January 10, 2018 Chat: Caregivers Wants and Needs

Happy New Year!

We were pleased to have Lauren Hand (@LCooperHand) a Gynecologic Oncology Fellow at Magee-Womens Hospital of University of Pittsburg Medical Center and investigator on "The Essential Elements of Caregiver Support in Gynecologic Oncology", join us as our guest for this month's chat.

Forty-six participants joined us as we discussed #carepartners and #caregiver needs and wants. You may find additional analytics here.

We asked six questions and have included some responses to those questions below. For the complete transcript please visit Symplur.

T1: What are the top two things you would tell healthcare providers about the needs of caregivers that you think they need to hear?

• Caregivers need to make time to care for themselves mentally and physically and they need to accept help from others
• I'd tell providers that caregivers suffer the same level of burnout that physicians experience & that it should a consideration when designing a care plan
• T1: 1. Importance of self care. 2. See number 1.
• #Carepartners need access to information for care coordination. What forms/permissions need to be granted to allow carepartners to consistently speak on patients behalf & engage w/ care team.

T2: What would you share with those new to caregiving? What do you wish you or your caregiver had known about the caregiving role?

• T2: Be sure you have a HIPAA clearance in place so you can get your person's medical info and give input to the doctor when the patient cannot or does not.
• A2: It is essential to have your own support system. Seek out a support group and/or a professional therapist to address your own feelings and struggles. If people offer help, take it. You do not have to do it all and you shouldn’t
• T2: That any decision your patient and you make is the right decision for now, regardless of how it turns out. We can't see the future. Jump on the horse and ride it!
• Caregiving is one of the hardest roles ever. Important for caregivers to make time for themselves, allow help, ASK for help.

T3: What are some of the barriers to family caregivers getting access to and utilizing the support services they want and need?

• T3 I’m my biggest barrier. I feel no one will give my loved one the care that I will because I love them
• Barriers to accessing and utilizing support services are often rooted in lack of awareness of what is available or that they even exist, financial concerns, and time. Additionally, many caregivers place personal/internal pressure on themselves to do it all. 
• The biggest barriers are realization that caregivers need help themselves. Actually finding and tapping into resources is also tough
• Speaking from a tech side, interoperability deficits keep patients and caregivers from connecting the dots of their care & support. Access is a peculiar thing when communication is an obstacle

T4a: What resources for caregiver support have you found in your area (formal and informal)? Have you utilized these resources?

• my hospital offers a caregiver support group, but my husband never went. Too busy, inconvenient time of day. 
• caregivers in US and Canada can reach out to @cancerhopenet to be matched to support volunteers who are caregivers. 
• my cancer dx and tx propelled us to finally find a spiritual home in joining a church. Not exactly caregiver support, but we can’t do this living and needing alone 
• @Smartpatients is good for helping caregivers, patients, and concerned friends get up to speed with all the terminology involved in disease and care. No question is too small or too large. 
• T-4 There has only been one local resource which was found late after my dx, not used. However, multiple online resources were utilized: @teaminspire was one. I also helped start a FB group called Friends and Family just for this purpose.

T4b: How did you find out about local caregiving resources - physician, nurse, cancer center, nonprofit, etc.?

• none of the above. It was all found via personal online searching. Great reason for office liaisons
• I heard about Caregiver resources from my cancer center's social worker.
• It was not easy! I found out about local resources through online searches and some support groups post their information in the local paper. Word of mouth/friends can be a good resource, as well as the hospitals in the area.

T5: If you could design a local family caregiver support program, what would that look like? What would you see as most important?

• I think some online modules or TELhealth style for quick consults could be helpful in taking time when you find that free 15min 
• Include a 24/7 support line when you need someone available to talk through the difficult times.
• I'd love to see #carepartners be able to reach out to another #caregiver at the same cancer center to help navigate the maze of paperwork , tests, insurance, scheduling. Every center has their own routine, requirements
• You know, even basics, like a list of the grocery stores in the area that do Click and Ship and help setting up - practical things
• Honestly, I think it should be multifaceted. Not every patient/caregiver responds in same way. I would make sure KIDS were an area of focus. I may also divide care by severity of disease at this can greatly impact the level of necessary care
• I would like a caregiver support group that addresses the needs of younger families/caregivers. This includes better and more flexible scheduling. My particular area lacks non-English speaking support groups, which leaves a lot of people without resources.

T6: What national/digital resources for caregivers have you found helpful? How can national and local programs work together?

• Resource | @CancerCare Caregiver resource page https://t.co/OVvlHtJ8kD
• Resource | Family Caregiver Alliance https://t.co/6FgV2vrN3N (800) 445-8106
• some more resources @SHAREing @CancerCare
• @CancerDotNet has great information about caregiving
• T6: Resource | Caring for the Caregiver Cancer Survival Toolbox® via @CancerAdvocacy https://www.canceradvocacy.org/resources/cancer-survival-toolbox/special-topics/caring-for-the-caregiver/

A complete list of resources shared during the chat may be found below. 

The Essential Elements of Caregiver Support in Gynecologic Oncology project:
If you are a caregiver of or a patient with gyn cancer interested in sharing more ideas about caregiving in a formal survey you are invited to participate in an online survey. Participation would involve 2-3 hours of your time through online surveys. Please contact (Lauren Hand) at handlc@upmc.edu.

Continue this conversation by joining us on the Smart Patients platform  (https://www.smartpatients.com/partners/gyncsm).

The February #gyncsm chat topic will be "Let’s Talk - Communication" focusing on patient-doctor communication.

We hope to see you then.

Dee
#gyncsm Co-founder

RESOURCES
@cancerhopenet Cancer Hope Network

@CancerSupportHQ Cancer Support Community https://www.cancersupportcommunity.org/caregivers

@Smartpatients Smart Patients Caregivers Group

@CancerDotNet Cancer.net

@SHAREing SHARE Caregiver Support https://www.sharecancersupport.org/caregivers-support/

@theNCI https://www.cancer.gov/resources-for/caregivers

@AmericanCancer American Cancer Society https://www.cancer.org/treatment/caregivers.html

@livestrong LIVESTRONG https://www.livestrong.org/we-can-help/caregiver-support

@CancerCare Caregiver resource page https://www.cancercare.org/tagged/caregiving

@ASCO Cancer.net international patients caregiver info https://www.cancer.net/coping-with-cancer/finding-support-and-information/international-patient-information

Caring for the Caregiver Cancer Survival Toolbox® via @CancerAdvocacy https://www.canceradvocacy.org/resources/cancer-survival-toolbox/special-topics/caring-for-the-caregiver/

Family Caregiver Alliance https://t.co/6FgV2vrN3N (800) 445-8106

January '18 Chat: Supporting Caregiver Wants and Needs

Happy New Year to our community!

We will begin a new year of chats on Wednesday, January 10, 2018 with a discussion on Supporting Caregiver Wants and Needs. Our guest will be Lauren Hand, (@LCooperHand) a Gynecologic Oncology Fellow at Magee-Womens Hospital of University of Pittsburg Medical Center. Ms Hand is an investigator on The Essential Elements of Caregiver Support in Gynecologic Oncology, a project through the University of Pittsburgh. The goals of the project are to identify the unmet needs of family caregivers, summarize the current state of practice of supporting caregivers, and propose a set of essential and actionable elements to be included in any caregiver support program in gynecologic cancer.

The questions that we will use to guide are discussion are:

T1: What are the top two things you would tell healthcare providers about the needs of caregivers that you think they need to hear?

T2: What would you share with those new to caregiving? What do you wish you or your caregiver had known about the caregiving role?

T3: What are some of the barriers to family caregivers getting access to and utilizing the support services they want and need?

T4a: What resources for caregiver support have you found in your area (formal and informal)? Have you utilized these resources?
T4b: How did you find out about local caregiving resources - physician, nurse, cancer center, nonprofit, etc.?

T5: If you could design a local family caregiver support program, what would that look like? What would you see as most important?

T6: What national/digital resources for caregivers have you found helpful? How can national and local programs work together?

You may want to check out Cancer.net's pages on Caregivers Taking Care of Themselves:
https://www.cancer.net/coping-with-cancer/caring-loved-one/caregivers-taking-care-themselves

We look forward to chatting with you on Wednesday. 

Dee and Christina 

Founders Gyncsm

November 9,2016 Your Health Care Team

Tonight we talked about the health care professionals and allied health professionals who are part of the team involved in the care of women diagnosed with a gynecologic cancer.

We were pleased to have 26 participants join in the discussion. Additional analytics may be found here. And the complete transcript here. 

Here is a quick overview of the topic questions and responses:

T1: Why is it important to think about who is on your health care team? Do you have a defined health care team?

• Consider post-Cancer experts you may need (ex. fertility), & recognize team members aren't all physicians (nurse navigators)
• my team is everyone who has helped me get through dx, treatment and now survivorship
• You have 2 be able 2 effectively communicate w/ your care team; these shouldn't be people you meet once & trust 4 optimal outcome

T2: Which professionals do you include in your health care team? What are some important roles to fill?

Professionals mentioned include: 

medical oncologist

gynecologic oncologist

radiation oncologist

radiologist

nutritionist

genetic counselor

social worker 

financial counselor

therapist

pharmacist

nurse (clinical trial, adv practice, treatment)

primary care physician

mental health support

gyn-urologist

Non-professionals

those who help with insurance , bills, transportation etc

patient groups

T3: What are some possibly over-looked or under-used health care professionals that can have an important impact? 

radiologists

pelvic floor physical therapist

medical librarian 

pharmacist

health coach

nutritionist 

palliative care specialist

T4: Let's look at radiation oncology. What role does #radonc play on your team? Positives, negatives, ways to improve?

•  T4 The role is coming more to forefront, care plan are being developed specifically for post-treatment for radonc profs
• Historically, while they may be part of care team, radonc was not weighted in the "patient engagement" strategy. That's changing

T5: For nursing, what have you found to be some of the most valuable impacts? What would you like to see improved? 

• RNs have a huge role in connecting the dots behind the scenes & caring in clinics 
• Listening skills and documentation competency!
• Nurses are also the front line when discussing issues of fertility and sexuality

T6: How do you handle communication and coordination between the members of your health care team?

• I think, unfortunately, that there is still a need for patients to have their own documentation to facilitate communication
• Patient is center of care team. Share concerns & ask questions. Improves communication & satisfaction.
• ask your clinic what options are available: phone calls, texts, secure/HIPAA compliant email, telemedicine might be available
• Sometimes I think the wisest course is to assume no one has heard anything from anyone else on the team, no matter how vital 

Resources: 

On Your Side: The Gynecologic Cancer Care Team via @SGO_org
https://www.sgo.org/patients-caregivers-survivors/gynecologic-oncology-video/

Your cancer treatment team via @cancer_connect
http://news.cancerconnect.com/newly-diagnosed/your-cancer-treatment-team/

The Oncology Team via @CancerDotNet
http://www.cancer.net/navigating-cancer-care/cancer-basics/cancer-care-team/oncology-team

Board Certified Pharmacists as Team members
https://www.youtube.com/watch?v=GCJyQtgruXQ&feature=youtu.be

List of team members via @CancerCare
http://www.cancercare.org/publications/59-your_health_care_team_your_doctor_is_only_the_beginning

National Society of Genetic Counselors
http://www.nsgc.org/

The must-have binder: my key to being an organized patient (or caregiver)
http://lisabadams.com/2011/03/16/the-binder-what-every-patient-should-have/

The next #gyncsm chat is Wednesday, December 14th at 9pmET. The topic is Getting Involved in Research.   

Remember if you are a patient or caregiver you can continue this conversation on the Smart Patients platform at https://www.smartpatients.com/gyncsm.

See you next month. 

Dee 

Co-founder #gyncsm