The “Everything You Need to Know About Cancer” manual was created with the goal of becoming a reference material due to its inclusive approach, adapting complex medical facts into a clear and accessible format for these cancer patients and intellectual or developmental disabilities.
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guide to oncological disability
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Cover image of Cancer Guide for People with Intellectual or Developmental Disabilities. /Image by pfizer
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Cover image of Cancer Guide for People with intellectual or Developmental Disabilities. /Image by Pfizer
A cancer diagnosis is always complex news that needs to be understood and assimilated by the patient, a situation that can be more complicated for all those people with intellectual or developmental disabilities.
The guide for patients with intellectual or developmental disabilities seeks to address this need. To do this, he made improvements to the understanding and understanding of oncological disease.
Pfizer launched this initiative with the help of Aspanaes, a non-profit association that works to support people with autism, and Dr. Laura de Paz Arias, head of the Oncology Service of the University Hospital Complex of Ferrol.
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oncological disability
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Explanatory drawing of the different types of cancer treatments. /Image taken from the guide.
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“We want them to have an active role in their health and understand the processes they go through, becuase it is essential that anyone, nonetheless of their abilities, has access to information about their health,” explains Dr. Laura de Paz Arias.
The guide
The content is divided into sections that are looking for clarify every aspect of this disease and his approach simply in 21 pages:
Introduction to cancer
At the beginning, questions such as what cancer is and where it can develop are answered, all accompanied by explanatory drawings and sections in which people with intellectual disabilities can personalize the guide by entering the type of cancer they suffer from.
The patient’s relationship with theto the disease
The following chapters explain who the professionals are who will help this patient and the different types of treatments available.
It also describes the different forms of administration (intravenous drugs, oral, etc.), with a section in each section where the patient can include the name of their oncologist and the type of treatment they will receive, and also the frequency of treatment. visits to the medical centre.
Living with the disease
THE guide It concludes with some recommendations to try to maintain an optimal quality of life throughout the treatment.
Las illustrations that appear throughout the guide were carried out by adults and schoolchildren with TEA (autism spectrum disorders).The drawings were made during a day of reflection on cancer in Aspanae.
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oncological disability
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Drawing illustrating a happy patient, created by a young woman suffering from ADD. /Image taken from the guide.
“ data-medium-file=” data-large-file=” alt=”cancer disability” class=”wp-image-362351 lazyload” style=”width:476px;height:auto” src=” srcset=” 255w , 216w” data-sizes=”auto” data-eio-rwidth=”255″ data-eio-rheight=”354″/> Drawing illustrating a happy patient, performed by a young woman with ADD. /Image taken from the guide.
“This guidance is a step forward toward equal access to health information for people with functional diversity. We tried to help them understand a process as harsh and traumatic as cancer. This guide can serve as a support to understand what is happening to them, what the disease consists of, reduce uncertainty about what
the manual can also be a useful tool for healthcare personnel Know how to explain the oncological process and its treatment when consulting people who have difficulty understanding.
What challenges do cancer patients with intellectual or developmental disabilities face during their treatment?
Interview between the Time.news Editor and dr. Laura de paz Arias
Time.news Editor (TNE): Welcome, Dr. Laura de Paz Arias! It’s a pleasure to have you here to discuss such an important topic.Your team has created the “Everything You Need to Know About Cancer” manual, specifically tailored for cancer patients with intellectual or developmental disabilities. Can you tell us what prompted this initiative?
Dr.Laura de Paz Arias (DLP): Thank you for having me! The inspiration behind this manual stemmed from recognizing that a cancer diagnosis can be notably challenging for individuals with intellectual or developmental disabilities. Thes patients often struggle with understanding complex medical details, which can lead to anxiety and confusion.We aimed to create a resource that simplifies these concepts to enhance understanding and empower patients.
TNE: That’s a commendable goal. Can you elaborate on how the guide simplifies concepts around cancer and treatment?
DLP: Absolutely! The manual transforms complex medical jargon into clear, accessible language. we use visual aids like diagrams and illustrations, which help convey critically important information in a more digestible format. additionally, we break down key treatment options and processes step by step, ensuring patients and their families can engage actively in discussions about their health.
TNE: It sounds like a comprehensive and user-friendly resource! How did your collaboration with Aspanaes, the non-profit association, enhance the guide’s development?
DLP: Working with Aspanaes has been invaluable. Their expertise in supporting individuals with autism allowed us to better understand the unique needs of this community. Their input helped shape the content and structure of the guide, making it even more relevant for those who will use it. It was a true partnership aimed at advocacy and support.
TNE: That’s marvelous to hear. With such a sensitive topic, how do you ensure the information is not onyl accurate but also comforting for these patients?
DLP: We take great care to present the information compassionately. We want the guide to serve as a source of reassurance and support. Our tone is hopeful and empowering, aiming to encourage patients that they can have an active role in their health care decisions. Education leads to empowerment, and that’s a core philosophy for us.
TNE: Speaking of empowerment, what do you believe is the most significant aspect of giving patients an understanding of their condition?
DLP: Understanding is everything! When patients comprehend their diagnosis and treatment options, it transforms them from passive recipients of care to active participants. This involvement is crucial for their mental well-being and results in better health outcomes. It’s essential for these patients to feel they have a say in their treatment journey.
TNE: That’s such an critically important viewpoint. As we wrap up,what message do you hope to convey to families of patients with intellectual or developmental disabilities regarding cancer care?
DLP: I hope families understand that they are not alone in this journey. Resources like the guide exist to support them and their loved ones. Open communication with healthcare providers and utilizing educational tools can significantly alleviate fears and uncertainties.Together, we can create a framework where patients feel informed and supported.
TNE: Thank you so much, Dr. de Paz Arias, for sharing your insights and the significant progress your team is making for cancer patients with intellectual or developmental disabilities. Your work is incredibly impactful!
DLP: Thank you for having me! I’m thrilled to share this critically important work, and I truly believe that together we can make a meaningful difference in the lives of these patients and their families.