Secondary Logo

Journal Logo

ARTICLES: ONLINE ONLY

Forced Enlightenment

A Metasynthesis of Experiences During Childhood Cancer Survivorship

Carney, Katherine Bernier PhD, RN; Guite, Jessica W. PhD; Young, Erin E. PhD; Starkweather, Angela R. PhD, ACNP-BC, FAAN

Author Information
doi: 10.1097/NCC.0000000000000775

Abstract

Over the last few decades, the 5-year survival rate of children with cancer has continued to rise and is now greater than 80%.1,2 Although advancements in treatment have extended the duration of life for children with cancer, it is well documented that the experience of childhood cancer survivorship is often coupled with adverse symptoms that often persist well beyond the receipt of treatment, resulting in the need for vigilant follow-up.2,3 Specific posttreatment outcomes may include chronic pain, neurocognitive impairment, and/or functional disability.2,4,5

Cancer survivorship can be described as starting with the diagnosis and continuing into “extended survival”6(p114) at the time in which clinical treatment is finished, with no indication that the cancer experience is complete. Childhood cancer survivorship may be further accepted as a lifelong continuum that incorporates ongoing phases of coping, uncertainty, and dependence on a supportive community.6,7 Shepherd and Woodgate6(p112) note that “survivorship ends with survivor’s death.” For children and adolescents in particular, awareness of the lasting nature of survivorship is needed to ensure continuity of care throughout the life span.

Gaining an understanding of the posttreatment experience is a worthy investigation as it allows for reflection with the possibility of creating interventions to improve treatment outcomes as well as quality of life for patients and family members. Articles investigating the child’s posttreatment experience as well as the experience of their siblings, parents, and grandparents continuously contribute to the literature.8–10 Additional efforts to understand the experiences of childhood cancer survivors are well underway. The Childhood Cancer Survivor Study (CCSS) has been a stronghold in producing literature and recommendations in caring for this population. Starting in 1994, CCSS has published dozens of investigations on childhood cancer survivorship topics ranging from physiological sequelae to social experiences after treatment.11 Cox et al12 investigated the current unmet healthcare needs of childhood cancer survivors within the CCSS, describing that 75% of individuals in a large sample (n = 1189) reported at least 1 unmet need and that all needs expressed were related to cancer- and/or treatment-related fear/anxiety. Further investigating these needs can inform how to better address them during and after treatment.

Despite the fact that there is growing quantitative and qualitative literature on the phenomenon of survivorship in this population, there remains an absence of synthesized qualitative studies focusing on the lived experience of childhood cancer survivors. Although individual articles provide a wealth of information, the use of meta-analysis and metasynthesis in both quantitative and qualitative research, respectively, can allow for new perspectives to emerge. At the time of writing of this article, no qualitative metasyntheses were found that described the experiences of survivorship solely from the view of the survivor. Gaining the perspective from the survivors is an invaluable resource for facilitating improvements and innovations in their care experience.

Sandelowski and Barroso13 describe qualitative metasynthesis as a type of investigative endeavor that merges findings from individual qualitative studies to attain “the result of interpretive transformations far removed from these findings as given in research reports.”13(p18) By translating the qualitative results into one another, a richer understanding of the phenomenon should emerge. Qualitative synthesis can be a useful tool in bridging the gap between pieces of clinical research and evidence-based practice.14 Examining the first-person experience of survivors of childhood cancer using this method would further the understanding of the childhood cancer survivorship experience and contribute to intervention development. Therefore, the aim of this qualitative metasynthesis was to investigate the experiences of childhood cancer survivors and integrate the findings to formulate a new awareness of survivorship.

Methods

Research Design

The qualitative meta-ethnography approach of Noblit and Hare15 guided this metasynthesis. Influenced by Dr Stephen Turner’s work on social explanation, Noblit and Hare15 outline that the qualitative interpretive paradigm is closely reflective of an ethnographic approach as the research is directed, translated, and projected from the researcher’s own lens. Using this method, we extracted findings from various qualitative studies and fused the results together in order to unveil a new understanding of the data. Considering the heavy reliance on an emic (from within the social group) interpretation, careful attention was taken with the translation in regard to language and abstraction. We took caution in crafting together a product that validly represents that phenomenon of interest, as recommended by Sandelowski and Barroso.13

The purpose of this research was to use the meta-ethnographic approach to improve the understanding of childhood cancer survivorship. Such an approach as the one illustrated by Noblit and Hare15 has the potential to unravel pieces of this phenomenon and illuminate areas that may direct a new focus. Moreover, meta-ethnography was chosen over a more structured type of qualitative approach in order to explore common metaphors among studies and extract key concepts that can drive new research questions.16 This design allows for new insight into this complex experience to further inform evidence-based practice.16

Data Extraction and Analysis Approach

Noblit and Hare’s15 phases of meta-ethnographic research provided the guide to synthesize the qualitative data. These steps include (1) identifying a topic of interest to be studied; (2) performing a thorough literature search to identify relevant qualitative studies; (3) reading the relevant studies multiple times to identify key metaphors (ie, concepts, themes, phrases); (4) discerning how the studies are related by comparing and contrasting the metaphors; (5) translating the findings into each other while conserving the main concepts as they relate to each study; (6) synthesizing the translations, leading to the interpreted results; and (7) disseminating results from the synthesis through an appropriate method of communication.15 When translating and subsequently synthesizing the findings, the results can be related in 1 of 3 ways: (a) reciprocal, (b) refutational, or (c) presented as a “line of argument.”15(p36) In the current metasynthesis, a reciprocal translation was followed as the studies were directly comparable.

Following these guidelines, we read each study multiple times to gain a comprehensive understanding of the major findings. During the subsequent readings, common themes, concepts, and statements relating to the survivorship experience were highlighted and combined in an electronic table. Using the reciprocal approach, we compared the findings from each study until key metaphors emerged through synthesized translations and extracted various quotes from each of the studies for evidential support. Finally, we identified 3 central concepts repeated across the metaphors to develop a global theme of childhood cancer survivorship.

Sample Criteria

To identify articles for the metasynthesis, the authors conducted a thorough literature search for relevant studies in the following databases: PubMed, Cumulative Index to Nursing and Allied Health Literature, PsycINFO, SCOPUS, ERIC, and Dissertation Abstracts International. Key terms used included qualitative, phenomenology, grounded theory, pediatric, oncology, childhood, cancer, survivor(ship), experience, pain, and symptom. More specifically, within the database PubMed, the MeSH terms used included treatment/intervention/therapy, cancer survivors, and qualitative research (see Supplemental Digital Content, Appendix 1, http://links.lww.com/CN/A28). Per the guidance of Sandelowski and Barroso,13 the authors began the literature search with an open framework focusing on experiences of children with cancer and subsequently narrowed it to experiences of childhood cancer survivors as guided by the lack of synthesized qualitative research on this topic. After clearly identifying the topic of interest, we identified the methodological parameters to identify relevant qualitative articles.

Inclusion criteria comprised articles following a qualitative or mixed-methods design, focused on the experiences of childhood cancer survivors during the posttreatment phase, and published in English prior to November 2018. We did not specify a publication date limitation for article inclusion in order to maintain a broad cast of article retrieval from the databases employed.13 Articles were excluded if they enrolled participants who were receiving active treatment for childhood cancer, focused on survivors of adult cancer, or concerned a single aspect of survivorship such as pain or fatigue. Articles were also ineligible for inclusion if they investigated the experiences of family members (ie, parents, siblings), other caregivers, or peers in addition to the cancer survivors.

In addition to searching for relevant articles through the electronic databases, the ancestry approach was used to identify additional qualitative studies by reviewing the reference lists of articles that were assessed for eligibility.13 Further, we searched the names of authors with relevant publications in the electronic databases in an attempt to identify articles not attained in the primary searches. The first author identified the final sample, and the last author confirmed the methodological quality and relevance. Any disagreements regarding article inclusion were resolved by discussion.

Quality Appraisal

All articles were reviewed with the Critical Appraisal Skills Programme (CASP) qualitative appraisal tool, which provides 10 questions to evaluate overall study rigor.17 For each study, a “1” or a “0” was given to indicate if the study met the specified criteria and values were totaled for an appraisal score of high (score 8–10), moderate (4–7), or low (0–3) rigor. Studies with a quality score of moderate or high were included in this metasynthesis.

Results

After completing the database searches and eliminating duplicates, the first author screened 2041 article titles and abstracts and subsequently assessed 71 full-text manuscripts for inclusion criteria. A final sample of 18 articles met inclusion and appraisal criteria for this metasynthesis. Figure displays a flowchart of the article selection process.

Figure
Figure:
Flowchart of metasynthesis article inclusion.

Articles included for this metasynthesis were from the disciplines of nursing, social work, health science, and psychology. The research studies employed phenomenology, grounded theory, descriptive qualitative, Photovoice, and mixed methods in their research designs. The majority of the studies took place in the United States, with the earliest article identified to meet inclusion criteria published in 1998. All of the studies reviewed scored within the moderate to high category (≥4) using the CASP tool and therefore were included in this metasynthesis (see Supplemental Digital Content, Appendix 2, http://links.lww.com/CN/A28). The cumulative total of 384 study participants across all articles represented all 3 major types of childhood cancer as outlined by the Children’s Oncology Group18: leukemia, lymphoma, and solid tumors. Table 1 displays the demographic characteristics of the studies, and Table 2 presents the methodological characteristics including the quality appraisal scores.

Table 1
Table 1:
Demographic Characteristics of Studies Included in Metasynthesis
Table 2
Table 2:
Methodological Characteristics of Studies Included in Metasynthesis

From the 18 studies identified, the authors constructed 4 key metaphors, including (1) Transcendence, (2) Fortifying Bonds, (3) Lingering Shadows, and (4) Ongoing Acclimation. These 4 metaphors demonstrate the reciprocal translations distinguished throughout the qualitative articles. The metaphor of “Transcendence” represents the way in which survivors move beyond their cancer experience, while realizing its enduring impact on their identity development. The “Fortifying Bonds” metaphor refers to the role and the impact of relationships in the survivors’ daily lives. “Lingering Shadows” describes the persistent physical and psychological consequences of the cancer treatment. Finally, “Ongoing Acclimation” discusses how the survivors describe the recognition of having a varied life experience from peers and the strategies used to cope during survivorship as well as manage the uncertain nature of their future. The metaphors are brought together by 3 essential concepts that drive the survivorship experience: (1) recognition of wisdom gained, (2) acknowledgment of vulnerabilities, and (3) actions taken to manage present and future. Together, these metaphors and essential concepts make up the global theme “Forced Enlightenment.” The themes, comments, and statements extracted from the articles to support each metaphor are presented in Table 3.

Table 3
Table 3:
Metaphors Used to Construct Forced Enlightenment Metasynthesis

Transcendence

Survivors of childhood cancer enter back into the “normal world” with a different perspective from their lives prior to their cancer diagnosis. For many, they have experienced multiple years distanced from the world they once knew. Upon treatment completion, the survivors described seeing their world with new eyes. All 18 studies19–36 included statements representing the metaphor of transcendence, in which the survivor emerges from the treatment experience with a more mature perspective with which they use to reflect on life. One participant described their experience as follows: “Cancer as my past is important, but the future and what it has in store needs to become the new focus in my life.”33(p387) This new focus incorporates themes of appreciation19,20,32 and joy.28

The integration of cancer into the identity of survivors was consistently described.21,22,25,27,29,30 Prouty et al21 discussed the enduring nature of the cancer experience after treatment, whereas Cantrell and Conte30 pointed out that regardless of age at diagnosis, cancer holds a permanent imprint on their life experiences. The title of “cancer survivor” itself is a stamp of identity, with both positive and negative connotations. Survivors in Phillips and Jones’29 and Lehmann and colleagues’28 articles describe that although this identity development can be a point of pride, it can also be a stigmatizing label. The feelings reflected in this status are captured in the quote, “I’m different and I want to tell somebody. But no, I don’t go around and offer that because I feel like I don’t want them to treat me differently.”29(p45)

Beyond the discussion of identity was the acknowledgment of self-growth seen in the posttreatment period. Drew22(p284) described survivors as experiencing life that is “fundamentally changed” from what was once known and beginning a new life upon entering survivorship. Eleven of the studies19,23,25–28,30–32,34,35 referred to a cultivation of self-satisfaction and sense of pride throughout their narrative. The qualitative articles of Brown et al,23 Kim,34 and Lehmann et al28 each detailed the posttreatment period as an opportunity for survivors to take control of their life in the direction of positive growth, with a participant stating, “I think self-satisfaction is the most important indicator of positive growth, even without success or good social relationships.”34(p63)

The final component of the transcendence metaphor identified is the active reflection expressed by survivors. Not only did survivors identify their personal growth, but they also recognized their commitment to life.20,23,24,28,32 As a participant described, “It [cancer] has also made me realize not to take life for granted.”35(p24) Cheng et al31(p81) characterized the role of cancer as a “turning point” in the lives of survivors.

Fortifying Bonds

Despite the fact that some survivors were more cautious about forming relationships with others, rising above the cancer experience was generally not an independent activity. Survivors reported relationship growth through fostered connections with others and reported an internal capacity to fortify personal bonds.19,26,28,32,35 An overwhelming sense of gratitude was expressed for the support, acceptance, and protection received from family and friends both during the active treatment phase and during survivorship.21–23,26,29,31,32,34 Survivors described that it was the most adaptive relationships that continued into posttreatment period.25,33

In reflection of the cancer experience, childhood cancer survivors greatly valued the role of parents and family members.23,31,32,36 They recognized the turbulence that their diagnosis caused in the family and the continued repercussions experienced during survivorship. Survivors also acknowledged the impact cancer had on their parents’ career and the financial burden of treatment on their families.23,32 One survivor stated, “I feel guilty because I don’t remember anything; yet, having cancer has had a negative impact on the rest of my family.”30(p333) Some participants described feeling sympathy for their siblings as the survivors required increased attention from their parents,23,36 whereas others noted to feel secondary to their brothers and sisters.36

Many also attributed their success in treatment and survivorship to a development of spirituality. Relationships with faith allowed for an avenue of reflection on life’s purpose and as an outlet for coping.26,31,35 The qualitative investigation by Cheng et al31 of survivorship experiences in aboriginal adolescents described traditional tribal ceremonies providing a foundation for resilience. One survivor recounted their experience in attending a tribal ritual: “I couldn’t describe the experience through words, but I felt protected by the ancestral spirits and I felt peaceful and strong.”31(p82)

In contemplating their own growth, the childhood cancer survivors displayed a matured ability for connection.19,26,28,32,35 They described a strengthened capacity for empathy and sympathy for others, which may be a direct reflection of their cancer experience and appreciation for the generosity they had received.19,35 Zamora et al35(p24) labeled this as an ability to meet at a “common ground” with others also undergoing cancer treatment or dealing with hardships in their lives. This connection implies a type of interpersonal link, as described by one survivor, “…I can definitely feel it from the heart. When someone tells me something, I can feel what they mean.”19(p159)

Lingering Shadows

Although many of the childhood cancer survivors try to move beyond their cancer experience, lingering shadows remind them of their history. Considered a burden on their lives,27,34 a survivor explained that they carry a “black cloud of previous experience.”29(p45) Although not present in the consciousness of all survivors, more than half of the articles described both physical and psychological consequences of treatment that create a persistent sense of “otherness.”20–22,24,25,27–30,32–34,36

The aftermath of treatment of cancer on the physical body can range from impaired cognitive processing to disfigurement.21,22,32,33 Both male and female survivors noted the changes in physical appearance, strength, and function,20–23,27,28,30,32,33,36 which Drew22 specifically described as reflecting a dissociation with former selves. Physical scars can leave constant reminders and lead to an internal struggle with body image and integrity.22,25,28,32,36 One survivor relayed their experience stating, “My self-image has been altered, my bodily self-image… I don’t have a 100% correct image of my body, I got another ideal image… and it is hard to let that go.”25(pE20) Childhood cancer survivors also described the concern for the consequences of cancer treatment on current and future reproductive abilities and fertility.22,28,32,36

In addition to physical scars, survivors deal with continued psychological effects of treatment and must learn to also manage these vulnerabilities.20,22,24,25,27–30,32–34,36 A major influencing factor of these concerns is the uncertainty childhood cancer survivors experience in looking to their future. Worry and fear can flood into the minds of survivors as they consider how their treatment may impact their lives moving forward.20,22,24,27,28,33,36 One survivor stated, “I cannot say the word cancer without getting the shivers.”28(p1231) Cantrell and Conte24(p317) noted the psychological transition between gratitude for life to reacclimation to survivorship as losing “the magic.”

Ongoing Acclimation

The metaphor of ongoing acclimation pertains to the recognition that survivors are different from peers as well as the physical and psychological strategies childhood cancer survivors use to cope with an uncertain future. Early in survivorship, this acclimation process takes time and continuous effort. One of the first steps noted in the narratives was the recognition of where the child or adolescent is from a developmental standpoint when they re-enter as a “survivor,” particularly in comparison to their peers. Doukkali et al,27 Drew,22 Enskär and Berterö,25 and Phillips and Jones29 each identified feelings of childhood cancer survivors being different from peers. Cantrell and Conte24(p316) cited that treatment left a sense of “arrested development,” where Jones et al26 conversely referenced feelings of an accelerated development. Other survivors experienced continued life disruption after treatment, with a participant stating, “[Cancer] did make me feel like I lost a year of my life. I always feel like I am losing time.”33(p385)

Although reacclimation into peer groups was a prevalent topic, individuals were not always willing to share their detailed history with others and expressed caution in developing new relationships.24,28,32,34 One survivor described that he “built a firewall in his heart as a defense mechanism”32(p1047) to prevent rejection from others. Some childhood cancer survivors would actively change the topic in conversations when they could sense that others became uncomfortable while listening to their story,30 whereas others would fabricate life stories to share.28 These coping strategies allowed for survivors to escape from ongoing interrogations and instant visceral responses from peers, thereby permitting them the space to focus on the positive aspects of their experience and continue their existence beyond the realm of cancer.30

In order to move forward into survivor status, adaptation and coping strategies were consistently found in the qualitative articles, with an emphasis on the desire for normality and acceptance.19–22,25,27–29,32 The research articles from both Parry20 and Cantrell and Conte30 described survivors working to gain a sense of balance in their lives. This need for stability in acclimating into the survivor role reflects a conscious effort for reprioritization in everyday moments.28,35 Survivors expressed the need to be proactive22,24 and flexible19–21,27 in order to cope. One participant stated, “I think breaking free from the chains of cancer is the most important thing. When I’m still bound to memory, it pulls me down every time I’m trying to do something, and I keep thinking that doing something new might take a toll on my health. I think getting out of this vicious cycle is positive growth.”34(p63) Drew22 further described these coping strategies as negation and renegotiation, where survivors remain mindful of their cancer past in order to make sense of the present.

As referenced in the theme “Lingering Shadows,” the notion of uncertainty holds a consistent presence in the survivors’ lives. These individuals do not know if cancer will return or how they will be affected by long-term sequelae, leading to a conscious and subconscious awareness of the fragile nature of their health and survivorship status. The qualitative study by Parry20 published in 2003 directly addressed the concept of uncertainty experienced by childhood cancer survivors. This article specifically discusses the notion of uncertainty to have an “ebb and flow”20(p236) in which the psychological evaluation of uncertainty moves in concert with situational experiences. Parry20 and Brown et al23 both described the feeling of uncertainty as driving the survivors to cope effectively in order to continue living the life they choose.

Rising above the psychological and physical burdens of past cancer treatment and uncertain future demands time and resilience.25 Parry20(p238) further described this time as a “catalyst for profound psychological growth and changes in life outlook.” A positive outlook on life (ie, optimism) is one of the strongest coping mechanisms discussed in the narratives. Childhood cancer survivors in 12 of the studies referenced some type of positive emotion,21,25,26 including enduring optimism19,24,29,32 and a sense of determination,23,31,33,34,36 in order to acclimate. Childhood cancer survivors also discussed having a sense of presence while focusing on future goals to maintain a sense of forward propulsion.20,23,24,28,31–33 One study participant commented, “Knowing that I have the rest of my life to look forward to is a pretty big hope thing.”24(p319) Others looked to the role of faith or spirituality as a means of effective management.20,32,35

Along with positive ambitions, survivors sought physical health goals to combat uncertain futures.22,23,34–36 Acknowledging their vulnerabilities and taking proactive steps toward minimizing them allow for a sense of control and freedom from the unknown. Others discussed the desire and effort taken to improve their bodily self-concept, including a focus on function.22 Survivors were noted to increase health vigilance30 and to reduce risky behaviors23,26,28 as proactive steps toward present and the future well-being.

Finally, one of the most unforeseen strategies used to cope with survivorship was the willingness of childhood cancer survivors to give back to others.19,21,23,30–32,35 This philanthropic attitude was consistent throughout the narratives, emitting a sense of leadership and perseverance. One survivor stated, “As a child, because I was really sick, I developed a learning disability. That’s why I want to contribute to special education. I now understand how to help them learn. I want to enrich their lives.”19(p159) Another survivor simply stated she aspired “to become someone who can be a joy to other people.”32(p1050) Finding meaning in life by giving back to others may help to ground these experiences into something more tangible and provide a useful resource to draw on when managing an uncertain future.24,26

The Survivors' Experience of Forced Enlightenment

Across the 4 metaphors, the qualitative narratives demonstrate 3 essential concepts within the childhood cancer survivorship experience: (1) recognition of wisdom gained, (2) acknowledgment of vulnerabilities, and (3) actions taken to manage present and future. Together these concepts make up the global theme of “Forced Enlightenment.” This phrase is used as a way to communicate the idea that survivorship status indicates a sense of enlightenment in which it reflects the accelerated life experiences that these individuals have encountered during their cancer treatment. The application of the term “forced” is to acknowledge that attaining the identity of a cancer survivor is not by choice.

The concept of wisdom gained can be noted in the way that survivors discuss how the cancer experience has impacted their view on life and their self-concept. In the metaphor of “Transcendence,” the survivors discuss the progression of their identity, whereas in “Fortifying Bonds” they describe the importance and ability to connect with others. An improved understanding of how bodies function and the progression of chronic disease can be seen in “Lingering Shadows.” Lastly, the metaphor of “Ongoing Acclimation” describes wisdom gained in the sense of how to manage stressors in life and how to identify personal priorities.

The acknowledgment of personal vulnerabilities is central to “Lingering Shadows”; however, it can also be identified throughout the other 3 metaphors. In “Transcendence” and “Ongoing Acclimation,” holding the identity as a cancer survivor contributes to a sense of stigma and susceptibility to be seen as different in the eyes of others. This is further reflected in “Fortifying Bonds” as survivors note the impact that the entire cancer experience had on building and maintaining relationships with others, including family members. To an extent, narratives from the participants also suggest that the cancer experience increased the vulnerabilities of their families, with particular regard to financial stability during and after treatment. Finally, the recognition of an uncertain future points to the tenuous nature of the lifelong status as a survivor.

Contained within all 4 metaphors are various actions taken by the childhood cancer survivors to manage their posttreatment experience. From employing a new perspective on life in “Transcendence” to working on repairing weakened relationships with others in “Fortifying Bonds,” the survivors speak to controlling their present in order to direct their future. Particularly in the metaphor “Ongoing Uncertainty,” coping tactics include maintaining an optimistic outlook, prioritizing physical health, and giving back to others. Of note, not all of the strategies may be considered positive coping strategies. Examples of negative coping strategies include the focus on “otherness,” negative self-concept, and personal limitations discussed in “Lingering Shadows,” as well as the avoidance behaviors referenced in the “Ongoing Acclimation” and “Transcendence” metaphors.

Discussion

This qualitative metasynthesis found that childhood cancer survivors demonstrate 3 essential concepts in the survivorship experience, which include the recognition of wisdom gained from the cancer experience, the acknowledgment of personal vulnerabilities, and the specific actions taken to direct control in posttreatment life. These concepts are supported by the 4 metaphors extracted from the synthesized translations. Taken together, the global theme of forced enlightenment emerged as a new way to understand the childhood cancer survivorship experience.

The theme of forced enlightenment draws from the complexities of the posttreatment existence. This state of being is well described in the idea of dualities, by which the survivors actively strive to move away from their cancer experience while they are simultaneously unable to fully remove the ties that bind them to it.7 This idea is the central theme to the 2009 Cantrell and Conte24 article, but also echoes throughout each of the central concepts of forced enlightenment. The idea of dualities can also be noted during the active treatment period. An exhaustive metasynthesis published by Kim et al37 found similar results in the general experiences of adolescents and young adults living with cancer. Although the term “duality” is not discussed exclusively, references to them are found in the discussion of the struggle to fill developmental roles and the finding that individuals “sense of being different, and desire to feel normal and belonged.”37(p47) These sentiments continue into the survivorship experience as the survivors describe the integration of the cancer experience with their identity and the strategies used to manage the dualities they encounter in the metaphors of “Transcendence” and “Ongoing Acclimation.”

Beyond the recognition of this paradox, themes related to posttraumatic growth directly parallel the central concepts supporting the experience of forced enlightenment. Posttraumatic growth has been used in association with numerous investigations of health, including chronic disease and historical trauma.38,39 The concept of posttraumatic growth was first cited in 1996 by Tedeschi and Calhoun,40(p457) who stated that “the recognition of one’s vulnerability can lead to more emotional expressiveness, willingness to accept help, and therefore a utilization of social supports that had previously been ignored.” In this metasynthesis, each of the 4 metaphors showcases the ways in which survivors apply this definition of posttraumatic growth to their survivorship experience. Gianinazzi et al41 found that it was the childhood cancer survivors with the shortest time removed from diagnosis and treatment who showed the most posttraumatic growth, possibly reflecting a normalization effect as time passes. This is an intriguing conclusion when paired with the findings of Signorelli et al,42 who identified a correlation between greater length of time since entering survivorship and a decrease in survivors’ engagement with and knowledge of late effects.

One factor that may impact growth after cancer treatment includes the transition from the focused care received during the active treatment phase to a model of long-term follow-up care.43 Long-term follow-up rates may be impacted by cancer diagnosis, age, and insurance status at diagnosis.44 Consistent care after treatment is critical to managing the vulnerabilities and feelings of uncertainty discussed in metaphor “Lingering Shadows,” as well as promoting long-term engagement to support the positive coping strategies of “Ongoing Acclimation.” The application of survivorship care models could help guide this transition as well as promote continued growth and well-being.43 Examples include a cancer center care model, a primary care provider model, and a shared-care model.43,45

Similarly, a focus on health-related quality of life (HRQOL) could further inform survivorship care models. Findings from a qualitative systematic review examining HRQOL in survivors of childhood cancer identified similar themes to this metasynthesis, including the feelings of “Ongoing Uncertainty” and changes in physical and psychological identity in the posttreatment period.46 Addressing these concerns through patient-centered survivorship care by prioritizing HRQOL in addition to preventing cancer recurrences may support resilience and informing adaptive strategies in the transition to survivor.47

Staying true to the experiences of childhood cancer survivors, it is important to note that although this metasynthesis provides general conclusions, these may not be applicable to all survivorship scenarios. All life experiences are distinct to the individual, regardless of age or time frame from the occurrence. As candidly stated by a childhood cancer survivor in Prouty and colleagues’21(p148) qualitative study, “The one thing I want the community to understand is that people who have had cancer have all had a unique experience. They are not all the same, but they are all unique, and that uniqueness needs to be discussed and talked about just like anything else.”

Overall, the findings from this metasynthesis reflect survivorship in pediatric oncology as a dynamic concept, one that is as much of a personal experience as one that is shared among a community. The transition into survivorship may be considered a passage, defined as a “movement through time and space punctuated by critical points and events for passage to the next place, state, and phase in the continuum of cancer care.”48(p152) This definition reinforces an explanation provided by Mullan49 that the cancer experience does not end with survivorship, but rather reflects an extension into a new season. The global theme of forced enlightenment provides a new perspective to understand the relationships between the complex nature of intensely striving for continued survival and the growth that may occur in the season of survivorship.

Limitations

We acknowledge that despite our best efforts it is possible that the search strategy used to attain articles for this metasynthesis may not have retrieved all applicable studies meeting our inclusion criteria. The studies that were included span a time frame of 20 years, in which the treatments and care for childhood cancer and survivors have evolved. Therefore, attention should be given to the impact of differing treatments on survival experiences. A single reviewer completed the primary quality assessment, which may contribute to bias. Further, although the CASP tool assisted with appraising each article’s rigor, the tool was created as an educational checklist and not a scoring guide.17 In addition, completing a metasynthesis adds layers of interpretation. To combat this, the authors sought to present an idiographic generalization that remains close to the data retrieved.13

A final consideration should be given to the application of these results in low- and middle-income nations as this synthesis is based on qualitative findings solely from high-income countries. Thus, these findings may not translate to pediatric cancer populations across all nations, and further investigation of survivors’ experiences throughout international contexts could provide critical perspective. Each of these limitations may impact the transferability and dependability of the results.

Implications for Nursing

The results from this qualitative metasynthesis can be used as a foundation to further question the important aspects of survivorship and therefore help to reinforce the needs that can be addressed through nursing care. Further qualitative exploration directed at exploring one of the metaphors or central concepts identified in this metasynthesis may provide rich narratives to help understand the survivorship experience of forced enlightenment in a deeper way. In valuing the experiential reports from survivors themselves, qualitative studies directed at younger subjects as opposed to family proxies may be beneficial to understanding if the identified metaphors and concepts are applicable to populations at varying developmental stages.

Each of the concepts identified can also be used to inform the development of specific nursing interventions. Targeting interventions to support and apply the actions described to manage the present and future of uncertainty during treatment could assist with transition to survivorship and improve long-term outcomes. For example, focusing on building physical health could promote goal setting or improve bodily self-concept as described in the metaphor of “Ongoing Acclimation.” In this metaphor, childhood cancer survivors also noted their desire and willingness to give back to others. This idea presents a unique opportunity to build an intervention directed at engaging survivors with volunteer opportunities to understand how this impacts their survivorship experience. Further, psychosocial interventions directed at the family, such as education in self-management techniques or providing support groups, could address the metaphor “Fortifying Bonds” by working toward strengthening familial relationships.50,51 Further research on the timing of these recommendations should also be assessed to improve nursing care following treatment and throughout survivorship. Starting these interventions prior to the completion of treatment may contribute to the experience of forced enlightenment and allow for positive identity growth as a survivor.

ACKNOWLEDGMENTS

The authors thank Dr Cheryl Beck for her expertise and guidance in developing this article.

References

1. Howlader N, Noone AM, Krapcho M, et al. SEER Cancer Statistics Review, 1975–2014. Bethesda, MD: National Cancer Institute; 2018. https://seer.cancer.gov/csr/1975_2014/. Accessed October 13, 2018.
2. Phillips SM, Padgett LS, Leisenring WM, et al. Survivors of childhood cancer in the United States: prevalence and burden of morbidity. Cancer Epidemiol Biomarkers Prev. 2015;24(4):653–663.
3. Nugent BD, Moore A, Costello A, Lewarchik AMW, Tersak JM. Partnering to optimize care of childhood cancer survivors. J Fam Pract. 2017;66(4):E1–E6.
4. Late and long-term effects of cancer treatment on children. https://www.cancer.org/cancer/cancer-in-children/late-effects.html. Accessed October 17, 2018.
5. Arpaci T, Kilicarslan Toruner E. Assessment of problems and symptoms in survivors of childhood acute lymphoblastic leukaemia. Eur J Cancer Care. 2016;25(6):1034–1043.
6. Shepherd EJW, Woodgate RL. Cancer survivorship in children and young adults: a concept analysis. J Pediatr Oncol Nurs. 2010;27(2):109–118.
7. de Oliveira RAA, da Conceição VM, Araujo JS, Zago MMF. Concept analysis of cancer survivorship and contributions to oncological nursing. Int J Nurs Pract. 2018;24(1).
8. Castellano-Tejedor C, Blasco-Blasco T, Pérez-Campdepadrós M, Capdevila L. The hidden sufferers: parental reactions to childhood cancer during treatment and at survival. Span J Psychol. 2017;20:E29.
9. Turner-Sack AM, Menna R, Setchell SR, Maan C, Cataudella D. Psychological functioning, post-traumatic growth, and coping in parents and siblings of adolescent cancer survivors. Oncol Nurs Forum. 2016;43(1):48–56.
10. Findler L, Dayan-Sharabi M, Yaniv I. The overlooked side of the experience: personal growth and quality of life among grandparents of children who survived cancer. J Fam Soc Work. 2014;17(5):418–437.
11. Leisenring WM, Mertens AC, Armstrong GT, et al. Pediatric cancer survivorship research: experience of the Childhood Cancer Survivor Study. J Clin Oncol. 2009;27(14):2319–2327.
12. Cox CL, Zhu L, Ojha RP, et al. The unmet emotional, care/support, and informational needs of adult survivors of pediatric malignancies. J Cancer Surviv. 2016;10(4):743–758.
13. Sandelowski M, Barroso J. Handbook for Synthesizing Qualitative Research. New York, NY: Springer; 2007.
14. Paterson B. Metasynthesis. In: Beck CT, ed. Routledge International Handbook of Qualitative Nursing Research. New York, NY: Routledge; 2013:331–346.
15. Noblit GW, Hare RD. Meta-Ethnography: Synthesizing Qualitative Studies. Newbury Park, CA: Sage; 1988.
16. Atkins S, Lewin S, Smith H, Engel M, Fretheim A, Volmink J. Conducting a meta-ethnography of qualitative literature: lessons learnt. BMC Med Res Methodol. 2008;8:21.
17. CASP Qualitative Checklist. https://casp-uk.net/wp-content/uploads/2018/03/CASP-Qualitative-Checklist-2018_fillable_form.pdf. Accessed September 23, 2018.
18. Children’s Oncology Group. Types of childhood cancer. https://www.childrensoncologygroup.org/index.php/typescancer. Accessed October 17, 2018.
19. Karian VE, Jankowski SM, Beal JA. Exploring the lived-experience of childhood cancer survivors. J Pediatr Oncol Nurs. 1998;15(3):153–162.
20. Parry C. Embracing uncertainty: an exploration of the experiences of childhood cancer survivors. Qual Health Res. 2003;13(2):227–246.
21. Prouty D, Ward-Smith P, Hutto CJ. The lived experience of adult survivors of childhood cancer. J Pediatr Oncol Nurs. 2006;23(3):143–151.
22. Drew S. ‘Having cancer changed my life, and changed my life forever’: survival, illness legacy and service provision following cancer in childhood. Chronic Illn. 2007;3(4):278–295.
23. Brown C, Pikler VI, Lavish LA, Keune KM, Hutto CJ. Surviving childhood leukemia: career, family, and future expectations. Qual Health Res. 2008;18(1):19–30.
24. Cantrell MA, Conte TM. Between being cured and being healed: the paradox of childhood cancer survivorship. Qual Health Res. 2009;19(3):312–322.
25. Enskär K, Berterö C. Young adult survivors of childhood cancer; experiences affecting self-image, relationships, and present life. Cancer Nurs. 2010;33(1):E18–E24.
26. Jones BL, Volker DL, Vinajeras Y, Butros L, Fitchpatrick C, Rossetto K. The meaning of surviving cancer for Latino adolescents and emerging young adults. Cancer Nurs. 2010;33(1):74–81.
27. Doukkali EB, Winterling J, Eriksson LE, Lampic C, Hagström AS, Wettergren L. Adolescents’ and young adults' experiences of childhood cancer: descriptions of daily life 5 years after diagnosis. Cancer Nurs. 2013;36(5):400–407.
28. Lehmann V, Grönqvist H, Engvall G, et al. Negative and positive consequences of adolescent cancer 10 years after diagnosis: an interview-based longitudinal study in Sweden. Psychooncology. 2014;23(11):1229–1235.
29. Phillips F, Jones BL. Understanding the lived experience of Latino adolescent and young adult survivors of childhood cancer. J Cancer Surviv. 2014;8(1):39–48.
30. Cantrell M, Conte TM. From chemo to college: the college experience of childhood cancer survivors. J Pediatr Oncol Nurs. 2016;33(5):329–338.
31. Cheng Y-C, Huang C-Y, Wu W-W, et al. The lived experiences of aboriginal adolescent survivors of childhood cancer during the recovering process in Taiwan: a descriptive qualitative research. Eur J Oncol Nurs. 2016;22:78–84.
32. Yi J, Kim MA, An S. The experiences of Korean young adult survivors of childhood cancer: a Photovoice study. Qual Health Res. 2016;26(8):1044–1054.
33. Foster RH, Brouwer AM, Dillon R, Bitsko MJ, Godder K, Stern M. “Cancer was a speed bump in my path to enlightenment”: a qualitative analysis of situational coping experiences among young adult survivors of childhood cancer. J Psychosoc Oncol. 2017;35(4):377–392.
34. Kim Y. Exploration of life experiences of positive growth in long-term childhood cancer survivors. Eur J Oncol Nurs. 2017;30:60–66.
35. Zamora ER, Yi J, Akter J, Kim J, Warner EL, Kirchhoff AC. ‘Having cancer was awful but also something good came out’: post-traumatic growth among adult survivors of pediatric and adolescent cancer. Eur J Oncol Nurs. 2017;28:21–27.
36. Kim Y, Lee K-S, Koh K-N. Difficulties faced by long-term childhood cancer survivors: a qualitative study. Eur J Oncol Nurs. 2018;36:129–134.
37. Kim B, White K, Patterson P. Understanding the experiences of adolescents and young adults with cancer: a meta-synthesis. Eur J Oncol Nurs. 2016;24:39–53.
38. Bostock L, Sheikh AI, Barton S. Posttraumatic growth and optimism in health-related trauma: a systematic review. J Clin Psychol Med Settings. 2009;16(4):281–296.
39. Schubert CF, Schmidt U, Rosner R. Posttraumatic growth in populations with posttraumatic stress disorder—a systematic review on growth-related psychological constructs and biological variables. Clin Psychol Psychother. 2016;23(6):469–486.
40. Tedeschi RG, Calhoun LG. The Posttraumatic Growth Inventory: measuring the positive legacy of trauma. J Trauma Stress. 1996;9(3):455–471.
41. Gianinazzi ME, Rueegg CS, Vetsch J, et al. Cancer’s positive flip side: posttraumatic growth after childhood cancer. Support Care Cancer. 2016;24(1):195–203.
42. Signorelli C, Wakefield CE, Fardell JE, et al. The impact of long-term follow-up care for childhood cancer survivors: a systematic review. Crit Rev Oncol Hematol. 2017;114:131–138.
43. Kinahan KE, Sanford S, Sadak KT, Salsman JM, Danner-Koptik K, Didwania A. Models of cancer survivorship care for adolescents and young adults. Semin Oncol Nurs. 2015;31(3):251–259.
44. Welch JJG, Kenney LB, Hirway P, et al. Understanding predictors of continued long-term pediatric cancer care across the region: a report from the Consortium for New England Childhood Cancer Survivors. Pediatr Blood Cancer. 2017;64(10).
45. Hudson MM, Hester A, Sweeney T, et al. A model of care for childhood cancer survivors that facilitates research. J Pediatr Oncol Nurs. 2004;21(3):170–174.
46. Nightingale CL, Quinn GP, Shenkman EA, et al. Health-related quality of life of young adult survivors of childhood cancer: a review of qualitative studies. J Adolesc Young Adult Oncol. 2011;1(3):124–132.
47. Institute of Medicine, National Research Council, Hewitt M, Greenfield S, Stovall E, eds. In: From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press; 2006.
48. Wood SK. Transition to cancer survivorship: a concept analysis. ANS Adv Nurs Sci. 2018;41(2):145–160.
49. Mullan F. Seasons of survival: reflections of a physician with cancer. N Engl J Med. 1985;313(4):270–273.
50. Peek G, Melnyk BM. Coping interventions for parents of children newly diagnosed with cancer: an evidence review with implications for clinical practice and future research. Pediatr Nurs. 2010;36(6):306–313.
51. Gunter MD. Reducing uncertainty in families dealing with childhood cancers: an integrative literature review. Pediatr Nurs. 2018;44(1):21–37.
Keywords:

Cancer survivors; Childhood neoplasms; Life experiences; Metasynthesis; Pediatric nursing; Pediatrics; Qualitative research

Supplemental Digital Content

Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.