Journal of Pediatric Nursing 61 (2021) 67–74

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Journal of Pediatric Nursing

journal homepage: www.pediatricnursing.org

Multiple roles of parental caregivers of children with complex

life-threatening conditions: A qualitative descriptive analysis
Amie Koch, DNP, FNP-C, RN, ACHPN a,⁎, Arthi S. Kozhumam b, Erika Seeler, MA, BSN c,
Sharron L. Docherty, PhD, PNP, RN, FAAN c, Debra Brandon, PhD, RN, CNS, FAAN c
a
Duke University School of Nursing, Family Nurse Practitioner Transitions Lifecare, Nurse Practitioner Lincoln Community Health Clinic, Durham, NC, United States of America
b
Duke University, Global Health Institute, Durham, NC, United States of America
c
Duke University, School of Nursing, Durham, NC, United States of America

a r t i c l e i n f o a b s t r a c t

Article history: Purpose: Children born with Complex Life-Threatening Conditions (CLTCs) often require complex and specialized
Received 7 February 2021 services. Parents of children with CLTCs balance the role of caregiver with other responsibilities of employment,
Revised 16 March 2021 education, relationships, and self-care. The purpose of this paper is to describe the challenges for parents serving
Accepted 18 March 2021 as caregivers of children with CLTCs and their intersection with health care provider expectations through utili-
Available online xxxx
zation and adaptation of the role theory framework.
Design/methods: We employed a qualitative descriptive design, secondary analysis of a longitudinal study on par-
Keywords:
Caregiving
ent and provider decision making for children with CLTC. There were 218 interviews from sixty-one parents of 35
Pediatric infants with prematurity, bone marrow transplant, and/or complex cardiac disease, followed for one year unless
Role strain death occurred. Content analysis and thematic generation were performed capturing the various parental roles
Burden embedded within provider expectations of informal parental caregiving.
Results: Results showed that parents of children with CLTCs serve multidimensional roles, including that of infor-
mal nurse and care coordinator, while maintaining additional personal roles as parent and family provider. Par-
ents experienced challenges as caregivers that were shaped by perceived expectations of health care providers as
well as lack of support, often leading to role strain, conflict, overload, and sometimes exit.
Conclusions: Parents of children with CLTCs experience both common and unique challenges inn balancing mul-
tiple roles as an informal caregiver. Despite utilizing positive coping mechanisms, their status as parent caregiver
carries significant risk for role strain and overload. We recommend the implementation of strategies for increas-
ing parental support and family-centered care.
© 2021 Elsevier Inc. All rights reserved.

Introduction
Children with complex life-threatening conditions (CLTCs) are living
longer due to multiple medical and surgical advances, and after dis-
charge home they have significant caregiving needs (Edelstein et al.,
2017; Foster et al., 2019; Koch & Jones, 2018). As a result, parents of
these children must provide home-based health care, which includes
daily monitoring and life-sustaining medical and nursing tasks. Diverse
factors including high hospital costs, reduced payer reimbursement, and
preference for the home as the most nurturing environment for child
development have all contributed to this rise in high acuity in-home
care (Caicedo, 2014).
Parents' provision of complex care for their child occurs daily in con-
junction with other parental role tasks including making phone calls to
⁎ Corresponding author at: Duke University School of Nursing, DUMC, Box 3322,
Durham, NC 27710, United States of America.
E-mail address: amie.koch@duke.edu (A. Koch).
set up health care appointments, taking the child to appointments, car-
ing for other children in the home, sustaining employment, attempting
education, and trying to maintain relationships with family and friends
(Hatzmann et al., 2009; Kuo et al., 2011). The pressure to incorporate
complex caregiving of a child with CLTC into the daily demands of life
puts parents at risk for negative health outcomes (Peckham et al.,
2014). Parents of children with CLTCs are more likely than the general
population to report back problems, migraine headaches, stomach/in-
testinal ulcers, asthma, arthritis/rheumatic disorders, recent experience
of pain, lower antibody response to the pneumococcal vaccine, and sig-
nificantly elevated systemic concentrations of the C-reactive protein
(CRP) inflammatory biomarker (Pilapil et al., 2017). Challenges for par-
ents with children with CLTC are physical and emotional, and also often
include exorbitant medical costs that put financial strain on the family.
Parent caregivers' stressors include financial constraints and deficits
in knowledge, ability, and experience in complex care delivery. The
complexity of care needs for children with CLTCs necessitate well-
organized and family-centered delivery of care. Yet, when compared

https://doi.org/10.1016/j.pedn.2021.03.017
0882-5963/© 2021 Elsevier Inc. All rights reserved.

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A. Koch, A.S. Kozhumam, E. Seeler et al.
to children without CLTCs, parents of children with CLTCs report a lack
of effective care coordination for their children, despite higher need,
and do not receive needed care, and parents have greater frustration
with accessing services (Archived Data Query - NSCH and NS-CSHCN
Prior to 2016 - Data Resource Center for Child and Adolescent Health,
2020). Parents report higher levels of inadequate health insurance cov-
erage for their child, higher out-of-pocket costs for health care, and
greater difficulty paying medical bills than parents of children without
CLTCs (Archived Data Query - NSCH and NS-CSHCN Prior to 2016 -
Data Resource Center for Child and Adolescent Health, 2020).
Parents of children with CLTCs have multiple competing caregiving
demands, often with limited resources and support. This situation has
been conceptualized as caregiving burden (Adelman et al., 2014;
Carretero et al., 2009; Raina et al., 2004) and has been investigated
among diverse caregivers groups (e.g. parent, spouse) and adult and pe-
diatric populations (Applebaum & Breitbart, 2013; Bozkurt et al., 2019;
Boztepe et al., 2019; Etters et al., 2008; Fitzgerald et al., 2018; Kim et al.,
2012; Landfeldt et al., 2018). While the term “caregiver burden” seems
ubiquitous, there is no single accepted definition or quantifiable mea-
sure (Bastawrous, 2013). In addition, no codes of the International Clas-
sification of Diseases, 11th Revision (ICD-11) or the Diagnostic and
Statistical Manual of Mental Disorders (DSM-5) (Barnhill & American
Psychiatric Association, 2014) reference or describe the concept of care-
giving burden.
Challenges associated with defining burden include its multidimen-
sional nature (encompassing physical, psychological, social, emotional,
environmental, occupational, financial, and other aspects), subjective
and objective characteristics (perceived psychological toll versus the
number of caregiving hours or tasks performed), and conflation with
similar terms like strain, stress, or burnout (Bastawrous, 2013; Chou,
2000; Jadalla et al., 2020; Kunkle et al., 2020; Llanque et al., 2016;
Savundranayagam et al., 2011; van der Lee et al., 2014). The concept
of burden has been criticized for neglecting cultural, ethnic, and gen-
dered contexts of care which inform expectations, perceptions, and re-
sources placed on or held by parents serving in the caregiving role
(Friedemann & Buckwalter, 2014; Torti et al., 2004). Role strain and
role conflict are dimensions of caregiver burden, related to required ad-
justments in living, work schedule, and caregiver resources (Cafferata &
Stone, 1989). For some parents, although the daily care that they are re-
quired to provide to their child is laborious and time consuming,
the label of burden may carry a negative connotation by implying that
the parent caregiver finds their position inconvenient or undesirable.
The term burden may also stigmatize care recipients, making them
feel like an encumbrance or liability. Parents rarely use the term “bur-
den” to describe their experience, with many caregivers offering more
nuanced narratives of both positive and negative subjective evaluations
tied to perceptions of strain and conflict within and across the multiple
roles and responsibilities they have or are expected to hold
(Abdollahpour et al., 2018; Kang et al., 2013; Kinney & Stephens,
1989; Lynch et al., 2018).
Prior research has used sociological theories such as role theory to
better elucidate the concept of caregiving burden (Bastawrous, 2013;
Choi et al., 2016; de Mello et al., 2017; Gérain & Zech, 2019; Halinski
et al., 2020; Quah, 2014). In this paper we used role theory as a frame-
work for parents of children with CLTCs so providers can better
Role Role Exit
Role Strain Role Conflict Overload
Fig. 1. Role theory as a framework for understanding the role complexity parents of
children with CLTCs experience.
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Journal of Pediatric Nursing 61 (2021) 67–74
understand the multifactorial roles the patents experience (Fig. 1).
The term role refers to expected behaviors or characteristic behavioral
patterns (Hardy & Conway, 1978), associated with various types of sta-
tus (social positions) based on culturally-defined rights and obligations.
Individuals may occupy multiple statuses simultaneously (Diekman &
Hirnisey, 2007; Goffman, 1959). When a subjective experience is nega-
tive (e.g., perceived excessive demands on strength, resources, or abili-
ties), several situations may result including role strain, role conflict,
role overload, and role exit. Role strain is the difficulty in meeting de-
mands associated with a situation placed on an individual who is
performing a specific role, which leads to stress (Goode, 1960). Strain
may occur due to unique challenges arising from demands within that
particular role, or due to role conflict or role overload (Creary &
Gordon, 2016). Role conflict is the tension in meeting the competing de-
mands of two or more roles or statuses (Halinski et al., 2020; Hardy &
Conway, 1978). Role overload is when a role exceeds resources available
to fulfill demands (Halinski et al., 2020). Role exit is disengaging or leav-
ing a previously occupied role, potentially due to strain, conflict, or over-
load (Ebaugh, 1988).
Informal caregiving can have impacts on several arenas of a parent
caregiver's life including relationships, employment, education, fi-
nances, and self-care. The purpose of this paper is to use role theory as
a framework for exploring parent experiences as caregivers of children
with CLTCs. We adopt constructs from role theory to describe the vari-
ous challenges and expectations of caregiving to explore the diverse ex-
periences of parenting a child with CLTCs, and how that may intersect
with the health care provider team's expectations of informal parent
caregivers. We note suggestions for how care systems and providers
can increase parental support and family-centered care in the future
to lessen parent role strain.
Methods
A qualitative descriptive design was used to explore parents' experi-
ences caring for children with CLTCs. We sought to identify caregivers'
perceptions of their various roles including parent and informal home
health caregiver. This study was part of an IRB approved larger, prospec-
tive, longitudinal study of parent and provider decision making for in-
fants with complex life threatening conditions (Hill et al., 2019;
Lemmon et al., 2019; Superdock et al., 2018). Data for this secondary
analysis was initially collected between 2008 and 2011 (1R01-
NR010548) (Tan et al., 2012). The principal research used a multiple
case study approach to explore decision making for infants ≤ 24 months
of age at enrollment receiving care at a southeastern U.S. academic med-
ical center for one of three kinds of CLTCs: extreme prematurity (<26
weeks-gestation), complex congenital heart diseases, or genetic disor-
ders requiring hematopoietic stem cell transplant. Each case included
an infant, at least one parent, and at least three health care providers
(physicians, nurses, nurse practitioners [NP], and social workers).
Thirty-three cases, including 33 infants, 56 parents, and 190 health
care providers (n = 298) were followed for one year, unless death oc-
curred prior to one year. Data for this analysis included a series of
one-on-one semi-structured interviews with mothers and fathers.
Participants
A purposive sampling technique was used in the principal study to
select infants with three kinds of complex life-threatening conditions
(CLTCs): extreme prematurity (<26 weeks gestation), complex congen-
ital heart diseases, or genetic disorders requiring a hematopoietic stem
cell transplant (BMT), receiving care at a southeastern U.S. academic
medical center. The conditions were identified for the parent study be-
cause of their complex clinical course and high mortality rates. Sampling
continued within each of these diagnostic categories to include infants
of various races and socioeconomic status to ensure a population repre-
sentative of those encountered in this clinical setting. Parents were
A. Koch, A.S. Kozhumam, E. Seeler et al. Journal of Pediatric Nursing 61 (2021) 67–74

consented for the research study and they were at least 18 years old, En- Table 1
glish speaking, and biological parents of the infants. All parents were in- Table of major themes.

formed that the information shared would not be disclosed to the other Role Definition Examples
parent or any health care providers involved in their case (Tan et al., theory
2012). theme

For our study we used a purposive sampling design (Palinkas et al., Role strain Difficulty in meeting demands Medical decisions, coordinating care,
2015) to select cases of infants with complex chronic conditions in- of single role learning curve, guiding providers
(e.g., having multiple appointments
cluded in the larger parent study who were discharged from the hospi-
each week, having many health care
tal to their home at least once following study enrollment. Cases were teams to meet with.)
excluded that were not discharged from the hospital. The final sample Role Tension in meeting demands Demands of employment, education,
for this analysis included 15 infant cases comprising a total of 263 inter- conflict of two or more roles or relationship strain (e.g., parent
views (mothers and fathers). not able to take job promotion
because they will have to travel,
which causes conflict in their ability
Data collection to provide care to their child.)
Role Role demands or exceeds Emotional overload, insufficient
overload resources available to fulfill time, desire for social support
In the principal study infants with CLTCs (P = prematurity; B = role without strain (e.g., parents having to care for a
BMT; C = cardiac) were enrolled at diagnosis or at birth (for those sick child at home, having a child
with a prenatal diagnosis), and data collection continued (a) at least with CLTCs in the hospital, and con-
monthly until death or one year after enrollment, and (b) within one tinuing to work to maintain health
insurance and housing.)
week after a life-threatening event or major change in treatment.
Role Exit Leaving previously occupied Leaving employment, education,
Most of the parents in the study had multiple interviews, many between role, due to relationships with family and
three and twelve during their participation in the study. Recruitment strain/conflict/overload friends (e.g., leaving law school after
occurred between 2008 and 2011 and all data collection was completed child with born with complex car-
by 2012. Parent interviews ranged in length from 30 to 90 min, with diac condition due to the demands
of their care.)
most interviews lasting longer than one hour. Given the aim of the
larger parent study, questions targeted parental perceptions of previous
or anticipated decisions, their experience of caring for the infant, and
how caregiving influenced their decision making. For our secondary the role theory framework (role strain, conflict, overload, and exit)
study, we did not contact the families, rather we utilized the already (See Table 1.).
established interviews.

Data analysis Role strain

A directed content analysis and thematic generation was performed
on the interview data by a team of four analysts (Hsieh & Shannon,
2005; Miles et al., 2014). A text-based analysis software program
(Qualitative Data Analysis Software | NVivo, 2020) was used to assist
in the organization of the data for coding and development of themes.
The 263 interviews were first read, followed by initial coding. A code-
book was developed, with a priori codes of parent burden, parent strain,
and expectations placed on parents exceeding typical roles. Inductive
codes stemming from the parents' own words were also used, and the
codebook was iteratively refined, informed by literature on parent and
provider caregiving roles. All cases were double coded by study team
members and any discrepancies were resolved in consensus with the
senior author. Through a set of sequential analysis meetings, key themes
and subthemes were developed out of the coded transcripts.
Results
Descriptive information
The original qualitative study included 33 participants with complex
life-threatening conditions. Of those, 10 were premature infants, 11 had
complex cardiac conditions, and 12 were participants with or requiring
bone marrow transplant. For our secondary analysis, we studied 15
cases of children that were discharged from the hospital and were at
home with their parents for any period of time. Of the 15, 5 were prema-
ture infants, 5 had complex cardiac conditions, and 5 were participants
with or requiring bone marrow transplant. Examples of a priori and
inductive codes included: burden, difficulties at home, parent or pro-
vider unrealistic expectations, support, role reversal, life changes,
parental learning curve, parental feelings, communication, and complex
care coordination. The codes were then organized into subthemes
and, ultimately, major themes. The major themes were informed by
Parents reported difficulties in meeting the demands of caregiving
for their infant. Role strain was due in part to the multiple roles that par-
ents had to hold to meet their child's needs including responsibilities
typically reserved for nurses or other health care providers, patient ad-
vocates, social workers, and care coordinators. Role strain was evident
when parents were required to act in the capacity of health workers
and make high-stakes medical decisions under stress. Parents per-
formed a variety of health caregiving tasks related to technology includ-
ing management of IV pumps, feeding tubes, drains, and ventilators.
They also completed dressing changes, provided tracheostomy, ostomy,
and central line care, and placed nasogastric tubes. Parents adminis-
tered medications that included complex dosing schedules via multiple
routes and monitored for the side effects. Parents administered CPR.
They managed medical and nursing plans of care such as infection con-
trol, pain management, and nutrition. The multifaceted health care role
required of parents involved a steep learning curve to gain knowledge
and technical expertise while dealing with a complex medical diagnosis.
One mother (BMT, case 29) recounted the daunting experience:
It's overwhelming [given] a big of a book and all this information and
… I'm still processing that one of my children is going to die and I'm
putting my other child through a big procedure. … I couldn't sit
there and take a couple days to read a book when a doctor just told
me that my child won't live to be five years old … I want to spend all
of my time with them instead of reading.
All parents developed considerable knowledge and expertise which
they used in daily care and life or death events. Parents became experts
at managing events like desaturation spells, bradycardia, and life threat-
ening events. One father (C, case 21) who detailed resuscitating his child
used language that implied he felt at fault as a caregiver, revealing strain
in his health caregiving role as well as guilt and strain in his role as a
parent:

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A. Koch, A.S. Kozhumam, E. Seeler et al.
[My wife] had forgotten the battery for the ventilator, and while she
was on her way back the ventilator went dead … so she had to rush
to get her to the house … and we had to use the ambu bag to revive
her because she was, her face was blue and purple and everything.
A mother (BMT, case 29) described the strain she experienced man-
aging care in the final moments of her child's life and feeling responsible
for the death:
The day she died … I called the doctor to tell them that she needed
an antibiotic … I'm like “She's stable. I can get her there without giv-
ing her the steroid shot because I already gave her two steroids.” And
that doctor told me “no you need to give her the steroid shot” and we
argued a little bit about it … And I just think it was too many steroids
in her system. That's my opinion, and I didn't want the autopsy be-
cause if it was true, my theory was true, I would have been the one
who did it.
One mother (BMT, case 4) described the personal strain of hospital-
ization in relation to not being able to be at home with her family and
support system due to needing to provide care to her hospitalized
child, “I really want to go home… it's been a year here … I'm not pre-
pared to stay longer.” Readmissions disrupted and strained parents'
role as a parental caregiver and as a parent in their personal life.
During inpatient stays, parents felt like they served the role of
“health care coordinator” both during the initial hospitalization and
during rehospitalization following discharge to home. Oftentimes, par-
ents served as the single consistent point of contact in the care contin-
uum and ensured continuation of services, clear communication
between multiple specialists' visits. They had to optimize appointment
schedules, and manage the number and timing of invasive procedures.
One father (C, case 21) related the difficulty of appointment scheduling:
A lot of the appointments have just been set, so we just have to show
up. At times it has required us to be at clinic maybe two or three
times a week. So they've tried to put them on the same day … then
we end up being there all day.
He also discussed the challenge of seeing multiple health care
providers:
I kind of wish we didn't have to talk to so many different people -
working with [the medical system] and having so many people to
provide care there isn't always adequate communication between
the different people.
Parents had to ensure that the health care team was knowledgeable
about their child and make sure that all team members knew what the
other team members were saying and thinking. They also had to guide
or lead the health care team. The mother (P, case 25) of a preemie de-
scribed how she set up meetings to ensure clear communication:
I try to meet every time the new attending comes on to all be on the
same page … I try to make rounds … on the first round that I make, I
try to talk to the doctor and ask him, can I set up an appointment
with him and the team so that we can all be on the same page and
see where things are … headed.
Many parents felt they had to guide providers in discussions and ask
questions because providers skirted around necessary information.
Other parents described frustration at having their expertise questioned
in the hospital despite their high-acuity caregiving experiences at home.
In a bizarre role reversal, one mother (C, case 21) described having to
manage a distraught provider when opting to wait for a catheterization
procedure:
That doctor was really concerned and you know got really emotional
and said to me “you don't understand. I think she may die over the
weekend if we don't get her cathed and find out what's wrong.” I
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Journal of Pediatric Nursing 61 (2021) 67–74
had to deal with calming the doctor and saying, “Thank you for your
concern but, even if something were to happen to her, I've seen so
many families in here that never get to take their babies home, and
then they pass away in the PCICU. I've had that experience, and I'm
so grateful.” So I found myself trying to comfort the doctor and tell-
ing her it was okay [if my child dies].
Sadly, when systemic care coordination failed, deleterious outcomes
followed. Parents described readmissions due to poor discharge com-
munication that had led to inadequate care, infections, and complica-
tions. Parents recounted threats of being reported to Child Protective
Services for the child's medical condition resulting from miscommuni-
cation during hospital discharge.
The strain of caregiving was compounded for parents with multiple
children with CLTCs. These families were separated for long periods or
commuted to visit one another when one child needed treatment at a
medical facility and another did not. Parents had to take time off work
to be a caregiver of the child's siblings when their child with CLTCs
was hospitalized. One mother (BMT, case 23) described how she rarely
saw her husband despite being in the same hospital unit because their
children were immunocompromised and in different rooms: “He's in
there, [and] I'm in here all the time, and we see each other sometimes
in passing … [the kids] can't be exposed to each other.” Parents coped
with wrenching ethical dilemmas as they wrestled with decision mak-
ing and the desire to be fair and equal in their treatments for each
child, despite separate prognoses. Parents remarked about the strain
of having to be with one child while hospitalized and having to make
life altering decisions while not being able to be at home with the
other children.
Our results showed that financial strain was associated with parental
caregiving responsibilities. Parents were burdened with having to nav-
igate insurance and health care systems to address gaps in coverage,
and locate resources such as nonprofits, fundraisers, and extended fam-
ily for financial support. Parents reported that medical bills would get
out of control and that some providers did not understand parental fi-
nancial or insurance issues. One mother (BMT, case 29) described finan-
cial strain from overwhelming hospital bills: “I am fighting with
insurance to try to pay them. I'm not paying them now…they will get
like fifty dollars a month until I die.”
Role conflict
In addition to experiencing strain within their role as caregiver, par-
ents also experienced conflict in carrying and managing multiple roles
associated with different statuses. Parents experienced tension while
struggling to meet competing demands such as caregiving, being an em-
ployee, and/or being a student due to missing work, delaying school,
struggling on the job, or relinquishing job offers and promotions for
caregiving. One father (P, case 25) commented, “I was going to transfer
for a higher position when she was born, had to put a hold on that be-
cause that would be a lot of driving.” Parents reported exhaustion and
lack of quality time together. A father (C, case 27) stated that his job
as a truck driver was impacted due to due to the strain of caregiving
which impacted his role as an employee, “It be just little mishaps, driv-
ing and miss my exit, drive ten miles out of the way before I realize.”
Parents' role in maintaining their relationships caused strain. Spou-
sal relationships were strained from frequent separation or stress and
arguments. Some parents sought marriage counseling. Others (C, case
21) struggled with distinct coping styles and a perceived need to be
the bedrock in a relationship: “I've found that I've had to be the strong
one, to let her be able to have all the emotions.” Parents felt guilt
about lacking time to spend with their well children or having to send
their children to stay with relatives during a sibling's hospitalizations.
Uniquely challenging situations were experienced by parents struggling
to balance the demands of caregiving with the stressors and hardships
accompanying different seasons of life. A father (C, case 27) grappled
A. Koch, A.S. Kozhumam, E. Seeler et al.
with the demands of the “sandwich generation,” caring for both his
child with CLTC and his mother: “my mom wants to get out of the nurs-
ing home, and she had to be patient … it's a lot going on.”
Role overload
Caregiving demands surpassed resources in every case analyzed.
Role overload was multifactorial, related to insufficient physical, psy-
chological, social, emotional, and financial resources. One mother
(BMT, case 23) expressed emotional overload: “I heard chemotherapy
and my knees got weak, and I just had to sit down like in the hallway
and catch my breath.”
Another mother (C, case 10) spoke of insufficient time due to an
overload of appointments:
You've got a speech therapist who wants you to do all this stuff, a
physical therapist wants you to do this, a doctor who says that she
has to have this, they don't take into consideration that I've got
twenty-one doctors telling me that she has to have all this other
stuff. And I … try to put it into a twenty-four-hour period, so I don't
even do everything.
Many parent caregivers expressed the desire to have additional so-
cial support. One mother (C, case 30) reflected, “[want my] spouse to
be there, they can't because they're working … I wish that my biological
family would be more involved. I feel really lonely. I just want somebody
to be there.”
Role exit
Parents interviewed experienced multiple role transitions and role
exits, beginning with their assumption of a dual role as both parent
and caregiver. Parents also reported role exits related to employment,
education, and relationships. A father of a child undergoing a bone mar-
row transplant was fired from his job due to time he took off for ap-
pointments and hospitalizations. Parents lost their jobs due to needing
to provide care for their child, this mother (BMT, case 29), “My job
only gave me a four months [off] but [treatment] takes six to twelve
months… so I was let go.”
One mother left law school to take care of her child, giving up a year
of coursework and thirty thousand dollars in tuition. Another parent
dropped out of school in 12th grade to assume caregiving. Relational
strain also caused role exits such as separation or divorce. One mother
(C, case 30) recalled an altercation with her husband resulting in her
moving out with their child back to her mother's home, “ It's really
stressful on us with the baby having a heart problem. [W]e argue
about like, me needing more help … I think it just got like too stressful.”
Relationships with family and friends also became strained, some-
times even breaking due to the emotional toll of interactions. Parents re-
ported grief or jealousy when seeing friends or family with a healthy
baby, which made them wonder why them, and why their child. A
mother described how it was hard to be around her sister who had a
healthy baby about the same age as her son who had a CLTCs. The
most devastating role exit experienced was loss of a child, with grief cu-
mulating with guilt and regret, as one mother (BMT, case 29) shared “If I
knew… I would have not done the transplant. I would have just let her
live her little life out. I can't fall asleep at night because it's always the
‘what ifs’ in my mind.”
Positive experiences
Positive experiences of caregiving were also evident, reflecting per-
sonal growth through hardship as well as coping strategies that offered
respite, provided spiritual comfort, or assigned meaning and identity to
caregiving. Some parents believed the strain of caregiving had strength-
ened their relationship because they went through strain together.
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Journal of Pediatric Nursing 61 (2021) 67–74
Some parents sought therapeutic activities like reading, journaling, or
walking. Because parents had little control over their child(ren)’s health
outcomes, much of their coping was emotion-focused rather than
problem-focused.
Discussion
Our results show that parents of children with CLTCs take on multi-
dimensional roles as caregivers, including serving as informal nurse,
physician, patient advocate, social worker, and care coordinator while
maintaining additional personal roles such as, employee, parent, and
family member. Previous literature has located these experiences
within the concept of caregiving burden (e.g., parent and in home
health care provider as well as role of care coordinator). In this study
we explored the lived experiences of parents of children with CLTC,
and framed these experiences using concepts from role theory. This
framing facilitates understanding of caregiving both through the con-
cepts of role strain, conflict, overload, and exit, as well as through posi-
tive negotiations of roles. Despite acknowledging that much of what the
parents experience is felt as burden, we purposively move away from
the concept of caregiver burden as parents seemed to find this term
morally offensive. They often corrected themselves and changed their
language when they inadvertently used the term burden to describe
caring for their child. Parents did not want to characterize their strain
and overload as burden due to the negative implications of its associa-
tion with caring for their child, therefore indicating that their parental
load was burdensome. For this reason, our goal was to give language
to the burden parents had by utilizing the terms in role theory. Inter-
viewees did not describe caregiving as burdensome in the sense of
being undesirable, but did portray themselves as heavily laden with
multiple roles. Parents noted challenges that were, in part, shaped by
perceived expectations of health care providers and the health care sys-
tem as well as perceived lack of support.
The status of parental caregiver involved an expansive role set and
parents risked role strain, meaning that it is difficult to assume the si-
multaneous role of nurse, physician, patient advocate, care coordinator
parent, and self without feeling stress and strain. Following other re-
search, we documented parents' learning curve (Aburn & Gott, 2014;
Van Orne et al., 2018), medical and nursing responsibilities (Berry
et al., 2014; Caicedo, 2014; David Vainberg et al., 2019; Kuo et al.,
2011), advocacy, and care coordination (Abrams et al., 2019), and
health care system navigation all can contribute to strain (David
Vainberg et al., 2019). We identified factors contributing to subjective
role strain including the stress of hospitalization and readmissions
(Lyu et al., 2020), interactions with health care providers, lack of com-
munication (Levine et al., 2020), and lack of social and financial support.
The difficulty of time-bound, high-stakes medical decision making was
an important topic repeated in interviews, indicating the need to de-
velop relevant supportive strategies (Pinto Taylor & Doolittle, 2020;
Santoro & Bennett, 2018). Another important theme was the need for
health care providers to respect their role as parent caregivers and the
expertise they had developed, which could build trust and improve
family-centered care, and mitigate strain (Vance et al., 2020). Although
some studies address caregiving for children with rare diseases (Currie
& Szabo, 2019; Pelentsov et al., 2016), the parental role strain was sig-
nificant and full of challenges when parents were caregiving for multi-
ple children with CLTCs. This was a unique finding, underscoring the
need for research addressing the supportive needs of this population.
Besides role strain, parents in this study also experienced role con-
flict, role overload, and role exit. Conflicts occurred when parents
spent an inordinate amount of time caring for their child while also try-
ing to work, maintain a home, and care for self. In line with previous re-
search, school- and work-related challenges were a common source of
role conflict for caregivers, causing psychological strain and strain for
current and future financial health related to inability to save or pay
bills, loss of savings, and debt accumulation (Caicedo, 2014; Foster
A. Koch, A.S. Kozhumam, E. Seeler et al.
et al., 2019; Kuo et al., 2011; Montes & Halterman, 2011; Neri et al.,
2016). As in the literature, we found that role overload was tied to insuf-
ficient physical, psychological, social, emotional, and financial resources
to support care (Amtmann et al., 2020; Caicedo, 2014; Hatzmann et al.,
2009). Role conflict, often operationalized as absenteeism (missed
school/work time) or decreased productivity at school/work (Neri
et al., 2016), sometimes transitioned into role exit as job change/loss
or education termination. Parent's loss of educational opportunities or
employment often has future impacts on a child with a CLTCs, even if
it is through the increased stress or suffering of the parent. Role conflict
leading to role exit was significant in our findings, and parents identified
that feeling that health care providers did not consider role conflict as a
significant component in the care of the patient and family. When pro-
viders utilize role theory aspects, instead of caregiver burden, when
working with a parent or family they may be able to have greater insight
into struggles or parental suffering. Role conflict in relationships oc-
curred in most of the parent participants in our study, causing strain
on the family unit, risking sibling marginalization, conflict with ex-
tended family members, and sometimes resulting in role exit through
separation, divorce (Abrams et al., 2019). What we found is that the so-
cial isolation that occurs when caring for a child with a CLTCs is a signif-
icant aspect leading to role conflict.
Parents of children with CLTCs expressed challenges in enacting
roles that they were not prepared to take on, largely in-part due to the
massive undertaking of informal caregiving, financial costs of care,
shifting of social support, and negotiating where to make time to care
for their other responsibilities. Even when using positive coping to man-
age stress and responsibilities, the caregiver status still carries a notable
risk for role strain, conflict, overload, and potentially role exit. We found
that caregiving for their children was linked to parent self-care deficits,
however some subjective positive experiences of the caregiving role
were also reported. Strategies for increasing parental support and
family-centered care are therefore warranted for the future.
The findings from this study provide direction for provider-led pol-
icy development, hospital/system accommodations and cultural sensi-
tives. This group of parents caring for a child with CLTCs are at risk for
social isolation. Thus provider and system-led networks of peer support
for parents with children with CLTCs could be a critically important re-
sources. As has been said, if you are trying to get somewhere, the sup-
port of someone who has already been there is key. Instead of giving a
new parent a plethora of reading materials and websites, it is important
to assess their learning style and accommodate them with choices in in-
structional methods to learn and participate in their child's care. Upon
hospital readmission, best practices may be to have parents teach the
team what has been best for their child, and continue to be as active
in their child's care as they desire, requiring consistent communication
and questioning by providers.
Expanding Medicaid services in states that have not expanded are
ways to support families with children with CLTC. Other financial as-
pects of support are to increase the time under the Family Medical
Leave Act (FMLA) for parents with children with CLTCs. This can allow
parents to take children to the appointments or to have extended stay
while their child is hospitalized without fear of being fired. Policies to
remunerate parents for the caregiving they provide their child with
CLTCs when a home health nurse is not able to be present should be
enacted through the state or federal government. Another way to ac-
commodate parents of children with CLTCs, who likely hold competing
roles, is to evaluate if hospital visiting hours policies inhibit family
participation.
While hospitalized, addressing parents' needs for food and self-care
is a supportive step health care providers can take. Addressing nutrition
and self-care can help set a precedent that it is important for the parent
to also care for themselves (Hall et al., 2015). An opportunity for paren-
tal self-care that was not seen in the literature was the possibility of hav-
ing an exercise room for parents of children with CLTC, that way a
provider can offer space for parental self-care. Studies indicated that
72
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Journal of Pediatric Nursing 61 (2021) 67–74
not having access to food, for example a meal service through the hos-
pital that is free and easily accessible to parents with children with
CLTC heightens the distress, concern, and worry that parents are already
facing (Masters-Awatere et al., 2020).
Implications for future practice
With the growing number of children relying on parent delivered
home-based care for life-sustaining medical and nursing tasks, health
care providers need to partner with patents, asking a lot of questions
about their life, and actively listening to them. Providers should inquire
about finances/financial support, relationship discourse, emotional and
relationship support, education changes and goals, employment chal-
lenges and worries, and the parents' ability and efforts to provide self-
care.
Providers need to encourage relationship support, including
connecting families who have been through similar experiences, hold-
ing social events for parents either in the hospital or at the Ronald
McDonald House, and encouraging parents to maintain their familial re-
lationships. Parents all reported financial strain and need for financial
support due to costs of hotels, transportation, equipment, and medica-
tions in addition to the typical costs of living. It would benefit the
whole system if providers were able to familiarize themselves with
the type and extent of caregiving that children with CLTCs require at
home, and then what is available for the family in their location. In
doing so, they can advocate for increased support for parents, especially
when the allotted nursing hours are insufficient for their needs. Pro-
viders can help push their legislators for policies that financially support
parents when they are providing life sustaining health care to their
child. Parents may need educational support to continue high school
or higher education. Providers can assess parents' educational needs
and help them find support though their school or with the hospital
school, or hospital teacher, so they do not fall behind in their education
and experience further challenges. Providers are often already under ex-
orbitant time constraints so adding more to their assessments and items
to communicate with families will have to be offset with more staffing
support, which will include policy change and willingness from hospital
administration and management.
Expectations that parents can simultaneously provide care for their
families, themselves, and their hospitalized child with life-limiting ill-
ness can be overwhelming, leading to role strain and overload. Pro-
viders must advocate for parents to care for themselves (i.e., sleeping,
eating, socializing, exercise) as doing so can alleviate role overload
and the risk of role exit. Having a fitness room for parents would provide
an opportunity for providers to encourage parents to take time for self-
care. If there is a Ronald McDonald room in the hospital providers can
ensure the hours of operation are accommodating to parents through-
out the day and night. Ensuring parents have access to healthy afford-
able or free food while in the hospital with their child is also an
essential way to show support to the parent while also ensuring paren-
tal self-care. Offering social support connections, parent health educa-
tion, or classes on skills to assist parents in setting up home health,
communicating with home health nurses, working with insurance com-
panies, or advocating for clustered appointments are ways to empower
parents and reduce the role strain and role overload they may encoun-
ter. We propose that providers refrain from using the term “burden”
when referring to parental caregiving and utilize the terms “role strain”
or “role overload” instead as parents expressed reluctance to speak
about caring for their child as a burden.
Limitations of this manuscript are that the data was collected for a
study on medical decision making and did not specifically focus on the
role of the parent. More direct questioning on parental roles, and their
experience in various roles is required to further clarify the aspects of
role strain, role conflict, role overload and role exit.
A. Koch, A.S. Kozhumam, E. Seeler et al.
Conclusion
Family-centered care with multifactorial strategies to support par-
ents of children with CLTCs are essential to the health and well-being
of the child and family. Health care providers can assist with building
and supporting relationships between parents, family members, and
among members of the greater community of parents of children with
CLTCs. Parental role strain and overload should be assessed at each clinic
visit, at hospital admission, and on discharge. Appropriate financial re-
imbursement for parents providing informal care should be considered
a critical means of reducing role overload and of offsetting strain when
role exit from their employment or education occurs due to the de-
mands of caregiving for a child with complex chronic conditions.
Funding
This work was supported by the NIH-NINR 1R01NR010548 01A1;
Docherty, PI; Decision-making for Infants with Complex Life-
Threatening Conditions, Durham, North Carolina, United States of
America.
Declaration of Competing Interest
The authors declare no potential conflicts of interest with respect to
the research, authorship, and/or publication of this article.
Acknowledgments
The author acknowledges Donnalee Frega, PhD, RN for participating
in technical editing of the manuscript.
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