Studying Resilience Among AYAs

by Urska KosirSurvivorJune 5, 2020View more posts from Urska Kosir

Hello herd!

It’s nice to have a chance to write without having to provide a reference to every other sentence (ugh, academic papers)! ☺

I am Urška, Slovenian born and raised, but have trotted the globe over the past decade. I am currently stretched between the UK where I will be completing my PhD in the coming year, and Canada, where I hope to continue with my professional work.

I am a young and eager researcher who had a run in with lymphoma at 22. My background is in Psychology and these days I primarily work with young people who have to face cancer. I am trying to understand how young people cope with the challenges associated with cancer.

The aim of this post is to give you a brief introduction to my, and invite you to take part in my online study (http://tiny.cc/oxford_study), which you can do from the comfort of your sofa, as long as you have a laptop, WIFI, and 20-min worth of time!

 

Why is this research important?

Psycho-social oncology is a relatively young field and often overlooked. Historically, efforts have been placed on survivorship, and mental aspect of cancer care was resultantly often ignored.

We are making great progress in raising awareness of the many difficulties, challenges and needs that young people with cancer face. Research is key to innovation and novel approaches to care.

Mental health matters.

Mental health impact of cancer can be bigger than the physical aspect of it.

Mental health aspect of cancer needs to stop being a taboo.

 

How will you benefit?

Well, participating in the study offers no direct benefit to you. However, you may opt into a draw for voucher prizes for up to $150 (or a preferred equivalent).

Nevertheless, we hope that you will find some meaning by participating and providing your thoughtful responses, which will lead to invaluable insights that can inform the care for individuals like you in the future.

It is very important to me and my team that the work we do finds its way back to the patient communities! This way we can all benefit and learn.

 

Preliminary results

I am an advocate for open and accessible science; if not, what’s the point!?

I believe it is important to share findings, no matter how small, and communicate the results in an understandable fashion without misrepresenting the numbers.

I also believe that participating in research becomes fun when one can see and understand the results. To tease you, here are a few lovely graphs that summarize some of the responses we received this far!

These are real answers, from the on-going study in which you can still participate!

 

Graph #1 – CANCER-RELATED WORRY

Young people who experience cancer may experience worries related to their health and illness. These worries are common and do not predict mental health problems. In fact, though the sample in the figure below was small (N=21), up to 70% of young people report worries about receiving a new cancer diagnosis.

Though we stratified responses by gender, there were more female participants so it would not be right to assume that young women worry more. Maybe, there also exist differences in how men and women report their worries!

Labels explained:

Have children = worry about having children in the future;

Late effects = worry about experiencing late effects related to treatment;

New cancer = worry about receiving a new cancer diagnosis;

Relapse = worry about their cancer coming back;

Back of mind = cancer being always at the back of their mind;

Every day = worry about cancer every day

 

GRAPH #2 – DEPRESSION and ANXIETY among the participants

When talking about psychological distress in cancer patients, we most commonly turn to depression and anxiety. In our study we assess both. The graph below shows the two scales, and the higher the score, the higher the level of depression or anxiety, respectively. The blue lines stand for clinically determined cut-off scores. This means that individuals scoring above those lines might reach a threshold for a clinical diagnosis.

Please note that depression and anxiety are very hard to measure, especially in cancer populations! For example, fatigue, often a symptom of depression, might just be a side effect of illness or treatment itself. Researchers are working hard to develop better ways to assess mental states of cancer patients.

The graph below shows participants from two arms of the study, Slovenian and English, and indicates who is in treatment at the time of participation. This was done with two objectives in mind; individuals in treatment might be experiencing higher levels of distress (inconclusive!), and Slovenian participants seem to be clustered lower on both scales.

Is this a result of actual differences in levels of depression and anxiety between the different groups, or rather a cultural difference in reporting symptoms? Hard to say!

 

GRAPH #3 – POSITIVE & NEGATIVE factors contributing to the EXPERIENCE of DIAGNOSIS

For most young people facing cancer is the first time they have to actively engage with the health care systems. Navigating through all the tests, appointments, and shuffling between various departments can be difficult. Initial consultations and the way we receive diagnoses can really taint the entire experience – first impressions matter!

In our study we ask about individual experiences with receiving the diagnosis. The graph below demonstrates both positive and negative factors that participants described as contributing in the overall experience in learning the diagnosis.

Main factors contributing to a less negative experience in receiving the diagnosis were: emphatic and professional approach, feeling supported by the medical team and receiving adequate, yet not overwhelming information.

We should strive to promote these aspects in care so that everyone can feel equally cared for.

 

Adequate info = participants report being happy with the amount of relevant information about their disease and treatment;

Treatment Plan = Having a clear plan and steps ahead;

Over the phone – pos/neg = learning the diagnosis over the phone was positive for some while negative for others;

Preparation = feeling prepared for the bad news;

Validation = validation of emotional distress;

Assumed experience = because of medical background medical doctors assumed the patients were well informed about the disease;

Delay or mistake = lag in diagnosis or misdiagnosis;

Minimizing = telling patients they have a “good cancer”;

Rushed = feeling rushed through the diagnosis.

 

If you would like to learn more, full references to the academic works can be found at the links below

 

Can I get involved?

PLEASE DO!

If you would like to participate, just scroll through and follow the direct links to the online study (http://tiny.cc/oxford_study)!

The only entry criteria are the following:

  • Current age: 18+
  • Any cancer diagnosis, type, or stage
  • Must have been diagnosed at age 10 or later
  • Can read and write in English

More information on how your data and information will be stored and secured is available on the consent form, which you will be asked to review prior to participating.

In line with our efforts to understand how cancer patients and their caretakers are coping during the current pandemic, we have a short survey on COVID-19 impact (http://tiny.cc/covid-survey)!!

To participate in the main study, follow this link: http://tiny.cc/oxford_study

If you have an extra 5 minutes and are a cancer patient OR a caretaker and want to let us know how you are doing during COVID-19 please follow this link: http://tiny.cc/covid-survey

 

Questions or comments?

I am always keen to engage in a conversation, listen to participants’ feedback and comments and try to answer any questions that might come up!

Please do not hesitate to reach out: urska.kosir@psy.ox.ac.uk!

Stay well and safe! Until the next time.

 


All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer.  If you have a story or experience you would like to share with the cancer community we would love to hear from you!  Please submit your idea at https://www.elephantsandtea.com/contact/submissions/.

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