The Art of Caregiving

Greg Hedler, MSW, LCSW and Stephanie Fooks-Parker, MSW, LSW, of The Children's Hospital of Philadelphia, discuss the complexities of caregiving, how to have caring, honest conversation with members of the family around the topic of caregiving, and offer tips on how to manage the unique role of the caregiver.


The art of caregiving

Greg Hedler: Hello and welcome, thank you for joining us on this webinar this evening on the Art of Caregiving. My name is Greg Hedler, and I’m a social worker at The Children’s Hospital of Philadelphia. And my primary role here at The Children’s Hospital is working with families whose child has been diagnosed with a high-risk refractory or relapsed neuroblastoma. And I’m happy to say that I’ve been here for about a year, but have been in the field of pediatric oncology for the last 11 years. And I’m joined by…

Stephanie Fooks-Parker: My name is Stephanie Fooks-Parker, and I’m also a social worker at The Children’s Hospital of Philadelphia. And I work primarily with families who are going through bone marrow transplant. I have been at CHOP 20+ years, and I’m happy that you all are joining us this evening.

Greg Hedler: Well, Stephanie and myself are part of a caregiver committee that’s here at CHOP. And we thought that this webinar was very timely because November is actually Caregiver Month. And so we celebrate it by doing this webinar focused on the art of caregiving, and learning to place yourself first on your todo list. Or at least pretty close to the top is our goal today.

So this presentation that you’re about to see is a compilation of various resources and references. Both from personal experiences here at the hospital, and also those from experiences that Stephanie and I both have had in the professional realm of attending different conferences and lectures.  And what we’ve done is compiled that information into a number of slides that we’re gonna share with you today.

What we want to recognize is that you are a caregiver regardless of the composition of your family, whether you have a married family, a single family, divorced family. Whatever the makeup is — grandparents, aunts, uncles — whatever that looks like for you, we want to acknowledge that all of those players are caregivers. And that you are very specific and important kind of caregiver within this community.

That you are a provider, a nurturer to a child. And though this presentation is focused solely on pediatric oncology caregiving, we want to recognize that caregiving itself is not just limited to that of a parent to a child, or a caregiver to a child. That it can actually kind of run a scope across the lifetime. And that this again, presentation is specifically focused on caregivers in the pediatric oncology setting here at The Children’s Hospital. We believe that the information that we’re gonna share today can really be kind of utilized in various different settings as well.

The information that we’re gonna offer to you is, again, from both from a personal experience that Stephanie and I have had here working with families and patients. But also from an academic experience as well. But all taking place in the pediatric oncology arena. The information that we’re gonna offer tonight is simply suggestions, food for thought, ideas. Nothing that you’re going to see or hear today are strict rules that you have to abide by, but we thought that in putting this presentation together, it would be a really great way just to give you as much information about caregiving that you may be experiencing, that you may of thought of before, in a way that felt really comfortable and relatable to you. So we made all of this with you in mind in a way to help support you as the outstanding caregiver that you are.

Stephanie Fooks-Parker: So just some housekeeping things. There, this, I’m going to talk to you about how to chat and submit questions. So we have a moderated chat. Below the video feed is a moderated chat window. Use the window to connect with each other. If you’d like to submit questions, submit your questions using the chat window. Questions will be posted as they are answered during scheduled Q&A breaks.

Greg Hedler: So we will have three specific times throughout our presentation where Stephanie and I will pause and will be accepting questions. So we’re going to review the post before the answers are actually published. So you’ll notice a slight delay after you submit questions and comments, that we’re going to be able to then read them and then continue to talk about them with you.

Afterwards, this presentation will be available online, which we’ll provide you that information with later today. So if you want to watch this again and again because we’re going to be so amazing, you can certainly do that. You can just let your friends know about us as well and certainly pass the information along.

Stephanie Fooks-Parker: So our goals tonight are to identify the components of the caregiver role. To understand the impact of gender on the caregiver role. To explore the four domains of well-being for caregivers. Learn about communication climate within a family. Identify how communication can determine caregiver roles. Provide you with some tips for self-care and the art of caregiving. And gain an appreciation for your role as a caregiver and the excellent work that you do.

The parental role; so as parents you automatically are in the caregiving role. And when I use the words parents, this encompasses, as Greg mentioned earlier, this can be grandparents, foster parents, aunts and uncles who may be caring for their nieces and nephews. Anyone that is in that caregiving role.

Greg Hedler: And within that role of parent, we recognize that this actually encompasses a variety of demands. And that these demands, as a parent, exist in one arena. And then it’s overlaid with this other responsibility that comes along with being a caregiver of a patient with cancer. And that recognizing that you have both a responsibility that existed before, and after, is something that we’re appreciating today. That we know that there’s a lot of responsibility that exists on your plate just on a day-to-day basis. And that that day really has no end. That you are constantly on-call, you’re constantly providing this care both in the parental arena and as a caregiver for a child with cancer.

Stephanie Fooks-Parker: You are also thrust into this role of caregiving of a child with cancer or chronic illness without any warning at all. And as a parent once told me, “I've become a member of a club I did not ask to join.” You’re also in the midst of also trying to manage friends and family’s expectations on how you should be caregiving. And kind of dealing with that. And that can be really overwhelming.

Greg Hedler: So you’re balancing the expectations of you as a parent. You’re balancing the expectations as you as a caregiver. And as Stephanie said, with no preparation. And at the root of all of that, is your desire and your want just to protect and nurture your child. That is just an inherent want and desire that you have as a caregiver. That you want to be able to do things to protect them and nurture them. And then all of a sudden, cancer comes up onto the table and how are you going to continue to protect and nurture.

And all of a sudden we have up there, that you begin to have a contract with uncertainty. That the cancer diagnosis was nothing you ever planned for, it was nothing you anticipated, and it was nothing that you could even protect your child against from happening. So now we have this uncertainty of this entity of cancer being a part of your family dynamic. And having to live in that uncertainty throughout the treatment process and the diagnosis.

Stephanie Fooks-Parker: You’re also, as we’ve been saying, kind of thrown into this new role. But now, you are dealing with another group of people, and you become the extension of the treatment team. You’re part of, you have a role within the team now. And so you’re kind of balancing two things. You’re a caregiver, but now you’ve got this other group of people — doctors, nurses — that you must deal with. And you become a part of that family, so to speak, that extension of that team.

Greg Hedler: So I know for many of the families that I’ve worked with, this idea of them taking and being a part of a treatment team, or a medical team, is something they never anticipated being a part of. You know, so many families I’ve worked with haven’t even thought about going to school to be a doctor or a nurse. And then all of a sudden they’re asked to do these tasks that are very medically based. And so all of a sudden there’s this identity crisis that happens that, “Not only am I being a caregiver, a parent, a mom, a dad, an uncle, an aunt. All of a sudden I am now somebody who’s taken care of a child with cancer.”

So there’s this role shift that happens within the family system. And everybody starts trying to figure out what role they’re going to provide, how they can be the best caregiver then possibly can, within all the different arena we talked about.

Stephanie Fooks-Parker: And also, just trying to figure out who you are. Who was I before cancer? Who am I now? What are my new priorities in life? And sometimes we’ve seen, you know, families who are already in the medical field, who have now … are trying to struggle with their role as caregiver, but also, “I’m a nurse at my job, and now I kind of want to still be that nurse. But I need to be a mom, or dad, to my child.” And so there’s that kind of role conflict that kind of plays out for many families.

Greg Hedler: So what you can see here, we just kind of set up that idea of how caregiving and the parental role kind of really challenges you just from the get go. And we just want to, again, reiterate that we’re giving you information so that you best understand all the things and expectations that are happening for you perhaps at this time.

So prior to this diagnosis, it’s understanding of cancer, you are a family. As family looks for you, whether it be, you know a household with many children, with one child, whatever that household or that family and how you define it is. You were simply just going along, and you had expectations that were kind of the “normal” expectations that one would have for a family. That you had jobs, perhaps there were children in the home. You may have worried about what meals you were going to cook that night. You balanced things like insurance, and bills, and taking your kids to school, and afterschool activities.

And all of this was kind of being negotiated in its own way with its own expectations. And maybe even sometimes stressful. And then all of a sudden, the diagnosis of cancer then was inserted into this family system. And all of a sudden now we’ve given even additional responsibilities to this family that may not existed before, but now are existing in addition to the ones that were in the family before.

So as you can kind of see there on the screen, all of a sudden now you become advocate. You become somebody who is giving medications to your child. You become a care coordinator, learning how and when, what the child needs, what visits at the clinic need to be coordinated with yourself or your partner, other caregivers in your home. So all of a sudden this family is now asked to maintain this, for some diagnoses, over a course of a number of months, other diagnoses, you can continue to manage this over the course of the years. And even more so, you may continue to negotiate all these responsibilities for a lifetime. That this may be constantly things that are on you mind or on your radar that you’re constantly managing on any given basis.

Stephanie Fooks-Parker: This graphic is really so amazing because it shows all of the things, you know, that you all as caregivers have to deal with, as Greg said, but it’s just so powerful to just kind of see it all kind of come together, and the many things that you do.

Greg Hedler: Bottom line is that there are high expectations that are set for families that are going through and in the same position that you’re in.

Stephanie Fooks-Parker: So the cartoon on the screen says, “But your resume says you juggle.” So we’ve put together a kind of caregiver resume of all the many things that, if you were to, you know, develop a resume, these are the things that you do. And there’re probably many, many more things that could be added, but you monitor symptoms, you read, you manage time, you hope, you love, you educate others, you advocate, you nurture, make decisions, organize, provide hands-on care. And the list could probably go on and on, but it’s just another kind of way to see all the things that caregivers who are either on this cancer journey, or any other kind of chronic illness, all the things that you must deal with day to day, week to week, in caring for your child.

Greg Hedler: When Stephanie and I were creating this part of this slide, it was kind of just remembering or acknowledging the fact that the families that we interact with on this daily basis, really have all of this going on at one time. And like the comic said, the ability to juggle is is, again, inherent in your role here. And you’re constantly managing all of these different things. But how incredible you are for being able to do all of this at the same time. To plan, to make decisions, to do all of this, is quite remarkable when you kind of step back for a minute and recognize all the things that you do and that you possess.

Stephanie Fooks-Parker: So this, the next couple of slides are gonna talk about a study that was done by AARP. So this is where we gathered this information. But it talks about the gender differences in caregiving. And granted, some of these, you know, even though I’m going to talk about the women side, and Greg will discuss men, there’s overlap in these. And it doesn’t mean that all women do these, and all men do what he’s gonna talk about. But it just kind of, you know, gives you some idea of women and how, how we work as far as caregivers go.

For instance, we tend to perform more personal care tasks. So the feeding, you know, the bathing, just the actual taking care of those day-to-day things for personal care for your child. Women often carry the emotional demands of care giving. And a lot of times this can be evident by just most of the people in the hospital. The parents, or the caregivers that are staying with the children are mostly female. And so that’s kind of evident in that statement. A also with women being more likely to assume the primary caregiver role.

Women are also less likely to obtain formal help. And that basically meaning, you know what, women will take on things, you know, say, “I got this. You know, I can handle it. I can do this.” Without necessarily asking for help.

And then finally, women are more likely to experience cultural and social pressure to become caregivers. I think even though over time, and you can think of maybe your parents, or grandparents, and how, you know, the woman was the caregiver, stayed at home, you know, took care of the family, which is fine. But I think now these people kind of feel bad if, you know, as a mom, as a woman, you can’t be there for your child.

I can think of a family that I worked with where the mom continued to work because her job carried the insurance. So the dad was the primary caregiver. And she felt bad about that. She had a hard time dealing with that. But it was just out of necessity that that was the way it worked. She happened to make more money than her husband as well. So she needed to keep her job and he became the primary caregiver. And he was the one that stayed in the hospital with their daughter the whole time.

And mothers report the emotional work of caregiving as really very intense and very complex. And as previous slides have shown you, it is complex. Caregiving is a very complex thing.

Greg Hedler:  And moving into the idea of male as a caregiver or within that caregiving role, and what that context is. And we find, or we see here through this study, that men tend to focus more on the concrete tasks of caregiving. And these are just points of conversation that you may see this within your own family of caregivers that females may tend to move towards certain task, males may tend to turn to others that make them feel as part of this caregiving.

And so we see that men may focus more on those concrete task of doing and I had one family who’s father’s focus was to re-do his daughters room. Like that was his main goal. And it was very tangible for him, he was building castles and bunk beds. And all of this in an effort to really take control and to provide his daughter with that sense of caring. And so it was a really concrete task, but it helped him to cope with the issues at hand. With the idea that his daughter had cancer. So it’s very concrete.

Often time’s men may carry the physical or practical demands of caregiving. Some of logistics of going to work, maintaining the employment possibly in order to keep the insurance, or to keep the family finically sound. These are tasks that may be kind of on the male side of caregiving. And they’re more likely, then in turn, if the female counterpart is potentially the caregiver at the hospital, the male counterpart may be the caregiver at the home. And maybe maintaining some of those outside responsibilities. So again, there’s this role shift that may happen that for the first time, that this father figure, this male figure, may be taking on some of those household chores, or those things that may have been outside their role previously.

They’re more likely to obtain some sense of formal help, or seek answers outside. So again, perhaps males will look towards going on-line, asking questions, looking for research, and taking on these types of task in order to cope, or to maintain that sense of caring involvement.

And as Stephanie had talked about, the cultural and social pressures of the female. There are culture and social pressures towards the male to be perceived as strong, to be the provider, to be the supportive one for the family unit. And these are social pressures they may not always be present, but they may be felt by the family. And just something to acknowledge for yourself, maybe there’s a social pressure that’s playing the part of how you’re coping or what you’re feeling you should or should not do, or be.

And through this report we find that fathers reported that they felt sometimes they felt uninformed and confused at times regarding treatment. So perhaps the father, the male figure, may not be always present at the hospital, that are clinic visits. They are the ones that may be maintaining the life outside the hospital. So they feel sometimes uninformed and not certain of what is happening medically because they may not be part of those conversations that happen at the hospital, or at the bedside of the child, or within the outpatient clinic. They don’t have that firsthand experience of information, so they’re left sometimes feeling uninformed and confused.

Stephanie Fooks-Parker: So this slide’s gonna just talk about coping and the gender role. And for female caregivers, we tend to be more relational orientated. So that relationships are very important for us. Sometimes talking things out is more important for us. So you’ll see some additional things. And once again, this was done by AARP, this study and these statistics that we’re going to show you.

Greg Hedler: And just to be noted, male caregivers tend to be action oriented. So as opposed to women with the relational nature, the men seem to be more action oriented like we had discussed earlier. Just the idea of doing is tending to be a coping mechanism for male caregivers.

Stephanie Fooks-Parker: And so as you can see with this, for instance, for praying and meditation, more women than men tend to use that for helping them to cope. With talking and connecting with others, women, once again, tend to do that more so than men. Women will seek support from their friends, from you know, other family members potentially, more than men do. And keeping feelings inside, what this is saying is that 23% of women keep feelings inside. Meaning that, more woman tend to talk and express their feelings more so than the men do as well.

Greg Hedler: The study goes on to talk about, they pose the question, “If you were given an extra hour” both to the female caregiver and the male caregiver, “What would you use that hour for?” And what you found out here is that, you know, the notion of putting your feet up and kind of taking a break and reading. You saw that females tended to be more, but not so much more, prone to do something like that, or enjoy that hour. Meeting up with a friend, women tended to desire that. But that idea of a relational oriented coping mechanism.

The idea of being pampered, we saw that women felt like maybe they wanted to get their hair done, or their nails done would be something that would be supportive to them. Cooking or baking, to spend uninterrupted time with their spouse. We kind of saw a close proximity there between what they would choose to do. And again, more action oriented, going to the movies, or sporting events, or some sort of recreation. We saw more men may have opted for that extra hour to be used in that way.

So regardless of kind of maybe whatever gender role that you have within your caregiving family. These are just suggestions of what people did, and how people coped with their caregiving role. And I think we offer it just to show that both you and perhaps your counterpart may cope differently. And that’s okay. But I think the key here is to know how you cope, and how your counterpart copes in order to make sure that everybody is being taken care of, and that you’re managing this caregiver role to the best extent possible.

So we offer this as a point of conversation, and a point of suggestion. What works for you? You know, ask yourself, what of these things, or what else works for you that you want to make sure that you know for yourself, and that you share with your caregiver counterpart.

Stephanie Fooks-Parker: And so regardless of the gender role, there are things that men and women experience. Caregiver strain, which is feeling overwhelmed by tasks that you may have to do, and also when caregivers perceive difficulty in performing their roles as well. Also there are times when caregivers may have an emotionally challenged day and I’ve had families that have you know, either had a bad day, or gotten some really bad news. And they have to kind of put their emotions in check because they need to go back and support their child, or their husband. And they can’t really let their emotions flow the way they want to at that particular time. So you know, caregivers sometimes have to manage their own emotions while they support others.

All caregivers want to be included, not to be left out. And the family that I was mentioning earlier where the mom continued to work, and the dad was the primary caregiver. Well the mom would come in on weekends and, you know, she felt left out because half the medical team isn’t there on the weekends, so she wasn’t necessarily getting all the information. And her husband was doing a very good job of keeping her up to date. But she did not get to see the day to day goings ons and the attending that were on during the week and everything. And so she wanted to be included, but was not. And I think, this was many years ago before Skype was a big thing.

But now we have those kind of options for families. So that they can participate in the daily rounds, and can be Skyped into the room when the team is there so that families can be more included.

And then all the caregiver roles, and I think Greg mentioned this earlier, they overlap and they’re complex. You know, even though we said that women tend to do this, and men tend to do that. They all over lap. And you know, men may do some of the things that, you know, our slide show, that women tend to do. And so it’s just not one size fits all at all.

And then we all, you know, as human beings, just want to be in relationships of some sort. And want people to, you know, give back that as well. You know, we want that kind of connection to people. And we want them to be connected to us. And so those are some of the things that, no matter if you’re a man or a woman, some of the things that you have to deal with, with your caregiving.

Greg Hedler: So this is where we’re going to briefly pause here just to take some questions. Maybe about what we already talked about, just recapping some of the different things we talked about regarding caregiving, the roles, the gender roles, and how we cope.

Stephanie Fooks-Parker: So we have one question right now. And the question is, “The more information I have about my child’s illness, the better I feel. At times when in the hospital, I tend to get mixed messages. What is the best way to get everyone on the same page?”

And I think at times, you know, you as a family in the hospital, you have the right to speak with your primary care team. And let them know that you’re kind of feeling kind of confused, feeling like people aren’t on the same page. And you can always, always request a family meeting. And you can also speak with your psychosocial support person at CHOP, per se, it may is a social worker, or a child life therapist. And say, “You know what, I’m just feeling very confused and overwhelmed. And I need to, need help, you know, getting people together.”

And so we’re used to doing those kinds of things where we pull the team together and get everyone in the same room to kind of talk about what’s going on so that everyone can understand and be on the same page. And also, the person is also, the psychosocial person or a nurse, can take notes for that meeting as well. So that you can go back so that you can make sure that you really understand things.

I mean I’ve had to do that with a family who had very complicated situation with a lot of services involved. And having meeting with the mom prior to the family meeting, to talk about what she wanted to get out of the meeting. And what her questions were and kind of reviewing that with her. And then getting the team together to be able to talk it out. And it was very, very helpful for her.

Greg Hedler: The other thing that I just think about with this question is just in acknowledging that sometimes only one caregiver can be present at the hospital. And if you’re feeling as though the information is really important for you to feel better, and Stephanie had mentioned this before, about finding ways in which to connect that partner that may not always be present at the hospital, to the medical conversation. And I’ve seen families kind of come in with their iPads, or their phones, and to do things like FaceTime or Skype into the different medical conversations so that they’re at the clinic visit.

And though they may be at work, or they may be at home, they’re still able to kind of take that ten minutes to talk with the doctor. To have their questions answered, to hear what the doctor’s offering so that they leave with a better sense of what is happening. And that medical information to help them to kind of feel better and to cope with the day. So I think in this age of webinars and all this different ways in which we connect to one another, that we can really use that in order for everyone to be on the same page, and also to alleviate that responsibility of that one caregiver who may always be at the hospital, to provide all the information back to those other caregivers at home. So I think that using those ways to communicate are really, really helpful.

So please feel free to provide us with additional questions and answers. We’re here for you to talk about caregiving and whatever other questions you have. Please feel free to type them into the box at the bottom of the screen. Going to move forward now.

We’re gonna now talk about the domains of wellbeing. So we’ve kind of set the stage here to talk about the caregiver role, the different ways in which kind of individuals may cope with the caregiving role. And now we’re going to go ahead and we’re going to acknowledge that you really cope under these four different domains of wellbeing. So if you were to break down the ability to cope, or how you cope, we really look to these four different domains as means and ways to make yourself feel better.

We have a physical, psychological, social, and spiritual domain that we all function under. So these four domains really then kind of influence our sense of wellbeing. And we have a quote up there saying, “Wellbeing cannot exist just in your own head.” So we cannot just think about being well, but actually wellbeing is a combination of feeling good as well as actually having meaning, good relationships, and a sense of accomplishment.

And so balancing these four different domains, is something that’s an on-going task for you. Something that all of us, regardless of a diagnosis or not, are always managing and existing under. So whether we acknowledge these four domains as kind of maybe “important” we recognize that we do all exist in these different realms, these different ways of wellbeing.

And so our job as caregivers is to constantly balance and go back to these domains in order to gain an overall sense of wellbeing. So we offer the information about these four domains because maybe there are days that are really hard, that you can then go back to these four domains and look to see how you can cope, and how you may function maybe in a more helpful way for you that day, then maybe you were previously. So we’re only acknowledging these in a way that allows you to have more information so that you can help yourself on those days that you need to.

Stephanie Fooks-Parker: So we’ll start with physical wellbeing. And that is the aspect of taking care of yourself. And then dealing with all the tasks that come with the role of caregiver. And these are tasks that are, you know, day-to-day needs that you didn’t have to deal with prior to the diagnosis and treatment.

And the physical impact of caregiving can occur overtime. And there’s some symptoms or issues that can come with the impact of caregiving. And I’m just going to touch on a few of these, but sleep problems. A lot of us, you know, have our minds are constantly going. And you’re thinking about what you have to do tomorrow, and the next day. And so that can lead to not getting a good night sleep because there’s so much on your mind. Pain, our bodies are kind of, when we’re stressed, can develop pain in different areas, you know, people talk about, you know, your shoulders being tight, your neck. Those kinds of things that can come with all the stress that’s related to the caregiving.

Fatigue, exhaustion, burnout, all of those are evident. Particularly when you’re just really overwhelmed and you’re not getting the sleep that you need. Loss of appetite and weight loss, those, you know, being in the hospital, particularly you don’t really eat like you should. I was talking to a mom recently who said, “You know what, I eat once a day.” Cause that’s how she felt, that’s the time that she could allocate for eating, and not leaving her baby alone for very long. And so, you know, we can’t really eat a healthy meal, usually you’re snacking and that’s just kind of, can add to weight loss.

But is also can do weight gain because in the hospital you’re just, you’re not sitting, you’re not moving. You’re sitting, excuse me, you are sitting, but you’re not moving around as much. And getting, you know, the exercise that you need when you’re outside of the hospital. And sometimes there’s snacks, and cookies, and cereal and all those kinds of things around. And you’re kind of just grazing and all. And I did have a parent who wouldn’t go outside necessarily to work, but she used the steps and she would just take, you know, a half an hour to go from the first floor to the eighth floor and back down again just to get a little bit of exercise. But those are some of the impacts that can come with the caregiving and the physical side of things.

Greg Hedler: So acknowledging that physical side of things, now we just want to provide some suggestions on how to maybe manage some of those impacts a little bit for yourself and for your family. And so we suggest that, again, from the resources that we’ve compiled and we’ve read, they say that trying to develop a schedule for you and your partner, and all your children and family, tends to be really helpful. So we know that having a child with cancer is unpredictable, as we had said to begin with. But trying to create a schedule as best as possible, helps your family to gain a physical sense of where people are. How to manage certain responsibilities and tasks. So as to decrease the amount of stress maybe that’s on your plate.

And that when people offer assistance and support, say yes because you are one person, maybe you are in a family or partnership that allows you to then spread that responsibility. But even in that sense, saying yes allows you to take physical care of yourself, and know that you don’t have to spread yourself so thin in order to be a good caregiver. That saying yes is actually a really empowering thing to be able to take care of yourself and your family.

And then that same way it is relinquishing some control, and to spread that responsibility. And though it feels good at times to physical be in control of a situation and to kind of think you need to take all responsibility on, you may begin to feel a sense of release of the tension of the responsibility by allowing some of that control to be shed or spread with others.

And it is suggested that to find 30 minutes and maybe 30 minutes is even a huge amount of time to even think about as a caregiver, but even if you took between 10-30 minutes just to do something for yourself. And maybe that is exercise. Maybe that is going to the doctor and doing things for yourself to make sure that your physical wellbeing is at its best. Managing a lot of those caregiver impacts that we had just talked about.

The next domain that we see families kind of exist under, that all of us really work under, is the psychological domain. And this is a very personal experience for people having a child with an illness, with a diagnosis of cancer and going through that type of treatment. There are definitely emotional impacts that can influence and really impact you personally on a really emotional level.

So we look to that psychological wellbeing and the efforts that it takes to again, what is going to build you confidence, a sense of control, and in order to manage those levels of stress and the overall emotional sense, or the impact of the experience. Cause we know that that does exist.

So looking at possible psychological impacts of caregiving we see that there’s a day-to-day stress that’s ongoing that constantly exists there in that 24 hour, 24/7 caregiving role. So there’s this day-to-day stress, there’s that time period of adjustment between finding out that your child has this diagnosis of cancer and moving in and transitioning in how they’re going … how you’re going to manage the treatment end, while maintaining a sense of balance within the family system.

There’s the educational components, the sense of grief, the idea that in a way you’re lost that sense of a healthy child. And that’s really impacting the way in which you perceive your child, and then the way that you really begin perceiving your sense of self as a caregiver. Again going back to those previous slides talking about the inherent need to be the protector and nurturer. So there’s some grief, some psychological grief that comes along with finding out that your child has an illness.

And with that emotion, come sadness, nervousness, fear or worry. All things that are very typical and normal given the situation. So these are kind of typical impacts of psychological wellbeing.

Stephanie Fooks-Parker: And then there’s some suggestions on how to manage this impact. You can share and express your feelings with your partner, your family, your hospital team. Try to open up yourself and be able to talk about it. Participate in a group, on-line or in person. Be honest with yourself about your feelings. Try to kind of look within to see, “Why am I feeling this way?” And also some supportive counseling which can happen with your social worker at your hospital. They can help you with some of that.

The next domain is social wellbeing. And as we had mentioned earlier, we are relational by nature. And look for a sense of connecting with others. And caregiver, you’re in another social category. And you can sometimes be limited, have limited opportunities for socialization. And there can also be a shift in your relationships within your family system.

And some of the impacts for the social wellbeing. You have a sense of isolation. You know sometimes people when they’re in the hospital, there are families who tend to be those that are out and about and want to socialize with everyone. But there are also a group of people who do not want to do that. And feel very isolated. They don’t want to get to know anybody else because of the fear that, you know what, “I’ll get connected to these people and then something bad will happen.”

And sometimes, you know, outside of the hospital, friends and family, they don’t really understand what you’re going on … what’s going on with you. And they don’t really, they can’t really relate in any kind of way. So that’s another way of feeling isolated because you don’t have anybody outside of your hospital community that you can really talk to.

Adjustment and transition. I think sometimes, depending on your treatment, you may have to go to another center to get the care you need for your child. Or you know, radiation which is not being done at your hospital so you have to meet another team of physicians, and social workers, and nurses. And so some of those transitions can be really hard. Because now you’ve got to kind of do this all over again, and kind of meet more people.

Education, some people want a lot of education and want to look at things on-line, and some people don’t. And so they don’t want to get all that education. And some of the things that you can find out on-line are very, very scary. And so you have to be really careful about what you look at when you’re doing that information gathering. Some of the others, similar things; grief, sadness, nervousness, burn-out, fear, and worry.

Greg Hedler: Some suggestions on how to manage this type of impact is to find those supportive relationships that are able to be present. To the shifts and changes that Stephanie was just talking about. To be present to that sense of isolation that you may feel. Because there’s certain topics, when you go out with your friends, that you may not find interesting or engaging, or even that important anymore. I hear that a lot from caregivers that say it’s hard for them to go out and relate to others because what’s important to them, or something has shifted in the caregiver, that it’s hard to relate to the other friends that they had. So it’s really then encouraged that you find the sort of relationships that can really be present to where you’re at. And that you feel most comfortable in.

Encouraging to joining a social group or a club. To do something that is just non-oncology related. To do something that is for you. So some of the suggestions of a knitting club, or a book club, something that would be sort of enjoyable and sort of an escape momentarily. Similar to supportive relationships and attach yourself to people and things that offer you hope. So in a way to stay connected, to stay hopeful in a very challenging situation.

And last, as we had talked about earlier in staying connected. There are so many different ways now that people can be connected. Whether it be through social media, through blogs, through Skype. Families that I have the privilege to follow, they are from other countries. So lots of times they’re Skyping in family members just to, again, to find those supportive relationships and stay in a social wellbeing. And staying in a social context so that they can continue to find the support and that sense of connectivity, that sense of being relational by nature. You want to connect to others. So find ways in which to do that that feels good and right to you.

The final domain of wellbeing is the spiritual one. And again, like the psychological, this is a very personal experience. And can really vary in definition and practice from person to person. That spirituality, that word may illicit certain ideas and images for one person that may be very different then another. So in this context of spiritual wellbeing, it’s being connected to your own personal inter-life, your personal growth, your sense of a wider, bigger world than just this experience.

And through the study that we drew this information from, it was saying that being in relationship with that sense of a wider, bigger, sense of yourself can actually lead to a sense of overall wellbeing. A sense of support, or connectedness.

During the oncology process and treatment, that this sense of spiritual wellbeing can be impacted. And again, you can begin to feel isolated, maybe even sometimes angry at your sense of spirituality because you feel isolated and left alone to deal with something as difficult and as challenging at points as an oncology diagnosis in a child. And that yet again, you go through this adjustment and transition period of being really close to a spiritual center, and then moving further away at times of maybe upset within the treatment process. And this is a constant transition back and forth. And that it can consistently and continue to be impacted throughout the process.

And you may then gain, again, a sense of separation. Through that can come fear, certain questions, and overall loss or, sense of, “What is my relationship to this inner sense of myself, to this deeper sense, or this bigger sense of who I am?” This relationship can be questioned and impacted by the oncology experience.

Stephanie Fooks-Parker: And some suggestions on how to manage spiritual wellbeing, the impact of spiritual wellbeing, spend time alone to think and to feel. Take time to be outside. Attend a place of worship. Enjoy a spiritual support group that works for you. And at CHOP we do have a spiritual support group that is run by our chaplain, but like Greg mentioned, spirituality is defined personally. Everyone, you know, has their own meaning and it doesn’t necessarily mean religion.

Speak regularly with someone from your spiritual circle. And seek purpose and meaning in life.

Greg Hedler: So we offer these four domains as just a way in which to help categorize opportunities to cope. To look at yourself and look at the physical, psychological, social, and spiritual domains of your own personal wellbeing. And think, “Am I coping to the best extent possible within the physical, within the spiritual? Am I able to make efforts in order to make sure that I am coping maybe better?”

So we offer them just to kind of categorize the way in which we cope and for you to gain a bigger prospective of certain impacts that may be happening for you. And you may or you may not relate to some of the things that we offered so far.

We’re going to pause here again to open up for some questions just about the topics that we just talked about.

So we have one question here that says, “I’m interested with connecting with others via a support group, or one and one. Are listservs a good place to connect with others on the same journey?” And it goes on to say, “Can you give me any resources?”

So I think listservs are a good place to go to for a sense of community, a sense of, again finding those supportive relationships with other people that may be going through the same type of journey, as this person had said. Or experience that you’re having. So certainly I would think that listserv are a great way that families can connect with one another to be able to share the experience that they’re having. And to really be relatable so that you’re connecting with other people that really understand your experience and your process as a caregiver of a child with cancer.

Some suggestions, I think, that we have here, Cancer Care, definitely offers a listserv.

Stephanie Fooks-Parker: And I think they also have on-line support groups as well. And then Imerman Angels is another resource. And they’re good for finding, connecting you with another caregiver who has gone through the same thing. Like a peer-to-peer kind of support group. And then the Gilda’s Clubs, which are a little bit limited in where they’re located, but they also have some groups and things that are available.

Greg Hedler: Very good question.

So we’re going to move on to our next section, which will be the final section that we’re going to talk about. And this is highlighting, so we’ve acknowledged kind of the caregiver, the role. Then we’ve acknowledged the different ways in which we cope. The different domains of wellbeing. And to help enhance how we cope, we want to just reflect upon the family system itself. And how your family specifically communicates. Your family defined as you define family, whoever that is within your family system. Moms and dads, and grandparents, and however that may look. So we want to just acknowledge that family’s communication style is another way that can impact the caregiving process.

And that the way in which your family communicates with one another has been established way before your child’s diagnosis. That how you relate and communicate is something that is inherent to your family and has existed over a long period of time. So we show some seasons there, and so some families may have a very sunny, very warm and welcoming communication style. Some other families may have a bit crisper sense of communication style. And then you may see some other families that have a very frigid or colder side of communication.

None of these are right or wrong, they’re just kind of how your family communicates with one another. And it’s important to acknowledge kind of this style in order to know how it will impact the caregiving that you offer.

So as I just mentioned, that the medical impact or illness, does not create this family dynamic of communication, it actually brings that communication style to light because you’re communicating more with one another consistently over a period of time about a very specific topic, this sense of dynamic is to really reveal itself.

And the two concepts that we’re going to talk about today, is called conformity and conversation. And both of these are elements we’re going to talk about in relationship to how families communicate.

Stephanie Fooks-Parker: Just a brief ecological view of the family. Family is made up of parts and players. Each part influences the family system. And the family and the caregiver you designate the boundaries and the communication style of your family. And as Greg mentioned, the communication style, it’s not a right way or a wrong way. It just is what it is and that your family had this communication style prior to the diagnosis. And in talking about the two words that are used to describe the different boundaries that I mentioned a second ago, are opened and closed.

Greg Hedler: So what we’re going to do now is just talk about these family communication styles and those two words of conversation and conformity. So just to kind of help you understand here, when we talk about conversation orientation of a family, this means that a family has the free will to talk as often as possible, as frequently as possible. That there is no limitation or that there’s no topic that is limited within the family.

So different families can have two different types of conversation. They can have high conversation and low conversation. So it’s taking these ideas of freely, frequently, and limitation, and then defining them as high conversation is a family that is able to talk at any time, at any part of the day. And is able to talk about any topic freely.

A family that has something called low conversation is there’s less interaction here. There’s less frequent interactions. And that there’s only very specific topics that this family can talk about. So you may be thinking already like there are certain hot topics that families can’t freely discuss at the dinner table. And there may be other topics that feel very comfortable for the family to talk about.

So whether you family’s high conversation, or low conversation, doesn’t matter, no right or wrong, it just means that there is a conversation type that exists here. We’ll provide you with some comic relief here. And so this comic says, “Let’s turn the conversation back to you for a moment. What makes you think I’m so self-centered?” So this is an example of low conversation. That the topics are very limited and it’s basically about the other person. So they kind of always go back to that sense of me, “What’s happen for me?” And so that topic is very limited. Something called low conversation.

Talking about conformity orientation, so this is another way that families communicate with one another. And we talk about same attitudes, same beliefs, same values, and fixed family roles. So how that comes about is either through high conformity, or low conformity. So families that have high conformity are showing that there’s an emphasis on harmony. There’s an avoidance of conflict. That they look to connect to one another. And there’s a sense of obedience to the parents. So this is a very high conformity. Same values, same attitudes, fixed family roles. Low conformity is a look on the emphasis of what’s different. So low conformity means there’s allowing different attitudes, allowing for individuality, allowing for uniqueness and independence.

So here’s a bit of a cartoon here. And this is “Parenting for Lemmings.” And the mommy lemming is saying, “Yes Scott, if all your friends jump off a cliff, then you should too.” This is a sense of high conformity. That there’s harmony, that there’s one attitude or belief, there’s one value, and this is what you’re supposed to do.

So we share these two different conformities and conversations to then just briefly put up a chart here, just again, to give you some maybe insight and curiosity about your family. Are you a high conformity family? Are you a high conversation family? Is there freedom of topic? Is there limit of topic? And what we’ve done is taken a study that we found and gone ahead and charted it in a way, just to give you insight and information about maybe who you are as a family caregiver. So that you have a sense of how best to relate to your family members and to the overall medical team.

So there are four different kind of quadrants here that you see. And each one has a different label on it. And we’re going to talk about the upper left one first, called “Protective.” So the type of caregiver that is a sense of kind of protective caregiver, one with low conversation and high conformity. Is somebody that we would call a carrier. That the illness becomes very private. That is very patient driven or patient focused. That there may be family conflict here. And that caregiver pressure is to over perform. Because this one person may be the sole carrier, or the caregiver, than they feel a lot of pressure to make sure that everything is taken care of. So there’s high conformity, meaning everybody participates in certain values and beliefs, and a fixed family role. But there’s low conversation, meaning there’s topics that are not spoken about. And the frequency of conversation is very low. So it’s isolating for this one person called the carrier.

Stephanie Fooks-Parker: The next one, block we’ll go to is to the right, upper right corner. And it’s consensual. This is a high conversation, high conformity. And if you remember, high conversation where there were no limits on topics, or anything like that. And they could really just pretty much talk about anything. And this person, or this style is a manager. So they are obligated to conform to family. There’s limited perspectives about the illness. And the caregiver controls the conversation.

Greg Hedler: Moving to the bottom left now.

Stephanie Fooks-Parker: Is Laissez-Faire, and that basically as defined is kind of, let it be, leave it alone, non-interference. And so that’s a low conversation, low conformity. And that’s a loner. So someone who is in isolation, or isolated from all members of the family. This caregiver could be experiencing burnout. And conflicts are frequent to arise within the family.

And once again, just to kind of reiterate what we said, is these, neither one way is right or better than the other. These are just kind of giving labels to some how people how families communicate. And so we don’t want people to feel like, “If I’m not, you know, the protective carrier, person, then something’s wrong with my family.” No, this is just kind of giving you an idea of how different families communicate. And neither one is right or wrong.

Greg Hedler: Well said.  The last box that we’re going to acknowledge here is the pluralistic type of caregiver. This is high conversation, low conformity. So frequent conversation opportunities, frequent topics to talk about. Low conformity is that there doesn’t have to be a specific set of values or beliefs, or a fixed role. That there’s allowed for diversity or individuality. So this type would be somebody called the partner. And it’s open for discussion, being part of the team, it is very solution focused.

And I really appreciated what Stephanie was saying. That none of these are right or wrong. It is offered to you today just in a sense of kind of acknowledging where would you fit on this quadrant? What do you think your family caregiving style is? And it’s just so that you have a sense of awareness of yourself and how you’re managing your child’s illness. So that you better, you can better cope with the reality of the situation. How you can really manage all of the demands of the treatment and diagnosis.

So we’re going to move ahead. We don’t have any questions right now. So we’re going to go ahead and move into part of our final part of our presentation.

Stephanie Fooks-Parker: So the final portion of our presentation is a visual guided meditation. You will see suggestions and tips from other caregivers on how to take care of yourself. We designed the last five minutes of this presentation for you. There are no more slides after the guided imagery. Please feel free to contact us by our e-mails which will be shown on our last slide. And if you have any further comments or discussions, do not hesitate to reach out to myself or to Greg.

Related Centers and Programs: Oncology Psychosocial Services Program, Cancer Center