Waiting for Lung Transplantation: Family Experiences of Relocation

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Waiting for Lung Transplantation: Family Experiences of Relocation

Carol Stubblefield, Ruth L. Murray

Pediatr Nurs 28(5):501-504, 2002. © 2002 Jannetti Publications, Inc.

Posted 12/10/2002

Abstract and Introduction

Abstract

The waiting period for pediatric lung transplantation begins when it is

determined that a child's only choice, other than transplantation, is

death within 1 year. Children who are on the waiting list must always be

within beeper range of the transplant center. Six parents who

temporarily relocated with their children to be closer to the transplant

center shared their perceptions of the experience. Data analysis led to

the formulation of a descriptive category, experiencing relocation, and

six related themes - putting life on hold, experiencing diminished

emotional support, establishing new sources of support, udergoing role

change, worrying about money, and making the best of the situation.

Recognizing the unique needs of parents who must relocate for a child's

transplant supports the delivery of individualized nursing care and the

effective allocation of program resources.

Introduction

Lung transplantation received approval as a treatment modality for

children with end stage lung or pulmonary vascular disease in 1991 (Pohl

& , 1995; Spray & Huddleston, 1995). In pediatric lung

transplantation, as in other types of organ transplantation, the family

moves through stages: learning of the need for transplantation, waiting

for a transplantation, receiving the transplantation, and living with

the transplantation (Stubblefield & Murray, 1998). Stage-specific

factors affect parents' perceptions of the stages of transplantation.

The waiting period begins when it is determined that a child's only

choice, other than transplantation, is death within 1 year. At this

time, the child is listed at a transplant center to await the

availability of donor lungs. One stressor specific to the waiting period

is the need to insure viability of the donor lungs. Children who are on

the waiting list must always be within beeper range of the transplant

center. Often, this requires that the child and one or both of the

parents temporarily relocate to be closer to the center.

Methodology

The data reported here reflect descriptions of the waiting period from

the perspectives of the parents who temporarily relocated closer to the

transplant center. The data were collected and analyzed within the

context of a phenomenological study of parents' perspectives of the

pediatric lung transplant experience (Stubblefield & Murray, 1998).

Detailed descriptions of the study methodology and the sample are

included in a published report (Stubblefield & Murray, 1998). Six study

children and their parents relocated closer to the transplant center for

an extended period of time. The length of the waiting period for these

individuals ranged from 2-9 months. In four of the six families, the

mother and the child in need of the transplantation relocated alone or,

in one case, along with an older sibling. The fathers of these children

remained at home to work and to care for other children in the families,

visiting as frequently as possible. One mother who relocated was a

single parent. In one family, due to the nature of the father's

employment, both of the parents and their children relocated.

Results

Analysis of the interview data resulted in the formulation of several

descriptive categories. The descriptive category experiencing relocation

and related themes have not been addressed previously in the literature

and will be addressed here.

Experiencing Relocation

From the perspectives of the parents who relocated to await the call

that donor lungs were available, the perceptions of the waiting period

were characterized by a descriptive category titled experiencing

relocation. The category experiencing relocation included six themes:

(a) putting life on hold, ( experiencing diminished emotional support,

© establishing a new support network, (d) undergoing role change, (e)

worrying about money, and (f) making the best of the situation.

Putting Life on Hold

The theme of putting life on hold appeared to capture the sense of

" treading or keeping one's head above water " or of " being on a

treadmill " that was apparent in the parents' descriptions of the waiting

period. One mother described the waiting period as " putting life on

hold. " Another mother said:

Your whole life revolves around the hospital and your child's health.

One father described the sense of marking time during the 9-month

waiting period that his wife and child lived near the transplant unit,

while he and an older son remained at home, in the following words:

On the weekends we'd leave here on Friday and go up there and spend the

weekend, and we would come back Sunday night and start over for the next

week. We had all that to worry with plus the normal things or the

everyday things that normal families go through, but still in the

fore-front was [their son] and what he needed.

A mother described the 2-month waiting period during which time she, the

child awaiting transplantation, and an older sibling were separated from

the remainder of the family:

Most of the families here, they go out there with one parent, they get

split up, they have no support. They're there with a sick kid on

dwindling resources, and the kid's not getting any better. I mean all

those kids have a degenerative lung disease. That's why they're on the

list. They're just hanging out in a big city. I mean it's just horrible

and that was really, really hard. The parents weren't working. They

didn't have a life.

The mother of one child described the 4-month waiting period during

which she and her daughter were separated from the rest of the family as

a time when " everything was on hold. " She said:

The time really did go quickly because we did have a lot of company, but

it is stressful. It's really difficult to wait. You're constantly

thinking about that and wondering what's going to happen with the

surgery. Meanwhile [you want to] get back home and get back to a normal

life because everything's been put on hold for that period of time. Had

a nice break from work, but after that you get anxious to get back to

work.

One mother whose husband and children relocated with her described her

situation in the following way:

We took the children out of school, and we decided to home school them

and correspond with their teachers. We got their books and everything

they would need, and brought as much as we could with us. My husband

pretty much got out of business. He sold everything. And that's pretty

much what happened so we had the winter to just say, 'Okay, let's focus

on [their daughter]. Let's get this done. Let's get her as healthy as we

can.' She was transplanted in the fall, so we knew that by spring,

barring any unforeseen problems, we should be home and ready to work

again.

Experiencing Diminished Emotional Support

To some parents, the stress of separation overwhelmed any positive

aspect of relocation. One mother said:

It was kind of shocking to think that I would have to do it. I knew I

would have to do it on my own because somebody would have to work.

Another mother said:

Our family was split up. We've been split up [on and off] for about 3

years now, so it's been tough.

The emotional wrench of separation during the waiting period was also

expressed by a mother who described her husband's weekend visits to see

her and their son accompanied by their other younger children. She said:

I did get to see them a lot, but I remember it was real traumatic when

they had to leave. The baby...she'd be so happy when she got to come and

then when she'd leave she'd just cry and say, 'I don't want to leave

Mommy, I don't want to leave.' And her arms would be out. My son and I

would cry.

One mother whose entire family relocated with her recognized the stress

of separation on others when she said:

Having him (her husband) with me was just ... I can't imagine doing it

alone. I suppose if you had to do it you'd just do it. But yet the

stress level would be unbelievable. Everything would be on your

shoulders, even though I know a lot of the fathers would fly in maybe on

weekends or whenever they could, but yet if you're not there everyday

seeing what's going on I don't think you would have the same perspective

as if you were there all the time.

Establishing a New Support Network

While parents who relocated received diminished emotional support from

their usual sources of support, they gained the support of other

families awaiting transplant. One mother said:

We just mixed and mingled with the other families, and we saw St. Louis.

Another mother also emphasized the social support that was available

when she said:

We met a lot of wonderful people. We had parties over at the townhouse,

transplant parties. We had a lot of free tickets to Six Flags and

baseball games , you name it. People were just wonderful to us, and we

felt so at ease.

In contrast, the instability of this source of support was evident in

the remarks of one mother who said:

The seven of us transplanted in one little group within a couple weeks

of each other, so we got to be really close. They all left me, and I was

just here with all these new families. It was like we'd call and talk to

each other and stuff. I just felt like I'd moved away from my family

because they were really my new family. It was tough because they all

went home to Michigan and Ohio and Texas and Florida. And so it wasn't

even where we could even really be close enough to visit or anything.

There were some negative consequences associated with developing a

support network composed of other parents whose children were also

undergoing transplantation. One mother said:

In some ways (talking with other parents) is supportive, in other ways

it's a nightmare.

She described parents that " had been through so much, and things weren't

going very well and they had a negative outlook. " Another mother said

that her husband likened negative attitudes to poison and told her,

" What do you do with poison? You avoid it. " She said that she tried to

heed his advice and seek out parents who helped her remain positive.

Undergoing Role Change

Several parents offered poignant examples of the impact of role change

as one parent tried to fill the roles of both parents. A father who

remained at home to work and care for an older son said:

I guess me and [older son] turned into a Mr. Mom - little bachelor kid

type thing. He went to school everyday, and I went to work and made sure

that he was hopefully getting what he needed.

A mother said: I felt like I was trying to direct everything and my

husband was trying...he was doing as best he could with the girls, and

he'd be crying about [child that needed transplant], and he felt so bad

that he couldn't do enough and he wasn't really good at doing girl

things, you know? He didn't understand about doing their hair or

matching their outfits or things like that.

Worrying About Money. Five of the six parents who relocated mentioned

the associated financial challenges. One father described the situation

as follows:

It mounted up to a financial nightmare on top of everything else. We had

to figure out how we were going to get this bill paid, but at the same

time we still had all the stresses of her being up there with [child

needing transplant] and me being down here with [their other child].

A mother said: We didn't even know how we would do it on one income

because I brought in half the money.

Making the Best of the Situation. Despite the stress associated with

relocation, parents described how they minimized its negative effects by

focusing on its positive aspects. One mother described her intention of

making the best of a bad situation when she said:

We got to talking about it and we thought, 'Boy, this is an adventure.'

We just decided we were going to make this an adventure, and we rented

an apartment and bought a little car. We had a van, but we bought a

small car so we could get around town and save on gas. Got ourselves all

packed up and we were really excited about it. We kept thinking

'Something's gotta happen, something's gotta happen,' and so we were

here 10 months before her transplant.

Another mother described her initial apprehension about relocating and

her eventual reassessment of it as not unpleasant and as a relatively

uncomplicated period of time when she said:

Out of everything that I was afraid of, [her daughter's] health, whether

she'd pull through, a big city, leaving my job, leaving my family, not

one of them came true. There wasn't a single thing...St. Louis was such

a high, it was unbelievable. We were as happy in St. Louis as we've been

in 4 years. I had a hard time finding an apartment. Once I found an

apartment, we had so much fun. Another thing I loved about moving here

was that I had basically a couple of things I had to do in terms of how

fragmented my life was. Like my pie was only broken up in two or three

slices. But when you go back to your real life it's not that way. You're

torn apart in a thousand different directions. I liked that simplicity.

Another mother, whose immediate family relocated with her, echoed this

sentiment when she said, " It sounds hard to believe, but it was kind of

enjoyable. " She said that her daughter was not oxygen dependent, and she

and her husband tried to plan an enjoyable and educational activity

everyday.

Discussion

During the waiting period, most of the parents who relocated appeared to

put their lives on hold. This was a theme that has been identified in

other studies of organ transplantation (Benning & , 1994; Squadron,

1988). Mishel and Murdaugh (1987) also used the phrase " life on hold " in

describing the waiting period from the perspectives of adult family

members of heart transplant recipients. They identified the period as

one of immersion in which family members set aside other

responsibilities to support their adult relatives awaiting transplant.

In the present study, parents' descriptions of putting life on hold

during their relocation was congruent with the concept of immersion.

In the current study, the families who relocated described the emotional

wrench of separation from family members who remained at home and the

need to develop additional sources of social support. The parents of

children awaiting transplantation served as sources of support for each

other. This finding is congruent with that of Nolan and colleagues

(1992) who found that adult family members of heart transplant

recipients scored higher than normative subjects on the subscale of

acquiring social support. However, there is a downside to this source of

support. Parents described a sense of abandonment or loss as other

children underwent lung transplantation and returned home with their

parents. The decrease in the density or extent to which members of a

parent's social network interact with each other may influence the

quantity and quality of social support (Heaney & Israel, 1997).

The parents in the current study described the unsettling impact of

negative information that was shared with them during the waiting period

by parents of other children. This information focused primarily on

pretransplant mortality and posttransplant complications and mortality.

They described their efforts to minimize the impact of negative

information by focusing on the positive. Nolan and colleagues (1992)

reported that their subjects expressed optimism that their relatives

would survive heart transplantation. In a study of parents of children

undergoing bone marrow transplantation, Zabora and colleagues (1992)

also described a sense of heightened optimism during the waiting period.

Mishel and Murdaugh (1987) described a tendency for family members to be

disinterested in posttrans-plant information during the waiting period.

Conversely, Bright and colleagues (1990) stated that adult relatives of

lung transplant recipients reported receiving and being unable to ignore

negative information. The ability of some individuals to ignore negative

information may reflect avoidance or second level denial as described by

Lazarus (1983). In avoidance, an individual opts not to think about a

threatening situation. In anticipatory stress situations, individuals

who avoid or tend to blunt or minimize negative information do best when

left alone (Lazarus, 1983). In second level denial, the major facts

concerning the situation are accepted, but the worst implications are

denied (Lazarus, 1983).

Role change was evident in the families in this study who relocated

closer to the transplant center. The family members that remained at

home assumed some of the roles of the family members who relocated; the

family members that relocated provided much of the emotional support for

the organ recipient. Mishel and Murdaugh (1987) described trading places

as family members assumed the role responsibilities of the organ

recipients. In this study, the concept of trading places reflects

parents' role changes related to relocation. This finding was consistent

with those of Patenaude, Levinger, and Baker (1986) in their study of

parents of children who underwent bone marrow transplantation.

The majority of the parents who had to relocate stressed the heightened

financial demands during the waiting period. A similar concern has been

evidenced in other studies: 29% of the subjects in the study by Nolan

and colleagues (1992) described increased financial strain, as did the

subjects in the studies conducted by Patenaude and colleagues (1986) and

Zabora and colleagues (1992).

Despite the stressors associated with relocation, parents described

their efforts to make the best of the relocation experience. This

finding is congruent with parents' reports of trying to focus on the

positive aspects of family life during the stage of living with the

transplantation (Stubblefield & Murray, 1998).

Clinical Implications

The stress associated with waiting for a child's lung transplantation is

compounded for some parents by the need to relocate to be within beeper

range of the transplant center. Gaining an awareness of how parents who

must relocate perceive the waiting period provides a framework for the

accurate assessment of specific family needs. Assessment data can guide

the implementation of nursing interventions specific to each family

situation. Some families may be better able than others at adapting to

the need to put their lives on hold. Nurses can help parents develop a

life away from home by providing information on local resources and

activities. Parents may need nurses' support in coping with the stress

associated with the role change involved in relocation and with the

diminished contact with their usual sources of social support. Nurses

can introduce relocated families to local families, provide information

on support groups, and serve as a source of support. Parents can be made

aware of any resources available to ease the financial strain of

relocation. In addition, nurses can support parents' efforts to focus on

the positive as they strive to make the best of their new situation.

Understanding the waiting period from the perspectives of parents who

must relocate facilitates the delivery of comprehensive and holistic

nursing care and the allocation of lung transplant program resources to

meet family needs.

Becki

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