Nursing Intervention For

hello. my name is michele hurtig. i'm thedirector of nursing and patient services in the cardiovascular in-patient and cardiacicp at boston children's hospital. many studies say that the rising cost of health care, alongwith cost-shifting by employers, have resulted in higher out-of-pocket payments, in the formof premiums, deductibles, and co-payments for families. as a result of the economic burden and stressexperienced during the time of inpatient care for most families, this is a potentially increasedstressor. medical and surgical advances have allowed many congenital heart defects, onceconsidered life-threatening, to be managed as a chronic illness.

depending on the complexity of the disease,medical and surgical treatment may occur in the newborn period or shortly thereafter.so how does this burden impact families of children with a chronic condition such ascongenital heart disease? we are here today with doctor jean connor, director of nursingresearch for the cardiovascular program at boston children's hospital. we will discuss this very question, and reviewher outstanding research on the meaning of cost for families of children with congenitalheart disease. good morning, dr. connor. good morning. thank you for joining me today.

of course. i was hoping to start off with a little bitof background on how you became a nurse-scientist. mm-hm. so, well, for the most of my career,i've actually been a clinician, and have worked with families and children of various diseases,and probably for the last 15, have worked with congenital heart disease families. andjust really thinking about what it was that i was doing in being part of their healthcare team, and preparing them for whatever piece of intervention that they were gettingready to go through. and so as part of my role, i often would preparefamilies for congenital heart surgery or cardiac catheterizations. and through all of thatteaching and preparation, what was significant

to me was the economic questions the familieswere asking me. i would tell them things, well, you know your child could possibly dieor have a stroke. and after i would finish all of that, theywould ask, well, how many days do i have to be out of work? how much money should i bringwith me to the hospital? how much do you think the co-pay is? how much do you think my insuranceis going to pick up? and so that was very, i think, important for me to understand better. and so as i went back and sought doctoralstudy, i thought one of the first things that i wanted to investigate was this whole phenomenonof economic burden. and so that kind of led me on this path of becoming a nurse-scientist.

that's great. and obviously, the interestin cost burden to families. yes, yes. so can you elaborate a little bit on the backgroundto what got you to this study? as i was thinking about how i would seek thisinformation to understand better the economic burden, i went to the literature and reviewed,really, a vast amount of literature in the area of pediatric oncology, and how thosefamilies were coping with the chronic illness and the economic burden there. but it became very apparent to me that therewere almost no studies around the experience that families of children with heart diseasewere having. but what was interesting to me

was information about the cost of congenitalheart surgery. and so thinking about this extraordinary costof having children we repaired for their congenital heart defects, i thought, well, there hasto be some kind of burden to the families. and so that gave me even more informationpointing me in this direction, that i really needed to understand it from the family'sexperience, this whole idea of having a baby born with this type of disease, and then goingthrough the process of some type of intervention to address their disease. and how did you decide on the methodologyyou used? well, that was also interesting. in my doctoraltraining, i was trained very much quantitatively.

so, always looking for some kind of surveyor tool to help acquire that information from families. but when i went to the literature,and reviewed all available tools, nothing was really specific, i think, to me reallyunderstanding this as best possible. and i didn't want to make an assumption thatit would be the same experience for families that had congenital heart disease of familieswho would have a child with cancer. and so, it was that thought that really led me toa brand new methodology that i had never experienced, but using qualitative. really, just talking to families. doing thatin the form of interviews. and so, that is what led me to using this particular approach.

that's wonderful. i'm sure that had a personaltouch to it as well. well, it was scary for me, because i had never--again, in all of my training, used that type of methodology. so i really had to seek outmentors. but i realized that that was the best way to get that answer. and how did you find the process when youstarted? actually, very exciting. of course, it wasvery much a learning experience for me. but at the same time, i felt that i was actuallygetting the information that i wanted. so although in an area that wasn't quite knownto me, having the validation that as i was engaging with the families-- and we couldtalk about the specific methodology in a second--

that i was actually getting what i neededto understand this whole phenomenon better. can you tell me how you went about selectingthe families? yes. so at the time that i was starting thisinvestigation, i also was able to maintain a clinical role, and working on the nursepractitioner team that cared for the families in their post-operative period. so it wasin that ability of working with families on the inpatient side and the hospital side thati was able to select families. and i wanted to think about this in a few different ways. i was trying to understand this whole phenomenonof cost and the burden of cost, but also realizing that our patients, our congenital heart diseasepatients, there's a broad spectrum. there's

what many would consider a very straightforward,very simple type of defect, but we have a range that goes to a very complex state, wherepatients often need multiple surgeries. and so i wanted to make sure that i understoodthis from that simple, not complex, congenital heart disease state, to the very complex.but i also wanted to consider this whole idea of cost, and economics, and what familiesbrought to the table with their socioeconomic status. and so, it was through that ability to capturethe range of complexity of heart disease, and the range of what families brought aroundtheir socioeconomic status that i believed both things played a role. so when i wentthrough this process of recruiting families,

i used two guides. something called the hollingsheadsocioeconomic status tool was very helpful in me identifying families by their approximatesocioeconomic status. and then also, the risk-adjustment for congenitalheart surgery is a way to categorize how complex disease is. and so, in my recruiting of thefamilies, as i was recruiting families, i was paying attention to both those things.so i would have potentially families from across the socioeconomic spectrum, as wellas the complexity of the disease. so those were the two things that guided mewhen i spoke to families. and when you do this kind of work, where you're trying tocapture an experience, you really want to make sure the family has an experience, right,before they can actually tell their story.

exactly. and so, for me, that made an important decisionas to when i would speak to them, when i would reach out to them. and so, it was just priorto their discharge. so they would come in the hospital. they would have their surgery.they would have their recovery in the intensive care unit, and then be at a point where theywere going to be discharged within the next day or two. so that's how families were identified,and then actually recruited into the study. what a wonderful time to choose to speak withthem as well. from my experience working on the floor, i think that's a good time forthem to be much less stressed, and be at a more comfortable level to have a discussion.

we would like to turn to our audience andask a question at this time. please state your city and country when responding. inyour institution, do you currently screen families for economic stress? if so, whattools do you use to screen families? ok. tell me a little bit about the questionsyou were asking them. well, when you start this process of tryingto understand a phenomenon or examine a certain issue, you start one way, and then you findthat families and patients have a way of really telling you the true way. so all of your priorassumptions usually shift. but as i was thinking about how i would engage families, i thoughtit would be very important that i allowed them to tell me the story.

so the technique i used was something calleda semi-structured interview process, so that although the interviews were going to be heldfor an hour-- so when i spoke to families in the recruitment, i said, it will be about45 minutes or an hour of your time, i actually had a guide, a script. and so i thought, beforeactually sitting down with the families, what questions would i feel would be most important,but allowing them to tell me things that they felt important at the same time. so there were a series of questions that iasked. and i think probably the most important question was this overall meaning of costto families. so that was my first question that i always started with, was can you tellme the meaning of the word cost to you? what

did that mean to you? and just to really based on that response,used my following questions to really kind of guide that conversation. and so, i didprepare a series of six questions, but really used that first question to really understandwhat the family-- where they were going to go with the conversation. and that's a very important technique in qualitativeresearch, correct? to have this open-ended question to help get as much information aspossible. exactly. exactly. allowing a way for the familyto tell you the story, and you not tell them the story.

or prompt any answers. right. wonderful. so what were the findings? the findings were interesting. the first thingthat i learned is that families had many different definitions around this word of cost. i, again,was very, very interested in the whole financial. what was the dollar amount? was it $20 youspent? was it $40 you spent? what was that? and actually, that wasn't the story they wantedto tell me. they did touch upon finances, especially in that day-to-day. and i'll explainthat in a moment. but what was more striking

to me was how they interpreted the word, andusing that word in a way that didn't necessarily mean a financial cost. there was an overall sense as to what theyexpected, but very much it was very unexpected, and very uncertain, and really impacted notonly their overall lifestyle, but it impacted how they related to- if there were previoussiblings in the family, their marriage, their work life, how they maintained their finances. it was just having that diagnosis, and havingthe need for the medical or surgical intervention was something that impacted right at the timeof diagnosis. and so maybe it would be helpful, before going to the true results, just togive you a sense of the families.

absolutely. that'd be great. and then that could really set the stage forwhat families were saying to me. so when we do qualitative research, it's not as muchabout numbers. so unlike quantitative, you would expect maybe a recruitment sample of200 or 300. but when you're doing qualitative, you're really looking for the detail, therichness, of the data. and so often, it's expected, if you're recruitingwhat we would consider a homogeneous, meaning things are similar, group, you would say sixto eight participants. and i ended up with a total sample size of 20. 20 families. butit was very interesting. families really wanted to be part of the study.

that's wonderful. in the beginning, there were many that saidoh, nobody's going to want to talk to you about cost. this is very sensitive. you don'task people about their money, their finances. and what happened was word got out that iwas doing the study, and families were actually following me down the hallway saying couldwe be part of your study. so i ended up with an overall size of 20 families,and that did allow me to cross that range, as we said before, of the socioeconomic status- that range. and then also, the complexity of the different defects and repairs the childrenwere having. now something that was very important to me,and this was thinking of the finances, and

who manages the finances in the home, andhow does that conversation work, is that i really wanted to attempt when possible tohave both the mom and the dad, the mother and the father, be part of the interview.and i think for the 20 families, there were 12 of the 20, or 60%, that i was able to getboth mom and dad to be part of that interview. that's amazing. when it was just the single parent, it wasthe parent that managed the finances. and so that was interesting. mainly it was thefathers, it was the male. but then there were some of the moms too. and so it was reallythis focus of trying to get that experience of that person that manages the finances athome, and then just to capture, when possible,

this conversation between the mother and thefather, and this idea of cost, what that word meant to them. so that was the first thing that i reallywanted to make sure about that. and then something else particular to congenital heart diseasethat i think is very important to our story is the time of diagnosis. and because of ouradvances in technology, we most often, or almost 50% of time are able to tell a familyin utero-- so a prenatal diagnosis, versus at the time of the birth. and that actually became a very importantpart of the story, and i would think implications, for what we learned. again, that socioeconomicstatus. what did that look like? and we had

probably about a small percent fell into thathigher socioeconomic status, and it was almost an even split between the middle and lowersocioeconomic status. so that's how we kind of divided them up.it was a low, a middle, and a high. and then i think as far as the complexity of the congenitalheart disease, i told you that i wanted to try to capture that whole story. typical isthat kind of intermediate, kind of complex disease. that was mainly what was in the group. but we did have families that had a very kindof simple, and we had families that also had a very complex, where staged, kind of multipleinterventions were required. so you had a good representative sample ofwhat you were trying to get.

yeah. and i felt that. that even though wewent past what would you consider six to eight families, i think doing the 20 actually allowedto tell that whole story. oh, good. so that was something that was important whenwe interpreted what they were saying to us. something that for me was really importantto learn is that when you interview families, you get a whole story. and the way that storyis handled is that we taped the interviews, so that i could just focus on them, not haveto write everything down, and that your data comes in the form of a story that you haveto then take that story, and try to make some kind of sense of it across all the families.and what you're doing is you're trying to

look for similarities. and so in that similarity, one way to helpmanage all of that information that you're receiving is to actually draw a figure. ok. and so what we did was that we drew afigure that allowed us to really think of this as by domains of cost burden. as we wereunderstanding what the families were saying, two major themes or domains jumped out tous. and the first theme was this overall lifestyle change. and it happened in a way that wasboth financial, was what i was interested in, right? but then there was this emotional component,and then there was this family component.

and then the second overall domain was thistheme of uncertainty. and again, it was financial uncertainty, uncertainty around the emotion,and then uncertainty around the family. what was that going to be like? and so that was the way that once we readall of our interviews, all of our 20 interviews, we thought, let's organize the informationusing these kind of domains, and then really try to tell the story within each of the twomain domains, and potentially examples of these three kind of subdomains, or subcategories.and so that's how we treated the information, to really start to tell the story of whatfamilies experience. how interesting that you found cost, whichis typically financial, was actually so tied

to emotions. well, you know, again, when i interviewedthe first family, they gave me this whole story. then i said, well, ok. maybe that'sjust one family's experience. what was remarkable is that it did not matter, these things arounddisease complexity, or their socioeconomic they all told this story very similarly aboutthe multiple meanings of cost, and thought of it in a way that was clearly beyond financial.and that is really what led me to say there's something very strong among this population,among this experience, that's very similar. and so it just allowed to then start makingsome very important statements about the timing of disease. and i think one thing that struckme early, and it was also very interesting,

that during the interviews, the families,especially when i had the paired, there was a real difference in what the fathers weresaying and the mothers. but all agreed with this multiple meeting. isn't that interesting? but where the examples came out were differentbetween the father and mother as far as financial lifestyle change. and one of the things thatreally struck me was a family that we had taken care from the south. because our centeris a major referral center, we have families from all over the world that come and seektreatment here. so this was one particular family that was from the south of the unitedstates.

and he said to me that we were going for ournormal ultrasound check up. later that day, we were supposed to go, and we were goingshopping for a large screen tv. our family was very excited about this. but we neededto do the appointment first. at the time of the appointment, there wasa diagnosis made that the baby had heart disease. and it was a complex heart disease. and hesaid, we left. and he says, the first thing i thought is that i'm not buying that largescreen tv. instead, i'm going to go get another job. and it was that kind of statement that, itwas at the time of diagnosis-- and families told me this time and time again. it was atthe time of diagnosis that all of that started

to shift for them. and example after exampleof that immediate, well, what are we doing with the finances? how are we going to dothis? how are we going to do our current work life? that kind of thing happened right at the timeof diagnosis. and so for the families with the prenatal, it actually gave them a littlebit of time to plan. for the families that had a diagnosis at birth, it was often thatthe baby was born, immediate need for some kind of intervention requiring hospitalization. and so they're going through this celebrationof the baby's born, and now we're thinking, oh, my goodness. how am i going to do my work?for the father's, i only planned on being

out of work for three days. now my baby needssurgery. what does this mean? and potentially out-of-state? and their home town? and that was true that for many families thathad a very complex type of treatment required, there wasn't a hospital close by. so thatcost started right away, when they had to get the car, or get in the ambulance, or gettingin the helicopter, or however it was that they got here, started to occur for them. and so that was another, i think, importantthing for me to understand, that it starts right away, right at that time of diagnosis,or type of treatment. and then, it's a daily,

it's a daily kind of experience. one mothershared with me that she said, well, you know when you go on vacation? she says, you knowhow many days you're going to be on vacation. and she says, and so you could plan for eachday. this is how much money i have. and i'm going to spend this amount every day. andshe said, you know, you think about the food, or the parking, or all these other things--you're lodging, right? she says you have the baby with congenitalheart disease. and she says, and you can't plan. you don't know how long you're goingto be at the hospital. you don't know how long you're going to need money for a hotel,or for the food. she said, you know, we're eating like, potato chips, some days, becausewe don't know based on how much money, and

how long we're going to be here, what do weeat? what do we do? where do we sleep? and so, it was all of these things that ithink for me, that uncertainty, and at the time of diagnosis, that spoke so clearly,this kind of how there were connections between that. did you find-- were there any results youfound surprising? that you weren't expecting? i think the biggest thing for me was to understandit from all the different ways they think about it. i think that, again, for me, i wasvery interested in, well, how much money did you spend per day? can you tell me that amount? how much moneydid you spend with your prescriptions, the

co-pays? and what i found is that it's veryhard to figure out that number. i think that the costs for them start right away. and then they continue. one of the importantthings that you do in qualitative study is something to help validate the way that youinterpreted. so this diagram, this figure, that i came up with. one of the most importantthings i did was something called member checking. and it helps to validate how you interpretedtheir story. and so, i had as part of the study that iwould randomly choose from the 20 families to go back and contact them about six to sevenmonths after they participated in that first interview. and in that instance, that gaveme further information that, yeah, we had

the story right. but what was also interestingis that phenomenon continued for families they didn't have any kind of real vacation,or sick time, or time away from the office that was paid. many of those families lost their jobs. youknow? it was something that families said when the employee would find out there wasthis diagnosis, everybody rallied to the cause. people try to cover. but after a period oftime, they're like, this is a chronic thing. this is not just three days or a week. and so, families often lost jobs, lost businesses.one family lost a house. families that had actually started out at a very high socioeconomicstatus-- she had a little boy born with hypoplastic

left heart, a very complex disease requiringmultiple surgeries. at the first surgery, she said she was living--she says, "i would call it mansion." she says, "and now i'm admitted here for the third surgery."she says, "not only did i lose the mansion." she says, "i've gone through a divorce." andshe says, i'm worried about the heat, paying the heat bill, because-- and i know i needto take him home after the surgery. you know, but it's winter, and i have no money to payfor the heat. she was on welfare. so it was striking to me how the impact ofthis that nobody plans for with congenital heart disease-- you know, there's no trueunderstanding of the etiology. so nobody plans to have this kind of experience. but the impacton how it took-- for many moms, who had full-time

work, or even part-time work, it was strikingto me how they had difficulty in getting their child in a daycare kind of system. that the day cares often felt very nervousabout having a child with a heart. so they couldn't return to work. or they had to dependon the extended family, something they hadn't done before. can grandma watch, you know,johnny? that kind of thing. and the impact on that, that that never happened. so it really was something that i felt affectedall kinds of pieces of this overall life that the family had before, and how they were living.when i spoke to families at this six to seven months after, they said things really haven'tsettled down. we're still very much feeling

it. this is at a point also that they're startingto get bills from their hospital staff. so this whole question of, well, how muchis my insurance going to cover? how much am i going to be responsible for? in the moment,you're like, let's just take care of my baby. right? and we'll figure this out after. thatsix to seven month period is the after. that's the after. and so, it was really important to hear fromthem this, the bills keep coming. like, there's another bill from this person. there's anotherbill from this person. and then, looking at it, and often being struck with-- it was howwhat was going to be paid for, and what they were going to be responsible. very difficultfor them to understand.

it was almost like it there was no rhyme orreason to that. but yet, you know, this was something that now was their responsibility.so it was important to me to understand that it not only started right at the time, it'ssomething that continues, even when they're out of the hospital. we as health care workersthink, oh, things will settle down once they get home. well, maybe the child's condition stabilizes,that medical condition. hopefully. things are better. but this whole other story, itcontinues. yeah, it goes on. we would like to ask our audience anotherquestion. please remember to first state your

city and country. currently in your institution,are there policies in place for health care staff to talk to families about potentialstressors due to a continuation of medical costs following the hospitalization period? what did you see as the most meaningful finding? for us in the health care field, how we supportthese families, how we prepare these families. we are in a time of information, communication.we're stressing all these things. and i think that trying to prepare families as best possiblefor this whole economic burden or cost burden is important. and it's not just about themedical information. it's, how are you going to do your life? andhow are you going to do your life on multiple

fronts? and i think that conversation hasto start pretty early. because honestly, families are thinking of it. when you have fatherstelling you right as soon as they said, my child has a heart defect, i wasn't worriedso much whether he was going to live or die. i was worried how i was going to pay for it. so they're thinking it, and they're stressingit. so it's almost, i think, better for us to help start to talk about that stress, andhow are they going to manage that stress? and come up with a plan that's just not whileyou're in the hospital. it's how are you going to do this across your child's-- you know,their continuity of their care? how are you going to do that?

such an important message, because i think,like you said, as health care professionals, we're used to preparing the families for discharge.it's one of the things we teach all the new nurses, and the new fellows and physiciansthat come in, to prepare the families on admission for when they go home. but then they go home. and i think we often--or for me, this is so enlightening, because you forget that they may still have follow-upappointments, or they're still managing-- they transition to home, but they're stillmanaging the care at home, and that certainly impacts daycares and work. and taking timeoff is something you don't think about. they never really return to their previouslife. i guess that was one of the things that

you need to communicate, that although therestill is an opportunity for an excellent quality of life, i think one of the success storiesis that we have a story now for this particular disease that babies are living. and they'rehaving a really important quality of life, and they're going on, and growing up and contributingto society. but all of this that happens alongside ofit, i think, is important for families to be able to cope with that. absolutely. it's an important piece. so more and more,the burdens of the economy play into this too. so for me, i think the most importantthing was prepare families as best possible

as early as possible. because it's somethingthat they're thinking about. just because they don't verbalize it, i think sometimesfamilies, they felt shy, or nervous, or that the health care team is going to judge them,that i'm not asking about my specific child's disease. i'm asking about how many days ineed to be out of work. you know. and i think us addressing that proactivelywould probably be of some comfort. and would you consider that your next step,or how you would move forward with this particular research? right. right. so as a clinician-- so oncei finished this study, i was still practicing clinically, and thought about that every timei spoke to a family, whether they were at

the point of getting ready for the surgery,or getting ready to be discharged. i thought that going back to that was somethingimportant for them to realize. because when they are having the experience, what are theresources available to you to help get through that? to help cope with that? because it'snot going to go away. it's now part of your life. but how are you going to do that while takingcare of your child? and i think as far as next steps, this whole idea of cost is stillimportant to me from many different perspectives. and so, looking at the role of cost aroundjust the surgery itself, and the health care team, and how they contribute to cost, andhow we might be more efficient in the way

we use our resources, is part of this wholestory for me, and part of my research now. i think that one of the things that was strikingto me when i presented this in national meetings, this work, is people asking, well, is thissimilar to the other kinds of chronic illnesses that children now have today? and i didn'thave an answer for that, because i haven't studied that either. and so there are a groupof collaborators that have patient populations of different kinds of chronic illnesses, andseeing if we could answer that question. so that's something else that is kind of movingforward. and hopefully, we'll be, able to fill in that gap too about what we know aboutthis. we would now like to ask our audience a finalquestion based on what you heard today about

medical costs and the burden on families.please remember to first state your city and country when you respond. if you do not havesuch policies currently in place in your institution, would you consider implementing policies toscreen families for social economic stressors? alternatively, if you do have such policies,were there any components that were discussed today that are not included in your institution'spolicies that you find particularly important? wonderful. well, thank you so much for beinghere today. you're welcome. it was a pleasure. thank you.