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CHILD LIFE SPECIALISTS’ USE OF BIBLIOTHERAPY WITH GRIEVING CHILDREN:
HOW BOOKS CAN BE USED TO AID EMOTIONAL EXPRESSION, MEANING-MAKING
AND HEALING
Thesis
Submitted in Partial Fulfillment
of the Requirements for the
Degree of
Masters of Arts in Early Childhood Education
Child Life in Hospitals
Mills College
Spring 2015
By
Hania Thomas-Adams
Thesis Advisors:
_________________________
Priya Shimpi, Ph.D.
Associate Professor of Education
_________________________ _________________________
Linda Perez, Ph.D. David Donahue, Ph. D.
Professor of Education Associate Provost
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Abstract
Bibliotherapy, or the use of words and literature for therapeutic purposes, has been theorized and
empirically suggested to aid in emotional expression, positive coping, meaning-making, and
healing. This qualitative study examined the practice of bibliotherapy as a healing modality for
grieving children. More specifically, this study aimed to capture the experiences and opinions of
Child Life Specialists who utilize bibliotherapy in their work with grieving children in the
hospital setting. Experiences of grief and loss have the potential to cause lasting iatrogenic
effects on children, especially if a child is unable to understand, process, and share his or her
emotions, questions and thoughts. In addition, modern theories of grief posit that the grieving
process may be complicated by an inability to make sense or create meaning out of the
experience. This study examined the benefits of bibliotherapy as a means of aiding emotional
expression and scaffolding the meaning-making process of grieving children, as well as the role
of Child Life Specialists as facilitators in this process. Analysis of in-depth narrative interviews
with three Child Life Specialists revealed that bibliotherapy can be a valuable intervention in
addressing many of the fundamental needs of grieving children, and that Child Life Specialists
are uniquely qualified facilitators of bibliotherapy.
Keywords: Bibliotherapy, childhood grief, child life, grief process, meaning-making
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Acknowledgements
For my parents, who gave me so many stories.
For my siblings, for whom I have more love and pride than there are words for.
And for Kristin.
As for narratives, it turns out there are ten.
Thank you, love.
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Table of Contents
Theoretical Framework………………………………………………………………...5
Literature Review……………………………………………………………………....8
Grief Theories………………………………………………………………….....9
Childhood Grief…………………………………………………………………..11
Meaning Making and Narrative Construction…………………………………....14
Bibliotherapy in Theory and Practice…………………………………………….16
Facilitating Effective Bibliotherapy………………………………………………21
Bibliotherapy in the Hospital Setting: The Role of Child Life. ………………….37
Methods, Procedures, and Data Analysis………………………………………………29
Reliability and Validity………………………………………………………………...30
Results ………………………………………………………………………………… 31
Discussion……………………………………………………………………………...51
Conclusion……………………………………………………………….…………….57
References……………………………………………………………………………..60
Appendices…………………………………………………………………………….63
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Child Life Specialists’ Use of Bibliotherapy with Grieving Children: How Books Can Be Used
to Aid Emotional Expression, Meaning-Making and Healing
Theoretical Framework
So much of human experience involves a story; the stories we hear, the stories we tell,
and the narratives we use to structure any given situation make an immense difference in how we
experience our lives. We learn through stories, a tendency made salient by the millennia-old
traditions of fables, fairy tales, and tales passed down through generations. The way we structure
our memories and envision our future depends strongly on the roles we give ourselves within
those narratives.
For adults, much of our storytelling and internal dialogue takes place in our heads or on
paper. Our cognitive capacities allow us to envision hypothetical endings and alternative courses
of action, ponder possibilities, and name our emotions and feelings. Children, on the other hand,
often need help doing these things. Their concrete cognition, incomplete vocabulary, and limited
capacity for reason make these higher level thinking patterns, and the benefits that come from
them, more difficult (Berg-Cross & Berg-Cross, 1976; Bernstein, 1977). For children, the stories
and narratives of their everyday lives are carried out and expressed in alternative ways such as
play. Children use play to express emotions, imagine alternatives, communicate and seek
alliance with others, and release tension (Bernstein, 1977; Thompson, 2009). Play becomes an
outward expression of an internal narrative. It is how children tell their own stories and the
stories around them.
Bibliotherapy, or the use of words and literature for therapeutic purposes, is another form
of alternative expression that has been used by nearly every helping profession to address a wide
range of populations and conditions (Jack & Ronan, 2008). When facing difficult situations,
7
children and adults alike may struggle to cope, find the words to express their feelings, and make
sense of their experiences. Books and stories have been found to help in this process of meaning-
making and healing, especially when read within the context of a supportive therapeutic
relationship (Berg-Cross & Berg-Cross, 1976; Cohen, 1988; Heath, Sheen, Leavy, Young &
Money, 2005; Jack & Ronan, 2008; Oppenheimer, 2011).
The benefits of bibliotherapy can easily be applied to children in the hospital setting, and
more specifically those who have experienced loss. Grieving children frequently face situations
that are scary, unknown, and out of their control. They struggle to make sense of what is
happening to them and may be unable to understand why their lives have been so resoundingly
disrupted. They may feel isolated and alone, and have difficulty expressing their fears and
worries (Bernstein, 1977; Briggs & Pehrsson, 2008; Gillies & Neimeyer, 2006; Oppenheimer,
2011). The founding beliefs of the Child Life profession are based upon a commitment to help
children in hospitals regain their agency and sense of self, find autonomy and safety, and give
voice to their inner thoughts (Thompson, 2009), and bibliotherapy is one therapeutic method
through which these goals can be met. The natural inclination of children and adolescents to
identify with the characters in stories gives bibliotherapy the potential to help normalize and
validate the experience of grief while providing models of coping and resilience (Amer, 1999;
Oppenheimer, 2011). Especially during difficult times, reading with children can open up a
conversation and lead to further disclosure and emotional release (Amer, 1999). In addition,
well-selected books can encourage self-efficacy, reduce loneliness and shame, explore coping
strategies, and validate feelings (Hasty, 2010.)
Though the history of bibliotherapy as a practice is a long one, the research specifically
pertaining to its efficacy when used with grieving children is not extensive. Much of the research
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on bibliotherapy is based on studies using adult participants and non-fiction literature (Jack &
Ronan, 2008; Nickerson, 1975; Berg-Cross & Berg-Cross, 1976; McKenna, Hevey & Martin,
2010). However, the limited studies that do exist suggest that bibliotherapy can be an effective
and healing experience for grieving children (Amer, 1999; Delisle & Woods, 1977; Nickerson,
1975; Oppenheimer, 2011). Despite the empirical support for its efficacy, there is virtually no
research pertaining to the use of bibliotherapy by Child Life Specialists in the hospital setting.
Considering that Child Life Specialists frequently work with children during times of stress and
loss, the potential for utilizing bibliotherapy is high and the need for research pertaining to this
specific population is apparent.
The current qualitative study consisted of semi-structured interviews with Child Life
Specialists who self-identified as having experience using bibliotherapy with grieving children.
This study aimed to capture more fully the ways in which books can be used to help children find
the right words for a topic that even adults struggle to talk about, and the ways in which
identifying with characters can help grieving children make meaning out of their experience and
feel less alone. Child Life Specialists were hypothesized to be uniquely capable facilitators of the
bibliotherapeutic process due to their extensive knowledge of child development and their ability
to form personal and trusting relationships with children. In addition, this study explored the
possible connections between the mechanisms behind bibliotherapy and Vygotsky’s theory of
scaffolding, which involves providing just enough assistance to a child so that they can face or
master an experience that would otherwise be too difficult (Berk, 1994). This study explored
whether facilitated bibliotherapy is in part effective because it serves to scaffold emotional
expression and meaning-making following a loss.
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Literature Review
Grief is an immensely difficult experience for people of all ages, and both adults and
children may struggle to cope with and make meaning out of their circumstances in the wake of a
loss. Analysis of the literature suggests that facilitating emotional expression is an important
intervention for grieving individuals, but that this can be difficult when working with children,
who lack the emotional vocabulary and cognitive capacity to speak freely about their feelings
(Bernstein, 1997; Oppenheimer, 2011; Schreiner, 2012). It is therefore critical to find alternative
outlets to aid in children’s emotional expression and meaning-making, and bibliotherapy can
function as one such method (Jack & Ronan, 2008). Analysis of existent literature on
bibliotherapy provides general support for its efficacy across a wide range of populations and
situations (Amer, 1999; Berg-Cross & Berg-Cross, 1976; Cohen, 1988; Cohen, 1994; Jack &
Ronan, 2008; McKenna, Hevey & Martin, 2010; Nickerson, 1995). More specifically,
bibliotherapy has been found to decrease loneliness and isolation, expand perspective, enhance
insight, offer alternative courses of action, and aid in emotional expression for grieving
individuals (Berg-Cross & Berg-Cross, 1976; Bernstein, 1997; Oppenheimer, 2011).
This literature review will begin by discussing both the traditional and more current
theories on grief, the differences in the grief process between children and adults, and the
importance of meaning-making and narrative construction after a loss. Following that, an
overview of the existing literature pertaining to bibliotherapy will be presented, both in general
and as it pertains to grieving individuals. The importance of a trusted facilitator in this practice,
especially when working with children, will also be addressed. This literature review will
conclude by discussing the role of Child Life Specialists in the hospital setting, and present the
arguement that Child Life Specialists are in a unique position to effectively facilitate
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bibliotherapy with grieving children in a manner that allows for trust, understanding, emotional
expression and healing.
Grief Theories
An individual’s experience of grief may be influenced by his or her past experiences,
temperament, culture, and available support systems, as well as circumstances surrounding the
loss (Bernstein, 1977; Oppenheimer, 2011). Despite the fact that everyone is affected by loss at
some point in their lives, the complex, ongoing and personal nature of the grieving process
makes it difficult to operationalize and find words for. Traditional models of grief, primarily put
forth by Kubler-Ross, describe the process of grief as a progression through predictable and
linear stages, i.e. denial, anger, bargaining, depression and acceptance (Kubler-Ross, 1969;
Thompson, 2009). This model is now widely considered to be overly proscriptive in nature, in
the sense that the stages of grief are no longer thought of as linear or finite. Rather, grief is often
thought of as a highly individual process during which people may move in and out of the
various stages at different rates and sequences (Briggs & Pehrsson, 2008; Oppenheimer, 2011;
Schreiner, 2012).
In their 2008 review of bibliotherapy as a treatment for grief, Briggs & Pehrsson caution
that linear models of grief can be limiting and hierarchical, causing people to focus on grieving
“correctly” (p.33) rather than individually and naturally. What is considered acceptable grief in
Western culture is severely narrow; people are often rushed to get over their grief as quickly as
possible and there is little space for the free discussion of mourning and loss. The authors
reference the distinction between the traditional etic models of grief, which posit that there is
one, universal way of grieving, and the newer emic models, which recognize, encourage and
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forgive a wide range of individualized expression. They go on to claim that the etic lens is overly
restrictive, often leaving mourners feeling alone and isolated with their grief if it strays too far
from the prescribed course.
Alternative perspectives on grief include the non-linear, individualized model proposed
by Worden (1996), which focuses on the mastery of a series of tasks rather than progression
through stages. Those tasks are as follows: To understand and accept the reality of the loss; to
experience the emotional impact of the loss; to adjust to an environment in which the deceased is
absent; and to emotionally relocate the deceased (Schreiner, 2012). These tasks can be
accomplished in any order, returned to again and again, and are often revisited at each
developmental stage of a person’s life. Worden’s theory also stresses the importance of a
continuing bond with the deceased, though it must take an alternative form and may change over
time ( as cited in Schreiner, 2012). An additional perspective on the grieving process is put forth
by Neimeyer (2000, as cited in Briggs & Pehrsson, 2008), who argues that the primary goal of
grieving individuals is to relearn and reframe the world and themselves within the reality of the
loss. Modern perspectives on grief frequently refer to the therapeutic approach of making
meaning out of loss, in which clinicians identify how clients are interpreting their loss and help
them in a meaning reconstruction process (Briggs & Pehrsson, 2008). Rather than a progression
through externally prescribed stages, this approach focuses on the creation of an internal
narrative that serves as a structure for the individual’s meaning making process as they find ways
to cope and survive after a loss (Briggs & Pehrsson, 2008).
Most of the existing literature on grief theory, including the previously cited articles,
pertains to the grief of adults. The following section will specifically address the current
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perspectives regarding the grief of children, whose cognitive capacities and ways of interpreting
the world contribute to grief processes that are quite dissimilar from those of adults.
Childhood Grief
Though still highly individual, the grief responses of children are often distinct from
those of older teens and adults. Children who lose a loved one to death will experience many of
the same emotions and reactions as adults, but frequently lack a mature understanding of death
and/or the ability to express and verbally process their emotions (Bernstein, 1997; Oppenheimer,
2011; Schreiner, 2012). How children grieve and their understandings of death are directly
related to their developmental age and cognitive capacities. Children grieve and react to loss at
every age, but the embodiment and manifestation of this grief will look different depending on a
child’s developmental level, circumstances, and individual characteristics (Bernstein, 1997;
Schreiner, 2012). As children age and their cognition matures, so too do their understandings of
death (Schreiner, 2012). As a result, they require continuous and changing information and
emotional support from a person they trust.
Children also manifest grief differently and in irregular ways, often leading adults to
mistakenly assume that they are not grieving (Schreiner, 2012). Children’s sadness is different
from adults’ in the sense that it is often cyclical and unpredictable, at least in outward expression
(Schreiner, 2012; Thompson, 2009). Unlike adults, whose experiences of sadness and grief often
permeate all waking activity, children face and experience sadness in manageable doses
(Schreiner, 2012). A child may cry bitterly in one moment, ask endless questions the next, and
then engage in spirited and cheerful play. The sadness is not gone in the moments that they are
able to play and experience joy; they have merely set it aside for the time being.
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Children’s cognitive limitations also contribute to thier immature understanding of death,
which has a direct effect on the ways that they process and cope with grief. Unable to grasp the
finality of death, young children may test and retest the reality of the loss, asking again and again
where the deceased went or looking for them in predictable places (Bernstein, 1997). Mature
conceptualization of death often correlates with the development of concrete operational thought,
at which point the child comes to realize that death is irreversible, universal, and finite
(Schreiner, 2012). As children’s thinking matures and their understandings of death become
clearer, a loss must often be acknowledged, grieved and adjusted to again and again (Schreiner,
2012).
Ward-Wimmer & Napoli (2000) posit five questions that children hold as they move
through the grief process: 1.) What is dead? 2.) Did I cause it? 3.) Who will take care of me? 4.)
Am I going to die as well? and 5.) Who am I now that I have lost this person? Most children are
very curious about death, especially when one occurs in their family. They want to know what is
going on, and they look to adults as sources of this information. Children also look to adults as
the barometers of what is acceptable to talk about and acceptable to feel (Schreiner, 2012). As a
result, many children quickly learn that death is often considered a taboo subject in Western
society. Explanations that skirt the truth or rely heavily on euphemism, often used by well-
meaning adults who wish to spare children from the reality of difficult circumstances, may
confuse children further and add to their distress (Bernstein, 1977). Failing to talk about a death
or to allow space for children’s questions risks leaving them feeling isolated and alone with their
pain (Bernstein, 1997; Briggs & Pehrsson, 2008).
The cognitive egocentrism of young children frequently leads them to blame themselves
for what befalls them. Just as children in the hospital may see illness or injury as punishment for
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some wrongdoing, children who have lost a loved one to death may fear that the death was
caused by their own thoughts or passing fantasies (Bernstein, 1977; Thompson, 2008). Following
a death, children often fear that others will die too, especially their parents. They want to know
who will take care of them, and they need clear information and honest facts about what is going
on. When adults give words to grief and sadness, they also give children permission to feel and
talk about those emotions (Bernstein, 1977). Facilitating emotional expression has been
identified as a key intervention in grief work with children and is associated with improved
functioning (Kaufman & Kaufman, 2005).
Children’s developmental and emotional capacities are distinct from those of adults, and
thus the types of grief interventions that work for adults may not show the same efficacy for
children (Amer, 1999; Berg-Cross & Berg-Cross, 1976; Bernstein, 1977, Oppenheimer, 2011).
Traditional talk therapy is not generally the most effective intervention for children, whose
limited capacity for the abstract diminishes their ability to internally think things through and
verbalize intangible emotions (Schreiner, 2012). Many children are simply unable to talk openly
about difficult feelings, and require alternative methods of expression. A critical intervention in
helping children process grief is to help them express, name and understand their feelings
(Bernstein, 1977; Oppenheimer, 2011). To do so, verbal expression can be replaced with other
creative methods of communication, such as play, art, and stories. These methods also allow for
the creation of a safe psychological distance from which children may be better able to face
painful emotions and realities at a pace that feels comfortable for them (Bernstein, 1977;
Oppenheimer, 2011; Ward-Wimmer & Napoli, 2000).
In sum, research demonstrates that children have difficulty naming and discussing
difficult internal states and emotions, and require individualized and alternative methods in order
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to freely voice and work through these feelings. In addition to emotional expression, several
existing studies of adults and children also comment on the importance of meaning
reconstruction following a loss (Gillies & Neimeyer, 2006; Massey, 2000) , which will be
discussed further is subsequent sections of this literature review.
Meaning Making and Narrative Construction
Constructivist theories of grief focus on an individual’s efforts to find, create, or
reconstruct meaning after a loss. A cognitive and emotional search for meaning is common in
bereaved persons. Among the theoretical models of grief are perspectives such as that put forth
by Gillies & Neimeyer (2006), who claim that effective movement through grief must involve an
active process of meaning reconstruction. Central to this process is the reorganization of one’s
working models of reality after a loss. The loss of a loved one can shatter an individual’s senses
of safety and meaning, as well as their sense of trust in the world. This is especially pertinent in
cases where the bereaved is unable to make sense of the circumstances surrounding the death
(Gillies & Neimeyer, 2006). An inability to make meaning out of one’s experiences is at best
profoundly confusing and at worst a kind of psychic trauma (Tronick & Perry, in press) in which
an individual’s sense of reality and security is devastated. Given what is known about children’s
limited emotional vocabulary and understandings of death (Bernstein, 1977; Briggs & Pehrsson,
2008; Gillies & Neimeyer, 2006; Oppenheimer, 2011), it is crucial that professionals who work
with grieving children provide them with the support and expressive outlets they need in order to
make sense and reconstruct meaning out of a loss.
The cognitive lenses through which individuals filter their world and their experiences
have a great deal of influence on the success of their coping (Sapolsky, 2004). The following
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portion of this literature review will discuss the influence that appraisals and internal narratives
have on experience, as well as the importance of supporting children in their construction of
these narratives. According to stress coping theory, successful coping is made possible by a
process known as positive reappraisal, during which an individual is helped to cognitively
reframe a situation in order to see it differently (Gillies & Neimeyer, 2006; Sapolsky, 2004;
Thompson, 2009). Meaning is deeply embedded in the stories of our lives, and how we tell and
interpret these stories depends on our appraisals of ourselves and our circumstances. We are
continually writing and rewriting our own internal narratives, and these narratives in turn shape
our appraisals and experiences. Meaning reconstruction happens internally, but is also shaped
and influenced by life events and social influences (Gillies & Neimeyer, 2006; Sapolsky, 2004).
In his writings on human development and cognition, Lev Vygotsky identified language
as the fundamental tool for thought and the means through which all internal experiences are
represented (Berk, 1994). According to Vygotsky, we understand and create meaning out of our
experiences through words, and it is through words that adults transfer knowledge to children in
order to teach them about the world. Vygotsky claimed that language and other higher mental
functions originate as social functions, and this symbolic, external exchange between people
gradually shifts to become an internal process (Berk, 1994). As they grow and develop, children
gradually internalize the language of adults and use it to organize and make sense of their own
behavior, emotions, and experiences (Berk & Winsler, 2002).
Through this lens, one of the ways to help grieving children is to support their efforts to
reconstruct meaning following a loss in a way that allows for growth, safety and healing (Gillies
& Neimeyer, 2006; Massey, 2000). Adults can help children create an internal narrative within
the experience of grief by providing them with outlets for emotional expression, naming
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emotions, granting permission and a safe space for feelings, and giving words to difficult
concepts (Bernstein, 1977; Briggs & Pehrsson, 2008; Gillies & Neimeyer, 2006; Massey, 2000).
Language is deeply tied to experience (Berk 1994; Massey, 2000) and words are the foundations
of narrative and meaning. Trusted adults can play a role in scaffolding children’s narratives and
facilitating new meanings that allow for healing (Massey, 2000). The following section will
further expand on this process of scaffolding and constructing internal narratives, as well as the
ways in which adults can provide children with the language and support they need to do so.
Bibliotherapy in Theory and Practice
Bibliotherapy, the practice of using words and literature for therapeutic purposes (Briggs
& Pehrsson, 2008), has been around for thousands of years. Since the first language was created,
the natural human inclination to tell stories and learn from the experiences of others has led
people to create and pass down spoken and written material (Cohen, 1988). References to books
as healing modalities can be found as far back as Ancient Egypt, where an inscription over the
door of the library at Thebes read “healing place for the soul” (Jack & Ronan, 2008). The earliest
record of prescribed reading dates from 1272, when books were used for therapeutic purposes in
mental facilities (Jack & Ronan, 2008). In 1916, Samuel Crothers wrote the first article about the
bibliotherapeutic process, thus coining the term bibliotherapy (Briggs & Pehrsson, 2008). Until
the mid-20th century, the practice primarily took the form of a stand-alone, inexpensive treatment
for psychiatric patients that was generally recognized as worthwhile but had little empirical or
theoretical backing (Jack & Ronan, 2008). During the First World War, the practice of offering
books to soldiers recovering from physical and psychiatric wounds became common, and it was
observed that these men “bore their hardships more easily by reason of reading matter that either
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diverted or nourished them in some mysterious way” (McDaniel, 1956 (p. 586), as cited in Jack
& Ronan, 2008).
The first suggestion of bibliotherapy as useful for children was in a 1936 article which
referenced the use of therapeutic reading for pediatric patients suffering from emotional and
behavioral difficulties (Jack & Ronan, 2008). At this time, bibliotherapy and books for children
in general were largely didactic in nature; they were meant to teach morality rather than offer a
pleasurable or healing experience (Jack & Ronan, 2008). Indeed, children’s fiction meant
primarily for enjoyment did not appear until the 1850s, and did not appear in references to
bibliotherapy until much later (Jack & Ronan, 2008).
In 1950, U.C. Berkeley researcher Caroline Shrodes proposed a theoretical
conceptualization of bibliotherapy that examined the practice through a psychoanalytic lens.
This model, which is still widely agreed upon in the literature, broke the benefits of therapeutic
reading in to three categories: Identification, Catharsis, and Insight (Berg-Cross & Berg-Cross,
1976). Identification is the process by which readers are able to identify with a character or
situation and see their own experiences reflected in the material. Through the natural human
inclination to identify with others, the loneliness and isolation that often accompanies hardships
is alleviated as the reader “comes to realize that someone really does know what he is
experiencing” (p. 36) (Berg-Cross & Berg-Cross, 1976). The identification process has been
repeatedly singled out as a critical component of bibliotherapy, and the basis from which further
benefits are dependent (Amer, 1999; Berg-Cross & Berg-Cross, 1976; Cohen, 1988; Cohen,
1994; Jack & Ronan, 2008; McKenna, Hevey & Martin, 2010; Nickerson, 1995).
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Identification with a character or situation then gives way to Catharsis, which is a safe
release of emotions or tension that can occur directly by way of the reading experience or
indirectly through the material (Pehrrson, 2006). According to Hasty (2010), through
identification with appropriately chosen characters and stories children can unblock emotions
and provide opportunity for children to recognize and understand themselves. Bibliotherapy also
creates psychological distance from the actual issues at hand, allowing children to face difficult
or scary concepts from a position of agency and in a manner that feels more secure (Berg-Cross
& Berg-Cross, 1976; Bernstein, 1977). Massey (2000) argues that children often chose to listen
to or read books that are one step removed from their direct experience but which honestly and
safely reflect their reality and evoke similar emotions. In this way, “reality is not avoided, it
simply is filtered through safety lenses” (480). There is a great deal of safety, gentleness and
possibility in metaphor. In the right metaphor, there is also immense power and courage.
The final component of Shrode’s psychodynamic model of bibliotherapy is Insight,
which is the understanding that one’s own problems can be survived or overcome by working
through these problems vicariously through literary characters (Pehrrson, 2006). Discussions
with children about a character’s actions or emotions can lead to an exploration of alternative
coping strategies or actions, which a child may even offer spontaneously. In this way, books
provide opportunities for vicarious learning and mastery.
Shrodes’ psychoanalytic model is still widely accepted by researchers and others
interested in bibliotherapy, though some have expanded and elaborated on the details. In a 2005
article, Heath et al. added involvement as the primary stage of the process, during which a child
becomes interested and invested in the story at hand. Bibliotherapy is considered effective when
it engages the child’s attention and emotions in a manner sufficient to allow for identification
20
with the characters (Heath et al., 2005). The reader then progresses through Shrodes’s stages of
Identification, Catharsis, and Insight, and finally reaches the additional stage of Universalism,
which is characterized by these authors as the understanding that one’s problems can be and
often are understood and shared by others (Heath et al., 2005). This broader perspective and
deepened understanding of Shrodes’s theory lessens the feelings of isolation and loneliness
common to those who are struggling.
There is currently less than a wealth of research on bibliotherapy as a general practice,
and even less that is specific to use in hospitals. The research that does exist has varied
methodology (Amer, 1999) and is largely focused on non-fiction bibliotherapy, primarily the use
of self-help books for adults (McKenna, Hevey & Martin, 2010). In contrast, fictional
bibliotherapy is defined as a dynamic process in which the material is interpreted within the
context of the reader’s experiences and situation, and in turn can generate internal change in the
reader (McKenna, Hevey & Martin, 2010). Empirical studies of bibliotherapy, including
randomized control trials (Briggs & Pehrsonn, 2008), focus group studies (Amer, 1999; Cohen,
1994) and meta-analyses as well as qualitative methodologies (McKenna, Hevey & Martin,
2010) have largely supported the effectiveness of this practice for a wide range of populations
and conditions.
In their 2010 qualitative study, McKenna, Hevey and Martin used a semi-structured
interview approach to gain insight in to the perspectives of adult bibliotherapy clients as well as
their referring clinicians. While the majority of previous bibliotherapy studies had focused on
outcome and effectiveness in terms of amelioration of negative symptoms and behaviors, these
researchers were interested in the personal opinions of the people utilizing this form of therapy.
Themes that emerged from their work indicated that the vast majority of the adult participants
21
viewed bibliotherapy in a positive light and reported having benefitted from its use. These clients
were especially likely to report having benefitted from their therapeutic reading experience if
they were able to identify with the characters and situations in the chosen material, a finding
which has been repeatedly indicated in the literature (Amer, 1999; Berg-Cross & Berg-Cross,
1976; Briggs & Perhsson, 2008; Cohen, 1994; Delisle & Woods, 1977). This identification and
recognition of their own situations in the material allowed participants to see their experiences
from a different perspective, realize they were not alone with their emotions, feel less isolated,
and consider alternative courses of action to manage distress (McKenna, Hevey & Martin, 2010).
Another major theme that emerged from these interviews was a sense of empowerment and
control that participants reported having derived from the reading process. This empowerment
was reported to aid in the participants’ sense of responsibility and capability, and was directly
linked with a lower instance of medication use (McKenna, Hevey & Martin, 2010).
In another study of adult clients, Cohen (1994) interviewed eight adults about their
experiences with self-selected therapeutic reading. Participants were recruited through fliers
placed in a local library, which asked for people who had used literature by their own free will to
help them cope during a difficult time. The type of book used was purposefully left unspecified,
resulting in a wide variety of reported genres. Participants reported that they had found reading
to be beneficial on an emotional level as well as a means of information gathering and increased
understanding. Participants identified not feeling alone with their difficulties and having their
emotions validated as highly important aspects of therapeutic reading (Cohen, 1994). Reading as
a means of escape from reality was another reported theme. A critical element underlying the
effectiveness of bibliotherapy was the client’s ability to identify with the material, a process the
author labeled as recognition of self (Cohen, 1994). The author suggested that there is an
22
immense benefit for the reader in this identification, and that “Reading helped them to believe
that their life experience and responses to it were in some way acceptable” (42).
In summary, the existing research suggests that bibliotherapy can be an effective and
healing tool to help individuals express emotion, feel less isolated, and explore alternative
thinking patterns and courses of action during difficult times. This research is largely focused on
adults, who have the cognitive capacities to infer personal meaning from material and consider
abstract information. There is far less research pertaining to children, whose cognitive limitations
make abstract thinking and inference of meaning more difficult. The following section of this
literature review will discuss the role of an adult facilitator in effective bibliotherapy for
children, as well as the ways in which a facilitator can support children’s “efforts to create
meaning in the world” (Anderson, 1988, p. 19) within the context of a therapeutic relationship.
Facilitating Effective Bibliotherapy
The role of the facilitator is what distinguishes bibliotherapy from therapeutic, self-help,
or prescribed reading, and is considered by many scholars in the field to be pivotal to the healing
process and defining of the practice (Berg-Cross & Berg-Cross, 1976; Cohen, 1988; Heath,
Sheen, Leavy, Young & Money, 2005; Jack & Ronan, 2008; Oppenheimer, 2011). In their 2005
review of bibliotherapy, Heath and colleagues define the facilitator as a supportive guide who is
able to turn the reading experience in to an interactive one. This allows for pauses, reflection,
questions, and any emotions that might come up throughout the process. Rather than just
providing a story, the facilitator enters into a dyadic experience with clients and sees them
through to the end, allowing for assessment and support of any corresponding emotions, insights,
or questions (Heath et al., 2005).
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The facilitator as a distinctive feature of bibliotherapy is also emphasized by Jack &
Ronan (2008). In their analysis of literature on the topic, these researchers point out that although
definitions of what constitutes bibliotherapy vary somewhat within the literature, the role of the
facilitator is nearly universally included (Jack & Ronan, 2008). Simply providing a book for a
client does not constitute bibliotherapy; it is the reading with, rather than the reading to, that
defines bibliotherapy as a practice. Other commonly agreed upon themes described in their
analysis of the literature included the importance of post-reading discussion, the importance of
being well-versed in the material prior to reading it with a client, and the necessity of a highly
purposeful and attuned approach from the facilitator (Jack & Ronan, 2008).
In their early writings on the topic, Berg-Cross & Berg-Cross (1976) identify the book
itself as a springboard for discussion, and the role of a facilitator as essential for helping the
client identify with the characters and gain insight from the material. These authors, and others,
also emphasize the critical nature of trust in any therapeutic relationship and claim that reading
with a client can augment their sense of trust and safety with the facilitator (Berg-Cross & Berg-
Cross, 1976; Cohen, 1988; Jack & Ronan, 2008; McKenna, Hevey & Martin, 2010;
Oppenheimer, 2011). The reading of the book is in itself a shared and intimate experience, and a
client can be helped to feel respected and acknowledged by a facilitator who chooses a book
relevant to their experience. If clients are then able to identify and gain insight from the provided
material, they may feel an increased belief that a facilitator understands their experiences. This
strengthens the therapeutic relationship and allows clients to feel seen and heard, and thus
legitimizes their emotional experienes (Berg-Cross & Berg-Cross, 1976).
In their 2010 narrative study of the role of the facilitator during bibliotherapy with adult
clients, McKenna, Hevey & Martin assigned half of their participants to read a therapeutic book
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independently, while the other half read one as an adjunct to therapy. Both approaches were
found to be beneficial, especially if they allowed participants to identify with the literature and
gain insight in to their own lives. Making connections from the material to their own lives
enabled participants to recognize their experiences and hardships from a different perspective,
realize they were not alone in their experiences, feel less isolated, and consider alternative
courses of action to manage distress (McKenna, Hevey & Martin, 2010). However, nearly all of
the participants who read the book within the context of therapy indicated that a positive
relationship with the professional was a critical part of the process, and that the role of this
facilitator was valuable.
Whereas adults are often able to make abstract connections to material and recognize the
ways in which these themes apply to their own lives, this process of identification and insight is
much more challenging for children, especially when dealing with difficult or emotionally
charged material (Berg-Cross & Berg-Cross, 1976; Bernstein, 1977; Oppenheimer, 2011;
Schreiner, 2012). It is in these instances that the role of the facilitator moves from a useful
addition to a critical component and a necessity for healing and growth. As previously surmised,
there is general agreement in the literature that an important mechanism of effective
bibliotherapy is the reader’s ability to recognize the self or the situation reflected in the material
(Amer, 1999; Berg-Cross & Berg-Cross, 1976; Cohen, 1988; Cohen, 1994; Jack & Ronan, 2008;
McKenna, Hevey & Martin, 2010; Nickerson, 1995). This recognition and percolation of the
abstract is more difficult for young children whose cognition is very concrete. A sensitive adult
facilitator can be very supportive in helping children recognize and build upon these inferences.
The role of this facilitator is important for multiple reasons, among them the facilitator’s
ability to select sensitive and appropriate reading material. Within the context of a trusting
25
relationship, the right books can allow for recognition of self, gently encourage courses of action,
and ameliorate feelings of loneliness and isolation. When used appropriately, books can also
provide factual and emotional information on a topic that can serve a preventative function, a
preparational function, and a coping function for children (Berg-Cross & Berg-Cross, 1976). The
process of selecting a book to read with a child requires experience, emotional sensitivity,
knowledge of the child’s developmental and emotional capabilities, and an understanding of the
child as a human being (Berg-Cross & Berg-Cross, 1976; Bernstein, 1977; Cohen, 1988; Knoth,
2006; Oppenheimer, 2011). Books are not interchangeable, and not every book is suitable for
every child (Bernstein, 1977).
As previously noted, the ability of the reader to identify with the material is a critical
aspect of effective bibliotherapy. Thus, selecting suitable material to which a reader can relate
requires the facilitator to have knowledge of the material and a personal relationship with the
individual. Delisle & Woods (1977) outline a protocol for screening books when reading with
grieving children. Their criteria evaluate the material in terms of its appropriateness for the
child’s emotional needs, intellectual needs, and social needs. According to these authors, books
should be comforting and accepting of individual grief processes (emotional needs), provide
accurate information about death and reactions to death in a developmentally appropriate fashion
(intellectual needs), and present death as a shared experience, stressing that the child is not alone
with their emotions (social needs). Practicing bibliotherapy with children requires a working
knowledge of the child’s personality and life circumstances, allowing the facilitator to
appropriately match the child with a book that will be meaningful to them (Delisle & Woods,
1977). Especially with children, one does not have to use an entire book to see a therapeutic
result. Often just a passage or page can make a powerful impact on the child’s experience and, in
26
keeping with the assimilative learning style of young children, can be returned to again and again
(Cohen, 1988).
In addition to the ability to select appropriate reading material, the facilitator also acts as
a sensitive guide and support system for the child’s emotions and thoughts. Reading and
discussing relevant books with children within the context of a trusted relationship can provide
them with the words, safety and coping techniques they need to begin making meaning out of
their experiences (Oppenheimer, 2011). In cases of grief and loss, a critical intervention in
helping children process grief is to help them express, name and understand their feelings
(Oppenheimer, 2011), and facilitating emotional expression with bereaved children has been
associated with improved functioning (Kaufman & Kaufman, 2005).
Many people struggle to find ways to cope following a loss, and even adults often have
difficulty expressing themselves freely. This is especially salient for children. As previously
discussed, the concrete thinking of young children often leaves them lacking in proficiency when
it comes to the language of emotion (Bernstein, 1977). Emotions are abstract and deeply
complicated; they cannot be held in the hands or seen with the eyes. They are hard to describe
and intensely personal experiences, which even the most eloquent adults often have difficulty
putting words to. Children need opportunities, permission and assistance in expressing their
emotions, and reading with a trusted adult can be a powerful way to begin healing and making
meaning out of their experiences.
As previously discussed, Vygotsky’s theory of cognition posits that language is the
fundamental tool for thought, and the means through which we create meaning out of experience.
Children develop the capacity for this higher level of thinking by internalizing the language
27
provided by adults (Berk & Winsler, 2002). In this way, language initially serves as a means of
communication between individuals and later as means of communication with the self, often for
regulatory purposes. By listening to a trusted adult’s words, children learn that there is language
and meaning attached to their emotions, and that language can also be used to manage these
emotional states (Berk & Winsler, 2002). As children develop, this overt dialogue becomes
internalized as private speech, which plays a major role in planning, understanding, and
evaluating behavior and situations (Siegel, 2012). This private speech is the internal dialogue
that shapes our experiences, and it is highly influenced by the early language of the trusted adults
around us. Private speech allows children to do for themselves what caregivers previously did for
them, taking internal control of the guiding role that was initially played by the caregiver (Berk,
1994).
Central to Vygotsky’s theory of learning and development is the concept of scaffolding,
the process by which adults provide children with just enough support and assistance to complete
tasks that they could not do on their own. Within the structure of the adult’s modeling and
guidance, the child’s abilities gradually increase and the adult correspondingly scales back their
level of assistance until the child is able to function independently (Berk & Winsler, 2002).
Scaffolding is traditionally thought of in terms of its role in early childhood education as a way
in which children acquire skills (Berk & Winsler, 2002).
Arguably, scaffolding can also be applied to the grief process. If adults can scaffold a
child’s process of learning how to tie their shoes, they can also scaffold the same child’s efforts
to make meaning and cope after a loss. Words and concepts provided by trusted adults via
bibliotherapy can serve as a scaffold for children’s inner world, providing them with the
assistance they need to begin to organize, name, and process their thoughts and emotions. In this
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way, much as Vygotsky professed, language can scaffold experience, meaning-making, and
internal narratives. As surmised, the role of the facilitator is a critical feature of effective
bibliotherapy, provided that the adult is able to select suitable reading material and serve as a
trusted support system for the child.
Bibliotherapy in the Hospital Setting: The Role of Child Life
The following section will build off of what is known about the importance of a trusted
facilitator in the bibliotherapeutic process, especially when working with children. Research has
demonstrated the importance of the facilitator having knowledge of the child, sensitivity to the
child’s specific situation, and the ability to form a trusting relationship within which the child
feels safe to identify, express and work through emotions (Berg-Cross & Berg-Cross, 1976;
Bernstein, 1977; Cohen, 1988; Knoth, 2006; Oppenheimer, 2011). For children who are grieving
in the hospital setting, a Child Life Specialist can be a fitting person to act as a facilitator. Child
Life Specialists have extensive knowledge and unique training in child development, grief
theory, coping styles, and the importance of emotional expression following a loss (Thompson,
2009). They are often already a trusted figure in the child’s life, and their adroit assessment skills
allow them to properly select books with which the child can identify. They also frequently have
established relationships with the child’s entire family and can help to strengthen the family’s
existing support systems and establish new ones.
Promoting positive parent/child relationships and family interactions, as well as
ameliorating the psychological distress of the caregiver have been shown to serve as protective
factors for bereaved children (Haine et al., 2008). Caregivers often struggle to find the right
words when talking with their children after a loss (Berg-Cross & Berg-Cross, 1976;
29
Oppenheimer, 2011). By providing caregivers with carefully selected books to read to their
children, or by modeling the interactive reading process, a Child Life Specialist can relieve some
of this distress. Books can also provide caregivers with suggestions and openings for discussion,
as well as the grounding experience of reading to their children. Since these books provide the
language that is so hard to come up independently, caregiver are thus relieved of this
responsibility and can focus on being present and supportive for the child. The intimacy of the
reading experience as well as the resulting discussions and emotional release can help foster the
bond between caregiver and child, which is among the most critical resilience factors for
bereaved children (Himebauch et al., 2008, as cited in Schreiner, 2012). Given their unique skill-
set, Child Life Specialists are thus in a prime position to advocate for the practice of
bibliotherapy in the hospital setting.
The current study is designed to build upon what is known about the importance of
emotional expression and narrative construction following a loss, as well as the therapeutic value
of bibliotherapy as a means of scaffolding this meaning-making process. The primary goal of
this qualitative study is to capture the experiences and opinions of Child Life Specialists who
currently utilize bibliotherapy in their professional practice. The purpose of this inquiry is to
expand upon the scarcity of literature pertaining to bibliotherapy for grieving children in the
hospital setting. In addition, this study is designed to explore how Child Life Specialists may
better use bibliotherapy in their work with grieving children, what the perceived benefits and
limits of this practice are, and how bibliotherapy fits in to the overall role and therapeutic goals
of a Child Life Specialist.
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Methods
Participants
Participants were three Child Life Specialists who self-identified as having experience
using bibliotherapy with grieving children. Participants were recruited via direct inquiry by
phone or email, word of mouth, and advertisement on the Child Life Forum. Eight potential
participants were directly contacted by the researcher, four responded, and one was deemed
ineligible because her use of bibliotherapy did not extend to grieving children. All three eligible
participants were female, two reside and work in California and the third in Florida. During the
recruitment and interview process, this study did not discriminate on the basis of age, sex,
gender, religion, or any other demographic category.
Procedures
This study was approved by the Institutional Review Board of Mills College on October
30th, 2014. All participants gave informed consent to be interviewed, and to be audio recorded
for purposes of transcription and quality control. Before beginning the interview, participants
were briefed on the study’s procedures and assured of confidentiality. Interviews were conducted
by the researcher at a location of the participant’s choosing or via telephone, and consisted of a
series of open-ended questions aimed at creating an in-depth portrait of participants’ experiences,
opinions and understandings of bibliotherapy within their Child Life practice. Questions were
carefully constructed using knowledge garnered from theories and existing literature pertaining
to child development, grief, and bibliotherapy. In keeping with the principles of qualitative
research, these questions were constructed with the intention of being neutral and open-ended
while still addressing the research goals and encouraging participants to share their stories. When
appropriate, open-ended prompts and follow up questions were asked in order to elicit more
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detail and clarification from participants. A list of guiding questions was utilized, though in
keeping with the narrative interview style of qualitative research, actual interviews were allowed
to progress in accordance with participant responses. The interviews ranged in length from 30 to
90 minutes. All recordings of interviews were stored in a secure location, and later transcribed.
Pseudonyms were used to protect participants’ identities.
Coding and Analysis
Transcripts were coded according to the protocol outlined by Auerbach and Silverstein
(2003). Following complete transcription, the text was analyzed and pieces of text deemed
relevant to the research concern were highlighted. Subsequently, the researcher identified
repeating ideas by reading through the master list of relevant text and grouping together ideas
that appeared to represent the same meaning. These repeating ideas were then arranged into
larger themes. In the final step of the coding process, themes were grouped together under
theoretical constructs, which integrated the qualitative data with principles from relevant
literature. The final theoretical narrative presented and analyzed these constructs while
integrating the findings with applicable quotes in the participants’ own words, with the goal of
using interview data and relevant literature to capture the participant’s experiences as accurately
as possible.
Reliability and Validity
In traditional, quantitative research, findings are deemed valid and reliable in accordance
to their objectivity, generalizability, and statistical consistency. When conducting qualitative
research, the aim is not to extract universal truths but rather to accurately capture experience. In
place of reliability, validity, and generalizability, qualitative research strives to produce accurate
32
and justifiable interpretations in which participants can recognize their experience and their
voices. In addition, the theoretical constructs formed in the process of qualitative analysis should
be transferable and relatable beyond the particular interview sample.
Auerbach & Silverstein (2003) outline transparency, communicability, and coherence as
goals of qualitative research that relate to validity and reliability. Interpretations and final
analyses are considered transparent if the researcher clearly outlines the process by which he or
she arrived at these conclusions. If findings are explained in a way that makes sense to other
researchers and the participants themselves, and if these findings can derive an organizing story
from the data, the findings are considered communicable and coherent. In the current study,
these goals were pursued through continual communication and sharing of progress within my
academic cohort, the careful formation of open-ended and neutral questions, and the use of pilot
trials and participant member checks. This study and the questions asked herein were not
previously tested and should be considered exploratory in nature.
Results
Following in-depth interviews with three Child Life Specialists, the coding and analysis
process revealed five overarching theoretical constructs relating to the participants’ work with
grieving children and their use of bibliotherapy as a healing modality. In the following section,
the major constructs and their respective themes will be discussed and supplemented with quotes.
In so doing, the intention is to provide an overview of the findings of this study while capturing
as fully as possible the narratives of the participants themselves. A simplified list of constructs
and related themes can be seen in Table 1 in the Appendix.
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Construct 1) “It’s Hard to Talk About Death. It’s Hard to Talk About Grief”
All participants spoke at length regarding the fact that death is a difficult topic for adults
and children alike. “I tend to believe,” said one participant, “that human beings in general, when
faced with talking about something hard, will do a lot of throwing up barriers or avoiding the
topic because it’s too close to home.” For children, the intrapersonal difficulties associated with
conceptualizing death were said to stem from both cognitive limitations (A. “For young kids, it’s
very very confusing and it’s very very scary”) and the predominant social context, in which death
is not often considered an acceptable conversation topic (E. “Children pick up on it in an
instant”). One Child Life Specialist (CLS) spoke of the incompatibility between the concrete
thinking of young children and the vastly abstract nature of death, saying “It’s so hard to
conceptualize. It’s intangible.” Another noted the intrapersonal difficulties that can arise due to
the egotistical thinking patterns of children. “Developmentally, young kids believe that they are
the cause of things,” said this CLS, “so if you are crying they think they are the cause or they are
the cause that their sibling died. So it’s so, so important to talk about these things in a way they
understand.” Children were described as “unable to find the words,” and further hampered by
their ability to pick up on social cues (B. Children have both awareness and confusion
surrounding what isn’t said). One CLS remarked, “Kids, they’ll take in the subtle information
but they don’t’ always know what that means. So they can be reluctant to talk about it and put it
out there.” Another participant added that children “learn not to talk about it.”
Participants speculated that this belief is perpetuated by the predominant social context,
within which death is considered a taboo subject. “In our culture, and in lots of cultures, in the
whole world almost, there’s very few cultures that it’s OK to talk to a child about death or where
it’s culturally sanctioned to emote or talk about hard topics like that,” noted one CLS. The
34
intersection of social messages and egotistical thinking was described by all participants as
particularly challenging for grieving children, with one CLS commenting that “Kids learn very
very young what’s appropriate and what’s not appropriate and what questions to ask and not to
ask, or that if I ask this question, Mommy cries and I don’t want her to cry so I just won’t ask
that question.”
Participants unanimously agreed that death is a hard topic for adults as well. The
difficulty that parents have when talking about death with their children was mentioned by all
participants (C. Death and loss are hard for parents to talk about) as was, notably, the perhaps
unexpected difficulty that Child Life Specialists themselves have with these conversations (D.
Death and loss are hard for CLS to talk about). One participant stated that parents often have
more difficulty with expression than their children do, saying “In the experience I’ve had, it’s not
so much difficult for kids to talk about these things. It’s difficult for the adults to talk about these
things.”
Though both adults and children were described as having difficulty talking about death,
divergent reasons for this difficulty were identified. As previously stated, children were said to
struggle with this topic due to cognitive limitations on their ability to conceptualize and verbalize
their thoughts, as well as their awareness of social cues around them. Adults were said to be
limited by their uncertainty of how to approach the topic with their children (“I could tell you
story upon story about parents’ anxiety when talking with their kids about death”), a desire to
protect their children (“They just don’t want to make their children sad, and they’re trying to
protect them as best they can”), and their own struggle with loss (“And of course, the parents are
grieving too. It’s hard”).
35
The vast and emotionally charged nature of death makes it understandably difficult to
talk about for Child Life Specialists as well, an all-too-often forgotten factor that was mentioned
by all participants. Though Child Life Specialists are frequently called upon to help families
cope with death, this is not an easy task, a sentiment echoed by one participant who said “It’s
hard to have to be the one to say those things…… Being able to have that conversation and hold
that kind of information and emotion I think is really hard.” Said another “Child Life would like
to think of our job as to prepare kids for things through teaching and education. And sometimes I
think when it comes to death we sort of become paralyzed, like “who am I to teach a child about
that?”” The third participant noted that this difficulty is not often directly looked at, saying “The
comfort that the specialist has with talking about death…..it’s an aspect that isn’t talked a lot
about in training. It’s hard to talk about.” Despite these difficulties, participants considered their
ability to comfortably talk to children about death to be extremely important because of how
perceptive children are (E. “Children pick up on it in an instant”). Said one participant “It
doesn’t matter if you have the best book, if you know exactly what to say or if you can answer a
specific question. If you aren’t comfortable talking about death the child will pick up on it.”
In sum, results reflected the notion that death and grief are universally hard topics to
conceptualize, verbalize, and openly discuss, and that this difficulty extends across age and
professional boundaries. As a result, both adults and children may be reluctant to have important
conversations during times of grief and can benefit from support in this area.
Construct 2) Grieving children need safety to express themselves and the tools to do so
All participants had extensive experience working with grieving children in the hospital
setting, including children who were losing/had lost a family member, children who were
36
themselves dying, and children who were going through other types of loss such as the loss of a
limb or their ability to see. Drawing upon these experiences, the participants identified several
common support systems that children (and their parents) need in order to optimally cope and
make sense of their experiences. These recurring themes included the need for
permission/validation of feelings and expression, the need for ritual and consistency, the need for
accurate and honest information, and the importance of realizing that they are not alone in their
grief. Each theme will be subsequently outlined.
As aforementioned, grieving children often have difficulty expressing themselves due to
inter and intra-personal challenges and limitations. When participants were asked to discuss the
specific needs of grieving children, among the most frequently mentioned forms of support were
emotional validation and permission to talk about feelings (F. Grieving children need permission
and validation to feel and express). Participants spoke of the non-linear emotional process that
grieving children often have (“It’s totally typical for kids to be crying one minute and playing the
next”) as well as the fear that their feelings are abnormal (“There’s this idea of what it is
supposed to look like or how you’re supposed to feel after losing a sibling”). Providing children
with a sense of validation about their feelings, “whatever they may be,” was identified by all
participants as a critical aspect of bereavement support. “I think they need, how can I say
this…… validation. That whatever emotion or experience they are having is OK” said one CLS.
Participants also spoke of the importance of supporting children’s emotional vocabulary, with
one participant saying “Being able to name those overwhelming feelings, it’s powerful for them.
It’s like “Oh, that’s what that is? Other people feel that?””
An additional theme that emerged across participants was the safety, understanding, and
meaning that grieving children gain from predictability and routine (G. Grieving children need
37
ritual and consistency). “It’s so important for kids to feel safe and feel consistently cared for in
order for them to start to be able to process and express and cope with a loss,” said one
participant. This consistency was discussed in several ways, including continuity of care (“They
need to know who will take care of them”), the role that ritual can play in children’s meaning-
making process (“A ritual is something that is infused with meaning and then repeated and
repeated…..and that can keep that connection with their sibling and continuing relationship”),
and the inherent need for repetition that characterizes children’s thinking processes (“When
children think about something, they ask questions over and over. They want to hear answers
over and over”). Rituals were also described as a means for grieving children to attain normalcy,
predictability, and control during an overwhelming and confusing time. Tying all these aspects
together was the importance of feeling safe, which one participant described beautifully when
she said “I think that’s probably my biggest goal, to create an opportunity, a safe place, a sense
of safety for them.”
A third theme within the construct of necessary supports for grieving children was the
need for openness and honesty from trusted adults (H. Grieving children need accurate and
honest information). Participants disagreed to some extent on whether or not to use euphemisms
(e.g. “passed away”) or direct language (e.g. “died” or “dead”) when talking about death, with
one CLS cautioning against using direct language before a child is ready to hear it and another
stressing that euphemisms are confusing and should be completely avoided. Using honest and
direct language was identified by two participants as a crucial way to aid children’s
understanding and expression, with one CLS stating “Being able to let them know that it’s OK to
say he died, or he’s dying, and using those words that are so hard to say but important for their
understanding is key.” Despite slight disagreements surrounding direct language, all participants
38
spoke of the fundamental importance of accurate and honest information presented in a way that
children can understand. “There has to be someone, and hopefully multiple people, who are
completely and age-appropriately honest with kids,” said one CLS. “All the time.”
Participants also spoke of the reluctance of some parents to talk honestly about death and
loss with their children, and noted that this reluctance often stems from a protective instinct as
well as an uncertainty about what to say. As previously stated, parents may also struggle to talk
about death and can benefit from support when bringing it up with their children. “Parents also
need permission to express, and the language to do so, and they need permission to be parents
again,” said one participant. Though children were said to benefit immensely from honest
information, participants in this study noted that the fear of bringing up such a charged topic
makes this challenging to carry out. Said one participant, “Children are afraid of upsetting their
parents and parents are afraid of upsetting their children, so nothing gets said.” However,
participants also pointed out that children are remarkably able to pick up on what isn’t said,
leaving them aware that something is going on but without the information needed to understand
and process it. “It’s difficult to put in to language” said one CLS, “how much kids perceive
death, grief, emotion and things of that nature”, even when they aren’t expressly told. As such,
providing grieving children with accurate information in a developmentally appropriate manner
was identified as a crucial means of support.
Finally, participants unanimously spoke about the importance of letting grieving children
know that they are not alone with their feelings or their experiences (I. Grieving children need
help realizing that they’re not alone). Being able to meet and talk with other children in similar
circumstances was described by participants as a powerful and healing intervention, and all three
participants identified summer camps and/or support groups as the ideal means of facilitating
39
this. Realizing that there are other people who feel the way that they do was said to help children
feel less isolated and more free to express themselves. “There’s that normalization piece,” said
one participant, “where it can help them understand what their experience was and then also
helps them compare to others as well. They can be able to see that everyone deals with loss and
that we deal with loss in a lot of different ways.” Another participant spoke of the challenges that
can result when children feel isolated in their grief, stating that “oftentimes when kids feel
isolated and like they are the only kid in the world who has had a parent die, they’re going to
kind of shut off. They’re not going to be as expressive, and that’s when you’re going to see the
internalization of emotion and pain and the behaviors, regression, things like that.” Knowing that
they are not alone was also tied in to the aforementioned theme of validation, and children were
said to be more able to cope with their emotions when these emotions are acknowledged and
normalized by others. The relief children feel upon learning that they are not alone was
powerfully captured in the following quote, in which a participant described the moment that a
child realized that another classmate had recently lost a family member to death: “And the look
on her face…..she just stared at this little girl after she raised her hand and she had this look of
shock. “Wow, I’m not the only one.””
All in all, participants in the current study identified five key methods of support that
grieving children need, as well as the benefits of each and the particular challenges in obtaining
them. In the following section, the topic of bibliotherapy will be introduced as an intervention
that, with proper facilitation and design, can benefit grieving children across each of these
needed supports.
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Construct 3) Bibliotherapy can serve many necessary functions for grieving children
Participants were considered eligible for the current study if they routinely utilized
bibliotherapy in their work. Participants were asked questions relating to their goals and
opinions of the practice, as well as when, how, and why they are likely to use it. Analysis of the
participant responses revealed several themes relating to the benefits and potential functions of
bibliotherapy for grieving children.
The first theme that emerged involved the power that stories can have in helping children
open up about their personal experiences and feelings (J. “And then they start talking”: The
story as a catalyst for discussion). Participants described how children will frequently share their
own experiences after being read a story that they can identify with, and how Child Life
Specialists can scaffold this process through open-ended questions and direct involvement of
children in the story. “In the end, (my goal) is just to really have it spark a conversation with
them, so they’re able to talk about everything, and ask them what they took away from that book
or that story that we just read and how they think that relates to what they’re going through,” said
one participant. Another addressed the “ice-breaker” effect that stories can have, noting “It can
be a good catalyst for getting around any barriers that they might be setting up and sometimes
it’s about leading in to harder topics. It can be a good conversation starter.” One CLS described
an experience in which she read a book about death to a classroom full of young children, stating
“I think that might have been the first time that those kids had the permission to talk about a
topic that they were very curious about. And after we read the story, we had a really interesting
discussion.”
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Participants identified the interactive element of bibliotherapy as an integral and defining
aspect of the practice, noting that while some children will begin talking on their own after
reading a story, others need prompting and support in the form of open-ended questions and
invitations from a facilitator. “I think it’s important to stop periodically and check in and ask
questions,” said one participant. “It’s so important to have that open communication when you’re
reading a book.” Participants also identified the emotional support that comes from reading a
book interactively, adding that this is crucial when the book contains potentially sensitive
material. Said one participant, “If you’re just going to bedsides and you’re just trying to
encourage age-appropriate play, it’s appropriate to just give a child a book. But if you’re talking
about sensitive topics that kids are going to have questions about, it’s so not appropriate to just
kind of hand the book over and say “Ok! Good luck!”” In sum, participants noted the power of
the story to serve as a catalyst for conversation, but also the importance of having a supportive
facilitator there to talk to.
As an additional note, some of the most detailed and rich responses given by participants
in the current study were elicited in response to interview questions beginning with the phrase
“Can you tell me a story about…..,” suggesting that discussing experiences in narrative form is
useful for both children and adults.
A second theme that emerged involved the capacity for bibliotherapy to provide grieving
children with the words they need to address difficult topics (K. Words can function as tools). As
previously stated, children may struggle to talk about death and grief due to limitations in their
cognitive understanding and emotional vocabulary. Death is an incredibly abstract topic which
can be difficult for even adults to put in to words, and bibliotherapy was described as one way of
introducing and explaining these complicated terms. “Being able to read books….. I think that
42
helps the kids find the words,” said one participant, while another noted the power of
bibliotherapy to “help people find the words to talk about the hard things that seem impossible to
talk about.” This theme was also connected to the earlier theme of permission and validation, in
the sense that “finding the words” pertains to having the cognitive knowledge of what to say but
also the emotional ability to express it. Participants spoke of the potential of bibliotherapy to
serve this function for children, but also for parents and the specialists themselves.
“(Bibliotherapy) can help parents have the tools for talking about it because so many parents
don’t want to talk about it…… it’s so big that they can’t imagine. They don’t know where to
start.” One participant noted how she herself benefits from the language in books, stating “Just
like I was saying earlier about parents, it gives me the tools to be able to talk about things that
are sometimes uncomfortable. As much as it is for the children and the parents, it’s also helpful
for me.”
As aforesaid, participants identified ritual and consistency as important means of helping
grieving children to feel safe. An additional theme that emerged in discussions of the benefits of
bibliotherapy involved the consistency and ritual that can be garnered from books (L. Books can
function as ritual). Both the book itself and the act of reading it were said to serve this ritualistic
function and aid in grieving children’s efforts to process and cope with the events in their lives.
One participant described reading the same book repeatedly with a young child, stating that “she
just asked to read it over and over and over……it was a ritual for her. Every time I met with her,
it was like “ok, where’s the book.” So for her, it was a part of her processing.” Participants noted
that reading the same book again and again can allow children to integrate information over time,
provide consistent and honest information in response to their repeated questions, and provide
them with the safety that comes from routine. “We had a standing appointment,” said one
43
participant, “and part of our routine was to read that story.” As all participants pointed out,
adherence to ritual is especially important for grieving children who may be struggling to find
elements of routine during an unpredictable and chaotic time. Providing them with predictability
and repetition was identified by all participants as a necessary intervention which could be
carried out through the repeated reading of a particular book. While discussing a child with
whom she had read the same book on a daily basis following the death of the child’s brother, one
participant stated “She read it over and over……for her, it was really important to have that
consistency.”
In the current study, one participant described how a book can become infused with
meaning for grieving children. “There’s something incredibly powerful about having a book
that’s tangible,” noted the CLS. “An aspect of this that I’ve also seen, especially with young
kids, is that the book becomes a transitional object. Like oftentimes when a person dies, we’ll
take something like an article of clothing or a picture or something like that. Something tangible.
But for some kids, it’s the book itself.” That participant recalled experiences with several
grieving children who have carried books with them and slept with them under their pillow,
noting that the book itself seemed to bring these children a sense of safety and comfort.
Among the previously mentioned types of support that grieving children need was the
knowledge that they are not alone in their grief. Participants identified support groups and camp
settings as ideal means of facilitating this knowledge and bringing children together, but also
noted how this identification can occur via the characters in books (M. Identification with
characters lets children know they’re not alone). Said one participant, “Support groups are really
helpful, but if kids don’t have access to that, what’s the next best thing? It’s stories. Stories they
can identify with, characters they can see themselves in.” Another recalled working with a child
44
who was losing his leg to osteosarcoma and struggling to cope with this profound loss. By
reading a book about a character who was coping with a similar situation, the child was able to
feel less alone and more hopeful about the future. “In the end he identified with the character and
that they were on the same page,” said the CLS. “It ended up being a really effective tool for
him, more so than anything else we did. It was the story that stuck with him.”
The final theme in this construct related to the safety that grieving children need in order
to optimally cope, express themselves, and begin to make sense of their loss. As previously
stated, participants noted that bibliotherapy can bring about this safety in several ways, including
the safety that children garner from ritual and routine as well as the comfort of the book as a
transitional object. In addition, a powerful theme emerged in regards to the critical role of the
relationship between the child and the facilitator (N. Trusting relationship provides safety and
permission). According to these participants, children gain an immense amount of safety within
the context of a trusting relationship, and this safety can be invoked through the act of reading
together. “I do think it’s about relationship building,” said one CLS. “Being read to is a very
intimate and personal experience.” Another told the story of a child with terminal cancer whom
she worked with for several years, and of her efforts to help this child understand his condition.
This participant recalled an experience in which the child became angry when she tried to read a
death-related book with him, but how the safety of their relationship ultimately allowed him to
cope with those feelings. “This kid knew that I was there to tell him something hard and he knew
what I was going to tell him,” said the CLS. “He already knew it. And after he had that release,
he trusted me to come back; he knew I would, he knew he could have that emotion with me, and
that opened the door to other stories.” She noted that after this particular incident, the child
repeatedly requested to read books with her.
45
In sum, participants in the current study identified five potential functions of
bibliotherapy for grieving children: 1.) The story as a catalyst for discussion, 2.) Words as tools,
3.) Books as ritual, 4.) Identification with characters, and 5.) Safety of the trusting relationship.
These functions directly related to previously identified methods of support that children need,
suggesting that effectively facilitated bibliotherapy can be a powerful and useful intervention for
Child Life Specialists when working with grieving children.
Construct 4) Meaning-making happens externally and internally
Participants in the current study shared their perspectives and experiences in helping
grieving children create meaning out of loss, and several themes emerged from their narratives.
The first related to the individualistic and gradual nature of the process (O. Meaning making is
an ongoing, personal process that children need support with). Participants identified helping
children create meaning as among their most important goals, with one CLS saying “They need
support around meaning making. You know, what is it that, how do I understand this? That’s it,
essentially. I think that’s huge.” Another spoke of the support that children need during meaning-
making but also stressed the importance of letting the child lead the process. Said this CLS, “Just
like in any therapy process, the therapist has to be humble enough to know that it’s not your
process. It’s the child’s. The child has the steering wheel. And you can help them to navigate,
you can offer them different routes or maps or ways to understand the journey, using the
language in books for instance, but you can’t take over that steering wheel.” Two participants
also noted the discrepancies between how adults and children make meaning, pointing out that
adults do much of this work cognitively and verbally. Said one participant “Adults tend to make
meaning through talking….. and it’s a very intellectual way of making meaning, to talk about it.”
Children, on the other hand, were said to create meaning differently and to need more
46
scaffolding when doing so. “Meaning-making is so important but I think that, especially for kids,
the meaning-making process is incredibly different than for adults” said one CLS, adding “I feel
like when kids make meaning it happens developmentally of course…..but from the experiences
I’ve had it happens as an internal, somatic and emotional experience, not just an intellectual
experience.” According to these participants, adults can support children through the meaning-
making process by providing them with tools for expression and emotional support.
All participants spoke of their efforts to scaffold this meaning making process for
grieving children, and identified bibliotherapy as one of the ways in which they do so (P.
Bibliotherapy can be used to facilitate and scaffold the meaning making process). In response to
a question about how she helps children create meaning after a loss, one participant began by
saying “I tend to use books for that…..I think books can help children talk about meaning and
how they understand things; it can help them shape meaning over time.” Participants noted that
books can serve as a means of presenting complex information in a safe, normalized, and
developmentally appropriate way so that children are more able to make sense of it. “I think
books can be helpful in giving children some safe parameters around a very abstract event,” said
one CLS, while another added “I like being able to read a story about it and have the child come
to their own conclusions in a more natural way like “Oh, that’s what’s happening.” They put the
pieces together and it becomes more of an understanding.” This understanding and meaning was
said to evolve over time, and two participants recalled experiences in which they used books to
scaffold this gradual process of meaning making. Said one participant, “I believe that (reading a
book repeatedly) was a part of her process of making sense and making meaning from something
that was just so completely abstract and confusing for her,” adding “I think that the book itself
can be a powerful metaphor for the grief process, that continuing relationship that kids need.”
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Though children’s process of meaning-making was said initially benefit from external
and social support, all participants noted how this meaning gradually becomes internalized as
part of a child’s internal narrative and used to organize the child’s sense of themselves, their
experiences, and the world. (Q. “In the end, they have the mental story”). Said one participant,
“It’s incredible to watch a child who is three and a half and their sibling dies, and then meet with
them when they’re five, and seven, and ten, and watch their grief process completely shift and
become a part of their identity in a way that’s not maladaptive. They’re not stuck in their grief,
but they have somehow figured out how to make that grief story a part of who they are in a way
that gives them meaning.” In regards to their experiences using bibliotherapy with grieving
children, participants invoked this shift from the external to the internal in several ways,
including the internalization of the language in the book, the gradual understanding and
acceptance of the story as it relates to the child’s experiences, and the internalization of the
safety, permission, and trust that bibliotherapy can provide. One participant told a poignant story
about practicing bibliotherapy with a child who was going blind, and struggling profoundly with
the fear and confusion associated with such a loss. This participant noted the ways in which this
child was able to internalize the meaning and content of the books. “He and I would read
together,” said the CLS, “and we would read the same series of books, over and over, so that he
could memorize the pages. So when his sight finally failed, he could still read the stories with me
because he could see them in his mind.” Participants described children’s process of
internalization in terms of the direct content of the books (e.g. the pictures or the words) as well
as the underlying meaning of the story itself (e.g. that grief is universal and survivable, that they
can talk about their feelings, or that there are people who love and support them).
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One participant described how reading the same book with a child over time can be a
powerful assessment technique for a Child Life Specialist, allowing them to “get a sense of how
the child identifies and how they relate to the characters in the book to see if they have
internalized any of the things that they’ve experienced through the language of book itself.” This
CLS went on to add “It can be a really interesting way to assess a child’s grief process and
understanding through the use of these books.” The results of the current study suggest that
grieving children need support in creating meaning and an internal narrative that is positive and
healing, and that bibliotherapy can be a powerful method of scaffolding this process.
Construct V.) Despite the rise of technology, bibliotherapy is a unique and valuable
intervention and Child Life Specialists are ideal facilitators
In addition to providing an in-depth account of their opinions and experiences of
bibliotherapy, all the participants identified the unique and irreplaceable role of the book even in
the face of a rising dependence on technology in the healthcare setting (R. “Find me an app for
that. You can’t”). All three participants claimed that technology can be highly useful in many
situations, but cannot serve the same functions as traditional bibliotherapy. One participant
described the prevalent use of video games in the hospital setting and noted that these can be a
normalizing and enjoyable activity for children. However, this participant recognized the
different kinds of stimulation that video games provide, saying “(children are) still being creative
in a way, but the tools are all right there. They don’t need to use their imagination in the same
way as you do when you’re reading a story.” Another participant was less accepting of
technology-based interventions, stating that “I think that in the electronic age a lot of what it is
doing is contributing to avoidance. It’s an easy way to avoid the hard things and minimize
coping for kids. But to sit down with a book can be a calming moment, a quiet moment, a way to
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specifically address a hard topic.” This participant specifically mentioned the irreplaceable value
of books when working with grieving children, adamantly insisting that “You can’t find an app
that tells a kid about death and dying. Find me an app for that. You can’t.”
However, participants also recognized that their opinions are not frequently shared by the
majority of their peers. (S. Bibliotherapy can be challenging for CLS due to lack of support and
understanding). “It seems like people using books for things is becoming a bit of a lost art,” said
one participant. “You have to explain why you’re using books. Whereas if you walk in with an
Ipad, no one even questions you. And it’s kind of sad. It’s a book.” This participant went on to
discuss the challenges she faces when practicing bibliotherapy within the field of Child Life, and
stressed her wish that more specialists shared her view. “I think bibliotherapy is a completely
underutilized skill in Child Life practice,” said this CLS. “I think we’ve gotten far too dependent
on things like Ipads.” This underutilization of bibliotherapy was said to be in part due to
challenges faced by Child Life Specialists who want to use books in the hospital setting, and
participants identified these challenges as arising from both institutional policies and
predominant attitudes. Said one participant, “The experience that I have is that yes, it is helpful,
and I have numerous examples of how it is helpful, but if you’re looking at empirical or
evidence-based research, there’s not that much out there. And our culture and our healthcare
system is moving so much more toward “gold standards” and “evidenced based this or that” and
“where is the research to back up why I need a grant for 5 thousand dollars just to buy books?””
Participants also noted the challenges they face due to institutional regulations, especially
surrounding infection control. One participant spoke of the strict infection control policies at her
hospital, saying “With infection control, it’s so hard to be able to use paper books in the hospital.
It requires us to have a lot of books that are free to give away to families to keep. It makes it
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challenging for us to manage some of those pieces in the hospital because you really have to be
careful.” Another participant noted that these policies are frequently inconsistent from hospital to
hospital, allowing some organizations to use books and disallowing others. Since the specific
details of infection control policies often differ slightly between hospitals and units, certain
hospitals may allow hardcover books that can be wiped with disinfectant, others may limit paper
books to certain low-risk units of the hospital, while others may do away with paper books
entirely and depend solely on Ipads.
In part stemming from the limitations placed by infection control and in part from the
prevalence of electronic devices in the hospital, another common theme across participants was
the ways in which they successfully merge bibliotherapy with technology (T. Bibliotherapy
cannot be replaced with technology, but can merge with technology). Participants mentioned the
use of devices such as Kindles and e-readers, claiming that these methods allow them to still
practice bibliotherapy even in the face of infection control policies. “I think technology can be
helpful and that it creates opportunities for us to reach more people with bibliotherapy and
reading in general. It gives us the opportunities to do it safely in in this setting where it’s often
hard to do,” said one CLS, adding that her hospital had recently acquired several Ipads full of
books relating to grief and loss. Although electronic forms of bibliotherapy were identified as
useful and adaptive, participants still considered traditional books to have an irreplaceable status,
a sentiment captured by one CLS who noted that “There’s something transformative about
picking up a book, feeling the book, turning the pages, smelling the pages, that you can’t replace
with technology. You just can’t.”
As a profession, Child Life Specialists have a unique role within the overall hospital
setting and in the lives of grieving children. Many of the skills that Child Life Specialists use on
51
a daily basis across all elements of their work, such as assessment skills, developmental
sensitivity, emotional attunement, and the ability to adapt and individualize an intervention,
make these professionals ideal facilitators for effective bibliotherapy. Participants in the current
study reflected this awareness in their responses, and noted many ways in which bibliotherapy
fits well within their particular skill set (U. Child Life Specialists are uniquely equipped
facilitators). When speaking about what effective facilitators need when reading with grieving
children, one participant said “Foremost is an understanding of child development. It’s so
crucial, like when we talk about how to prepare a child for a procedure, it’s that same skill set.
And we have this skill set.” This CLS went on to mention how important it is to be able to adapt
the book to fit the child, comparing that process with the one she undertakes when designing any
intervention. “There are elements of books that are important to include for some kids and not
for others. I’ve been known to rip pages out, tape pages together, cross words out, because it’s
really not appropriate for this one child but for this other child it might be. It’s individualized.”
Another participant focused more on the interpersonal skills of Child Life Specialists and their
ability to create a safe place for children, noting that an essential skill when practicing
bibliotherapy is “the experience that Child Life Specialist have, human to human, of knowing
what it’s like to sit with a child who is grieving or with a parent who just lost their child…… I
think that Child Life Specialists have that skill set and that ability.” In conclusion, the
participants in the current study identified the practice of bibliotherapy as a valuable intervention
when working with grieving children, especially when effectively facilitated. Despite the
challenges posed by institutional regulations and attitudes, the unique role and skills of Child
Life Specialists enables these professionals to be ideal facilitators of bibliotherapy.
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Discussion
The primary goal of this exploratory study was to ascertain an in-depth portrait of Child
Life Specialists’ perspectives on the benefits and functions of bibliotherapy for children who are
grieving. Participants were asked a series of open-ended questions designed to capture their
professional and personal opinions on the specific needs of grieving children, the importance of
meaning-making following a loss, and how bibliotherapy can serve these functions. Secondary
aims of this study were to explore how Child Life Specialists may better use bibliotherapy in
their work and how the practice of bibliotherapy fits in to the overall role and therapeutic goals
of a Child Life Specialist. This study was designed to build upon existing literature on the
importance of emotional expression and meaning-making following a loss while providing a
qualitative expansion to the scarcity of studies pertaining to Child Life Specialists’ use of
bibliotherapy as a healing modality for grief.
Participant responses revealed consistent opinions regarding the specific needs of
grieving children, the powerful though underutilized therapeutic benefits of bibliotherapy when
working with this population, and the mechanisms behind this efficacy. In addition, participants
identified Child Life Specialists as uniquely qualified facilitators of bibliotherapy due to their
specific skill set and professional role in the hospital setting. Overall, the results of this study
suggest that although bibliotherapy is becoming quickly surpassed by more technologically-
based interventions in the hospital setting, it remains a powerful and specialized healing modality
that can make an immense impact in the lives of grieving children and their families. The
following discussion section will identify several predominant findings from the current study,
discuss how these findings supplement and expand upon previous research, and outline several
limitations and suggestions for further research and the field of Child Life.
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Echoing previous studies and literature pertaining to grief and childhood grief,
participants in the current study highlighted the universal difficulties associated with talking
about, coping with, and making sense out of loss. The experience of grief was described as
highly individualized but also shaped by the context of the family and wider culture. This finding
was consistent with work by previous researchers and grief scholars, who claim that both
personal and contextual factors can play a considerable role in how an individual processes grief,
both interpersonally and intrapersonally (Bernstien, 1977; Briggs & Pehrsson, 2008;
Oppenheimer, 2011).
Children’s perceptive abilities to infer underlying cultural influences and familial
messages, as well as their immature developmental, cognitive and linguistic capacities were
identified by participants in the current study to be additional challenges that grieving children
must navigate in their efforts to cope and make meaning from their experiences. This finding
adds to a substantial body of research positing that children grieve and process information
differently, and thus require sensitive and developmentally appropriate support and information
from adults in order to express themselves, understand what has happened, and begin to heal
(Amer, 1999; Berg-Cross & Berg-Cross, 1976; Bernstein, 1977, Briggs & Pehrsson, 2008;
Oppenheimer, 2011). However, as noted by all participants, processing and working through
grief can be challenging for children if the adults in their lives are also unsure of how to talk
about it.
Participants noted that grieving parents often struggle as much as their children do to find
the right words and the emotional safety to say them out loud, and that parents can also benefit
from supportive interventions following a loss. Parents are often hesitant to discuss death with
their children out of a desire to protect them, but that this pattern can easily become bidirectional
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and detrimental if children pick up on their parent’s sadness and hesitation and are then
themselves less able to talk and inquire freely. Children learn by example and are extremely
perceptive of emotions (Bernstein, 1977; Thompson, 2009), and as one participant stated, will
“Learn not to talk about it” if the adults around them do not create a context in which grief and
loss are permissible topics of conversation. Grieving children often have many questions,
worries, and misconceptions about what has happened, and need clear information and honest
facts from their caregivers about what is going on in their lives (Bernstein, 1997; Briggs &
Pehrsson, 2008). When adults give words to grief and sadness, they also give children
permission to feel and talk about those feelings (Bernstein, 1977).
Results from the current study also suggest that the difficulties associated with talking
about grief and loss transcend not only developmental lines, but also professional ones. An
interesting and unexpected finding that emerged during the coding process was the admission by
all participants that they also struggle to find the right words when talking about these topics.
This emerged as a powerful theme, and suggests that the difficulties associated with discussing
grief and loss are as human and universal as the very experience of grief and loss, and extend
even to those professionals whose job it is to talk about it. This finding also suggests that further
examination of this issue, as well as increased academic and professional support for Child Life
Specialists working with grieving children, may be warranted.
In their discussion of the unique needs of hospitalized children, Gaynard, Wolfer,
Goldberger, Thompson, Redburn & Laidley (1990) note that “one of the challenges of pediatric
healthcare providers is to accurately communicate with children in a minimally threatening
manner, without increasing their stress level” (p. 59). The use of minimally threatening language
when talking about sensitive issues, as well as the ability to create a safe space to do so, are
55
valuable skills that require a great deal of purpose and thought. This is true across all aspects of
Child Life practice, and becomes especially pertinent when working with highly vulnerable
children, such as those who are grieving. In addition to the findings regarding the unique needs
of grieving children and the critical importance of emotional expression, results of the current
study revealed that bibliotherapy can be a powerfully healing and developmentally appropriate
intervention. Through sensitively facilitated bibliotherapy, grieving children can be given the
words, permission, safety, and structure that they need to cope and make meaning from their
experiences. These findings add to the existing body of knowledge pertaining to bibliotherapy as
a healing modality for grief, while providing support for the practice when facilitated by Child
Life Specialists in the hospital setting.
In order for grieving children to optimally cope with and understand their experiences,
the importance of developmentally appropriate information, emotional vocabulary, safety,
consistency, and identification with others has been extensively discussed and documented in
previous literature (Amer,1999; Berg-Cross & Berg-Cross, 1976; Bernstein, 1977, Briggs &
Pehrsson, 2008; Gillies & Neimeyer , 2006; Oppenheimer, 2011). The current study confirmed
and expanded upon these earlier findings. By drawing from the perspectives of Child Life
Specialists, the current study also revealed additional information regarding the therapeutic value
of bibliotherapy for grieving children in the hospital setting, as well as the potential mechanisms
behind this efficacy. Participant narratives suggested that relevant books, read within the context
of a trusting relationship with a facilitator, can provide children with the tools and permission
they need to express themselves, the consistency and ritual they need to feel safe, and the sense
that they are not alone with their emotions or their circumstances. Grief can be an immensely
isolating experience for children, who may feel different from their peers, unable to talk openly
56
about their feelings, and even at fault for the loss of their loved one due to the egocentric patterns
of thinking inherent in early childhood (Berg-Cross & Berg-Cross, 1976; Bernstein, 1977;
Kaufman & Kaufman, 2005; Thompson, 2009). Results of the current study suggest that
facilitated bibliotherapy can allow grieving children to feel less alone by helping them identify
with the characters in books, as well as through the intimacy and safety that reading with another
person provides.
For young children, repetition and ritual are normal developmental needs and can be
powerful sources of structure and control (Fogel, 2015). In addition, children learn and process
information through repeated exposures and asking questions over and over, which are normal
developmental responses not only to everyday life experiences, but also to grief and loss
(Bernstein, 1977; Thompson, 2008). Books are familiar, consistent, and repetitive by their very
nature, and reading a book over and over can be a powerful and effective way for grieving
children to feel secure and have their questions answered. One participant also noted the
tendency for the book itself to become a transitional object for the grieving child. A transitional
object is one which is infused with association and meaning, often related to a loved one, from
which children can draw comfort and security in the absence of that person (Steir & Brauch
Lehman, 2000). Although fondness for transitional objects is considered a normal part of child
development, the behavior is often evident across the lifespan especially during times of loss
(Steir & Brauch Lehman, 2000). Participant accounts of children carrying a meaningful book
with them, sleeping with it under their pillow, and incorporating it in to their routines suggest
that a book itself, in addition to the content of the story, can serve an important and healing
function for grieving children.
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Among the aims of the current study was to ascertain if and how bibliotherapy could be
used to help children create meaning after a loss. This question was shaped by previous research
as well as constructivist and trauma theories, which view the grief process as an active search for
meaning and construction of an internal narrative from which to make sense of one’s experiences
(Gilles & Neimeyer, 2006). Through this lens, the most damaging losses are considered to be
those which an individual cannot make sense of and which disrupt his or her basic sense of trust
and safety in the world (Gilles & Neimeyer, 2006). Adults often make meaning and develop
understanding cognitively, analytically, and verbally. For children, who find safety in the
familiar and make sense of their world through concrete thinking, grief and loss can be
immeasurably disruptive (Bernstein, 1977; Thompson, 2008). Additionally, children may lack
the understanding, permission, and words to express themselves, and such developmental
constraints can obfuscate their internal and external efforts to create meaning from their
experiences. Adults can play a role in supporting children through this process by helping them
find meaning and shape an internal narrative that allows for understanding, healing, and growth
(Massey, 2000).
All participants in the current study spoke of their efforts to scaffold this meaning making
process for grieving children, and identified bibliotherapy as a developmentally appropriate and
healing modality with which to do so. Participants described their use of books to present
abstract, complex, and emotionally charged material to children within “safe parameters” and in
a way that children can more easily make sense of and apply to their own lives. Participants
noted that this external support is immensely beneficial for children, and also spoke of how
children’s growing understanding gradually gets internalized and becomes a part of their story of
their lives. This internalization of the story connects to work by Vygotsky, who claimed that
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language begins in the social context and is gradually internalized as the thought processes
through which we filter our experiences, ourselves, and the world (Berk & Winsler, 2002). These
findings can also be interpreted within the constructivist model of grief, which states that
reorganization of one’s internal narratives can be one way in which both understanding and
meaning are constructed (Gilles & Neimeyer, 2006). Participant narratives suggest that grieving
children can be helped to internalize not only the language and words in a story, but also the
safety, security, and trust that sensitively facilitated bibliotherapy can provide. “We live in
stories” (Gilbert, 2002, p. 37), and these narratives have a powerful effect on how we view
ourselves and understand our experiences. For children whose lives have been disrupted by grief
and loss, receiving the support necessary to shape internal narratives that are positive and healing
is paramount. The results of the current study place emphasis on this notion, advance the efficacy
of bibliotherapy as an intervention, and suggest that Child Life Specialists are uniquely
positioned and qualified to facilitate this process for children.
Conclusion
Bibliotherapy, the use of words and stories for therapeutic purposes, is a targeted
intervention that when properly facilitated has the potential to provide immense benefit across a
wide range of settings and populations. Though the use of books as a healing modality has been
practiced for hundreds of years, there is currently a marked scarcity of research pertaining to the
efficacy and best practice of bibliotherapy within the field of Child Life. The current study
sought to expand upon this topic by exploring the perspectives of Child Life Specialists who use
bibliotherapy in their work with grieving children. Results of this research study suggest that this
intervention has the potential to be a valuable therapeutic tool and can aid in grieving children’s
efforts to cope, find security and comfort, and create meaning following a loss. Child Life
59
Specialists were identified as ideal facilitators for bibliotherapy due to their extensive knowledge
of child development, their assessment and interventions skills, and their skillful ability to create
safety for children amidst the most frightening of circumstances.
The current study was limited somewhat by a small sample size, yet in keeping with the
tenets of qualitative research, the limited number of participants should in no way detract from
the authenticity of their narratives. Rather than aiming for generalizable facts, narrative studies
such as this one aim to accurately capture the experiences of the specific participants in order to
give them a voice. The current study has achieved this goal, while adding an exploratory
contribution to the scarcity of research pertaining to this topic.
Due to the specific demographics of the population being studied (Child Life Specialists
who utilize bibliotherapy), these participants were expected to bring an inherent bias in favor of
the practice and this was indeed the case. Future researchers hoping to ascertain a comparative or
empirical account of the benefits of bibliotherapy vs. other interventions are advised to use a
more balanced pool of participants. For the purposes of the current study, however, the
participant bias was not considered problematic.
Results of this study indicate that Child Life Specialists have the potential to be ideal
facilitators of bibliotherapy and bring considerable benefit to the lives of grieving children.
However, bibliotherapy is not a widely practiced intervention, and any training or discussion of
the practice is frequently absent from Child Life programs. Participants in the current study
addressed this lack of adequate education surrounding bibliotherapy. All noted that they were
never taught how to do it and unilaterally recommended that this training be included in the
education of Child Life Specialists. “It would be fantastic if there was some kind of protocol or
60
training or class on bibliotherapy that people could have so that when they go to their first
position, they don’t feel like they’re just floundering,” said one participant. Another stated “I
would be a huge supporter of bibliotherapy training for every Child Life Specialist.” Increasing
training and awareness of the practice of bibliotherapy is recommended in order to expand upon
the pre-existing skills Child Life Specialists possess and further their efforts to improve the lives
of children and families.
61
References
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Berg‐Cross, G., & Berg‐Cross, L. (1976). Bibliotherapy for young children. Journal of Clinical
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Psychosocial care of children in hospitals: A clinical practice manual for the ACCH
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Appendix
Table 1
List of Theoretical Constructs and Themes
______________________________________________________________________________
1.“It’s hard to talk about death. It’s hard to talk about grief”
1A. Intrapersonal difficulty: Death is hard to think about and conceptualize
A. “For young kids, it’s very very confusing and it’s very very scary”
B. Children have both awareness and confusion surrounding what isn’t said
1B. Interpersonal difficulty: “They Learn Not to Talk About It”
C. Death and loss are hard for parents to talk about
D. Death and loss are hard for Child Life Specialists to talk about
E. “Children pick up on it in an instant”
2. Grieving children need safety to express themselves and the tools to do so
F. Grieving children need permission and validation to feel and express
G. Grieving children need ritual and consistency
H. Grieving children need accurate and honest information
I. Grieving children need help realizing that they’re not alone
3. Bibliotherapy can serve many necessary functions for grieving children
J. “And then they start talking”: The story as a catalyst for discussion
K. Words can function as tools
L. Books can function as ritual
M. Identification with characters lets children know they’re not alone
N. Trusting relationship provides safety and permission
4. Meaning-making happens externally and internally
O. Meaning making is an ongoing, personal process that children need support with
P. Bibliotherapy can be used to facilitate and scaffold the meaning making process
Q. “In the end, they have the mental story”
5. Despite the rise of technology, bibliotherapy is a unique and valuable intervention and
Child Life Specialists are ideal facilitators
R. “Find me an app for that. You can’t.”
S. Bibliotherapy cannot be replaced with technology, but can merge with technology
T. Bibliotherapy can be challenging for CLS due to lack of support and understanding
U. Child Life Specialists are uniquely equipped facilitators
___________________________________________________________________________________
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Call Script
Hi, my name is Hania Thomas-Adams and I am a Child Life graduate student at Mills College. I
am reaching out to Child Life specialists in the area to see if you might be interested in
participating in a research study I am conducting. Do you have a few minutes to talk?
If yes: Thank you so much. For my thesis this year, I am interviewing Child Life specialists who
have experience using bibliotherapy as a healing modality for grieving children. I am interested
in the ways that books can be used to help emotional expression and meaning-making, as well as
the role of Child Life as facilitators in this process. This would be an interview study, and would
take around 45 minutes, on average.
If no, or machine: Is there a better time at which I could reach you? (Provide my phone
number)
Are you interested in participating in this study?
If yes: Thank you so much. I really appreciate it and I’ll do my best to work around your
schedule. [schedule time and place of participant’s choice]
If no: No problem. I understand, and thank you for your time.
If you have any more questions, or need to cancel or reschedule, please feel free to contact me at:
(researcher’s phone number).
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Recruitment Email
Dear __________,
My name is Hania Thomas-Adams and I am a Child Life student at Mills College. I am reaching
out to Child Life Specialists in the area to see if you might be interested in participating in a
research study I am conducting. For my graduate thesis this year, I am interviewing Child Life
Specialists who have experience using bibliotherapy as a healing modality for grieving children.
I am interested in the ways that books can be used to help emotional expression and meaning-
making, as well as the role of Child Life as facilitators in this process. This would be an
interview study, and would take between 30-60 minutes. I am not looking for particular answers;
rather, I am interested in your stories and experiences.
I truly appreciate your time, and would do my utmost to schedule an interview at a time and
place that is convenient for you. If you are interested in participating, please feel free to call me
at (researchers phone number) or email me at (researcher’s email)
I look forward to speaking with you.
Sincerely,
Hania Thomas-Adams
67
Child Life Specialists’ Use of Bibliotherapy with Grieving Children: How Books can be used to Aid
Emotional Expression, Meaning-Making and Healing
Informed Consent
I, __________________________, state that I am over 18 years of age and that I voluntarily agree to
participate in a research project conducted by Hania Thomas-Adams, Master’s Degree candidate at
Mills College, under the supervision of Dr. Linda Perez.
The research is being conducted in order to capture the stories, experiences and opinions of Child
Life Specialists pertaining to their use of bibliotherapy with grieving children. The specific task I
will perform requires answering a series of open ended, semi-structured interview questions relating
to my personal experiences and thoughts on this subject. I may be asked to recall specific instances
as well as more general questions regarding my opinions and practices. The interview is expected to
take approximately 45 minutes.
I acknowledge that Hania has explained the task to me fully; has informed me that I may withdraw
from participation at any time without prejudice or penalty; has offered to answer any questions that I
might have concerning the research procedure; has assured me that any information that I give will
be used for research purposes only and will be kept confidential in a secure office after all identifying
information has been anonymized.
The session will be audiotaped if I consent. All personal records and information will be kept on
a password protected computer and a locked filing cabinet for a period of 10 years, after which it
may be destroyed. No names will appear on the data. Data will only be used for purposes
directly related to research, such as in courses, academic talks or in publications. Images of
myself would only be used for academic purposes with my explicit permission.
I also acknowledge that the benefits derived from my participation have been fully explained to me
and that I have been promised, upon completion of the research task, a brief description of the role
my specific performance plays in this project. I understand that I may contact Hania Thomas-Adams,
Mills College School of Education,(email) or Dr. Linda Perez (email) if I have questions about this
study at a time following my participation.
___________________________
(Signature of participant)
___________________________
(Date signed)
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Guiding Research Questions
How do you see your role as a Child Life Specialist when working with grieving
children?
What are some of the ways that you help grieving children express emotion and talk
about difficult topics? Why is this particularly difficult for children?
In your opinion, what emotional and practical supports do children need in times of grief
and loss?
What are your opinions and thoughts on the practice of bibliotherapy in general, and with
grieving children specifically?
If you were describing bibliotherapy to a Child Life Intern who had never practiced it,
how would you describe it and what advice would you give them?
In your experience and opinion, how can books be used to help children after a loss?
When reading with a grieving child, what sorts of things do you hope to accomplish?
How do you typically go about this process?
Could you tell me a story about a time when you used bibliotherapy with a grieving child
and it went well?
Have you ever had an experience where reading with a grieving child did not go well? If
so, what factors do you think were at play?
How do you integrate elements of family centered care in to your practice of
bibliotherapy, if at all?
At a time when digital entertainment, preparation, and educational tools are becoming
more prevalent, do you feel that bibliotherapy still has a place in the hospital setting?
Why or why not?
Is there anything else that you would like to add before we end the interview?
NOTE: These questions are meant as a guide; further questions will emerge as they are
informed by the participants’ responses.
