Improve The Health And Healthcare of AYA Cancer Survivors

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Lacuna Loft’s very own Mallory Casperson is an investigator in a new study with researchers at Kaiser Permanente to improve the health and healthcare of adolescent and young adults (AYAs) who may have had cancer. We need to hear about cancer experiences like yours to help shape our research. Topics will include your experiences with medical care, your life experience, and your thoughts on research participation.

We would like to recruit 30 AYAs to participate in a sixty-minute telephone interview. We will talk about cancer experiences and what researchers should know.

People who complete an interview will receive a $40 Target, Amazon, or Starbucks gift card for their participation.

If you are interested in participating, please click on the following link to answer a few questions to see if you are eligible. If you are eligible and selected, a member of the study team will follow up with you to schedule your interview.

Click here if you’re interested: https://bit.ly/2SU9aU8

With sincere thanks,
Marlaine Figueroa Gray, PhD – Kaiser Permanente Washington

Mallory Casperson – Lacuna Loft

Research Study On Extracurriculars Among Childhood Cancer Survivors

Lacuna Loft really enjoys sharing the news on research studies that benefit young adult cancer patients, survivors, and caregivers.  Check out this announcement for one from Celina at Cedars-Sinai!

I am part of a research team at the Samuel Oschin Comprehensive Cancer Institute at Cedars-Sinai Medical Center. I am writing to invite you to participate in our research study about promoting extracurricular activities among early childhood cancer survivors. We hope to learn more about childhood cancer survivors’ experiences participating in extracurricular activities.

If you are a parent of an early childhood cancer survivor (ages 10-18), please consider enrolling in our study. You and your child will participate in one interview, 30 to 60 minutes in length. (Please note that parents and children 12 or older have the option to participate in a second interview). As a thank you for your participation, you will receive an Amazon gift card worth $30 in your currency.

If you’d like to participate or have any questions about the study, please email: Celina Shirazipour, Ph.D. @ celina.shirazipour@cshs.org

Annual National Conference On Work And Cancer

work and cancer conf logo

Lacuna Loft is pleased to partner with Cancer and Careers on the 11th annual National Conference on Work & Cancer, being held virtually on Friday, June 25, 2021!

This FREE virtual event will explore the complexities working people face as they try to balance their cancer treatment and recovery with employment. Topics will include job search, legal issues, working during treatment, managing stress and more. CEUs/PDCs will be offered for nurses, social workers and HR professionals.

For more details or to register, please visit www.cancerandcareers.org/conference.

Comment On Research Results!

computer on bed with water

The Behavioural Sciences Unit, a research group in Sydney, Australia is looking for cancer survivor consumer representatives aged 15-39 to provide feedback on some brand new study results from the AYA Global Accord international research study. Some of you may have provided input on this study in 2018 when it was first applying for funding. This global study is being led by Dr. Ursula Sansom-Daly, a psychologist and researcher whose work focuses on AYA cancer, and she is working with a team of international experts from Australia, New Zealand, USA, Canada, and the UK.

The study involved AYA healthcare professionals completing an online survey. This survey aimed to find out what an international group of healthcare professionals thought ideal end-of-life communication with adolescents and young adults with cancer should look like, and what type of training they wanted to improve their skills in this area.

The first thing we’d be seeking your help with would be commenting on the results from this survey based on your experience, via an online survey format.

Later on, there will also be an opportunity to join a teleconference with other young cancer survivors and the research team to discuss your perspectives on the research findings some more. Consumers will also have the opportunity to contribute to a publication (an academic journal article) about consumers’ views.

If you’re interested, fill out the form below and Lacuna Loft will forward your information along to the research group!

Have You Heard Of Mend Together?

Lacuna Loft loves sharing resources we find valuable with you and today is no different. Few people probably know that Lacuna Loft started out as a sole proprietorship where we sold ‘cancer care packages’ for loved ones to buy a patient or survivor in their life. It had all of those great products that we as patients and survivors know are super helpful when you’re going through cancer treatment and entering survivorship. Out of that grew Lacuna Loft as you know it today, a nonprofit where we host psychosocial and support programs for young adults facing cancer, but it’s always been important to me to figure out how to get what’s needed most into the hands of young adults with cancer.

With that in mind, have you heard of Mend Together? They are a platform where you can organize what you need with your family and friends into a gift + cash registry. Think the knot or amazon wish lists but even better because Mend Together is specifically designed for cancer patients and survivors.

It’s so hard sometimes to respond when well-meaning family and friends ask, “How can I help?” Especially when sometimes you just really need a specific kind of toothpaste to help with dry mouth, a pair of cozy socks for the infusion room, or maybe just Tuesday night dinner. Mend Together is a free platform that helps organize exactly what you need. You pick the items you need and add them to the registry. They even have tools on the platform that help others learn what to say and do for someone facing cancer! Mend Together includes a gift + cash registry, community journal, and volunteer calendar.

If you’re interested in setting up a registry, use the code LACUNA100. That will get you a free Cancer Support Kit that includes free gifts, resources, and a $100 in-site credit to use on Mend Together’s products and services. Mend Together will also donate $20 to Lacuna Loft to help support our mission and programs.

How does it work?

Patients/Survivors of a friend/family member can create a free registry and add over 300 products, services, and cash funds to it as well as send updates to loved ones. Friends and family can then choose a gift to send, contribute funds for financial assistance, send encouraging words, or donate time.

Learn more about how to help people rally around you when you need them most using Mend Together.

Join A Focus Group + Be Heard!

man at desk

Are you between the ages of 26-35 and have been diagnosed with ALL or AML? We’d love to chat with you!

Join a focus group, hosted by Lacuna Loft, Elephants and Tea, and Servier Pharmaceuticals. Servier is looking to speak with 15 young adults facing cancer, ages 26-35, about your survivorship. The good, the bad, and everything in between. Better understanding your survivorship challenges will help Servier better innovate in their creation and delivery of cancer tools and resources.

The group will be focused around ALL and AML survivors but young adults facing other diagnoses may also attend. The focus group will take place on Feb. 10th or Feb 11th. 5-6:30 pm PT / 7-8:30 pm CT / 8-9:30 pm ET.

Each focus group will bring together 5-10 young adults facing cancer for a moderated discussion over 2 hours. The discussion will happen over Zoom so you can be comfy and cozy at home for the whole thing. You will be compensated for your time and energy because your voice and perspective are so important in the delivery of cancer survivorship resources.

Sign up below to join the discussion today and offer your voice!

Have questions?  Email mallory@lacunaloft.org.

Opening The Conversation: Join A Research Study!

Young adult survivors of breast and gynecologic cancer face a number of challenges, including interrupted life plans.  As many as two-thirds of these young survivors experience negative effects of cancer and cancer treatment on their reproductive health, including sexual function and ability to have children.  These are among the most distressing aspects of life after cancer for young survivors and their partners, and when left unaddressed, lead to poorer mental health and quality of life.  Effective communication and coping are important for couples struggling with reproductive distress after cancer.  Through their research, scientists at Oregon State University learned that many couples encounter significant challenges when faced with the reproductive and sexual health consequences of cancer.  Yet, surprisingly, evidence-based programs are not available to help young couples manage this aspect of life after cancer.

These researchers are looking to adapt an existing program so that it specifically fills this gap. To do this, they will incorporate advice from young survivors, survivors’ partners, clinicians, and researchers.  The new program will focus on fertility/family building and sexual health concerns after cancer, be tailored to meet the needs of young adult breast and gynecologic cancer survivors and their partners, include information about strategies shown to be effective to cope with reproductive health concerns after cancer, and be delivered by videoconference to reach couples living in rural and urban areas.  They will enroll 100 couples in this study to compare this newly adapted program to the original program, which focuses on managing the impact of cancer more generally. Fifty couples will be randomly assigned to receive the new program and 50 couples will receive the original program.

They evaluate whether the new program leads to greater improvements in reproductive and sexual distress than the original program. They also expect to see improvements in other aspects of relationships, sexual functioning, and well-being.  Additionally, they are interested in gaining knowledge about how the program works.  They will study possible mechanisms, including improved coping and communication between couples, using data from both survey questions and interviews.  Researchers expect this study to yield a feasible and effective program to reduce reproductive distress, which will lay the groundwork for making this program available to a wider audience in real-world settings.  In the long term, this is expected to improve equity of access to information and supportive care for young survivors and their partners.

Help create a program for young couples dealing with reproductive and sexual health concerns after cancer! Get $20 for sharing your opinions during an interview. Find out more at health.oregonstate.edu/oc

Teens&20s Is Launching And They Want To Hear From You

person at desk developing infographic

Our friends on the Together team at St. Jude Children’s Research Hospital are pleased to announce the launch of Teens&20s, a mini-site for teens and young adults who are childhood cancer patients and survivors.  Together needs feedback to help make Teens&20s the best it can be.  If you are a cancer patient/survivor age 13-25, please spend some time checking out Teens&20s and then take an anonymous survey by October 13.  While supplies last, participants who complete the survey will get a $10 gift card.  (Participants may choose from a variety of major retailers.)  Together is a comprehensive online resource for pediatric cancer patients and their families no matter where the patient receives treatment.

Check out the survey here!