Nursing Continuing Professional Development
Parent/Caregiver Perceptions of the
Concept of Legacy in a Pediatric Hospital:
A Qualitative Study
Maile T. Jones, Jessika C. Boles, Jenna E. Dunbar, and Jessica Cook
early 6 million overnight
hospital stays are recorded
for children each year in
the United States (McDermott et al., 2017). Whether a child
is admitted for a common pediatric
ailment or a life-threatening and
life-changing illness, pediatric hospitalization impacts entire family
systems by challenging family relationships, coping mechanisms,
roles, and responsibilities (Foster et
al., 2016). Parents/caregivers have
identified several significant stressors when their child is hospitalized, namely lack of information
about the child’s condition or procedures, the unfamiliarity of the
hospital environment, separation
from home and family, and uncertainty about illness and treatment
plans (Canga et al., 2020). If these
stressors and parent/caregiver coping needs are left unaddressed,
chronic health care-related stress
can impair quality of life and lead
to long-lasting post-traumatic stress
symptoms or disorders for parents/
caregivers and their children (Price
et al., 2016). Given the wealth of
stressors parents/caregivers encounter during a child’s hospitalization,
and the clearly documented direct
relationship between parent and
N
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Jones, M.T., Boles, J.C., Dunbar, J.E., & Cook, J. (2022). Parent/caregiver perceptions of the concept of legacy in a pediatric hospital: A qualitative study.
Pediatric Nursing, 48(2), 59-67, 102.
A child’s hospitalization affects the entire family system, with parents/caregivers
reporting a myriad of stressors challenging family dynamics and coping efforts.
Legacy-oriented interventions employ play- and arts-based techniques to promote collaboration and communication in families of hospitalized children and
thereby foster resilience. Although offered in most children’s hospitals, little is
known about the impact of these interventions on pediatric patients and families,
or the ways pediatric health care providers, parent/caregivers, and pediatric
patients understand and describe the concept of legacy. This study explored the
legacy perceptions of parents/caregivers of hospitalized children on acute or critical care units in an academic medical center. Ninety-three parents/caregivers
completed a semi-structured, in-depth interview regarding their perceptions of
the concept of legacy. Analysis yielded four themes: 1) legacy is a transgenerational process; 2) legacies can be actions, accomplishments, and experiences;
3) legacy can be a powerful tool for education and change; and 4) a ‘good’ legacy
can be left in different ways. These findings together indicate that capturing and
integrating a family’s unique history, stories, strengths, and experiences appear
to be a desirable and useful component of family-centered health care.
Additionally, when considered along previous research and practice, it appears
medical and psychosocial care providers should assess, recognize, and involve
parent/caregivers’ experiences with and understandings of legacy into legacyoriented interventions or activities, as well as other aspects of care related to
patient and family coping and functioning.
Key Words:
Pediatric, qualitative, caregivers, caretaking, health care.
child coping and distress (Doupnik
et al., 2017), supporting parents/
caregivers during a child’s hospitalization is a priority objective for
high quality health care.
Certified Child Life Specialists
(CCLSs) and other health care professionals have recognized this need
for parent/caregiver support during
a child’s hospitalization, imple-
menting a variety of family-centered
interventions to promote coping
and adjustment. Certified Child Life
Specialists are health care professionals who capitalize on the power
of play to provide education, promote coping, and reinstate a degree
of normalcy for children and families in medical settings (Association
of Child Life Professionals, 2020;
Maile T. Jones, M.Ed, CCLS, CIMI, is a Certified Child Life Specilist, Monroe Carell Jr. Children’s
Hospital at Vanderbilt, Nashville, TN.
Jessika C. Boles, PhD, CCLS, is an Assistant Professor of Practice, Vanderbilt University, and
a Certified Child Life Specialist, Monroe Carell Jr. Children’s Hospital at Vanderbilt, Nashville, TN.
Jenna E. Dunbar, M.Ed, CCLS, CIMI, is a Certified Child Life Specilist, Johns Hopkins Children’s
Center, Baltimore, MD.
Jessica Cook, M.Ed, is a Doctoral Student, The University of Memphis, Memphis, TN.
PEDIATRIC NURSING/March-April 2022/Vol. 48/No. 2
59
Boles, Fraser et al., 2020). In addition to the psychological preparation, medical play, diagnosis education, and generalized family support they offer, CCLSs have also
integrated legacy-oriented interventions as a family-centered coping
support (Boles & Jones, 2021).
Sometimes referred to as ‘legacy
building,’ the more aptly named
legacy-oriented interventions are
arts- and play-based therapeutic
interventions designed to help children and their families stay connected, express their thoughts and feelings, find meaning, and create lasting positive memories during difficult health care experiences (Sisk et
al., 2012). Mediums, such as journaling, scrapbooking, photography,
video diaries, keepsake collections,
handprints, plaster hand-molds, letters, storytelling, and songwriting,
are just a few of the legacy-oriented
intervention techniques CCLSs use
to help preserve and strengthen
family bonds, promote open communication, and foster resilience
(Boles, 2014; Foster et al., 2012;
Ramirez et al., 2019; Sisk et al.,
2012). However, amidst resource
limitations, staffing constraints,
and the presumptions upon which
these practices are founded, legacyoriented interventions have been
typically and unfortunately prioritized in those moments in which a
child’s death is anticipated or imminent (Boles, Jones et al., 2020; Boles
& Jones, 2021).
Although 97% of children’s hospitals offer legacy-oriented interventions as standard of care for those
patients and families approaching
the end of life (Foster et al., 2012),
little is known about the impacts of
these activities on parent/caregiver
distress or other measures of family
functioning, coping, or adaptation.
As the course of history and health
care research patterns continues to
demonstrate, illness and treatment
concepts are often explored in adult
populations and settings prior to
their study and integration in pediatrics. At this juncture, legacy practices in adult health care have taken
a variety of clinical forms, yet
empirical evaluations of legacy-oriented interventions with seriously
or terminally ill adults are limited
(Martinez et al., 2017; Scarton et al.,
60
2018). However, the handful of
interventional studies completed to
date has yielded promising results
in terms of feasibility, acceptability
(Akard et al., 2018), and appreciable
improvements in emotional wellbeing and spiritual functioning
(Piderman et al., 2015), life satisfaction (Allen et al., 2014), self-efficacy
(Franklin & Cheung, 2017), and
feeling prepared for the end of life
(Keall et al., 2013). Further, many of
these effects have held true for caregivers and family members, suggesting some family-centered utility of
legacy-oriented interventions in
adult health care.
Whether within adult or pediatric frameworks, the study of legacy
has been hindered by a lack of consistent terminology for describing
the concept of legacy, and those
interventions designed to target
legacy needs and preferences.
Signified with terms ranging from
legacy-building (Sisk et al., 2012) to
legacy-making (Foster et al., 2012),
memory making (Riegel et al.,
2019), life-review (Allen et al.,
2008), Dignity Therapy (Chochinov
et al., 2005), spiritual life review
(Piderman et al., 2017), and even
legacy artwork (Schaefer et al.,
2019), the only clear consistency is
that legacy as concept and intervention has been defined and operationalized in a variety of ways. In
gerontology, legacy is described as
“the process of passing one’s self
through generations, creating continuity from the past through the present to the future” (Hunter, 2008; p.
328); however, Boles and Jones
(2021) define legacy as “an enduring
representation of the self—its qualities, experiences, effects, and relationships—built and bestowed across
generations. Whether concrete or
intangible, intentional, or serendipitous, legacies are an avenue of connection, education, inspiration, or
transformation” (p. 19). Conversely,
Naik and colleagues (2016) describe
legacy as “being understood and
remembered by one’s social network”
(p. 629), whereas others have asserted
that “legacy is both what we leave
and how we live” (Andersen et al.,
2018; p. 260), or “the values or meanings of one’s life passed from one to
another” (Schellinger et al., 2018; p.
161).
Thus, the existing spectrum of
legacy definitions and practices further complicates the current lack of
research dedicated to the specific
features, forms, functions, and outcomes of legacy. Despite its interventional prevalence in pediatric
health care settings, the concept of
legacy itself has yet to be intentionally explored and described in pediatric health care. It follows, then,
that to understand the potential
impacts of legacy interventions, it is
necessary to first understand the
ways parents/caregivers perceive
and describe the concept of legacy,
which will improve intervention
validity. Therefore, the purpose of
this study was to explore the perceptions of the concept of legacy
among parents/caregivers of hospitalized children at an academic
medical center.
Methods
Study Design
Moustakas’ (1994) psychological
phenomenology, defined as a
methodology grounded in social
constructionism and focused on
understanding the underlying
essence of and perceptual differences concerning a shared phenomenon, was chosen for this study to
capture participants’ understandings of, experiences with, and
thoughts about the concept of legacy for three reasons. First, the lack
of both conceptual and experimental research regarding legacy in
pediatric health care has, as of yet,
failed to produce topic-specific
methodologies or measures that
research teams can consider and
select. Second, because the purpose
of this study was to understand
legacy perceptions of parents/caregivers of hospitalized children and
the aim to construct an evidenceinformed definition of the concept
of legacy, it was necessary to select
an approach that would generate
diverse perspectives around a unifying phenomenon. Finally, logistical
difficulties and health risks of group
data collection strategies led the
research team to conclude that individual, in-person interviews would
be the safest, most feasible, and
least disruptive option for the
PEDIATRIC NURSING/March-April 2022/Vol. 48/No. 2
Figure 1.
Parent/Caregiver Interview Questions
intended participant population
(Boles, 2018; Boles & Daniels,
2019).
Setting
This study was conducted at a
children’s hospital associated with
an academic medical center in the
Southeastern United States. Accredited as a Level-I trauma center, the
hospital serves patients and families
from a three-state and 200-mile
radius at its 209-bed main campus.
This site was chosen not only for
the diverse patient populations it
serves, but also for its reputation
as a high-quality care institution
and international contributions to
health care research. In addition,
the research team was familiar with
and able to access this site due to
the principal investigator’s dual
employment status with the medical center and the university with
which it is affiliated. Approval for
this study was granted by the
research site (Protocol Number
171121), though the two entities
share a common Institutional Review Board with designated subcommittees.
Participants
Participants in this study 1) were
18 years or older at the time consent was obtained, 2) spoke English
as their primary language, and 3)
were parents/caregivers of pediatric
patients (less than 18 years of age)
who were actively being diagnosed,
treated, and managed on an inpatient floor at the research site.
Parents/caregivers were defined as a
biological parent or a primary caregiver (e.g., grandparent) to the pediatric patient. Parents/caregivers of
children in state custody were not
approached for participation in this
study.
Potential participants were recruited from both acute and critical
care pediatric inpatient units, which
included
hematology/oncology,
infant medicine, adolescent medicine, medical acute care, surgery and
trauma, pediatric critical care, cardiac intensive care, cardiology stepdown, and neonatal intensive care.
Those who met eligibility criteria
were pre-identified each day by the
principal investigator, and a census
was created to guide bedside recruit-
1.
2.
3.
4.
5.
The word ‘legacy’ is one that we hear used in many different ways, but it is
also a word that is hard to define. How would you define the concept of
‘legacy’ for you and your family?
What sorts of experiences in your life have led you to this particular
definition?
What other sources of information have you used when thinking about legacy
in this way?
When you hear the word legacy, what is your first reaction? (Prompting for
emotional response rather than cognitive process.)
Is there anything you’d like to share that we haven’t asked?
ment. Eligible participants were
approached at their child’s bedside
by two members of the research
team. As one team member guided
the parent/caregiver through the
study details, consent document,
and demographic survey (participants documented written consent
and survey responses using a
REDCap-enabled electronic tablet),
the other team member engaged in
play and conversation with the
child, if appropriate. When multiple
parents/caregivers were present, met
eligibility criteria, and were interested in participation, they were
allowed to do so; however, this was
a rarity given the difficulty families
often face when balancing a child’s
hospitalization with other needs at
home, work, and school.
Although parents/caregivers were
asked to participate in this study
during the stress and uncertainty of
a child’s inpatient hospitalization,
many of which were for critical illnesses or injuries, those approached
by the research team rarely declined
to participate. Instead, participant
accrual was at times limited due to
parents/caregivers not being at bedside for various reasons, concurrent
medical procedures in progress or
needing to begin, or medical staff
other than the primary nurse providing bedside care. In these situations, the research team offered to
return at another time if appropriate or made note to attempt recruitment on a different day and time, if
possible.
Procedures
All parents/caregivers who met
eligibility criteria and chose to participate were immediately enrolled
PEDIATRIC NURSING/March-April 2022/Vol. 48/No. 2
in the study. After digitally signing
the study consent form using a
REDCap-enabled electronic tablet,
each participant completed a brief
demographic survey on the tablet
that collected information about the
parent/caregiver and the nature of
their child’s hospitalization. Parents/
caregivers then participated in a brief,
in-person semi-structured interview
about their legacy perceptions and
experiences that lasted an average of
25 minutes. All participants were
offered a choice of locations and
accommodations for completing the
interview to minimize inconvenience, maximize opportunities for
empowerment and control, and
respect parent/caregiver and patient
privacy (Boles, 2018; Boles &
Daniels, 2019); however, all but two
participants chose to participate in
their child’s hospital room.
The semi-structured interview
guide consisted of five open-ended
questions, with probes added as
needed to clarify participant perceptions and experiences (see Figure 1).
Each participant was first asked to
describe how they would define the
word ‘legacy;’ follow-up questions
were then asked about the legacy
experiences, information sources,
thoughts, and feelings they incorporated into their definition. One of
the research team members conducted and audio-recorded the
semi-structured interview, while the
other remained available to play
and interact with the patient as
needed during this time. Both
research team members were trained
graduate student research assistants.
Participation in this study concluded with completion of the semistructured interview.
61
Figure 2.
Data Analysis Procedures
Open coding: Each line of
each transcript coded
independently by two team
members.
Recurrent or similar codes are
combined into categories.
Perceptions of the Concept
of Legacy
Transcripts reread to
check for relevance of
categories.
Connections between and across
categories noted and used to
assemble themes.
Transcripts reread to
ensure that themes
developed reflect
participants’ experiences.
A group textural description is
developed to detail themes as
seen in participants’ words.
Source. Adapted from process and figure described by Boles et al., 2017.
Data Analysis
Descriptive statistics were conducted in SPSS (IBM, 2019) to better
characterize the study sample. All
interviews were transcribed verbatim, double-checked by another
member of the research team, and
then independently coded by two
members of the research team using
an inductive, categorizing process
outlined by Boles and colleagues
(2017) and shown in Figure 2. An
inductive, line-by-line coding approach was chosen both due to the
lack of pre-existing theoretical
frameworks for the concept of legacy, and to allow for diverse
thoughts, experiences, and beliefs
that may otherwise have been limited by a deductive coding scheme.
Rather than resolving code discrepancies through consensus
meetings, codes from both reviewers were entered in a comprehensive spreadsheet to maximize the
diversity of perspectives and interpretations present in the findings.
Through continued reviews of tran-
62
parents/caregivers were unsure how
to answer this question and asked
the research team members for clarity. More than half of the sample
(56%) had been hospitalized for
four or more days at the time of participation in this study.
scripts and the individual codes,
repetitive or overlapping codes were
collaboratively assembled into larger categories by the research team.
Related categories were then combined to comprise the four themes
detailed below. Findings were discussed with all members of the
research team to ensure completeness and accuracy of interpretations, resolve disagreements, and
ensure that themes remained rooted in the data.
Results
Sample Characteristics
The final sample (see Table 1)
included 93 parents/caregivers of
pediatric patients receiving inpatient acute or critical care. Participants were largely female (69%),
white (78%) mothers (68.8%)
between the ages of 30 and 39 years
(39%). Of the 93 participants, an
acute majority reported their child
had a illness (52%) rather than a
chronic condition; of note, several
Thematic analysis of semi-structured interview data yielded four
themes: 1) legacy is a transgenerational process; 2) legacies can be
actions, accomplishments, and
experiences; 3) legacy can be a powerful tool used for education and
change; and 4) a ‘good’ legacy can
be left in different ways.
Theme 1: Legacy is a transgenerational process. Parents and caregivers largely defined legacy as a
transgenerational process passed
across generations through “children, grandchildren, down along
the line. Years and years.” As one
grandmother noted:
…genealogy, that’s the way I
think about legacy, like what
is behind you plus what is
ahead of you. How your family left the legacy for you and
how you’re going to leave the
legacy for your kid.
According to a mother of a
teenager with an eating disorder,
legacy could take many forms.
Legacy could be passed through
tangible items such as assets, possessions, “monetary gifts and land,”
but more importantly, legacy was
defined by the intangibles – “the
values and morals passed from generation to generation.” Thus, legacy
“may not be something tangible
you can feel, it could just be
thoughts and ideas and processes”
that are passed through and across
generations.
Grandparents and parents are
common sources of one’s knowledge of family legacy. Stories and
memories provide other family
members with a window into influential stories that shaped family
dynamics and parenting practices.
In this vein, legacy was conceptualized as something unique to each
family. Additionally, legacy often
brought about reminiscence and
PEDIATRIC NURSING/March-April 2022/Vol. 48/No. 2
Table 1.
Participant Demographics
N
Percentage (%)
Mother
64
68.8
Father
23
24.7
Other
6
6.5
20-29
20
21.5
30-39
36
38.7
40-49
23
24.7
50+
12
12.9
Variables
nostalgia of the past and reflection
of how their family legacy has been
carried on to the present. As one
participant described:
Relationship to Patient
Age (Years)
Race
White
72
77.4
Black/African American
8
8.6
Hispanic/Latino
5
5.4
Other
7
7.6
12
12.9
$10,000-$20,000
7
7.5
$20,001-$30,000
12
12.9
$30,001-$45,000
8
8.6
$45,001-$60,000
19
20.4
Greater than $60,000
30
32.3
4
4.3
High school/GED
23
24.7
Some college
24
25.8
Annual Income
Less than $10,000
Education Level
Less than high school
Associates
8
8.6
Bachelors
22
23.7
Graduate cegree
5
5.4
PhD, MD, terminal degree
2
2.2
Single
20
21.5
Married
57
61.3
Divorced
9
9.7
Chronic
40
43.0
Acute
48
51.6
1
13
14.0
2
11
11.8
3
13
14.0
4+
52
56.0
Marital Status
Admission Reason
Length of Hospital Stay (Days)
Notes. N = 93; some participants did not disclose all demographic variables.
PEDIATRIC NURSING/March-April 2022/Vol. 48/No. 2
Just watching family, you
always have that one that
kind of stands out that’s the
leader that you look to what
grandma did, what did grandma say. She kind of leads all
the way down and you keep
following what she started.
Legacies were primarily defined
by qualities and possessions bestowed upon the current generation
and intended to carry into the
future. As one father explained:
If you’re a lucky enough individual to have had children,
your legacy is embedded in
them. It’s kind of your values,
morals, and ideals that you’ve
shown them throughout your
life. So the things you’re interested in, they will be interested in. The values and ideals
that you’ve had that you’ve
bestowed in them will carry
on with them.
Theme 2: Legacies can be actions, accomplishments, and experiences. Legacy was identified as
something both bestowed and
earned. When thinking about legacy, participants took stock of their
past and current possessions, inventorying who they were and what
they had done in their lifetime.
Legacy was conceptualized as
“deeds or actions that are notable”
defined by personal stories, values,
principles, and beliefs. As one father
shared: “I think it’s just be the best
person you could be, do right by
others. I don’t look at legacy as
much as a family name that carries
on but more of your actions.”
Legacy encapsulates one’s life
challenges and life journey, both
where they’re from and what
they’ve accomplished. Life experiences that shape one’s legacies were
identified as school, business legacies, occupation, and personal or
familial health challenges. According to participants, past experiences
help shape actions, principles, and
beliefs. For some, legacy is a
63
reminder to keep fighting; for others, it is a reminder to live the best
life and reach their full potential in
daily actions. As reflected by one
father: “It is not necessarily what
you leave; it’s about what you’re
doing.” To have good morals,
donate to charity, volunteer, and be
thoughtful and compassionate with
others are all ways participants
describe legacy as being intentional.
According to participants, hard
work and perseverance are also
ways people make a name for themselves. In this sense, legacy was
reported as a choice – a choice of
life philosophy, beliefs, and actions.
Participants highlighted one’s character, influence, impact, and
impression on others, whether
through family name, achievements, or research, as defining
“what one is known for” and “what
they stood for.”
Theme 3: Legacy can be a powerful tool used for education and
change. According to the mother of
a teenage patient with a neurological condition, people learn from
and teach through legacy. Many
learn from others’ successes and
strive to “live [their] life like they
[elders] lived theirs.” However, legacy was also used to learn about what
not to do – from stories to historical
events and contexts. In other
words, legacy acted as an opportunity to avoid repeating history and
past mistakes, as described by a
mother of a patient with leukemia:
My dad had a difficult childhood and family history. Kind
of in one generation, he sort
of turned it all around and
was this phenomenal father
and husband… he kind of
changed his whole legacy that
was passed to him. His legacy
was able to be turned around
in one generation for the rest
of us.
In this sense, legacy was reported
as a time for growth and positive
change in the future – an opportunity to rise above a difficult childhood, overcome adversity, and
avoid parents’ mistakes.
According to another participant: “You don’t have to take what
64
your family gave you,” but instead
you can “enhance it, modify it and
make it better.” One father described legacy as an opportunity to
provide children with opportunities
they did not have growing up:
My legacy for him [patient] is
to accomplish what I couldn’t
in life. For him to go to college
and be all that he can be … It
[legacy] makes me feel good
because I know I will be able
to give him what I didn’t have
growing up. I will be able to
push him as far as he can go. I
want him to…become something in life and achieve
something.
Legacy was also defined by pushing children to accomplish things
and “helping them be happy and
strong in the process.” Cultivating
“patience, understanding, acceptance, and love of differently abled
people” were important lessons
to be learned from and taught to
others, both generationally and
through friends, communities, and
work. Thus, legacy was referred to as
a powerful tool that provided an
avenue for change and a teaching
model for the future.
Theme 4: A ‘good’ legacy can
be left in different ways. Legacy
was symbolic of “what you leave
behind for them [children],” which
can take various forms. One mother
said legacy was “what you stood for
and what you accomplished and
kind of what you want them [children] to stand for and accomplish
in their lifetime.” On the other
hand, some participants described
legacy as “the way [someone] was
remembered. Not necessarily while
they were alive but definitely after
they’ve passed away,” so they
stressed the importance of leaving a
‘good’ legacy for people to remember them by and for others to follow.
For some, leaving a ‘good’ legacy
was about building and purchasing
things, such as businesses and land,
to make a name for oneself for others to remember them by. For others, legacy was defined by one’s
behavior – doing good things,
doing right, and having good
morals. As described by another
mother of a pediatric cardiology
patient, “…when you leave something behind, an inheritance, that’s
always good. But what’s more
important is the character traits and
attitudes that you leave for them
and how to live their life.” In this
sense, legacy was something to
work towards with the intent of
“leaving the earth and the people
you know on earth better than it
was when you were there.” One
mother of a child with acute peritonitis shared an understanding of
legacy as:
What you leave behind when
you go… the life you lived, if
you lived a good life. People
are going to talk about that,
you know. If you did great
things, you donated to charities, or you did this to support
this group of people, or things
like that. That would be a legacy you leave behind. So trying
to leave the world a better
place than you came into it.
The definitions and expectations
of what encompassed a ‘good’ legacy were a product of one’s surroundings – experiences, stories,
communities, friendships, books,
news, or research. Although there
were various definitions of what a
good legacy meant, participants
were “hopeful that there’s some
good things to be left” and fostered
a personal hope that “I’ve done
some good, somewhere.”
Discussion
Health care experiences, especially those expected to, or likely to
result in, terminal illness or death
are significant sources of stress for
individual patients, their caregivers,
and the families that support them
(Doupnik et al., 2017). Not only can
these events engender immediate
coping challenges and threats to
psychosocial wellbeing, but if
unrecognized and unaddressed, persistent distress can impair psychological health and functioning
throughout the lifespan (Price et al.,
2016). Thus, CCLSs and other
health care professionals frequently
offer legacy-oriented interventions
PEDIATRIC NURSING/March-April 2022/Vol. 48/No. 2
to help patients and families make
meaning of their experiences and
promote the adaptive coping efforts
that characterize resilience (Boles,
Fraser et al., 2020). However, the
forms, features, and functions of
legacy that underlie these practices
have not yet been systematically
addressed, rendering the concept of
legacy itself an untouched undertaking from the perspective of parent/caregiver stakeholders. Therefore, this study explored the legacy
perceptions of parents/caregivers of
hospitalized pediatric patients to
help professional design interventions that are truly family-centered
and evidence-informed.
Using a phenomenological qualitative design (Moustakas, 1994)
and inductive categorizing analysis
as per Boles and colleagues (2017),
this study revealed that parents/
caregivers of hospitalized children
describe legacy as 1) a transgenerational process; 2) actions, accomplishments, and experiences for
which one is remembered; 3) a
powerful tool that can be used for
education and change; and 4) a
‘good’ legacy can be left in different
ways. Some of these understandings
closely mirror what has been
described in previous work regarding perceptions of the concept of
legacy and legacy-oriented interventions in adult and geriatric
health care, as described by Scarton
and colleagues (2018), Franklin and
Cheung (2017), and Allen and colleagues (2008). However, some key
differences emerged, reinforcing the
need for additional education about
and interventional research on legacy-oriented needs and interventions for hospitalized children and
their families.
Legacy as a Transgenerational
Process
Parent/caregiver descriptions of
legacy as a transgenerational process echo previous research defining
legacy as the transmission of one’s
self across generations (Hunter,
2008). However, participants in this
study especially emphasized the
contributions of their child’s illness
or hospitalization to their beliefs
about legacy. Rather than remaining focused on legacy as remnants
of the past, parents/caregivers
acknowledged the impact of the
present hospitalization on their perceptions of their child’s legacy as
well as their own.
Health care providers, when serving parents/caregivers of hospitalized children, should acknowledge
multiple generations of legacy as a
contextual factor in a family’s experiences, communication, and decision-making. It is important to
understand the values and preferences parents/caregivers relay in
their child’s care may be related to
not only their own experiences in
the present, but also those of the
people before them that were central to their development. Given
this cross-generational and multitemporal feature of legacy, it is
essential for health care providers to
allow parents/caregivers to involve
multi-level familial supports and
perspectives in their child’s health
care experience. Whether inquiring
about a family’s preferences or
designing hospital visitation policies, health care staff should prioritize opportunities for parents,
grandparents, and other generations of caregivers to provide the
invaluable psychosocial support
that pediatric patients and family
members need when hospitalized.
Representation of One’s
Actions, Experiences, Effects,
and Accomplishments
Operationalized as “legacy-building” activities or enacted as “dignity
therapy” or “life-review” protocols,
the concept of legacy has been
diversely applied to health care,
especially for those patients and
families anticipating loss or
approaching the end of life. Like
previous reports with terminally ill
adult patients (Allen et al., 2008;
Hunter, 2008), participants in this
study ascribed both tangible and
intangible qualities to legacy, from
genetic and monetary inheritances
to social roles, character traits, values, and perceived impacts on others. Notably different in this study
population was the proportion of
intangible descriptions to those
that involved physical items; parents/caregivers in this study more
frequently reported and emphasized one’s actions, beliefs, relationships, and personal experiences,
PEDIATRIC NURSING/March-April 2022/Vol. 48/No. 2
describing these as more important
than physical assets or artifacts.
This focus on the intangible
components of legacy starkly contrasts with current legacy-oriented
intervention practices in children’s
hospitals, as described by Foster and
colleagues (2012), as well as those
employed in adult health care settings (Allen et al., 2008; Riegel et al.,
2019; Scarton et al., 2018). As the
2012 study by Foster and colleagues
highlights, most children’s hospitals provide standardized, tangible,
legacy-making activities or items,
such as painted handprints, plaster
hand-molds, or collections of the
child’s hospital belongings – primarily offered at the end of a child’s
life. However, because longitudinal
research about the impact of these
interventions is currently limited, it
is possible these items do not sufficiently embrace the immaterial
aspects of legacy that parents/caregivers of hospitalized children
appear to prioritize.
Additionally, the study by Foster
and colleagues (2012) revealed that
most children’s hospitals offer these
legacy-making activities at certain
intervals, namely when cure is no
longer being sought, at the time of
death, or after time of death.
Similarly, in adult care, the majority
of legacy-oriented interventions are
offered to older adults or those with
terminal illness in anticipation of
the end of life (Allen et al., 2008;
Chochinov et al., 2005; Naik et al.,
2016; Piderman et al., 2017). Not
only does providing interventions
in this way associate the concept of
legacy with death in a way that
directly contradicts the perceptions
of participants in this study, but this
limited schedule of support also
depersonalizes and limits what
these interventions can convey
about the unique relationships and
experiences of a child’s life. It is
imperative, then, that CCLSs and
other health care providers assist
families in recognizing and describing the intangible components of
their child’s legacy, regardless of
expected illness outcome, throughout the child’s hospital experience.
Encouraging families to engage
in favorite activities, memory-making opportunities, and collaborative
experiences can be done by CCLSs
65
at any point in a child’s care trajectory. Partnering with CCLSs, social
workers, creative arts therapists,
hospital activity coordinators, and
nursing staff can help families
access memorable opportunities to
play, connect, and build legacy with
one another throughout their care
experience. Acknowledging developmental milestones by recreating
important routines and rituals,
interacting with special events or
visitors, or helping families connect
with wish-granting or other nonprofit organizations are all ways to
help families create unique experiences and build memories together.
In addition, engaging in individualized discussions or activities – rather
than relying on standardized legacy
practices – can help children and
families strengthen their relationships, honor their history, anticipate their future, and support their
coping efforts in the face of medical
stress (Boles, Fraser et al., 2020).
Educational Value of a Legacy
Unlike previous research with
adult patient populations, parents/
caregivers of hospitalized children
in this study focused on the educational value of legacy, frequently
describing lessons they felt they had
learned from their child’s illness or
injury. Witnessing their child in
this environment seemed to serve
as an inspiration to live life with
renewed perspective, work hard for
their family, and strive to succeed as
a parent and individual. Additionally, parents/caregivers in this
study expressed perceptions of legacy as an avenue for change, sharing
that they intentionally selected
aspects of their own experiences
and those of the family members
before them to mimic, discard, or
transform while raising and supporting their children.
Honoring family relationships by
aligning hospital practices and services with the tenets of patient- and
family-centered care (Institute for
Patient-and-Family-Centered Care,
2017), CCLSs create opportunities
for improved assessment of a child
and family’s health care needs,
which also includes their current
legacy-oriented needs and preferences. By taking the time to learn
about family histories and motiva66
tions, and the ways in which families apply these sentiments to their
child’s treatment trajectory, CCLSs
and other multidisciplinary health
care providers can better meet
patients and families “where they
are” in their hospitalization experience (The Beryl Institute, 2019).
Thus, it is essential for health care
providers to support families as
they share, reject, or change their
legacies during their child’s inpatient hospitalization.
Leaving a ‘Good’ Legacy
Many participants reflected on
the importance of leaving a ‘good’
legacy for people to remember
them by and for their children to
learn from or emulate. Like previous research, parent/caregivers in
this study shared that regardless of
the medium or intentionality of
one’s legacy, they believe everyone
wants to leave a meaningful legacy
(Boles, 2014). For the parents/caregivers in this study, many aspects of
a ‘good’ legacy were related to how
each participant interpreted the
meaning of being a ‘good’ parent. A
good legacy would, as they reported, pass along values and ideals
associated with positive aspects of
their parental identity, which is
consistent with previous research
(Hunter, 2008; Naik et al., 2016;
Schellinger, 2018).
In response to this finding,
CCLSs and other health care
providers should help parents/caregivers identify ways they can safely
and effectively be involved in their
hospitalized child’s care, whether
the child is alert and playful or intubated and sedated. Whether they
connect with their child through
play activities, reading books, massaging hands and feet, or bringing
comfort items from home, parents/caregivers need opportunities
to enact their parent role in a time
when it is challenged by the limitations of illness or injury. Additionally, as in other social service
contexts, health care is optimized
when it is provided in accordance
with patient and family preferences
and experiences; thus, it is possible
parents/caregivers will not only
draw upon their legacy experiences
in making health care decisions, but
the legacy of these decisions may be
a weighty factor in their considerations. Therefore, it is important for
providers to recognize legacy as a
medium for facilitating parent-child
connection, involvement in the
child’s care, and promoting parent/caregiver and patient engagement in their health care experiences.
Toward a Standardized
Definition
Overall, parents/caregivers described their perceptions of the concept of legacy as transgenerational –
something passed to, from, and
across families. Stories, possessions,
values, and assets were all ways in
which legacy could be passed
through and across generations
overtime. As such, it appears that
legacy, for this population aligns
with Boles and Jones’ (2021) definition of legacy as “as an enduring
representation of the self—its qualities, experiences, effects, and relationships—built and bestowed
across generations. Whether concrete or intangible, intentional, or
serendipitous, legacies are avenues
of connection, education, inspiration, or transformation” (p. 19)
Grounded in the words and experiences of parents/caregivers of hospitalized children, articulating legacy
across these dimensions provide a
variety of perspectives and elements
for clinical application and research.
When legacy is understood in
this way, many new possibilities
emerge for capturing and integrating a family’s unique history, stories, strengths, and experiences,
whether during a child’s hospitalization or other health care contexts, such as clinics, emergency
departments, or home-based health
and hospice care. Thus, CCLSs and
other medical and psychosocial care
providers should assess, recognize,
and involve parent/caregivers’
experiences with and understandings of legacy into legacy-oriented
interventions or activities, as well as
other aspects of care related to
patient and family coping and functioning. Future research should
investigate how hospitalized children, non-parental family members, and health care providers
define the concept of legacy to
PEDIATRIC NURSING/March-April 2022/Vol. 48/No. 2
assess for similarities and differences that may impact medical and
psychosocial care activities or
approaches. Additionally, further
research should focus on the child
and family’s experiences with and
the outcomes associated with legacy interventions or activities during
a child’s hospitalization.
Limitations and Conclusion
This was a single-site study,
which might limit the transferability of findings, especially given the
cultural and individual variables
that appear to shape the legacy perceptions of parents/caregivers. Further, the study sample was limited
to English-speaking participants
due to the composition and
resources of the research team;
given that language is a culturally
laden phenomenon, it is possible
that the term ‘legacy’ may not
transfer across languages and cultural traditions, therefore limiting
the scope of this study’s results.
More work is needed to expand
cross-cultural definitions of legacy
according to caregivers of hospitalized children to inform best practices across health care settings.
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