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)
PRESENTATION OUTLINE
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Introduction
Literature Review
Statement of Problem
Design
Methods
Results
Discussion
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)
IMPORTANCE OF TBI RESEARCH
 SOCIETAL
- 1.7 million people sustain TBI annually and 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
REVIEW OF THE LITERATURE
1) LOSS AND CHANGE
 Impairment related
- Role change 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
2) STRESS AND BURDEN THEMES
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Increased responsibility
Partner’s pre-injury
functioning
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Perceived support related to stress
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Temporal aspects mediating stress
- Relationships get worse with time
- Relationships do better with time
3) INTIMACY (in general) RESEARCH
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Communication matters
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Reciprocal Support
4) GENDER DIFFERENCES AND
INTIMACY
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Offering “positive event” support
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Verbal communication versus
proximity
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Sexual identity more positive with
women than men
5) GENDER DIFFERENCES IN TBI and
INTIMACY
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Women partners struggle more than
men partners
Sexuality self-confidence and identity
Loss of marital vulnerability
Role shifts for uninjured wives
6) SOCIAL SUPPORT AND REHABILITATION
RESEARCH
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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
6)
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SOCIAL SUPPORT AND REHABILITATION
RESEARCH (continued)
TBI peer mentor and training support
interventions
- Mentorship promotes coping strategies
- Mentor program improves perception of support
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Frameworks to guide TBI relationship intervention
- Strength based strategies
- Transformed selves
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Socio-politically oriented social support
- Diverse cultures
- Complex conceptualization of support
PROBLEMS IN PAST RESEARCH
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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
PRIMARY RESEARCH QUESTIONS
1.
How does the experience of TBI affect intimate relationships
of TBI survivors and their significant others?
2.
What does intimacy mean to each individual in the aftermath
of TBI?
3.
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?
4.
How do survivors’ and uninjured partners’ experiences
compare and contrast with each other?
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?
THEORETICAL FRAMEWORKS
1)
Social model of disability
(Anderson & Kitchin, 2000; Shakespeare et al, 1996;
Tate & Pledger, 2003)
2)
Family systems (Laroi, 2003; Vangel et al., 2011)
& secondary trauma (Goff et al., 2006; Mills & Turnbull, 2004)
3)
Social support
(Vangel et al., 2011; Ergh et al, 2002; Magasi & Hammel, 2004;
Chenoweth & Stehlik, 2004; Hibbard et al., 2002; Struchen et al., 2011)
METHODS
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Research Design
Two year qualitative study -- phenomenological as explained by
Taylor & Bogdan (1998): open and capturing experience
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Elements of emancipatory research
(Priestly, 2003)
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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.
RECRUITMENT PROCEDURES
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Distribution of research announcements
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Recruitment through rehab liaisons, TBI support
organizations, presentations to TBI groups and
word-of-mouth “snowballing”
Demographics of participants
Participants with TBI
(n=13)
Female
Male
4
9
Age y; mean(median)(range) 37.61 (38) (23-64)
White (non-Hispanic)
Black
Hispanic
LGBT
Partners
(n=13)
10
3
38.38 (38) (26-66)
11
2
0
1
10
2
1
1
Not married
Married
4
9
4
9
Length of relationship
<5 y
>5 y
6
7
6
7
Relationship begun
Prior to TBI
After TBI
9
4
9
4
Yrs post-TBI: mean(median) 5.69 (3)
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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
DATA MANAGEMENT AND ANALYSIS
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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
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.
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
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.
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)
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)
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)
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)
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)
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)
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)
FOLLOW-UP INTERVIEWS AND FOCUS
GROUPS RESULTS
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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
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Focus Groups
- Camaraderie of group
- Supporting each other
- Benefits of this type of research
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)
family
“I only have one best friend and she’s as good as a
member…But, we’ve lost everybody else…”
(partner)
Acceptance
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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)
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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)
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 followup….Who am I going to call if I have trouble with
intimacy?…those are the key elements that are missing
here…” (partner)
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)
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)
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)
DISCUSSION
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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
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Communication
- Supported intimacy literature
- Few exceptions to men partners more positive
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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
DISCUSSION (continued)
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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
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Supported conceptual strategy findings:
-Transformed selves/reconstructing: survivors and partners spoke about
re-creating lives
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Extended ideas about partner vulnerability and support
- partner affected by support of survivor
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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
DISCUSSION (continued)
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Relationship stability
- some couples had more challenges
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Social support
- peer mentor and support programs
- conflicting responsibilities obstruct access to supports
- need more complex conceptualization of support
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Societal attitudes
- supported literature regarding negative attitudes and inadequate
understanding of TBI
Limitations of Study
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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.
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Potential for subjective bias in interpreting qualitative
data; focus group feedback and audit of the thematic
analysis helped to address this concern.
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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
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Recommendations for Future Research
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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
Implications for Clinical Application
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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
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
Future Steps/Goals
1.
Ongoing research on intimacy and TBI
2.
Development and implementation of
education and training programs
3.
Creation of couple interventions and supports
4.
Collaboration at community level to design
supports
5.
Social policy and reform for people with
disabilities