Nursing/Caregiver Stress

 Laurl at ONS 

Welcome to the ONS Hot Topic Chats! Today’s expert is Dawn Camp-Sorrell, who will be talking with us about Nursing/Caregiver Stress. Welcome Dawn!

 dcamp-sorrell 

Welcome to the ONS chat on caregiver strain and burden. What burning questions do you have? Or do you have a wonderful experience to share?

 dcamp-sorrell 

Where do you work? Inpatient or outpatient?

 dereenhouck 

I work on an inpatient oncology unit and also in our outpatient unit

 KFoster 

I work inpatient

 dcamp-sorrell 

Wow! You both have probably seen a lot of stress with the nurses and patients!

 KFoster 

My biggest challenge seems to be managing multiple family members who all have a different opinions regarding the patient.

 dcamp-sorrell 

Wow! How hard is this!

 dcamp-sorrell 

So do you have suggestions on how to handle all those family members?

 dcamp-sorrell 

Sometimes it helps to pull them all together and discuss the issues.

 dcamp-sorrell 

I think if folks are able to voice their thoughts with someone controlling the conversation, it is helpful.

 dcamp-sorrell 

I often bring folks into the conference room and put the issues out for them to see it.

 dereenhouck 

We have family meetings frequently with all family who can attend, and include case management, social work, palliative care, etc. This brings everyone together and allows everyone to ask questions.

 dcamp-sorrell 

At times, this can be tricky. Esp. if folks are angry or you have one that is a dominate person.

 KFoster 

Case management seems to do that, I guess I'm thinking.....when you’re giving direct care to the patient and suddenly the family has decided how you will do it. Being tactful.

 dcamp-sorrell 

It’s difficult to be the patient advocate when you feel as though you are being attacked.

 dcamp-sorrell 

Trying to remember that they are trying to stay in control even though the environment is not on their home turf. It’s hard

 dereenhouck 

Yes, that's hard. I try to remember they are under a tremendous amount of stress. Usually if you are calm and listen they will sometimes calm down and apologize later.

 dcamp-sorrell 

Yes, this is true. Sometimes u just have to lay it down on the line. This is the patient's ultimate decision.

 dcamp-sorrell 

What's even more difficult is when u have a MD that doesn't back you up. Any thoughts about that? I've worked with plenty that are very unsupportive!

 KFoster 

Is it appropriate to ask family members to leave the room when giving care?

 dcamp-sorrell 

Absolutely!

 dcamp-sorrell 

This gives u time as a nurse to talk to the patient without family input.

 dereenhouck 

I sometimes ask them to leave for a few minutes; if the patient objects they will speak up. Sometimes I think they need a break from their families when things are really tense.

 KFoster 

How do you address the hostile, “Why”?

 dcamp-sorrell 

At times it’s very difficult to have the family member to leave. Sometimes I'll ask the patient if it’s ok if I ask them to leave so we can be alone.

 dcamp-sorrell 

Sure the patient needs a break from love ones. I think all of us do.

 dcamp-sorrell 

With hostile folks, I remain calm and try to have a clear head.

 dcamp-sorrell 

I speak very slowly and repeat everything that person is saying to me.

 dcamp-sorrell 

Often times this will help. If I see I can't get through, I go for help. Usually my manager or another nurse.

 dereenhouck 

I try to explain the best I can. I find it's very difficult especially if a death is imminent and family hasn't had time to process. When you appear confident and knowledgeable they usually respect that. Not always though…

 dcamp-sorrell 

At times, I've found the MD to intervene, but in the past few years my MD would not have been helpful. Only made the situation worse.

 dereenhouck 

Yes, that's happened to me as well.

 dcamp-sorrell 

Derreenhouck, this is so true. Good points!

 dcamp-sorrell 

I wonder at times that MDs are just not trained ( to deal with these issues).

 KFoster 

Brings a great question, what to do when the family constantly asks for you to call the MD?

 dcamp-sorrell 

People have a lot of control issues. I know that I do. Death is one thing we can't control and usually can't prepare for.

 KFoster 

Or manipulates; “the doctor asked me to have you page him/her”

 dcamp-sorrell 

I try to ask the family what do they need from the MD.

 dcamp-sorrell 

Often times, when we find out what info they really are seeking we can supply this

 dereenhouck 

I recently had a 40 year old woman dying of ovarian cancer. Apparently she had told her family she didn't want to be involved in the dying process and wanted her family to handle all her decisions. The family didn’t want anyone to mention hospice, So the MD came in and said, OK, Mrs..... So you know we are close to the end. The family flipped out on us. They asked one of our younger nurses to inform the woman's teenage children she was dying. They continued to be hostile till she died. I felt bad we were never able to make it a "comfortable" experience for them

 dcamp-sorrell 

I have found that when I give the info the family respects my thoughts. Sometimes family just want to know if the MD and u are in step with each other

 dcamp-sorrell 

RE: 40 yr old pt: That was  awful for all of you.

 dcamp-sorrell 

Being in the south, I have this happen often. I always thought it was a southern thing.

 dcamp-sorrell 

But I'm finding it isn't. I encourage the patient to talk with family, but sometimes that doesn't work.

 KFoster 

We have a similar situation and it has placed great stress to all staff members on our unit.

 dcamp-sorrell 

Often after the patient dies and we have been the scapegoat for the death, the family comes back and apologizes for their behavior. I do hope this happen with u

 oncnurse 

Do you find that the most stressful times for nurses are when pts are at end of life, during active treatment, at diagnosis?

 dcamp-sorrell 

Wow what a great question!

 KFoster 

All are different types of stress.

 dcamp-sorrell 

I have found that it depends on the patient and their diagnosis. I think the younger ones are harder at death and the older during treatment

 dcamp-sorrell 

Kfoster u are so right.

 KFoster 

Depends on family involvement

 dereenhouck 

I think it depends on the family. Definitely at diagnosis and end of life, depending on the situation; yes, especially when they're younger.

 dcamp-sorrell 

Family involvement is so true; it is either good or bad. I wonder why?

 KFoster 

Some families are truly amazing at EOL ( end of life)

 dcamp-sorrell 

Do u feel the family to be the most stressful factor?

 KFoster 

Yes.

 dereenhouck 

I find that the more patients and families are exposed to us, the more they trust us and are more amenable to our care. The patient is often more ready than the family

 dcamp-sorrell 

So why? Is it they are not in the patient role? They have no control?

 dcamp-sorrell 

I totally agree dereenhouck. Good point! The patient is with us more even if the family doesn't want to leave.

 dereenhouck 

I think they feel obligated to care for the patient, and need to be in control for them when the patient can

 oncnurse 

The patient has more exposure, more often, to the healthcare experience.... so they are more comfortable, earlier in the experience. Good point.

 dcamp-sorrell 

So true, so often we forget the family member and want to move forward with the patient. That can create the stress.

 oncnurse 

Do you think finding "roles" for the family (those that are having trouble) would be helpful for them to find "something to do" with their lack of control?

 dcamp-sorrell 

Good point oncnurse! I totally agree

 KFoster 

Having been on the family end twice, I think they seek so much knowledge to answer questions from outside, they get confused, are exhausted, still trying to be productive away from the hospital...

 dcamp-sorrell 

We often have family members get the drinks, snacks, or blankets. We try to keep them busy. I've even asked them to pull out and make recipe cards for all the patient s in the infusion room.

 tonimcrn 

I've been the family member of someone dying of cancer and I think the biggest thing is that you fell helpless to do anything to stop your family member form dying. It is a very emotional time

 KFoster 

All the while wanting to cling to something good, when everything is not.

 oncnurse 

Absolutely. They have all of the stress of the dying process, but have to keep functioning.

 dcamp-sorrell 

Kfoster, I agree. We have to encourage taking a break. If tired, no good to the pt.

 dereenhouck 

it's so much harder to watch someone you love being sick than being sick yourself, I think

 oncnurse 

Yes, and we all know too much

 dcamp-sorrell 

Toni, u are so right. We have no control over any of the cancer process. It’s so difficult to watch a love one suffer.

 tonimcrn 

The ones that are hardest to deal with are those in denial of the fact that the pt is not doing well. How do deal with that?

 dcamp-sorrell 

Kfoster, so true. I try to always find the positive even if the patient is dying. Death can be a very beautiful thing when we know they are comfortable.

 dcamp-sorrell 

RE: those in denial: Gently get them back to reality.

 KFoster 

I LOVE my role, but addressing the patient and family is exhausting, I need tools to distance while still being actively involved.

 dcamp-sorrell 

That is so hard to do. I find baby steps are the best method.

 dereenhouck 

I think just keep repeating the prognosis gently in ways they can understand, pointing out symptoms, etc

 dcamp-sorrell 

Have u seen the PEP cards from ONS?

 dereenhouck 

Haven't read them yet

 tonimcrn 

Yes we have them in the office

 dcamp-sorrell 

There is actual good points on this card ( about Caregiver Stress) to help you find ways to deal with the family.

 KFoster 

Sorry, I must depart. See you all again another evening. Thank you.

 dcamp-sorrell 

Conference with family members and open discussions is the best method to deal with families.

 dereenhouck 

How do you handle staff stress when their "favorite" patients are dying or not doing well?

 dcamp-sorrell 

dereen that is a great point. sometimes they are not ready to handle the info

 sapphy69 

I'm a soon to be new grad headed for onc nursing...how do you deal with the long term stress of the ongoing loss of patients (among other things)?

 dcamp-sorrell 

For nurses, it has been shown that exercise, sleeping well, and getting away from the work place is the best method to take care of our selves.

 Laurl at ONS 

If you don't know what the PEP cards are, they are the "Putting evidence into practice" guidelines/recommendations, in a card form, that can be really helpful. They categorize the interventions based on what levels of evidence are available in the literature for the interventions, from "recommended for practice" to "effectiveness not established"- Available online too at www.ons.org

 dcamp-sorrell 

sapphy, let yourself deal with the death. Don't pack it away and be strong.

 tonimcrn 

Do you have any type of grief counseling for the nurses?

 dereenhouck 

It's hard when you have to keep caring for other patients.

 dcamp-sorrell 

When it’s your favorite pt  dying, let your manager get everyone together to debrief together.

 sapphy69 

I believe the hospital where I did my practicum and hope to work does have peer counseling for nurses.

 dereenhouck 

We've tried that and nurse don't want to participate.

 dcamp-sorrell 

I find it very helpful to talk about the good times. I think it is helpful to laugh as much as u can

 tonimcrn 

I am the manager, any suggestions on how to help everyone cope?

 oncnurse 

When I worked in a Children's hospital onc setting, when a child died, one of our Social Workers got us all together and did a…

 oncnurse 

Oops...did a session with us all....let us vent.

 dcamp-sorrell 

toni, we don't have a grief person. We use each other and then we also have outside the job sources. I think it would be great to have someone specifically to help.

 oncnurse 

We also had a Memory book on the floor, where we all could write memories and funny moments with our patients in it...it did help, when we all could review it...later.

 dcamp-sorrell 

Sappy, peer counseling is great. When u start your job find out what is available.

 dereenhouck 

I like the memory book idea

 oncnurse 

It was really wonderful.... and we kept them ( we had a lot of them) and went over them from time to time. It made you think of the really sweet times that we get to experience with our patients.

 dcamp-sorrell 

Again I don't think any of us would say don't deal with it. Some nurses will actually follow up with the family, go to the funeral or the viewing. I
personally don't do this. After 2 decades of oncology nursing, I can't. I try to get my support from the unit nurses and from my own faith.

 dcamp-sorrell 

We also used photo albums! Do any of
 you have a celebration after the patient finishes treatment?

 dereenhouck 

We try to get balloons and a card for the patient.

 dcamp-sorrell 

Do you have survivor days? Or annual days to remember? This helps to remember those that have survived and not just the ones that are gone.

 dereenhouck 

Our outpatient center does

 dcamp-sorrell 

Some units use confetti or a bell when treatment is complete

 oncnurse 

We had a big bell in the treatment room that the patient could ring as many times as they wanted .

 dereenhouck 

We are having one this week at a ball game, for survivors and families.

 dcamp-sorrell 

It’s so important not to dwell on the negative but the positive.

 sapphy69 

That sounds like a great idea oncnurse...

 dcamp-sorrell 

Great idea! dereen

 dcamp-sorrell 

What I hear ya'll saying is to balance stress is to have and experience celebrations.

 dcamp-sorrell 

Celebrations are so important. I know of one place that has Christmas in July with a tree and presents!

 dereenhouck 

Yes, I think so, too

 dcamp-sorrell 

How fun it would be to get a Christmas present when its so hot outside!!!

 dcamp-sorrell 

Do ya'll have any other ways to celebrate?

 dcamp-sorrell 

There is some evidence to support psychoeducational interventions especially the older population. The PEP card supports this. Less stress has been found when multiple modalities were used to help people ( especially older people).

 dcamp-sorrell 

And also the more info given to the caregiver the less stress they will experience.

 dereenhouck 

Very true!!

 dcamp-sorrell 

Older caregivers need more support and education than their younger counterparts.

 tonimcrn 

My problem is getting the other nurses in my office to help with things like that

 dcamp-sorrell 

Probably most of us, if not in peds, care for so many folks over 65.

 tonimcrn 

That's very true

 dcamp-sorrell 

Wow toni! Are your nurses older than u… Or have they been nursing longer?

 oncnurse 

I was wondering that too...they may be “jaded".

 dcamp-sorrell 

It seems like the longer we work in oncology, the less energy we have to give to other folks.

 tonimcrn 

No, some are older but some are younger

 dereenhouck 

I think that's true, I think we get "worn out" from caring sometimes.

 dcamp-sorrell 

In this situation, I find patient education written material to be helpful. I also find that chat rooms for patient family members or online programs to be helpful. Find a couple that will help and work on a support group.

 oncnurse 

Without a doubt it can be easier to "not care" but really I think what you are doing is turning that stress inward.

 tonimcrn 

We are a very busy doctor's office that also gives chemo in the office, so I think that sometimes there just isn't time for the "extras".

 dcamp-sorrell 

Breast cancer support network has an excellent chat room.

 dereenhouck 

It doesn’t take long to put a hand on a shoulder or a minute to listen, sometimes that’s  all they need.

 dcamp-sorrell 

As a manager, these types of extras can be an expectation of the nurses.

 dcamp-sorrell 

Often times, when folks are waiting or giving the chemo, a little extra can be done.

 dcamp-sorrell 

dereen, u are so true. It’s easy when you are caught up in the business and forget why we became a nurse.

 dcamp-sorrell 

I find that when the family and patient is less stressed, I'm less stressed.

 dcamp-sorrell 

If we stay in our cocoon and forgot to reach out, everyone will feel it.

 tonimcrn 

That's the problem I feel like I'm the only one that isn't in my own cocoon. How do I get them to come out w/out seeming like a tyrant?

 dcamp-sorrell 

When the environment is relaxed and less stressed, the family and patient feel this. They feel welcomed and involved. They can actually listen to you.

 dcamp-sorrell 

R u a new manager? It is difficult to begin a new culture. Tell me more about your environment.

 dereenhouck 

I think when staff see you taking the extra steps and see the results, sometimes it makes it easier for them.

 dcamp-sorrell 

dereen, what great advice. This is so true!

 dcamp-sorrell 

It may seem as if u r the only one, yet positive will attract positive.

 dcamp-sorrell 

I have found that I can often get the family members to help me with this culture.

 oncnurse 

It's no different than when you go to the MD's office yourself- when you are rushed through the door, ignored by the receptionist, and barely spoken to, it's annoying... when you are invited into the treatment area and someone takes  time to look you in the eye, asks you if you need a drink of water...it makes all the difference about how you feel about the care givers around you.

 dcamp-sorrell 

What a great point oncnurse!

 tonimcrn 

I've been manager for a while. The nurses are all very good to the patients, but

 dcamp-sorrell 

But are burned out?

 dcamp-sorrell 

Toni, I'm worried about u. I do hope u are taking care of yourself.

 dereenhouck 

Toni, I think you can only do what you can yourself, can't force others. If you do what you know is right, that's all you can do. I think you do need to take care of yourself in other ways.

 dcamp-sorrell 

One of the worse things is to be in a work place when folks are not supportive to each other.

 tonimcrn 

oops, I just expect more than maybe is realistic. I do take care of myself. I don't think I'm burned out. I just expect everyone to be like me.

 oncnurse 

Toni, you are providing a good role modeling for them... you can slowly change a culture, but it takes time.

 dcamp-sorrell 

RE; everyone like you: Well, it would be nice! But not very realistic..

 sapphy69 

I have to go. thank you all!

 dcamp-sorrell 

I think u are starting out great! Keep up the good work!

 dcamp-sorrell 

Sappy good luck! I know u will be good!

 sapphy69 

Thanks!

 tonimcrn 

I know, thanks for the support.

 dcamp-sorrell 

Its so difficult being an oncology nurse, but so rewarding!

 tonimcrn 

It really is

 Laurl at ONS 

It's about 2 minutes before the end of our chat- please don't stop asking questions! However, when you can, please take a moment after the chat to cut and paste this URL into a browser window and take our very brief survey -we'd love to hear what you think of these chats! The URL is http://research.zarca.com/k/RsTUTRsSXXsXYUQSsPsP

 dcamp-sorrell 

I couldn't image doing anything else, even all the stress is worth it!

 dereenhouck 

I just got a great button at Congress. It says, "No, Oncology nursing is not depressing”

 tonimcrn 

I agree. The patients make it all worthwhile.

 Laurl at ONS 

That's a great button

 dcamp-sorrell 

I love it! I need one of those!!!

 tonimcrn 

I need one of those buttons.

 dcamp-sorrell 

Please get a memory book and start writing in it. I keep my family in stitches talking about my patients.

 dereenhouck 

I forgot who was giving them out. Maybe you could have some made!

 dcamp-sorrell 

Its so impt to remember the positive.

 tonimcrn 

I like the memory book idea

 dereenhouck 

yes, it makes all the difference!

 dereenhouck 

I'm going to go...great discussions!

 dcamp-sorrell 

I really enjoyed chatting with you. Please join us again.

 tonimcrn 

Me too. this has been really good. Thanks.

 Laurl at ONS 

The next chat is this Thurs at 10 am Eastern - please come and continue the discussion!

 dcamp-sorrell 

Good night and good luck!

 Laurl at ONS 

Thank you all for attending - our time is up - thank you Dawn!

 tonimcrn 

Good night