Digital Stories Created by Children With Advanced Cancer

Abstract

Background:

Legacy building is a priority for pediatric oncology. Storytelling is one strategy to help children document their legacies. Understanding story content would advance knowledge of how children want to be remembered but this has yet to be explored. This study explored content of digital stories created by children with advanced cancer.

Method:

Facebook advertisements were used to recruit families of children (7–17) with relapsed/refractory cancer to participate in a randomized controlled trial testing a legacy intervention through storytelling. Parent–child dyads (N = 150) were randomly assigned to an intervention or usual care group. A web program guided children to answer legacy questions and upload photographs, movies, and music. Families received the final digital stories. Experienced qualitative coders developed a hierarchical coding system to identify major categories/subcategories within 78 stories.

Results:

Stories included 1,516 unique story entries, including text, photographs, and movies. Two major categories emerged from the data: (a) story entry medium and (b) story content. Photographs frequently reflected people, objects, pets, and places while text often described personal preferences, goals, dreams, and other people. The story content overall included references to (a) people, (b) setting/location, (c) cancer, (d) objects/activities, and (e) expression of emotions/beliefs. Exemplar quotes, counts, and frequencies for each category are reported.

Discussion:

Children documented their legacies through stories that emphasized the value of family relationships and children’s desires to be known for personal traits/preferences. Children chose to include cancer in their stories, indicating that cancer is a part of how children perceive their legacies.

Registration Number:

ClinicalTrials.gov NCT04059393.

Background

Approximately 11,050 children aged 0–14 years are diagnosed with cancer annually in the United States (Siegel et al., 2020). Treatment improvements have decreased mortality rates while increasing treatment toxicities (Siegel et al., 2020). Cancer and its treatments cause many children to suffer substantial physical consequences and negative psychological effects, including anxiety, depression, post-traumatic stress symptoms, and suicidal thoughts (Jones et al., 2020; Kunin et al., 1995; Kwak et al., 2013; McDonnell et al., 2017). Childhood cancer can cause family difficulties, often straining family relationships (Alderfer et al., 2009; Barakat et al., 2010; Erker et al., 2018), which may consequently decrease ill children’s quality of life (Barakat et al., 2010). Long-term cancer effects can include child posttraumatic stress disorder and family relationship problems (Alderfer et al., 2009).

Legacy building, or actions or behaviors for the purpose of being remembered (Akard et al., 2013), is a strategy that has shown promise to benefit children with cancer and their family members (Akard et al., 2015, 2020). Examples of legacy services include offering hand molds, locks of hair, memory books, photography, art, and music and are often offered by children’s hospitals to children with serious conditions and their families (Akard, Burley, Root, Dietrich, Cowfer, & Mooney-Doyle, 2021; Foster et al., 2012). Legacies have been documented using digital storytelling, which includes diverse forms of media (e.g., text, photographs, video; Akard et al., 2020; Foster et al., 2009; Gubrium, 2009). Digital storytelling has been used in individuals who have suffered adverse childhood experiences, adults receiving end-of-life care, and adult cancer survivors (Chochinov et al., 2005; Ferrari et al., 2015; Laing et al., 2019) and have spanned a wide age range (e.g., 5–56 years of age; Ferrari et al., 2015). Children, adolescents, and adults with cancer have used digital storytelling to reflect on their experiences and share with others (Kuntz et al., 2019; Laing et al., 2017). Benefits of legacy building through digital storytelling has shown promise to improve outcomes including parent–child communication, child expression of feelings, child emotional functioning, child coping, parent-emotional comfort, and parent coping (Akard et al., 2015, 2020; Akard, Burley, Root, Dietrich, Cowfer, & Mooney-Doyle, 2021; Akard, Dietrich, Friedman, Gerhardt, Given, Hendricks-Ferguson, Hinds, Ridner, et al., 2021; Akard, Dietrich, Friedman, Wray, Gerhardt, Given, Hendricks-Ferguson, Hinds, et al., 2021; Cho et al., 2023; Foster et al., 2012). Despite benefits and advances in science related to legacy building, few studies have analyzed digital stories created by children with cancer, thus, little is known about the content of digital stories that document the legacies of children with cancer. Better understanding of the content that children document within legacy interventions would contribute new and important information to the science. The purpose of this study was to explore the content of legacy building digital stories created by children with advanced cancer.

Method

This single-site study was part of a larger randomized clinical trial examining the effects of a legacy intervention on child quality of life, child and parent coping, and parent– child communication (Akard et al., 2020; Akard, Dietrich, Friedman, Gerhardt, Given, Hendricks-Ferguson, Hinds, Ridner, et al., 2021; Akard, Dietrich, Friedman, Wray, Gerhardt, Given, Hendricks-Ferguson, Hinds, et al., 2021; Akard, Dietrich, Friedman, Wray, Gerhardt, Hendricks-Ferguson, Hinds, Rhoten, et al., 2021; Cho et al., 2023). After institutional review board approval (IRB 140622), participants were recruited through Facebook advertisements targeting parents of children with cancer who (a) were 18 years of age or older, (b) were located in the United States, (c) were any gender, and (d) had interest in pediatric oncology (liked other Facebook pages related to childhood cancer, etc.; Cho et al., 2021). Parents clicked on an electronic REDCap link in the Facebook ad that described the study and included screening questions. Potentially eligible parents completed demographic questions and provided their contact information. The study coordinator contacted interested parents by phone or email within 1 week to describe the study and confirm eligibility. Eligible participants were (a) children 7–17 years of age, (b) children with relapsed or refractory cancer determined by parent self-report, (c) able to speak and understand English, (d) those with Internet access, and (e) without cognitive impairment as determined by the coordinator during the consent process. Primary parent caregivers included the legal parent guardian who spent the greatest number of hours per week with the eligible child. For all eligible child– parent dyads, the coordinator obtained verbal parent consent and child assent and confirmed contact information to send study documents and the link to the legacy intervention website.

Legacy Intervention

After consent, child–parent dyads were randomly assigned to either the intervention (n = 75) or usual care (n = 75) group by using a computer-generated randomization approach with a permuted block scheme. The legacy intervention is described in detail elsewhere (Akard et al., 2020) and was originally developed based on the dignity therapy model (Chochinov & Julião, 2021) and child self-reports (Akard et al., 2013). In brief, each dyad created a username and password for the website. The website guided children to create a digital storyboard by directing them to answer legacy questions about self (e.g., What are things that you remember the most or think are most important? When do you feel most happy? What are the most important roles you play or have played in life?) and connectedness with others (e.g., What have you learned about life that you would you want to pass along to other people? Are there special messages that you would like to say to your family or friends?). Children could answer any, all, or none of the legacy questions, and could choose to write about other topics of their choice. Children could also upload photographs, movies, and music. Children were asked to complete the intervention within 2 weeks. When children completed the storyboard, the website generated a unique electronic link that the coordinator emailed to the child or parent. The control group received usual care. The intervention was offered to children in the wait-list control group after each child–parent dyad completed T2 measures. This article describes content of 78 stories created by children.

Analysis

IBM SPSS Statistics (Version 26) was used to generate the descriptive statistical summaries of the demographic and clinical characteristics of the participants included in this report. Frequency distributions were used to summarize the nominal characteristics. Means and standard deviation summarized normally distributed continuous characteristics; median and interquartile range summarized skewed distributions.

The Qualitative Research Core at Vanderbilt University managed data coding and analysis. Two experienced and trained qualitative coders developed and refined a hierarchical coding system by using the content of the web-based stories. Coders first reviewed verbatim transcripts to get a sense of the data as a whole. Major categories were identified and further divided into three to seven subcategories, with each subcategory having additional levels of hierarchical divisions. Definitions and rules were written for the use of each category. Coders first established reliability in using the coding system, then coded the remaining transcripts independently. Each statement was treated as a separate quote, and each quote could be assigned up to five independent codes. Transcripts were then combined and sorted by code. Analysis consisted of interpreting the sorted coded quotes and identifying higher-order themes and connections between themes. Management of transcripts, quotations, and codes was done using Microsoft Excel 2016 and SPSS Version 25.0.

Results

One hundred and fifty children enrolled in the two-group pre- and postintervention randomized controlled trial. Our consort flow diagram is published elsewhere (Akard et al., 2020). Participant and disease demographics are presented in Tables 1 and 2. In brief, children averaged 11 years of age (M = 3.2) and were mostly female (n = 41, 53.2%), White (n = 66, 86.8%), and from the Middle West (n = 44, 57.9%). The children had experienced a cancer relapse (n = 56, 72.7%) or refractory disease (n = 21, 27.3%) and received chemotherapy (n = 72, 93.5%) or radiation (n = 57, 74%) cancer treatment. Six (7.8%) had been referred to palliative care, and one (1.3%) had been referred to hospice.

Table 1.

Demographic Characteristics (N = 78)

Characteristic	N	n (%)
Study group assignment	77
Control		32 (41.6)
Intervention		45 (58.4)
Gender	77
Male		36 (46.8)
Female		41 (53.2)
Race	76
White		66 (86.8)
Black or African American		0 (0.0)
Asian		0 (0.0)
American Indian or Alaska Native		2 (2.6)
Other		8 (10.5)
Ethnicity	76
Hispanic or Latino		10 (13.2)
Non-Hispanic or Latino		66 (86.8)
Primary language	77
English		74 (96.1)
Spanish		3 (3.9)
Home region	76
Northeast		6 (7.9)
Southeast		16 (21.1)
Middle west		44 (57.9)
Southwest		8 (10.5)
West		2 (2.6)
Current annual family income	76
Under $25,000 per year		32 (42.1)
$25,001–$50,000 per year		19 (25.0)
$50,001–$75,000 per year		10 (13.2)
$75,001–$100,000 per year		7 (9.2)
$100,001 or more per year		8 (10.5)
		M (SD)
Age (years)	77	10.6 (3.2)

Table 2.

Clinical Characteristics (N = 78)

Characteristic	N	Overall n (%)
Cancer relapse or recurrence	77
No		21 (27.3)
Yes		56 (72.7)
Secondary cancer	77
No		74 (96.1)
Yes		3 (3.9)
Surgery to remove tumor	77
No		47 (61.0)
Yes		30 (39.0)
Chemotherapy	77
No		5 (6.5)
Yes		72 (93.5)
Radiation	77
No		20 (26.0)
Yes		57 (74.0)
Bone marrow transplant	76
No		62 (81.6)
Yes		14 (18.4)
Phase I study	77
No		47 (61.0)
Yes		12 (15.6)
Unsure		18 (23.4)
Notified cancer is terminal	77
No		68 (88.3)
Yes		9 (11.7)
DNR order in place	77
No		75 (97.4)
Yes		2 (2.6)
Hospice	77
No		76 (98.7)
Yes		1 (1.3)
Palliative care	77
No		69 (89.6)
Yes		6 (7.8)
Unknown		2 (2.6)

Note. DNR = Do Not Resuscitate.

Six major themes emerged from the qualitative data: (a) entry medium; (b) people; (c) places; (d) references to cancer; (e) objects, things, and activities; and (f) expression of emotions and beliefs. Table 3 includes counts and frequencies for the total number of entries and participants that referenced each category. Table 4 includes qualitative code definitions and exemplar quotes.

Table 3.

Entry Medium

Code	Number of entries	Number of participants
Entry medium
Photograph
Object	38	15
Person	753	53
Place	13	8
Other	50	22
No type specified	2	1
Animals/pets	31	16
Text
Dream	29	19
Goal	71	38
Discuss personal preferences	340	59
Describes another person	189	48
Other	3	3
Movies	21	10
People
Self	909	66
Friends	127	40
Friends with cancer	10	8
Friends without cancer	117	38
Family	618	62
Mom	166	51
Dad	113	35
Sibling(s)	181	47
Grandparent	58	18
Other family	31	21
General family references	69	29
Nonfamily adults	153	37
Adult family friend	11	9
Teacher	13	10
Health providers	47	16
Other adults	81	29
Places
School	77	30
Home	194	36
Holiday celebration/special event	38	18
Normal day	156	32
Hospital	154	36
Vacation	114	34
Sports/active setting	65	23
Other location	224	47
References to cancer
Clothing that references cancer	55	16
Indicated location	47	11
Textual reference	163	46
Make a wish trip	32	32
Other	201	37
Objects, things, and activities
Pets/animals	137	50
Toys/electronics	104	36
Food	90	39
Sports/activities	108	34
Clothing	142	32
Playful attire	85	24
Dress clothes	51	17
Other	6	6
Books/television/movies/music	68	31
Awards	45	24
Expressions of emotions and beliefs
Positive affect	437	54
Optimism	50	21
Grateful	111	45
Negative emotions	17	11
Religious beliefs	26	10
Future goals	7	6

Table 4.

Code Definitions and Exemplar Quotes

Code	Definition	Exemplar quote
Main types of entries
Photographs	This set of categories is used to describe the type of photograph
Object	Photograph included object
Person	Photograph included another person
Place	Photograph included a place
Other	Photograph included something else like a business logo and other online photographs
No type specified	This category was used for links to resources that were not specifically photographs such as a newspaper article or an audio file
Animals/pets	Photograph included animals or pets
Text	This category was used when the entry had text
Dream	Text that talked about hope, wishes, and dreams	“My biggest dream is that I won’t have cancer anymore. One day …” (13 years old)
Goal	Text that talked about personal goals	“My goal in life is to attend college and receive a master’s degree. My goal is to become a scientist who cures cancer.” (11 years old)
Discuss personal preferences	Likes, dislikes, or other preferences. Also included statements of fact like “My name is Pete”	“Soccer is my favorite sport. I have played it since I was four.” (10 years old)
Describes another person	Descriptions of other persons	“My big brother, was my bone marrow donor. Thanks to him I’m doing great today.” (12 years old)
Movies	The entry was an uploaded movie file
People
Self	The text or photograph is self-referential	“I like stars and the moon. Sometimes mommy will lay a blanket down on the grass and let me lay on it and we will watch the stars.” (7 years old)
Friends	Peers who are not siblings and fall into the general age range of the individual. We assumed that they were friends
Friends with cancer	Peers who the individual has met at St. Jude	“Everyone made it possible for me to go to my Junior Prom. This is my date, and longtime friend who is also a survivor…” (16 years old)
Friends without cancer	Peers without cancer	We go to see Star Wars every year and have sleepovers 20,000 times a year!” (9 years old)
Family	Entire family with a text reference highlighting that the photograph was of the whole family	“My friends and family are the most important thing in my life, except for my dogs of course.” (15 years old)
Mom	Entries that included mom	“This is my amazing mother who has done everything to make me the person I am today. She is my bestfriend and the best mother in the entire world. I love her so much!” (15 years old)
Dad	Entries that included dad	“My dad and I are also very close. He is an extremely hard worker in everything he does, and has been a great role model for me growing up. I can always count on him to lighten the mood and joke around with me. He likes to watch sports and fish.” (15 years old)
Sibling(s)	Entries that included sibling(s)	“My sister is the one of the smartest, prettiest and strongest people I know […] I don’t know what I would do without her in my life to support me and comfort me through my struggles.” (16 years old)
Grandparent	Entries that included grandparent	“My grandpa is super awesome he always comes to visit me and plays the [video game console] with me he is very nice and always brings me a candy.” (8 years old)
Other family	Entries that included other family members like cousins	“He is my favorite cousin ever. We have so much fun together laughing playing talking I love him and he make me laugh.” (10 years old)
Nonfamily adults	Entries that included nonfamily adults
Adult family friend	Entries that included adult family friend	“A friend of our family is teaching me how to play guitar. I have only had a few lessons so far, but I really like it. My teacher says I am doing good.” (7 years old)
Teacher	Entries that included teachers	“[Coach name] has been my football coach for the past four years he was very inspiring, motivating and he knew how to reach out to us players.” (17 years old)
Health providers	Entries that included health providers including doctors and nurses	“This is […] one of my nurses. She always takes care of me everytime I have to see her. Sometimes at night she sneaks me down to the store and lets me pick out treats. She helps dances and helps us have parties. She helps make it not so boring. I miss her when I don’t get to see her.” (8 years old)
Other adults	Encompasses inclusion of any adult not otherwise specified.	“[Professional football player] came to visit me at the hospital.” (17 years old)
Places
School	Entry included a reference to school	“I love being able to go back to school and seeing all my friends. It was one of the things that I did miss. Even though at times it was hard to get up in the morning, I am so happy to be back. I am doing very good in all my classes and I couldn’t be happier.” (15 years old)
Home	Entry included a reference to home
Holiday celebration/special event	A holiday celebration or special event at home	“I love all holidays but Christmas is definitely my favorite because I have an excuse to bake all kinds of different things! I also really love wrapping gifts.” (17 years old)
Normal day	An photograph or text showing everyday life at home	“In the winter, one of my favorite places is being close to the woodburner. My mom moves the furniture around so I can be closer to it and facing it.” (15 years old)
Hospital	Entry included a reference to the hospital	“I’m a good patient and I don’t really mind being in the hospital. I make the nurses laugh.” (8 years old)
Vacation	Entries that refer to vacations	“Last summer I took a plane all by myself to visit my aunt […] in [location]. I had a really great time. I got to walk around town, visit a museum, go to the beach, and go zip lining! I also got some fun souvenirs.” (16 years old)
Sports/active setting	Entries that refer to sports participation or sports events	“I like to play soccer. I like it better than baseball … I like that we have pink jerseys. Some people on my team are a little faster than me but I always catch up and play hard.” (8 years old)
Other location	For photographs taken in a setting not listed above	“Mommy takes us to the parks frequently to get fresh air and to learn about nature.” (12 years old)
References to cancer
Clothing that references cancer	Clothing with words or logos that signal a reference to cancer
Indicated location	Places associated with cancer care or treatment	“When I’m in the hospital I enjoy to keep my mind active even when I’m not feeling well…” (15 years old)
Textual reference	A text reference that included the word “cancer”	“When I grow up I am going to cure CANCER! So no more kids get sick!” (7 years old)
Make-a-wish trip	Reference to make a wish trip	“We went on my Make a Wish trip to Disney and got to do a lot of fun things. My favorite was collecting all of the crushed pennies and getting autographs from all the characters.” (7 years old)
Other	Something else in the text or photograph draws attention to or signals cancer	“When I am not bald, I have a brown colored wig!” (15 years old)
Objects, things, and activities
Pets/animals	Pets or other animals	“I love catching insects and keeping them in my bug house so I can watch them and learn about them!” (9 years old)
Toys/electronics	Toys, devices, electronics (cellphone, iPad, stuffed animal)	“My favorite toy is probably my train set that is turning into a more of a hobby.” (12 years old)
Food	Food	“I love spaghetti and garlic bread with salad my favorite yummy in my tummy.” (10 years old)
Sports/activities	Photographs or text that refer to sporting activities	“I love to dance, especially ballet!” (7 years old)
Clothing	The individual’s attire evokes either beauty or humor
Playful attire	Playful attire included things like costumes, dress-up, or silly clothes
Dress clothes	Dress clothes include more formal attire such as dresses, ties, blazers
Other	Other types of attention drawn to clothing	“I wear two rings, one on my right, one on my left. I have a watch and a bunch of bracelets that go up my left forearm. Each one of them has a special meaning to me and tell a story. People always ask about where I got them and if they have a symbolic meaning.” (16 years old)
Books/television/movies/music	The thing made reference to media or communication such as books, television, movies, and music	“I love to listen to music on my Ipad and I love to dance. I can break dance pretty good. I like a lot of different music and songs.” (7 years old)
Awards	Text or photograph making reference to an award or trophy	“I was awarded this award for having courage during my battle with Ewings Sarcoma.” (12 years old)
Expressions of emotions and beliefs
Positive affect	Smiling, happy statements about a pleasant mood and positive emotion, photographs depicting laughter, other indicators of happiness or good mood	“I like to have fun! I like to smile wherever I am and whatever I do!” (7 years old)
Optimism	Statements that refer to future outcomes that are good or positive	“I want everyone to know that cancer did not once have a grip on me. I showed cancer who was boss and I kicked it to the curb. Thats one of my biggest life achievements.” (15 years old)
Grateful	Statements expressing gratitude for people, places, or things	“My mom loves me. She plays with me. She takes care of me. Shes the best mommy.” (7 years old)
Negative emotions	Sadness, depression, stress, boredom, fear, anxiety, etc.	“My cancer came back it was the worst day of my life but at least I have something to write about in my essay at school.” (12 years old)
Religious beliefs	Specific references to faith, prayer, or God	“I see life now in another way, God has given me the opportunity to have another life. I have always believed that God does everything for a reason. I love being able to talk about the wonderful things that God has let me done and experience that I have gone through.” (15 years old)
Future goals	Refers to goals in a nontextual context	“Nothing or no one will stop me from going to college.” (17 years old)

Entry Medium

Photographs, text, and videos were the three types of entries that the children incorporated into their digital stories. Photographs most often represented people, typically the child and family members. Text most often described children’s preferences. Videos reflected daily activities, hobbies, or specific occasions such as birthdays.

People

Stories most frequently referred to people, including self, friends, families, and nonfamily adults.

Self.

Participants included self-references within their stories. This code was used whenever the individual mentioned his or herself in either text or photograph. A 7-year-old child expressed, “I like stars and the moon. Sometimes mommy will lay a blanket down on the grass and let me lay on it and we will watch the stars.”

Friends.

Participants included friends in their stories, including friends with and without cancer. Friends with cancer referred to nonfamilial similar-aged friends the child met at the hospital. Friends without cancer referenced individuals who were not specified as having cancer. Many participants included positive descriptions of their friends and stories of past interactions with them. One 9-year-old child described his or her friend (without cancer): “We go to see Star Wars every year and have sleepovers 20,000 times a year!” A teenager included a photograph of a friend with cancer and said, “Everyone made it possible for me to go to my Junior Prom. This is my date, and longtime friend who is also a survivor…”

Family.

Participants referenced family in their stories. Siblings were included most often. Types of sibling entries included photographs with brothers and sisters, stories of favorite memories with siblings, and comments about disagreements or frustrations with siblings. While some stories reflected children’s mildly negative feelings toward siblings, all textual references contained a neutral or positive element. Some photograph captions included descriptions of favorite qualities about siblings and how they have been supportive. A 16-year-old said, “My sister is … one of the smartest, prettiest and strongest people I know […] I don’t know what I would do without her in my life to support me and comfort me through my struggles.”

The next most frequently referenced family members were parents, with mothers being included more often than fathers. Some children also referenced both parents together Most participants positively described their parents, and some included stories or memories with their parents. One 15-year-old said, “This is my amazing mother who has done everything to make me the person I am today. She is my best friend and the best mother in the entire world. I love her so much!”

Entries also included grandparents. Many children conveyed their enjoyment in spending time with grandparents and described activities they enjoy together. Some entries referenced other family members such as aunts, uncles, cousins, stepparents, and stepsiblings. Stories also referenced family in general without providing specific details identifying individual family members. This category included both text entries and photographs of the entire family.

Nonfamily Adults.

Participants included nonfamily adults. Other adults often referenced celebrities, singers, professional athletes, and amusement park characters. Health providers referred to the children’s health providers at a hospital or doctor’s office. Stories most frequently documented nurses. One 8-year-old child stated,

This is […] one of my nurses. She always takes care of me everytime I have to see her. Sometimes at night she sneaks me down to the store and lets me pick out treats. She helps dances and helps us have parties. She helps make it not so boring. I miss her when I don’t get to see her.

Places

The children used a wide range of places to display and describe their lives. This included many photographs at home, in the hospital, at school, on vacation, and at sporting events.

Home.

Entries that referenced events or typical activities in the children’s home were included in this category. Holiday celebrations/special events referred to text and photographs that depicted holiday or special events celebrated at the individual’s home, including Christmas, Thanksgiving, Halloween, and birthdays. Normal day depicted events that took place at the individual’s home in an everyday context and most frequently represented the children and their pets.

Hospital.

This category depicted events/objects at or related to the hospital, such as the individuals in hospital beds or them receiving treatment. Textual references included statements about treatments received or activities experienced at the hospital (e.g., toys, puzzles, relationships with the nurses).

School.

Participants incorporated school in their stories. This included textual references to academics, classes, and college and photographs of school events, friends, and extracurricular activities.

Vacation.

Entries included in this category involved trips taken by the child (not including make-a-wish trips), often with family members to different cities, amusement parks, beaches, or to visit extended family. A 16-year-old stated, “Last summer I took a plane all by myself to visit my aunt […] in [location]. I had a really great time. I got to walk around town, visit a museum, go to the beach, and go zip lining! I also got some fun souvenirs.”

Sports/Active Setting.

This category referenced sports locations or physical activities at school or other locations. This included the individual in active settings such as a pool or stadium, although the child was not necessarily playing sports or engaging in physical activity.

References to Cancer

Children referred to various places, items, and attributes of cancer to communicate their experiences. These included clothing, locations, textual references, and trips.

Clothing That References Cancer.

This category included text and photographs depicting items of clothing referencing cancer. Clothing most often included t-shirts with cancer ribbons, event names, and direct cancer references. The children were most commonly photographed wearing the clothes, but this also included family and members of the community such as teachers or friends wearing the clothing.

Indicated Location.

Stories documented settings that referred to cancer. The most common setting was the hospital; however, some entries also referenced other locations such as outpatient clinics.

Textual Reference.

Stories contained text mentioning cancer or the individual’s experience with diagnosis, treatment, or remission. This included in-depth and specific references to cancer as well as indirect references. One 7-year-old child insisted, “When I grow up I am going to cure CANCER! So no more kids get sick!”

Make a Wish Trip.

This code refers to text and photographs that depicted make-a-wish trips. Trips typically involved cruises or amusement parks.

Other References to Cancer.

This code was used for other attributes of text or photographs that refer to cancer and was the most frequently used code within the cancer category. The most common indicator was appearance such as hair loss or signs/posters in the background. While most all of these entries included photographs, one 15-year-old typed, “When I am not bald, I have a brown colored wig!”

Objects, Things, and Activities

Stories often described physical objects or activities which included animals, toys, food, sports, clothing, media, and awards.

Pets/Animals.

Participants included pets/animals, most commonly at home or the zoo, within their stories. Stories frequently documented the individual’s favorite animal. A 9-year-old child said, “I love catching insects and keeping them in my bug house so I can watch them and learn about them!”

Toys/Electronics.

Stories frequently depicted toys or electronics. Examples of toys include stuffed animals (most common) and board games. Electronics include gaming consoles, iPads, computers, and social media. Most of the photographs portrayed the individuals interacting with the toys/electronics; however, some photographs merely depicted the toy/electronic. The most common setting was at home or at the hospital.

Food.

Entries of text and photographs referencing food commonly described children’s favorite food. Photographs included children and their family members sitting around the food, eating the food, or making the food, and there were some photographs capturing only the food. The most common setting was at home or at the hospital.

Sports/Activities.

This category was used for stories referencing sports and physical activity. The most common sports were football and baseball. The photographs included the individual playing the sport, sport awards, or casual physical activity. Text entries included statements about the individual participating in sports or describing sports enjoyed by their family.

Clothing.

Stories also specifically referenced clothing. Playful attire most frequently included photographs of the children in costumes or other playful clothing items. Dress clothes depicted the individual or other people in dress clothes, frequently for special occasions. Lastly, the other category included all other references to noticeable clothing and accessories such as hats or jewelry.

Books/Television/Movies/Music.

Stories referred to books, television, movies, and music, which were often personal preferences to describe the individual’s favorite hobbies. Many photographs from the internet included musicians, book covers, and movie posters. A 7-year-old child said, “I love to listen to music on my Ipad, and I love to dance. I can break dance pretty good. I like a lot of different music and songs.”

Awards.

Participants included references to awards he/she had received, including awards related to academics, completing chemotherapy, and character. Photographs depicted the award itself or the individual receiving/holding the award.

Expressions of Emotions and Beliefs

Children included references that expressed emotions and beliefs. These references in stories and photographs were often positive and optimistic, expressing gratitude, religious sentiments, and hopefulness.

Positive Affect.

Entries expressed happy statements about a pleasant mood and positive emotions. Photographs depicted the individual smiling, laughing, or exhibiting a positive attitude. Textual references include positive tones and expressions of happiness/joy. A 7-year-old child said, “I like to have fun! I like to smile wherever I am and whatever I do!”

Optimism.

Stories documented children’s optimism and determination despite difficult circumstances. Negative circumstances that provoked optimism include difficult treatment, inability to participate in certain activities, and general difficulty with cancer.

Grateful.

Children expressed their gratefulness and appreciation in their stories. Expressions of gratitude for family members and friends or for positive experiences since his/her cancer diagnosis were included.

Negative Emotions.

Participants expressed negative emotions such as sadness, stress, fear, anxiety, irritation toward siblings, and difficulties/pain associated with treatment.

Religious Beliefs.

Stories reflected the individual’s religious beliefs or background. Photographs include the individual at church/religious events and objects in the background referring to his or her religion. Textual references include expression of religious faith and the role the individual’s religion plays in their cancer journey. One 15-year-old explained,

I see life now in another way, God has given me the opportunity to have another life. I have always believed that God does everything for a reason. I love being able to talk about the wonderful things that God has let me done and experience that I have gone through.

Future Goals.

Stories documented goals or objectives that the ill children hoped to achieve.

Discussion

This novel study was one of the first to analyze the content of stories documenting the legacies of children with advanced cancer. Stories reflected children’s identity as normal kids who included aspects of their past, present, and future. Many of the children included accounts of memories such as favorite moments spent with friends or families. A large number of participants described themselves in the present by including their preferences or favorites in categories such as colors or animals. Similarly, children with advanced cancer have previously reported that they hope others know or remember their characteristics, things they like to do, and their connections with others (Akard et al., 2013). This suggests that children with cancer largely wanted to discuss typical topics that one might expect from any child.

Participants frequently included references to their future and described goals. Many of the participants described how they envision their future including details about goals such as attending college, working in a chosen career field, or learning new skills. Some of the children also expressed a desire to enter the medical field with hopes to cure cancer, many of them even professing a specific goal of preventing others from having to experience the disease. One study found that adolescent and young adult cancer survivors often imagine their futures with a larger emphasis on illness which can lead to a higher risk of poor mental health (Sansom-Daly et al., 2018). It is important for these survivors to be encouraged to consider their lives without focusing solely on their illness (Gubrium, 2009).

While most of the story entries were related to typical childhood activities, a theme related to the topic of cancer emerged. Despite no explicit probing questions about cancer, many participants included references to cancer within their stories. These findings indicate that participants’ experiences with cancer are possibly tied to their identity in part and may be considered an integral part of their story and self-description. Participants were proactively willing to share their stories about cancer, similar to other pediatric cancer studies using child self-reports with high participation rates (Akard et al., 2013, 2020). Contrarily, Hinds et al. (2007) found that a common reason for refusal to participate in pediatric palliative care research is that patients and families felt that it was too sensitive of a subject. More work is needed to determine if storytelling is a developmentally appropriate intervention format that helps facilitate vulnerable children and their parents to be more willing to express ideas about sensitive cancer-related topics.

Children’s story content strongly reflected connections with other people, including family and friends. This was not surprising as the legacy intervention was originally developed based on children with advanced cancer reporting that they desired to express their feelings toward others and share about important people in their lives (Akard et al., 2013). Parents reported on our T3 satisfaction survey that the intervention improved parent–child communication (72%) and child expression of feelings (86%; Akard et al., 2020). Results have also shown positive effects of the intervention to improve parent–child communication, particularly between children and fathers (Akard, Dietrich, Friedman, Gerhardt, Given, Hendricks-Ferguson, Hinds, Ridner, et al., 2021). Including parent–child interactions and communication as components of legacy interventions through storytelling is an important area of future research related to legacy building.

Children chose the type of story medium for their stories based on their preferences, including photos, videos, or music. Most participants added photographs from mobile phone cameras to children’s digital stories, similar to other studies for children with cancer (Kuntz et al., 2019). Other studies have used alternative mediums. For example, Woodgate et al. (2014) found computerized drawings can help children and adolescents express their existential challenges while they are living with cancer. Adolescents and young adults undergoing stem cell transplantation have engaged in therapeutic music video interventions with mediums including music, storyboards, and song lyrics to create music videos (Robb et al., 2014). In contrast, none of our participants uploaded music files for their digital stories. Literature suggests that creative art activities may reduce children’s illness-related distress by promoting connection, coping, and communication, and letting them being in the flow of the moment (Raybin et al., 2020). More research is needed to determine how intervention medium may allow participants to open up and be willing to share their experiences.

Study Limitations

Findings are limited to children aged 7–17 years with relapsed or refractory cancer, thus may not transfer to other age groups or patients at different phases of the cancer trajectory (e.g., new diagnosis). Participants from this large developmental age range may have, in part, explained choices children made about what they included in their digital stories. The sample lacked racial diversity, and the majority of families were English-speaking. Although children could select their own topic for their story, categories and example topics provided to children through the web program likely biased content based on the guiding legacy questions. Participants also experienced some intervention web program technical glitches in the early phases of the study related to lack of user-friendliness (e.g., difficulty uploading movies), thus type of media used in stories may have been affected. Despite these limitations, our novel study contributes new knowledge to our understanding of legacy interventions through digital storytelling in pediatric oncology.

Implications

Pediatric oncology nurses and other healthcare professionals can help inform families that children with cancer are often willing, and sometimes eager, to communicate about cancer and cancer-related experiences. Nurses are in ideal roles to help facilitate opportunities for children to document their legacies as this may be important for children with life-limiting illnesses such as cancer, regardless of prognosis. Nurses can help emphasize to children with cancer and their families that the ill child has already created a legacy because of who they are; however, stories may serve as a resource with a tangible product to help document their unique legacies to help the child and family members. Future research should explore how content of legacy interventions may be impacted by child demographic and clinical characteristics such as age, gender, and point of illness trajectory. More research is needed to better understand which patients are most likely to benefit from legacy services, which services are most beneficial, and the best time in the illness trajectory to offer such services.

Conclusion

The content of children’s digital stories displays the desire of pediatric patients with advanced cancer to be remembered or known based on their characteristics or preferences, and they often described this in terms of their past, present, and future. The story content also reveals the value that children with advanced cancer place on connections with others and their ability to share their thoughts and feelings with those important to them. While most of the story content was unrelated to the participants’ cancer diagnosis, many still chose to include cancer. Thus, children with cancer are likely willing to communicate about their cancer experience and participate in future research.