The Role of Caregivers in Clinical Trial Participation
Friends, Family, and Loved Ones Can Serve a Vital Role in Supporting Trial Participants
Time and again we hear stories of the love, service, and sacrifice caregivers provide while supporting clinical trial participants through their journeys. From shuttling research volunteers back and forth to appointments, offering emotional support, and reminding participants to take medications or fill out diaries, caregivers are often among the unsung heroes of clinical research.
In the videos below you’ll meet three pairs of participants and caregivers, each with a unique story. We hope you find as much inspiration in their stories as we do.
Pamela & Brent’s Partnership
“You can do it alone, but it’s nice that you don’t have to.”
Meet Pamela and Brent. They’ve been married for 22 years. Pamela has Non-Small Cell Lung Cancer and is participating in an investigation clinical trial. Brent is her caregiver. In this video, we will hear from Pamela and Brent as they talk about dealing with the day to day challenges of Pamela’s diagnosis as a team, working together to create a new normal, and the benefits to participating in a clinical trial with a partner.
It’s easy to see why some seniors can fall into deep depression and decide life may not be worth living anymore. They may have lost a spouse, family members, children, friends or perhaps their mobility and health.
Sometimes depression may come softly, slowly stealing the seniors’ enthusiasm for life and isolating themselves from others while struggling alone with all sorts of depressive emotions.
New therapies have emerged that can help seniors deal with emotional issues that even they may not know they have. Talk therapy is one method of treatment that’s making amazing pathways to help seniors re-evaluate their present situation and find ways to deal with it.
How Talk Therapy for Seniors Works
Mental health social workers, psychiatrists and psychologists are become adept at helping seniors revamp their lives with the help of talk therapy. This type of therapy is designed to get the seniors to confront their negative thoughts and mood swings and develop new ones that can stave off bouts of depression that plague them in future years.
Some seniors that are dealing with depression today may be part of the generation that didn’t put much stock into therapy or counseling. They think of it as ‘spilling their guts’ to a person they don’t know and who doesn’t really know them. It’s embarrassing and a stigma that they want to avoid at all costs.
During a senior’s younger years, most have likely never entered a therapist’s office. Now, however, they’re recognizing that some of their problems might be easier to handle if they talk to a professional about ways to deal with them.
Since Medicare pays for therapy and psychiatric assessment, there’s no viable reason for a senior not to have an evaluation from a professional. Seniors are realizing that their time is more limited than it was and that they need to make the most of whatever years they have left.
Talk therapy is a good place to start when dealing with a senior’s depression and negative thoughts. If the patient is in full blown clinical depression, antidepressants may be in order – or some other type of lifestyle change such as diet and exercise.
Talking to someone neutral — especially a trained professional — about personal problems and fears can’t hurt and will likely give the senior a new perspective on life so they can become open to changes and new opportunities that present themselves in later years.
Claustrophobia is a form of anxiety disorder, in which an irrational fear of having no escape or being closed-in can lead to a panic attack.
It is considered a specific phobia according to the Diagnostic and Statistical Manual 5 (DSM-5).
Triggers may include being inside an elevator, a small room without any windows, or even being on an airplane.
Some people have reported that wearing tight-necked clothing can provoke feelings of claustrophobia.
Fast facts on claustrophobia:
Here are some key points about claustrophobia. More detail is in the main article.
Claustrophobia affects some people when they are in a small space.
It can lead to feelings of panic.
Causes may include conditioning and genetic factors.
A variety of tips and treatments may help people overcome their fear.
What is claustrophobia?
Claustrophobia is the fear of a closed-in place from which escape would be difficult or impossible.
The word claustrophobia comes from the Latin word claustrum which means “a closed-in place,” and the Greek word, phobos meaning “fear.”
People with claustrophobia will go to great lengths to avoid small spaces and situations that trigger their panic and anxiety.
They may avoid places like the subway and prefer to take the stairs rather than an elevator, even if many floors are involved.
Up to 5 percent of Americans may experience claustrophobia.
A psychologist or psychiatrist will ask the patient about their symptoms.
A diagnosis of claustrophobia may emerge during a consultation about another anxiety-related issue.
The psychologist will: ask for a description of the symptoms and what triggers them
try to establish how severe the symptoms are
rule out other types of anxiety disorder
To establish some details, the doctor may use:
a claustrophobia questionnaire to help identify the cause of anxiety
a claustrophobia scale to help establish the levels of anxiety
For a specific phobia to be diagnosed, certain criteria need to be met.
These are: a persistent unreasonable or excessive fear caused by the presence or anticipation of a specific situation anxiety response when exposed to the stimulus, possibly a panic attack in adults, or, in children, a tantrum, clinging, crying or freezing a recognition by adult patients that their fear is out of proportion to the perceived threat or danger employing measures to avoid the feared object or situation, or a tendency to face the experiences but with distress or anxiety the person’s reaction, anticipation or avoidance interferes with everyday life and relationships or causes significant distress the phobia has persisted for some time, usually 6 months or longer symptoms cannot be attributed to another mental condition, such as obsessive-compulsive disorder (OCD) or post-traumatic stress disorder (PTSD)
Claustrophobia is an anxiety disorder. Symptoms usually appear during childhood or adolescence.
Being in or thinking about being in a confined space can trigger fears of not being able to breathe properly, running out of oxygen, and distress at being restricted.
When anxiety levels reach a certain level, the person may start to experience:
sweating and chills
accelerated heart rate and high blood pressure
dizziness, fainting, and lightheadedness
hyperventilation, or “over breathing”
shaking or trembling and a sense of “butterflies” in the stomach
a choking sensation
tightness in the chest, chest pain, and difficulty breathing
an urge to use the bathroom
confusion or disorientation
fear of harm or illness
It is not necessarily the small spaces that trigger the anxiety, but the fear of what can happen to the person if confined to that area.
This is why the person fears running out of oxygen.
Examples of small spaces that could trigger anxiety are:
Claustrophobia can stem from a feeling of being trapped, and what could happen if they stayed confined to that area.
elevators or changing rooms in stores
tunnels, basements, or cellars
trains and subway trains
cars, especially those with central locking
some medical facilities, such as MRI scanners
small rooms, locked rooms, or rooms with windows that do not open
checking the exits and staying near them when entering a room
feeling anxious when all the doors are closed
staying near the door in a crowded party or gathering
avoiding driving or traveling as a passenger when traffic is likely to be congested
using the stairs instead of the elevator, even if this is difficult and uncomfortable
Claustrophobia involves a fear of being restricted or confined to one area, so, having to wait in line at a checkout may also cause it in some people.
Cognitive behavioral therapy
Cognitive behavioral therapy (CBT) can be used to reduce the frequency and potency of the fear reaction’s triggers.
Following a diagnosis, the psychologist may recommend one or more of the following treatment options.
Cognitive behavioral therapy (CBT): The aim is to retrain the patient’s mind so that they no longer feel threatened by the places they fear.
It may involve slowly exposing the patient to small spaces and helping them deal with their fear and anxiety.
Having to face the situation that causes the fear may deter people from seeking treatment.
Observing others: Seeing others interact with the source of fear may reassure the patient.
Drug therapy: Antidepressants and relaxants can help manage symptoms, but will not solve the underlying problem.
Relaxation and visualization exercises: Taking deep breaths, meditating and doing muscle-relaxing exercises can help deal with negative thoughts and anxiety.
Alternative or complementary medicine: Some supplements and natural products, for example, lavender oil or a “rescue remedy,” may help patients manage panic and anxiety.
Treatment often lasts around 10 weeks, with sessions twice a week. With appropriate treatment, it is possible to overcome claustrophobia.
Tips for coping
Strategies that can help people cope with claustrophobia include:
staying put if an attack happens. If driving, this may include pulling over to the side of the road and waiting till symptoms have passed.
Reminding yourself that the frightening thoughts and feelings will pass
trying to focus on something that is not threatening, for example, the time passing or other people
Breathing slowly and deeply, counting to three on each breath
challenging the fear by reminding yourself that it is not real
visualizing positive outcomes and images
Longer-term strategies may include joining a yoga class, working out an exercise program, or booking an aromatherapy massage, to help cope with stress.
In this video, Stella Lourency, Assistant Professor of Psychology at Emory University, explains that people with higher levels of claustrophobic fear tend to underestimate distances.
Past or childhood experience is often the trigger that causes a person to associate small spaces with a sense of panic or imminent danger.
Experiences that can have this effect may include:
being trapped or kept in a confined place, by accident or on purpose
being abused or bullied as a child
getting separated from parents or friends when in a crowded area
having a parent with claustrophobia
The trauma experienced at that time will affect the person’s ability to cope with a similar situation rationally in future. This is known as classic conditioning.
The person’s mind is believed to link the small space or confined area with the feeling of being in danger. The body then reacts accordingly, or in a way that seems logical.
Classic conditioning can also be inherited from parents or peers. If a parent, for example, has a fear of being close in, the child may observe their behavior and develop the same fears.
Possible genetic or physical factors
Other theories that may explain claustrophobia include:
Having a smaller amygdala: This is the part of the brain that controls how the body processes fear.
Genetic factors: A dormant evolutionary survival mechanism causes reactions that are no longer needed in today’s world. Mouse studies have indicated that a single gene may cause some individuals to have a greater degree of “resident-intruder stress.”
One group of researchers has suggested that people who experience claustrophobia perceive things as being nearer than they are, and that this triggers a defense mechanism.
Guy Winch asks us to take our emotional health as seriously as we take our physical health — and explores how to heal from common heartaches.
Why you should listen
Guy Winch is a licensed psychologist who works with individuals, couples and families. As an advocate for psychological health, he has spent the last two decades adapting the findings of scientific studies into tools his patients, readers and audience members can use to enhance and maintain their mental health. As an identical twin with a keen eye for any signs of favoritism, he believes we need to practice emotional hygiene with the same diligence with which we practice personal and dental hygiene.
“Reading Guy Winch’s excellent new book “Emotional First Aid” proved to be a surprisingly powerful experience for me. … I feel deeply appreciative for his astute observations on so many common causes of emotional distress and their cures, and especially for the chapter on loneliness.” — Psychologist and blogger Susan Heitler
Lean on us when heartbreak and healing go hand in hand.
About Alive Hospice Nashville TN.
You Are Not Alone – Highland Park Church
Would you like to ask questions about Hospice – 615-673-2221
Alive Hospice is a nonprofit organization that provides compassionate end-of-life care, palliative care, bereavement support and community education. Founded in Middle Tennessee in 1975, Alive Hospice is accredited by The Joint Commission and has held its Gold Seal of Approval for many years. It is also accredited by the National Institute for Jewish Hospices.
Alive Hospice entered the Middle Tennessee landscape in November 1975, only one year after the founding of the first hospice program in the United States. At the time, and through grassroots movements, other hospices also began appearing across the country. Like the group of individuals gathered together by Alive Hospice’s founders, Dr. David Barton and the late Dr. John Flexner, what unified those movements was compassionate people committed to helping patients live in comfort until death occurred and families to grieve with support.
Alive Hospice was chartered in 1975 as a nonprofit organization dedicated with three core goals: providing comprehensive care for terminally ill patients and their families; offering support for grieving adults and children; and serving the community as a center for research and education.
Today, Alive Hospice serves more than 3,600 patients and their families annually (more than 430 daily) and provides grief support services for nearly 600 adults and children in Middle Tennessee in addition to training for tomorrow’s caregivers and education for the community at large.
We provide loving care to people with life-threatening illnesses, support to their families
and service to the community in a spirit of enriching lives.
To be recognized as expert providers of hospice care, palliative care, management of
advanced disease and grief support and to be the agency of choice for the provision of
To be recognized as innovators and leaders in all aspects of end-of-life resources.
To influence the perceptions within the community and among medical professionals so
that the end of life is accepted as a meaningful component of the human experience.
We believe death to be a natural part of life’s journey.
We believe in honesty and integrity in all we say and do.
We believe in compassion to those we serve and to each other.
We believe in respect and dignity for all.
We value competent knowledgeable staff motivated to achieve personal and
We believe in accountability to society, our community and each other.
We believe in responsible stewardship of the resources with which we have been entrusted.
We believe in the continuous pursuit of organizational excellence.
We believe in teamwork to achieve our vision and mission, and to support our values.
Statement of Inclusiveness
As the only not-for-profit, community-based hospice in Middle Tennessee, Alive Hospice never turns anyone away, regardless of ability to pay, insurance status, race, religion, creed, color, sex, age, national origin, veteran status, sexual orientation, or disability. We live our mission to provide loving care to people with life-threatening illnesses, support to their families, and service to the community in a spirit of enriching lives.