Nonsuicidal Self-Injury in Adolescent and Emerging Adult Childhood Cancer Survivors: A First Exploration

Abstract

Purpose:

This study examines nonsuicidal self-injury (NSSI) in adolescent and emerging adult survivors of childhood cancer, aiming to gain a first understanding of the phenomenon, its relation to general and cancer-specific functioning, and the stability of NSSI engagement over time.

Methods:

Dutch-speaking survivors (n = 125, age range = 14–25 years) participated in the first three annual waves of the Longitudinal Identity Study of Childhood Cancer Survivors study. Descriptive characteristics of lifetime NSSI were calculated. Multivariate analysis of variance (MANOVA) and χ²-analyses were performed to examine differences in demographic and clinical characteristics between survivors with and without lifetime NSSI. To assess differences in general and cancer-specific functioning between survivors with and without lifetime NSSI, two MANOVA analyses were performed. Finally, prevalence rates of current NSSI across the three waves were calculated, followed by χ²-analyses to explore differences in current NSSI over time.

Results:

The prevalence and characteristics of lifetime NSSI engagement resembled those in the general population. Although demographic and clinical characteristics were unrelated to NSSI engagement, several meaningful differences were found in both general and cancer-specific functioning between survivors with and without NSSI. Survivors with lifetime NSSI experienced more depressive symptoms and difficulties with identity formation (i.e., lower levels of identity synthesis and higher levels of identity confusion). In addition, they experienced more post-traumatic stress symptoms and cancer-related worries, and identified less as a “cancer patient.”

Conclusions:

This study provides a first understanding of NSSI engagement in survivors of childhood cancer, mapping the characteristics of NSSI and its associations with both general and cancer-specific functioning.

Background

Due to medical advances, many children with childhood cancer now survive, resulting in a growing population of childhood cancer survivors.¹ Nevertheless, childhood cancer can be associated with long-lasting physical and psychological problems,² which may affect how survivors transition to adulthood.³ Although most survivors function well, a significant subgroup faces challenges in both general and cancer-specific functioning.²

Regarding general functioning, research has identified an elevated risk for depressive symptoms among survivors.⁴ Furthermore, long-term survivors face an increased risk of physical limitations due to the cancer (treatments).⁵ In addition, the cancer may affect survivors’ identity formation. One study reported that survivors tended to explore less identity alternatives compared to controls.⁶ However, a recent study using the same dataset as this study found no difference in identity between survivors and controls.⁷ Nevertheless, this study did suggest that some survivors might be more vulnerable for identity difficulties than others.

Regarding cancer-specific functioning, post-traumatic stress symptoms (PTSS) are more prevalent among survivors compared to the general population.⁸ In addition, they frequently report cancer-related worries, such as fear of cancer recurrence.⁹ Survivors also grapple with integrating their cancer experience into their identity,¹⁰ particularly adolescent and emerging adult survivors who face the normative developmental task of identity formation. Although integrating the cancer experience can be beneficial to a certain extent, high levels of illness centrality (i.e., the extent to which the cancer experience is central in one’s identity) have been linked to adverse health outcomes.¹¹ In addition, individuals with a cancer experience can identify with several cancer identities: “survivor,” “patient,” “victim,” and “person who has had cancer.”¹² Most individuals identify with multiple cancer identities, with “survivor” being the most prevalent.¹² Given the aforementioned challenges in both general and cancer-specific functioning, it is essential to investigate how psychological distress can manifest itself in survivors.

In the general population, nonsuicidal self-injury (NSSI) has been identified as an indicator of psychological distress.¹³ NSSI refers to deliberate and direct destruction of one’s body tissue without suicidal intent.¹⁴ The most frequently reported method of NSSI is cutting oneself and occurs most often on the arms, legs, and/or stomach.¹⁵ NSSI is quite common in the general population, particularly in adolescence and emerging adulthood, with lifetime prevalence ranging from 13% to 17%.¹⁶ However, NSSI appears to decrease across the lifespan.¹⁶ Research on sex differences regarding the prevalence of NSSI is quite inconsistent. A previous meta-analysis concluded that NSSI was more prevalent among women than men; however, this was only a small effect.¹⁷ NSSI has been linked to maladaptive functioning such as depressive symptoms,¹⁸ poorer physical functioning,¹⁹ identity difficulties,²⁰ PTSS,²¹ and repetitive negative thinking.²² The most reported function of NSSI is to regulate negative emotions,²³ which can be understood as an intrapersonal, negative reinforcement function within the model of Nock.¹⁴

Studying NSSI in survivors offers valuable insights into their psychological functioning. First, NSSI is particularly prevalent in the general population during adolescence and emerging adulthood.¹⁶ Second, a significant subgroup of survivors show increased vulnerability to psychological distress,² including suicidal ideation and attempts,²⁴ for which NSSI is a robust predictor in the general population.²⁵ Third, survivors face additional challenges as they transition into adulthood.³ For some, NSSI may serve as a coping mechanism for the psychological distress associated with their survivorship experiences. However, to our knowledge, there has been no previous research on NSSI in survivors. Therefore, this study aims to provide a first understanding of NSSI in survivors.

Research Objectives

Objective 1

This study focused on the lifetime and current prevalence and characteristics of NSSI among survivors, including age of onset, applied methods, and location on the body. Given the lack of previous research in survivors, no specific hypothesis was formulated.

Objective 2

Demographic (i.e., age and sex) and clinical characteristics (i.e., type of cancer diagnosis, time since diagnosis, and treatment intensity) related to lifetime NSSI in survivors were examined in this study. The association between age and NSSI was examined exploratively.¹ In line with findings in the general population¹⁷ and the heightened vulnerability in girls to psychological distress,²⁶ we expected greater NSSI engagement among female survivors. Due to the lack of previous research, no specific hypothesis was formulated regarding the association between NSSI and cancer diagnosis type or time since diagnosis. Finally, as previous research on survivors found treatment intensity to be unrelated to psychological distress,²⁷ we tentatively hypothesized that there would be no association between NSSI and treatment intensity.

Objective 3

This study investigated differences in general functioning (i.e., depressive symptoms, physical functioning, and identity formation) and cancer-specific functioning (i.e., PTSS, cancer-related worries, illness centrality, and self-identity after cancer) between survivors with and without lifetime NSSI. Regarding general functioning, we expected survivors with NSSI to experience more depressive symptoms, consistent with findings in the general population.¹⁸ Second, poor physical functioning is a risk factor for suicidal thoughts and behaviors in adult survivors.^24,28 As NSSI is an important stepping stone to suicidality and is linked to worse physical functioning in the general population,^19,25 we hypothesized poorer physical functioning among survivors with NSSI. Third, consistent with findings in the general population,²⁰ we expected survivors with NSSI to report more identity confusion and less identity synthesis. Regarding cancer-specific functioning, we hypothesized that survivors with NSSI would report more PTSS, in line with findings in the general population.²¹ Second, cancer-related worries have been linked to maladaptive health behaviors and psychological distress.²⁹ As NSSI and worrying are related in the general population,²² we expected more cancer-related worries among survivors with NSSI. Third, no hypothesis was forwarded regarding illness centrality and self-identity after cancer due to the lack of prior research.

Objective 4

Change and stability of current NSSI across 2 years were explored, anticipating patterns similar to those in the general population.³⁰ Potential patterns include survivors who consistently did not engage in NSSI; survivors who consistently engaged in NSSI; survivors who have engaged in NSSI at some point (i.e., T1 or T2) but have stopped (i.e., T2 or T3); and survivors who initially did not engage in NSSI (i.e., T1 or T2) but started later on (i.e., T2 or T3). However, additional patterns of NSSI engagement could emerge. Given the lack of research on NSSI in survivors, this objective was exploratory in nature.

Method

Participants and design

This study used data from the three first annual waves (2018–2020) of the Longitudinal Identity Study of Childhood Cancer Survivors study. Dutch-speaking childhood cancer survivors aged 14–25 years, treated at the pediatric oncology department of the University Hospitals Leuven (Belgium), were invited to participate. Out of 435 eligible survivors, 125 participated and provided informed consent at T1 (2018); 100 and 93 survivors participated at T2 (2019) and T3 (2020), respectively. Parental consent was obtained for minors. The Ethics Committee Research of KU Leuven (S60535) approved the study.

At T1, survivors’ mean age was 19.54 years (SD = 2.71) and 47% were male. Mean time since diagnosis was 11.10 years (SD = 5.45). Several cancer types could be distinguished: leukemia (30%), lymphoma (14%), brain tumor (19%), bone and soft tissue tumor (16%), and other types of cancer (20%). A small percentage of survivors did not undergo treatment (1%) or received a short-term treatment such as surgery (12%); 48% of survivors underwent a long-term treatment such as chemotherapy, radiotherapy, or stem cell transplantation; and 39% received combined treatment, including at least one long-term treatment.

Measures

NSSI

NSSI was measured using five items based on the Self-Injury Questionnaire–Treatment Related,³¹ assessing lifetime and current NSSI, methods of NSSI, age of onset, and location on the body.

Identity synthesis and confusion

Participants completed the 12-item identity subscale from the Erikson Psychosocial Stage Inventory.³² Identity synthesis and identity confusion are measured by six items each, with a 5-point Likert scale from 1 (strongly disagree) to 5 (strongly agree), where higher scores indicate higher synthesis or confusion. Cronbach’s alpha was 0.76 for synthesis and 0.71 for confusion.

Depressive symptoms

The 12-item version of the Center for Epidemiological Studies Depression Scale was used.³³ Participants indicated the frequency of depressive symptoms during the week before assessment. A 4-point Likert scale from 0 (seldom) to 3 (most of the time or always) was used. A higher total score indicated more depressive symptoms. Cronbach’s alpha was 0.86.

Physical functioning

To assess limitations in daily activities related to physical functioning, the 10-item physical functioning subscale from the Short Form Health Survey was used.³⁴ Participants rated items on a 3-point Likert scale from 1 (no, not limited at all) to 3 (yes, limited a lot). Items were reversed so that a higher total score reflected better physical functioning. Cronbach’s alpha was 0.87.

Post-traumatic stress symptoms

Participants completed the 13-item Dutch version of the Children’s Revised Impact of Event Scale.³⁵ Responses were recorded on a 4-point Likert scale from 0 (not at all) to 3 (often), with higher scores indicating more PTSS. Participants were instructed to complete the questionnaire while keeping their cancer experience in mind. Cronbach’s alpha was 0.87.

Cancer-related worries

To assess cancer-related worries, the following four items were used³⁶: “I worry about my cancer coming back,” “I am sometimes concerned that symptoms I experience may indicate the recurrence of cancer,” “I worry about future diagnostic tests,” and “I worry about another type of cancer.” Participants rated the items on a 5-point Likert scale from 1 (completely disagree) to 5 (completely agree). Higher scores reflected more fear of cancer recurrence. Cronbach’s alpha was 0.86.

Illness centrality

The following single item was used to assess illness centrality¹¹: “To what degree is your cancer experience a central part of your identity or self-concept?” A 5-point Likert scale was used from 0 (not at all) to 4 (completely).

Self-identity after cancer

Participants were asked to complete four items,¹² using a 5-point Likert scale from 1 (not at all) to 5 (completely): “When you think about yourself in relation to your cancer, how much does each of these phrases describe you?: (1) a victim of cancer, (2) a cancer patient, (3) a person who has had cancer, and (4) a survivor.”

Medical information

Information on cancer type, treatment intensity, and time since diagnosis was provided by the survivors’ medical records.

Plan of analyses

IBM Statistics SPSS (Version 29) was used. The study was preregistered at https://osf.io/c7nyv/?view_only=7d8c379f84ae458bb46c89a3fe6ac31d. For objective 1, the prevalence of lifetime and current NSSI at T1 was calculated. Mean age of NSSI onset and the frequencies of NSSI methods and locations on the body were computed. For objective 2, a multivariate analysis of variance (MANOVA) was conducted to compare survivors with and without lifetime NSSI on age and time since diagnosis. Differences in sex (1 = men and 2 = women), cancer diagnosis (1 = leukemia, 2 = lymphoma, 3 = brain tumor, 4 = bone and soft tissue tumor, and 5 = other), and treatment intensity (1 = no treatment, 2 = single, short-term treatment, 3 = single, long-term treatment, and 4 = combined treatment with at least one long-term treatment) between survivors with and without lifetime NSSI were examined through χ²-analyses. For objective 3, occasional missing values in the general and cancer-specific variables were estimated using Expectation–Maximization. A nonsignificant Little’s missing completely at random test suggested that the missing values could be reliably estimated [χ²(29) = 31.75, p = 0.33]. Two MANOVA analyses were performed to examine mean differences in general functioning and in cancer-specific functioning between survivors with and without lifetime NSSI. For objective 4, the prevalence of current NSSI at the three waves was calculated. In addition, χ²-analyses were conducted to examine differences in current NSSI at the three waves.

Results

Objective 1: Prevalence and descriptive characteristics of NSSI

At T1, lifetime prevalence of NSSI was 14.5% and current prevalence of NSSI was 4%. Mean age of NSSI onset was 15.3 years (SD = 3.22). Methods of NSSI were carving one’s skin (44.4%), cutting skin (38.9%), hitting oneself (38.9%), scratching skin (27.8%), picking oneself with a sharp object (27.8%), head banging (27.8%), and other methods (5.6%). Half of the survivors (50%) used more than one method of NSSI. Regarding location of NSSI, most common areas were the arms, hands, and fingers (94.4%), followed by head, neck, and throat (27.8%); legs, feet, and toes (22.2%); and the torso, belly, and buttocks (5.6%).

Objective 2: Demographic and clinical characteristics of NSSI

The MANOVA, with age and time since diagnosis as dependent variables and the presence/absence of lifetime NSSI as the independent variable, did not show significant multivariate differences [Wilk’s Lambda = 0.996, F(2,120) = 0.265, p = 0.767, and η_p² = 0.004]. In addition, the χ²-analyses indicated no significant associations between the presence/absence of lifetime NSSI and sex [χ²(1) = 1.183, p = 0.277], type of diagnosis [χ²(4) = 4.348, p = 0.361], and treatment intensity [χ²(3) = 1.360, p = 0.715]. An overview of the descriptive statistics can be found in Tables 1 and 2.

Table 1.

Descriptive Statistics of Age and Age at Diagnosis

	Total sample	Lifetime NSSI	No lifetime NSSI
Age	19.54 (2.71)	19.33 (2.79)	19.57 (2.72)
Time since diagnosis	11.10 (5.49)	11.83 (4.63)	10.97 (5.59)

Note: Means before parentheses and standard deviation between parentheses. NSSI, nonsuicidal self-injury.

Table 2.

Frequencies for Sex, Cancer Diagnosis, and Treatment Type

	Total sample	Lifetime NSSI	No lifetime NSSI
Sex	n = 120	n = 17	n = 103
Men	57 (47%)	6 (11%)	51 (89%)
Women	63 (53%)	11 (18%)	52 (82%)
Cancer diagnosis	n = 124	n = 18	n = 106
Leukemia	38 (30%)	2 (5%)	36 (95%)
Lymphoma	20 (14%)	5 (21%)	19 (79%)
Brain tumor	18 (19%)	4 (22%)	14 (78%)
Bone and soft tissue tumor	24 (16%)	4 (17%)	20 (83%)
Other types	24 (20%)	5 (21%)	19 (79%)
Treatment type	n = 122	n = 18	n = 104
No treatment	1 (1%)	0 (0%)	1 (100%)
Single short-term treatment	15 (12%)	3 (20%)	12 (80%)
Single long-term treatment	59 (48%)	10 (17%)	49 (83%)
Combination of multiple treatments with at least one long-term treatment	47 (39%)	5 (11%)	42 (89%)

Objective 3: General and cancer-specific functioning

Regarding general functioning, the MANOVA indicated significant multivariate differences between survivors with and without lifetime NSSI [Wilk’s Lambda = 0.817, F(4,119) = 6.685, p < 0.001, η_p² = 0.183]. Follow-up univariate analyses (Table 3) showed that, for depressive symptoms and identity confusion, survivors with NSSI scored higher. For identity synthesis, the reversed pattern emerged: survivors with NSSI scored lower.

Table 3.

Univariate ANOVA and Descriptive Statistics

	Total sample	Lifetime NSSI (14.5%)	No lifetime NSSI	F-value	η_p²
Depressive symptoms	7.68 (6.09)	13.88 (6.13)	6.62 (5.44)	26.39^***	0.18
Physical functioning	27.64 (3.54)	26.55 (4.83)	27.82 (3.27)	1.98	0.02
Identity synthesis	3.79 (0.63)	3.39 (0.52)	3.86 (0.63)	9.06^**	0.07
Identity confusion	2.49 (0.67)	3.01 (0.63)	2.40 (0.64)	13.96^***	0.10
PTSS	12.93 (8.21)	18.56 (8.05)	11.88 (7.84)	11.07^**	0.08
Cancer-related worries	9.00 (4.35)	11.22 (4.57)	8.61 (4.24)	5.69^*	0.05
Illness centrality	1.74 (1.08)	1.67 (1.03)	1.75 (1.09)	0.10	0.00
Self-identity after cancer
Victim	2.32 (1.35)	2.44 (1.15)	2.30 (1.38)	0.17	0.00
Patient	2.10 (1.24)	1.56 (0.92)	2.20 (1.26)	4.28^*	0.03
Person who has had cancer	4.33 (1.09)	4.61 (0.78)	4.28 (1.13)	1.40	0.01
Survivor	3.31 (1.54)	3.61 (1.65)	3.26 (1.52)	0.78	0.01

Note: η_p² = eta squared. Standard deviation between parentheses. PTSS, post-traumatic stress symptoms.

p < 0.05.

p < 0.01.

***

p < 0.001.

Regarding cancer-specific functioning, the MANOVA indicated significant multivariate differences between survivors with and without lifetime NSSI [Wilk’s Lambda = 0.817, F(7,116) = 3.703, p = 0.001, η_p² = 0.183]. Follow-up univariate analyses (Table 3) showed that survivors with NSSI scored higher on PTSS and cancer-related worries. Survivors with NSSI identified less with the self-identity “cancer patient.”

Objective 4: Change and stability in NSSI

The prevalence of current NSSI was 4% at T1 and 2% at T2 (i.e., 1 year later). At T3 (i.e., 2 years later), no survivor reported engagement in NSSI. χ²-analyses indicated significant associations between current NSSI at T1 and T2 [χ²(1) = 10.996, p < 0.001]. Of the five survivors who engaged in NSSI at T1, three survivors reported to have stopped at T2, one dropped out, and one was still engaging in NSSI (Table 4).

Table 4.

Cross-Tabulation on Current NSSI in T1 and T2

	No current NSSI at T2	Current NSSI at T2	Total N
No current NSSI at T1
Count	93 (0.1)	1 (−0.7)	94
Expected count	92.1	1.9
Current NSSI at T1
Count	3 (−0.5)	1 (3.2)	4
Expected count	3.9	0.1

Note: Standardized residuals between parentheses. Cells in bold have standardized residuals equaling or exceeding |2.0|.

Discussion

This study explored NSSI in adolescent and emerging adult childhood cancer survivors, providing initial insight into the phenomenon. First, NSSI engagement in survivors appears comparable to the general population. Second, although unrelated to demographic and clinical characteristics, meaningful associations were identified with general and cancer-specific functioning.

The lifetime prevalence of NSSI (14.5%) among survivors is within the reported range in the general population (13% to 17%).¹⁶ Descriptive characteristics of NSSI in this survivor sample mirrored those observed in the general population.¹⁵ Survivors who engage in NSSI likely start with this behavior during adolescence, most frequently by carving the skin of the arms, hands, and fingers.

Contrary to expectations, demographic characteristics were unrelated to NSSI engagement. The finding that NSSI is slightly more common among women in the general population was not replicated.¹⁷ However, this lack of sex differences aligns with the mixed research regarding sex differences in the general population. One potential explanation for this finding is that both men and women may engage in NSSI as a coping mechanism, but they differ in the specific NSSI methods they use.³⁷Although age was unrelated to NSSI, examining NSSI in relation to age remains relevant, as both adolescence and emerging adulthood are characterized by an increased vulnerability to NSSI.¹⁶ However, future research is encouraged to include a broader age range to capture NSSI across development in survivors. Similar to demographic characteristics, clinical characteristics showed no association with NSSI. This aligns with previous research suggesting that clinical characteristics of cancer seem unrelated to psychological distress and suicidal ideation.^27,28,38

Regarding NSSI engagement, important associations were found in both general and cancer-specific functioning. With respect to general functioning, the findings support the idea that survivors with NSSI appear to be vulnerable to experiencing depressive symptoms and difficulties with identity formation (lower levels of identity synthesis and higher levels of identity confusion). These associations are also found in the general population,^18,20 suggesting a robust relationship that holds in this specific subpopulation as well. Contrary to expectations, NSSI engagement was unrelated to physical functioning. However, this finding aligns with prior research, which has suggested that NSSI primarily occurs to regulate negative internal psychological states.²³ With respect to cancer-specific functioning, although survivors with NSSI were less likely to identify as a “cancer patient.” they had an increased risk of PTSS and cancer-related worries, as expected. NSSI may serve as a coping mechanism for trauma-related symptoms and worries originating from their cancer experience. Taken together, findings are not only consistent with those in the general population but also indicate unique associations with cancer-specific functioning.

As prevalence rates of current NSSI were low, no firm conclusions regarding change and stability over time could be drawn. A potential selection bias could account for these findings, as baseline participation rate was low and diminished from the first to the third wave. Given the evidence of NSSI persistence from adolescence to emerging adulthood in the general population,³⁰ future research should investigate NSSI longitudinally in larger samples of survivors.

Clinical implications

Clinical practice should be attentive for NSSI in survivors, especially considering the heightened vulnerability to psychological difficulties during adolescence and emerging adulthood. Continuous monitoring and continuity of care in the transition to adulthood are essential. In addition, awareness of the association between NSSI and both general and cancer-specific psychological difficulties may help clinicians in identifying survivors at risk and understanding individual differences in NSSI engagement.

Study limitations and future directions

This study has several limitations. First, the relatively low response rate, which is common in cancer survivors studies, may have resulted in a selective sample. Second, the low prevalence of current NSSI may have reduced power, hindering the ability to detect significant effects. Future research should use larger samples to improve power and uncover potential differences in current NSSI. Third, a quantitative approach was used. Future research could benefit from a qualitative approach to deepen understanding of NSSI. Fourth, no statement can be made about the directionality of effects between NSSI and both general and cancer-specific functioning. Future longitudinal research with larger samples is needed to examine bidirectionality, as observed in general research.^18,20 Finally, it would be valuable to study NSSI and its associations with psychological functioning, specifically in survivors who are transitioning to adult care, as this transitional period can be challenging and critical for many.³⁹

Conclusion

This study highlights the importance of studying NSSI in survivors. Our findings indicated prevalence comparable to the general population and suggest that survivors engage in NSSI similar to young individuals in the general population. Associations with depressive symptoms and identity difficulties were observed, consistent with general population studies. However, beyond associations with general functioning, associations between NSSI and unique aspects of poorer cancer-specific functioning were identified, underscoring the significance of studying NSSI in survivors.

Footnotes

Acknowledgments

We especially would like to thank all individuals who participated in this study and the master thesis students who helped with data collection.

Authorship Contribution Statement

S.C. led the writing of the original manuscript, reviewed the manuscript, and conducted all analyses. L.C., J.V., E.V.L., J.L., and A.U. provided support in writing both the original and reviewed manuscript. S.P. coordinated the data collection and provided support in writing both the original and reviewed manuscript. K.L. acquired the funding of the project and provided supervision and support in writing both the original and reviewed manuscript.

Data Availability Statement

The data underlying this article will be shared upon reasonable request to the corresponding author.

Author Disclosure Statement

The authors declare that they have no conflict of interest.

Funding Information

This work was supported by Internal Funds of the Research Council KU Leuven (Grant C14/15/036 and Grant C14/21/052 to Prof. Dr. K.L.) and FWO Research Foundation Flanders, Belgium (Grant 1126418N to Dr. S.P. and Grant G0D3521N to Prof. Dr. K.L.).

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