Beruflich Dokumente
Kultur Dokumente
Lisa B. Dixon
VA Capitol Network Mental Illness Research Education
and Clinical Center (MIRECC), New York State
Psychiatric Institute, Columbia University, New York,
New York, USA
348
Veterans’ Views of a Shared Decision-Making Process 349
INTRODUCTION
METHODS
Recruitment
After veterans and their family members finished the full REORDER
study, including a 6-month follow-up, they were referred for an
additional qualitative interview if they had completed at least one
family session. The qualitative study was framed to the veteran
as an opportunity for him or her to provide feedback about the
REORDER intervention to neutral interviewers who had not been
involved in the main study. The aim of this qualitative research
was to be descriptive and exploratory around key components of
the study processes.
Even though the randomized trial included participants from VA
Greater Los Angeles as well, only Greater Baltimore-area veterans
were included as possible referrals for the qualitative study because
of the physical location of the qualitative interviewers. The inter-
views took place from 2009 to 2011. Out of the 111 veterans in the
main study who were randomized to the REORDER intervention,
a total of 56 from two Baltimore area VA facilities (Baltimore and
Perry Point) had relatives who participated in the family sessions.
These individuals were informed at consent that they may be
contacted for a one-time qualitative interview. Delays in starting the
qualitative study resulted in the decision not to contact veterans with
family sessions completed in the first year of the main study, because
more than a year had elapsed since completion of the 6-month
follow-up, and recall of their participation might be an issue.
Twenty-four veterans were contacted by the team to set up an
in-person interview—one refused, one did not show up, and two
were referred but had very poor recall over the phone screening
about their study participation, so were excluded. Twenty qualita-
tive interviews were completed at the VA and those 20 interviews
were transcribed and analyzed. These veterans appeared to have
352 D. Gioia et al.
Sample Demographics
Eighteen of the participants in the qualitative study were male, 11
were Black, and on average participants were in their early 50 s
(52.9 6.8). Ten of the veterans were diagnosed with bipolar
disorder, six with schizophrenia, and the remaining four with
schizoaffective or depression with psychotic features. As part of
the inclusion criteria for the study, all participants had some degree
of contact with their families, but their families were having little or
no contact with the treatment team. Fourteen were unmarried and
16 had children. Most of the veterans (19 out of 20) were not
gainfully employed.
Interview Procedures
A single, semistructured qualitative interview was completed at the
VA with the veterans. The interview, which lasted approximately
Veterans’ Views of a Shared Decision-Making Process 353
FINDINGS
Shared Decision-Making
The narrative results indicated that a main dialectic for the veteran
and the REORDER clinician seemed to be exploring the tension
between including family as a benefit to them and weighing the
burden of including family.
Benefit
There were several benefits reported. Most of the veterans expressed
that it was a ‘‘plus’’ to have the person closest to them know the
warning signs of relapse and that they were pleased that the VA was
moving in this direction of including family. One veteran expressed
that family involvement is the ‘‘key to understanding’’ one’s mental
health conditions, but had previously felt that involving family was
‘‘only for physical health care’’ and had not considered involvement
in his mental health care prior to the intervention.
Veterans’ Views of a Shared Decision-Making Process 355
Another stated that when he invited his family member and she
agreed, ‘‘it showed she cared and the meetings basically let me
know how she was feeling about things.’’ Involving family was
seen as a means to ‘‘rebuild one’s life’’ with these connections
and provide some social support insurance that one not ‘‘go into
the psych ward again.’’
When the person chosen was a spouse or partner, there was an
expressed tone of gratitude and mutuality. ‘‘I had more of an
understanding [when my spouse was involved] of my mental
health, and my medication, and the effectiveness of both,’’ declared
one married veteran.
A veteran who loved the idea of the study when he first heard
about it, said he got involved, ‘‘because I think it’s important for
family members to be involved in it [mental health care]. Otherwise
they will just feel more alienated, you know, because understanding
is the key to knowing.’’
Burden
Some veterans expressed worry that inviting family members
might place a burden on them. There was deliberation about which
family member would be suitable and ‘‘strong enough’’ to invite to
the sessions.
One veteran deliberated this idea of emotional ‘‘strength’’ of
their relatives and then invited them with the support of the
SDM process and found that ‘‘it went better than expected.’’
The only person I could think of was my mother in [a city far from the
Veteran’s home] but she was already overextended with my brother and
sister who are disabled. But I called her and, to my surprise, she said
yes. But my main concern was that she would be overwhelmed. The big
thing was . . . I didn’t want to burden anyone and part of me wondered
if anyone would want to be bothered. I don’t usually like to talk about
[the illness]. . . . Actually, I try not to talk about it.
Identity
Older, male veterans, in particular, wanted to see themselves as
the provider rather than someone to worry about. One male stated,
‘‘Veterans are trained to take care of problems, and deal with prob-
lems, and overcome problems, and suppress, don’t worry about
356 D. Gioia et al.
I’m 53 years old and when I came up, men didn’t talk about certain things.
My father’s the type of person where if you cried, you showed weakness. If
you even talk about certain things you weren’t supposed to, it really
showed that you was weak.
Vulnerability
Even with the assistance of the REORDER clinician, one veteran
said he did hold some things back during sessions because he
did not want to present these things in front of family members.
Another stated how he held things back: ‘‘I didn’t want anyone
in my family knowing about my business, feeling sorry for me,
worrying about me, driving me crazy about it.’’
In response to a question about whether a male veteran brought
up all the things he wanted to in the family sessions, he stated that
he didn’t because ‘‘I don’t want to start a whole lot of stuff’’ in his
family wherein it was typical not to communicate very much except
on holidays.
Self-Protection
Some veterans expressed a specific desire to keep family members
out of mental health decisions, perhaps to limit their involvement
in some way despite weighing the pros and cons of family involve-
ment with the REORDER clinician. Other veterans wanted involve-
ment with someone who knew their situation but did not want to
invite additional pain or disparagement:
I might have invited my biological mother but she wouldn’t have taken it
seriously. My stepmother did come . . .. It would be helpful to get the other
family members involved if they would just understand what the other
person [the veteran] is feeling and don’t put them down . . . or make them
feel sorry for themselves.
said that they did not really notice any kind of change in their fam-
ily, while others did notice some differences. One veteran said that
he had started to talk to remaining family members who were not
involved in REORDER and he now ‘‘realizes it is not healthy to
hold things in. It’s like something fell off me—I had a burden on
me and it’s just gone away.’’ Another veteran said that ‘‘it’s not
only the bad things that your family needs to know, but you can
let your family know when you are in a good place in your
recovery.’’
at the VA, even among older veterans whose families had not been
involved in care prior to the study. REORDER is the first study of
its kind to utilize SDM with veterans in this manner. Veterans
spoke favorably about the intervention and wished that it had been
longer than three family sessions. The flexibility of the REORDER
intervention in offering the education by phone to the family
member who could not attend in person certainly increased the
involvement of families not previously included in care. The coach-
ing and support provided by REORDER clinicians in SDM and
the warm regard the veterans felt for their presence represents an
outstanding asset in engaging the veterans in new behaviors.
It is an understandable reaction not to want to burden others
in this culture, and discussing this general feeling normalizes the
process for adults with psychiatric disorders who express reluctance
to have family members see them as needing additional caretaking.
For the veteran, understanding that social support is critical to
their overall well-being is an important educational component of
REORDER. Understanding that the greater the number of family
members who know what is troubling them, the more these
members can serve in a supportive role—an important factor in
the decision to include them in treatment (Glynn, Cohen, Dixon,
& Niv, 2006).
Limitations
The limitations of the study merit attention and our understanding
is limited only to those with family involvement in REORDER who
agreed to the interview. The 20 veterans in this qualitative study do
not mirror all the experiences of the veterans who participated in
REORDER, and the data are not meant to be generalizable to all
participants. Because we interviewed veterans who had at least
one session with family in REORDER, we missed understanding
the experience of those who did not invite family to phase 2 of
REORDER or those whose families declined once invited. Admit-
tedly, this was a lost opportunity to understand particular needs
and challenges of a group of veterans without family support.
The interviewed sample was a smaller proportion of study part-
icipants than we had wished. Some potential participants refused
and others could not be contacted because of the somewhat transi-
ent nature of the population. Furthermore, because a significant
amount of time had elapsed from the end of the REORDER
362 D. Gioia et al.
Implications
Implications of this study for mental health professionals in
utilizing SDM are several. First, persons with serious mental disor-
ders are quite capable of engaging in reflection and deliberation
processes involved in shared decision-making around their health
care, and this aligns strongly with recovery principles. The ability
for anyone, with or without SMI, to appreciate and reflect on
a decision is part of overall mental capacity development, and
it needs to be cultivated through a variety of tasks such as those
involved in SDM (Owen, Freyenhagen, Richardson, & Hotopf,
2009). Second, Glynn et al. (2006) remind us that there have been
many changes in mental health treatment over the past 35 years,
and it is necessary to adopt recovery principles into our family
and other treatments, considering our interventions with the
consumer as the focal point. Third, having social support is crucial
at any age, and assisting in a dialogue about whether a client views
asking for support as the placing of burden on family is one that is
critical for us to explore so that we can attend to these conflicts
within the deliberations. Finally, REORDER is important for
bringing a fresh perspective on whether and how to involve family
in mental health care that has been missing from the literature to
date (Cohen et al, 2013). Further exploration will accompany the
dissemination and use of this manualized treatment as it gains
traction in a variety of mental health services settings.
Veterans’ Views of a Shared Decision-Making Process 363
ACKNOWLEDGMENTS
FUNDING
REFERENCES
Andrews, S. B., Drake, T., Haslett, W., & Munusamy, R. (2010). Developing
Web-based online support tools: The Dartmouth Decision Support Software.
Psychiatric Rehabilitation Journal, 34(1), 37–41.
Cohen, A. N., Drapalski, A. L., Glynn, S. M., Medoff, D., Fang, L. J., & Dixon, L. B.
(2013). Preferences for family involvement in care by consumers with serious
mental illness. Psychiatric Services, 64(3), 257–263.
Deegan, P. E., & Drake, R. E. (2006). Shared decision making and medication
management in the recovery process. Psychiatric Services, 57(11), 1636–1639.
Dixon, L. B., Cohen, A. N., Drapalski, A. L., Glynn, S. M., Medoff, D., Fang, L. J., . . .
Gioia, D. (2014). Outcomes of a brief program, REORDER, to promote consumer
recovery and family involvement in care. Psychiatric Services, 65(1), 116–120.
Drake, R. E., & Deegan, P. E. (2009). Shared decision making is an ethical imperative.
Psychiatric Services, 60(8), 1007.
Drake, R. E., Deegan, P. E., & Rapp, C. (2010). The promise of shared decision making
in mental health. Psychiatric Rehabilitation Journal, 34(1), 7–13.
Edwards, A., & Elwyn, G. (2006). Inside the box of shared decision making:
Distinguishing the process of involvement and who makes the decisions. Health
Expectations: An International Journal of Public Participation in Health Care and Health
Policy, 9(4), 307–320.
Glynn, S. M., Cohen, A. N., Dixon, L. B., & Niv, N. (2006). The potential impact of the
recovery movement on family interventions in schizophrenia: Opportunities and
obstacles. Schizophrenia Bulletin, 32(3), 451–463.
Kreyenbuhl, J., Nossel, I. R., & Dixon, L. B. (2009). Disengagement from mental
health treatment among individuals with schizophrenia and strategies for
364 D. Gioia et al.