework of analysis (Miles & Huberman, 1994) • - One page summaries and reflective memos • - Reduction and refinement of themes, search for contradictory points of views, negative cases • - Thematic analysis audited by advisor

21. MAJOR THEMES and Sub-themes Meanings of Intimacy All encompassing, sex/physical, sharing, caring for each other Barriers to Intimacy For survivors: Injury related changes, guilt (letting partner down sexually, not pulling fair weight with responsibilities). For partners: Survivor “not the same person,” role conflict, communication difficulties. Factors supporting Intimacy For survivors and partners: Good communication. For survivors: Partner “like a rock,” partner sticking with them “in good times and bad,” partner as mentor, understanding. For partners: Receiving reassurance of partner’s love, supportive family.

22. MAJOR THEMES and Sub-themes Loss and Reconstruction Loss: For survivors and partners: Friends, professional or educational goals. For survivors: Loss of roles and routines. Reconstruction: For survivors: Change for the better, “moving on”/acceptance of changes. For partners: Resignation to “new” relationship, personal metamorphosis. Social and Interpersonal Attitudes For survivors: Ignored, stared at, abilities underestimated; but sense of community, increased understanding based on own experiences. For partners: Avoidance, misunderstanding, exploitation; but opportunity to advocate/educate, increased compassion and empathy. For survivors and partners: Negative media portrayals; fuller appreciation of complexities of disability

23. MAJOR THEMES and Sub-themes Health-care Services and Professionals Negative experiences: Lack of intimacy services, inadequate supports for partners and families, lack of knowledge of TBI and intimacy. Positive experiences: Providing forum to talk as couple, providing advice and information about resources. Recommendations: Professionals need to take initiative to address intimacy, professionals need increased knowledge base of TBI, intimacy counseling for couples, support groups, long-term network of support and TBI education, provide research opportunities to share personal experiences.

24. Meanings of Intimacy All encompassing “Intimacy is much more than physical. It’s the inner core” (survivor) “Intimacy, to me, is not only a physical aspect but also emotional and mental aspects to relationships” (partner)

25. Barriers physical changes “…not being able to give him a real hug…even just like kisses. Because my right side has been affected I’m not even able to give him a kiss, like a real kiss…” (survivor) cognitive and physical changes “A lot of the guys I go to therapy with were sort of blue collar guys, and were supposed to be at work and fixing the car and carrying your wife upstairs in your arms and these macho things and paying the bills and before I crashed they called me ‘the grand poo bah’ from the Flintstones, you know? I’ve got a shirt and everything. I ain’t the ‘grand poo bah’ anymore. And that’s really disheartening.” (survivor)

26. Barriers cognitive and emotional changes “He’s a different person, you know...it’s like being married to a different man… Different things that he used to do he doesn’t remember, he has no clue about it… and that’s very unsettling.” (partner) “I think an intimate moment is one where you pour your heart out. And, we can’t do that anymore…It’s the lingering and holding…we don’t have that anymore and that’s what I miss the most…We have the intimacy, but it’s not, and it is close. But it has a different quality to it. And the quality that I so greatly miss because that’s why I chose him. We were such good partners.” (partner)

27. Supports to intimacy Communication “ Sometimes we don’t agree on the same idea that we keep talking about it… until finally, which may take maybe a day or two…That we always just keep talking about it, talking about it, talking about it until we get the final solution.” (survivor) Affirmation of love/appreciation from survivor “It’s that moment he can tell me he loves me” (partner) “I find satisfying that [he] tells me, and he makes sure that he tells me every single day that he loves me, every day…’I love you and thank you for taking care of me’…” (partner)

28. Transformation/reconstruction Choose to go forward “It’s very strong because he feels that it’s very strong…and, if that’s all he can give me, I’ll take that… And I will make our new relationship because I have a new life now…Even though I know deep inside that it’s not what we used to have, but I choose not to dwell because I’m choosing to go forward.” (partner)

29. Social and interpersonal attitudes Abilities underestimated “Because word has obviously spread around that I’ve had a brain injury… everybody will look at you like something is going to come out of your mouth weird, and that’s because you’ve got a brain injury.” (survivor) Media misconceptions impacting general public “You can understand from the movies that the public is not very understanding…I don’t think that you really get an impact of what reality is about or what couples are really facing…” (partner)

30. Healthcare services/professionals Lack of services “Yeah, nobody ever did a thing…I had to find these things out on my own. There were basically no services about the relationship issues” (survivor) Need for relationship support “Even if the patient may be a little shy or doesn’t feel that they want to really talk about it…during this time you never think that that is something that should be addressed. You need that support…and I think that if you can get that support early on, I think that makes a big difference…” (partner) “…my greatest concern was…his cognitive ability to be intimate with me…I couldn’t understand exactly where his abilities were. So I think that’s something that no one really talks about…and that was one thing that really kind of hung over me all the time” (partner)

31. FOLLOW-UP INTERVIEWS AND FOCUS GROUPS RESULTS • Follow-up (differences/additions of themes) • - Reinforcement of initial themes • - Emphasis on adaptation, transformation • - Realization of lengthy process of adjustment • - Learning to adapt and accept • - Working on improving dysfunctional communication • - Benefits of counseling • - Further conviction in importance of long-term supports • - Uncertainty of what future would bring to relationship • Focus Groups - Camaraderie of group • - Supporting each other • - Benefits of this type of research

32. Follow-up Ongoing Loss “…it’s just that he has a life of his own that I’m not part of…When he goes to work…he’s with the people from work and I’m just not part of that. I can understand that because it’s just not part of my life anymore…” (survivor) “I only have one best friend and she’s as good as a family member…But, we’ve lost everybody else…” (partner)

33. Acceptance • of self • “…I have a disability, there’s no changing that. I’ve been through a lot so accept that….Life don’t stop because you have a disability…It’s just a challenge…It took time and patience and therapy to understand that…It made me a wiser person” (survivor) • of changed relationship “Life goes on so what you have to do is keep walking…How can you be intimate with someone until you learn and understand and take that challenge of trying to just accept them for all the changes that have gone on in your life?” (partner) “It doesn’t get better…it gets better because you know how to deal with things” (partner)

34. Need for Ongoing Supports “I think beyond is so important. Because you’re so overwhelmed at the time…you should be followed up 1 year, 2 years, 4 years down the line--it doesn’t exist…follow-up.” (survivor) “Our medical community is lacking in the post-traumatic brain injured patient and family of any type of follow-up….Who am I going to call if I have trouble with intimacy?…those are the key elements that are missing here…” (partner)

35. Uncertain Future “…we don’t know what the future holds. We don’t know what tomorrow’s going to bring. It’s just an everyday experience…” (partner) “I’ve disconnected myself somewhat…I’m not giving up, but it is what it is and let’s see where it goes…” (partner)

36. Benefits of This Type of Research “It’s nice that you guys are very understanding…The questions aren’t crazy. They’re very simple and very basic questions…And, so it’s nice the way that we have the conversation that you and I are having…” (survivor) “It’s good to talk to other people objectively…because there may be things that I want to talk about but I can’t talk about then with [him]...So, it’s good to just talk. It really is.” (partner)

37. Focus Groups Benefits of talking to and supporting each other “It’s very important to have separate support groups for partners and survivors. If you get with your husband or wife, you might hold back on saying something, but, just with us, you might be more open to talking about things.” (survivor) “It’s good to hear you say that things got better with you and your husband. That gives me hope.” (partner)

38. DISCUSSION • Change is a dynamic and complex process • - Supported literature but also extended it with evidence of positive changes • - Participants reporting their experiences at different points in time • allowed for more demonstration of cohesion, hope in future • Communication • - Supported intimacy literature • - Few exceptions to men partners more positive • Sexual expression and sexual identity • - Men survivors have more self-confidence issues • - Same sexed couple reporting more difficulties with disclosure • versus physical expression • - Women seek disclosure more than men

39. DISCUSSION(continued) • Enhanced understanding of family systems and secondary trauma theories in TBI research - Family systems and secondary trauma not previously applied to TBI and intimacy research • - Reciprocity of one partner affecting the other supported these theories • Supported conceptual strategy findings: -Transformed selves/reconstructing: survivors and partners spoke about re-creating lives • Extended ideas about partner vulnerability and support - partner affected by support of survivor • Challenged gender differences and adjustment literature • - gender specific caregiver attitudes more complex • - contrasting reactions from 2 men partners reflects complexities in • responses as contrasted to literature

40. DISCUSSION(continued) • Relationship stability • - some couples had more challenges • Social support • - peer mentor and support programs • - conflicting responsibilities obstruct access to supports • - need more complex conceptualization of support • Societal attitudes • - supported literature regarding negative attitudes and inadequate understanding of TBI

41. Limitations of Study Cannot generalize from small-sample, qualitative study. Readers can judge how transferable these findings may be to other individuals in other settings and then test that through research. Potential for subjective bias in interpreting qualitative data; focus group feedback and audit of the thematic analysis helped to address this concern. Even though the sample reflected more diversity than in other studies, there was still low representation of LGBT, Hispanic, Asian, and Native American communities. Did not address the issues of survivors with very severe TBIs leading to even more cognitive impairment

42. Recommendations for Future Research Studies exploring intimacy w/ larger or targeted samples Exploration of change as a complex and dynamic process--longitudinal studies Exploration of pre-injury psychological well-being of partners, positive coping behaviors, and perceived satisfaction with social support to identify characteristics fostering intimacy Examination of post-injury coping and reserves of strength of couples

43. Implications for Clinical Application More comprehensive relationship support and TBI education in health professions Both partners affected by TBI and should be addressed as a complex team in rehabilitation Relationship counseling, education re: negotiating new roles and responsibilities, sexuality and intimacy, accessing practical and emotional support Targeted training to facilitate social communication skills between partners

44. SUMMARY Major findings of this research - Intimacy after TBI complex process - Couple as a “unit” - Positive as well as negative aspects of intimacy after TBI - Communication key factor to positive intimate relationships - Increased TBI education needed at societal and healthcare levels - No intimacy services provided - Couples desire services initiated by healthcare providers - Some couples may be at increased risk for relationship fragility - Priorities of healthcare professionals not compatible with a disability studies perspective

45. Future Steps/Goals Ongoing research on intimacy and TBI Development and implementation of education and training programs Creation of couple interventions and supports Collaboration at community level to design supports 5. Social policy and reform for people with disabilities