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Interventions for Latino/a with Psychosis
Engaged Learning Project
By Miguel Gutierrez
Mentor: Professor Nia Parson
Thank you to Southern Methodist University and the Engaged
Learning Program that helped me make this possible.
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Abstract
Medical psychosis research on individuals of Latinos descent is very limited. Even more limited
is research in individuals aged 18-25 from this subgroup. Nevertheless this research project along
with Professor Neely Myers, Nia Parson, Anubha Sood and other researchers seeks to gather and
analyze information on patients of Latino descent ages 18-25 who have recently been diagnosed
with psychosis in order to improve the medical treatment experience for patients in the future
and to help improve patient retention. Some of the information that was gathered before this
project shows that patients of Latino descent generally do not continue their treatment after their
initial hospitalization, so this study seeks to identify a segment of patients who are not seeking
treatment and why they are not seeking treatment. This research paper will constantly use the
word “key supporter”, which are people that patients have identified as supporters in terms of
financial and or physical care, most of the times these can be a parent or other direct family
members.
During my time on the research project I have gotten the opportunity to work with a
group of researchers composed of professors, graduate, and undergraduate students. Each one of
them brings different skills and knowledge to the project. For example professors bring their
expertise in research that they have acquired over their academic and professional careers. For
me and other undergraduate students, we provide insight into improving and analyzing
communication with the patients. I have found that most patients feel more comfortable speaking
and are more likely to open up and be more conversational with people their age that they can
relate to.
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This project seeks to improve on several key factors in order to create a more thorough
analysis of an understudied segment in the population by increasing the amount of research
patients and by lowering turnover during the time period of the research. We currently have 7
patients in the study and we are constantly trying to recruit more in order to provide a more
thorough representation of patients in this segment and achieve a stronger view on how patients
would want mental care treatment improved.
Ethical issues of the study
In order to maintain confidentiality with patient’s information and to use the information
in an ethical manner, I made some adjustments to avoid any outside party from being able to link
information to any particular patient. Some of these changes include various demographic factors
such as sex, age, nationality, location, family members, etc. It is important to note that our
research project currently holds IRB approval.
One important ethical issue with our research team and with hospital regulation is to
ensure confidentiality. At times confidentiality regulation can be degrading and frustrating to
patients, especially to family members/key supporters. As a research group, we are often in
situations where we are regulated and are not allowed to bypass information between patients to
family members/key supporters. Patients that are older than 18 have the right not to have their
information disclosed without their consent; therefore, doctors and researchers are not allowed to
disclose information to family members unless there was prior consent. For key supporters often
times this means that they are left blank and filled with uncertainty; this includes not knowing
the health state of their children or even their location. Two examples to outline these are when
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one patient had been technically “missing” in the perspective of the key supporter, but we as a
research team knew where the patient was and how he was doing. The key supporters continued
to ask us for information, but we couldn’t give any information to them in order to maintain
confidentiality. This at times was frustrating not only to key supporters, but to us as well,
because we felt helpless since we were not able to help out with anything other than to say that
the patient was “okay”. Another perspective from the hospital’s point of view is when patients
have symptoms out of nowhere and they are taken into a hospital such as Greenoaks in Dallas.
On one occasion we had a key supporter mention that she was not allowed by hospital staff to
know the state of health of the patient, her child, nor was she allowed to see her. This protocol,
as mentioned, is set to maintain patient confidentiality, but is at times frustrating, especially on a
random first time occasions where there is no prior written consent for a family member to have
access to information. In this case it lead the key supporter to inaccessibility over information
about the state of her child for a period of 72 hours, which left the key supporter with strong
feelings of frustration and anger.
So it is important to point out the highly sensitive information that we deal with and that
hospitals deal with when it comes to medical treatment. So as mentioned I have made
adjustments to reduce the likelihood of information being linked to any individual through this
research paper.
Recent Findings
The recent findings from talking to patients, researchers, and medical staff have varied as
their opinions differ. I will be outlining some of the key categories which includes medicine,
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patients view towards treatment and medical diagnosis, alternative forms of medicine, and
parents influence on patients, are merely some of the key issues and newly found data in patient
data.
Patient language concerns
From conversations with patients, key supporters, researchers, and through analysis of
interview recordings, I have found that the majority of patients and key supporters prefer to
speak Spanish to the researchers. The parents of several of our research patients do not
understand or can barely speak English. When asked about their preferences, they often
mentioned that they felt more comfortable speaking in Spanish, and some even mentioned that
they used it as a way to prevent medical staff from understanding conversations. The latter was
often mentioned by patients who viewed their hospital stay as punishment.
We see the addition of Spanish speaking personnel as key for hospitals since it will not
only increase patient trust but it will also allow for easier communication of information,
especially when it comes to highly sensitive matters such as patient’s prescriptions.
Patients’s views towards medical treatment and medication
Another key trend that we have found and that we always address in our research when
talking to patients is their opinion towards medical treatment in terms of their medication. A lot
of patients mentioned their medicine as being an important part of their treatment but often times
mentioned that there could be alternatives to medicine. Also, some patients mentioned that they
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did not like being given the label of “ you have this disease, now you have to take this medicine
for the rest of your life”. One of the patients mentioned that several of the hospitals he had
visited were not actually focused on long term treatment, but rather on improving immediate
profitability of the clinic which consisted of seeing the highest amount of patients possible and
just prescribing out medicine to stop the most upfront symptoms.
This patient mentioned that the doctors were not conversational and did not give out the
feeling of hope for a better future, but rather just prescribed medicine without explaining what it
would specifically do. This lead to the patient along with his father to seek treatment elsewhere
with another doctor, whom they described as being one who actually cared and worked with
patients to improve their care rather than just prescribe medicine which often times had side
effects.
This patient mentioned that ideal medical treatment would include medication, but sided
towards more natural alternatives rather than that medication with heavy chemicals, which often
caused drowsiness and tiredness. In this sense the patient approved of medicine in his treatment
and saw it as an essential part, but also mentioned that prescriptions should be diminished as
symptoms improved, which is what he was told by the new doctor with whom he had an
improved relationship with. It is important to note that this patient’s father dismissed the
diagnosis given by the first medical doctor and was also unhappy with the doctor’s approach of
only prescribing medicine and not giving any other advice as to how to improve his son’s
condition.
Another patient mentioned that he gained extreme amounts of weight by taking the
medicine prescribed by his doctor and that the medicine made him extremely sleepy, often times
making him sleep up to 11-12 hours per day. This patient also saw medicine as an important
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factor for treatment of his condition, but wished it would not have any side effects. It is
important to note that some of the direct family members of this patient kept advising him that
the medicine could lead him to become addicted, and in the future he would need it in order to
function. He described the family members comments with the label of being “a pill person”,
emphasizing that he may require them in order to just be functional and to avoid symptoms from
the disease. The patient felt the family member’s comments were offensive but also understood
that there are drugs which can have addictive factors.
Professor Parson, Gillian Wright, and I visited Terrell Psychiatric Hospital on one
occasion. This hospital is funded by the state of Texas and from conversation with other
researchers in the project this facility is known for having patients heavily dosed and being “very
good” about making patients take their medication. It was my first time going to this hospital
and my first time visiting a psychiatric facility. I was surprised that the lady that checked us in
did not even ask who we were, she just asked for us to write our names down on some forms.
Also the database system they used seemed out of date, as she was not even able to search by
anything but last name, and no first name.
Professor Parson and me decided to enter into the ward for males only to try to talk to a
patient, the lady in the front desk complained that she was the only one there, when there was
supposed to be two nurses. We were not allowed to take a recorder or phone into the visitor’s
area. Then she asked who we were, and we said that we were researchers for SMU and showed
some of the consent forms that we use in our study. Then she answered she was only a PA,
which I am not sure if I understood or heard correctly, and that she wouldn’t even look at our
consent forms because she said she wouldn’t know what they meant. I am not sure if her
response was appropriate, because if I was a family member of the patients, I would not be
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happy knowing she was not qualified and could not even take the time tor read the consent
forms, but maybe it was just my reaction.
We were then escorted down an old hallway to meet with the patient in a common area,
which was the cafeteria. Once we were there, she literally locked the door after us and expected
us to know what to do next. We were lost for a second and we then talked to a person who
looked like a nurse because she was wearing identification and we asked to talk to a certain
patient. Once again we were not asked who we were, which looking back now we should have
told her, but it was also the nurse's responsibility to ask. The nurse then went to look for the
patient. As we sat there and waited for him I took a view of the common area, the patients had no
privacy with their visitors. Some of the patients seemed very heavily drugged, but that may have
just been their normal state. The area was not comforting at all to visitors and patients, and it
made me think of a prison setting.
As the patient came out, we introduced ourselves and mentioned his previous meeting
with another researcher, but he quickly said he did not want to do the interviews anymore. He
looked very nervous and began to shake a little bit. I wonder if he changed his mind due to him
being moved to this current facility. Previously this patient had mentioned he would do
everything possible to prevent himself from being moved to this current facility of Terrell
Hospital from where he previously was in Greenoaks. I also wonder if his demeanor had changed
due to the way he was treated in Terrell Hospital, since when he met with another researcher in
Greenoaks, he was described as being very open to communication and interested in our
research, as opposed to what we encountered which resembled fear, confusion, and detached.
The changes in his attitude and demeanor may have been caused by the change in facility or by
his own symptoms.
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Overall my personal experience with Terrell Hospital was negative, I got the feeling that
the hospital was understaffed, underfunded, and I did not get the sense that the nurses and other
assistants were strongly qualified in their interpersonal skills. I hope this was just a one time
experience, but from what I hear from other researchers in the project it may be that the hospital
is regularly like this, and it makes me realize how important the research that this project is
trying to gather so that we can help patients like him one day.
From the perspective of the patients, it is now clearer to see why they would not choose
to follow through with their medication due to reasons such as their negative experiences with
the hospital, lifelong medicine consumption, addictive factors, and negative side effects.
Some of the other things that patients mentioned were the physical settings of the
hospitals. They mentioned that they were often not able to reach their doctors at any given time
and often only saw them once a week. Some of the patients also mentioned that they lacked the
feeling of safety during their stay in the hospital. First it is important to clarify that most of the
patients in our research were usually in a state of mind where they could have conversation with
us, and there was not a direct threat of physical harm to our research group or to themselves. In
this sense the patients we interviewed could be described as having low intensity of symptoms.
Nevertheless patients felt, that there should be physical separation between patients who
exhibited strong symptoms versus those with low exhibition of symptoms. They felt that this
would provide for more specialized and tailored treatment, and would minimize the risk of
confrontation with other patients. They also mentioned that they often felt terrified, unsafe, and
even traumatized by the experience of observing other patients with strong symptoms. From
these findings we see that hospitals should further research and invest into separation of patients
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based on the intensity of their symptoms, which will allow for improvement in patient safety,
treatment, and patient retention.
Patient background and relationship with parents
One of the trends that patients exhibited in the research finding so far is the relationship
with their parents. It is important to mention that this study is not intended to put a label on the
overall population of Latinos with psychosis. It is merely an observation that will be important to
further research into. Nevertheless some of the patients have exhibited a dysfunctional pattern
with their parents, specifically their fathers. So far we have 7 patients in the study and all of them
have mentioned that their fathers were not present when they were raised, and several of the
patients themselves currently also had troubled relationships with their partners and with their
own children.
One of the patients mentioned that his father died at a very young age, an event that he
was deeply affected by. He mentioned that there were various things that he lacked and his
relationship with his mom was affected since there was a constant struggle over his mom trying
to find another partner and himself struggling with memories of his father. Another patient, who
lived with his mother and sisters, mentioned that his parents had not been together since they
were young. For this specific patient, his parents had lived in Mexico and after they moved to the
US, the mother dealt with a physically abusive relationship with the father. This patient and the
key supporter mentioned how tough it was for them to get by on their own, and all the things that
they struggled with as a single parent family.
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For another patient her parents had been in her life but there was again another very weak
relationship with the father. There was a constant mention of problems with the father and low
communication. For this patient there were also problems between the relationship with her
daughter and the father of the daughter. As the child’s father maintained custody, it was
sometimes hard for her to see her child due to her work hours and visiting hours matching up.
With another patient, he had the support of his mother and stepfather, but his biological father
had not raised him. This patient mentioned the feeling of rejection on part of his biological father
but also said that he was happy to have the support of his stepfather. It is important to note that
this patient also had children and was currently in a relationship with the mother of his children.
But the patient mentioned constant mismatch of ideas and arguments with his spouse. He also
mentioned that he wanted to make the relationship work in order for his children to grow up with
both of their parents, since he saw it as an important development factor. The topics outlined by
patients help us gather and analyze patient background information on how relationships with
their parents could possibly play a role in patient’s diagnosis, and it will be important to further
research into this matter to help improve approaches to medical treatment.
Conclusion
This research paper seeks to identify some of the key trends in Latin people seeking
medical treatment for mental psychosis as well as their views on how treatment could be
improved. The topics outlined are patient language concerns and medical treatment (which
includes medicine, patients view towards treatment and medical diagnosis, alternative forms of
medicine, and parents influence on patients, are merely some of the key issues and newly found
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data in patient data). Further research into this segment of the population will allow us to gain a
fuller view of Latinos with mental psychosis and how government and medical agencies can
continue to improve medical treatment as well as to pinpoint other forms of treatment.
