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. Author manuscript; available in PMC: 2023 Aug 5.
Published in final edited form as: J Health Psychol. 2021 Feb 4;27(5):1176–1186. doi: 10.1177/1359105321990804

Benefit-finding among young adults with spina bifida

Tessa K Kritikos 1, Colleen Stiles-Shields 2, Jenna B Shapiro 3, Grayson N Holmbeck 1
PMCID: PMC10403805  NIHMSID: NIHMS1917412  PMID: 33541148

Abstract

The purpose of the current study was to examine benefit-finding in a sample of young adults with SB and assess relationships between demographic and medical variables and benefit-finding. Young adults with SB (N = 329), ranging in age from 18 to 30 (M = 23.44 ± 2.93), completed the Benefit-Finding Scale (BFS), a 17-item self-report questionnaire, and reported on demographic and medical information related to their SB diagnosis. Participants endorsed a range of benefits associated with living with SB. The most frequently endorsed benefits were related to personal strengths, interpersonal relationships, and life philosophy. Younger age, majority race, higher education level, and employment were significantly associated with higher BFS scores. Young adults with SB report benefits associated with their chronic condition. Future research should examine these benefits in relation to psychosocial outcomes.

Keywords: adolescent and young adult, benefit-finding, chronic conditions, myelomeningocele, spina bifida

Introduction

Health conditions place individuals at risk for psychological hardship, but they can also be an impetus for growth and positive change (Affleck and Tennen, 1996; Currier et al., 2009; Tedeschi and Calhoun, 2004). In the case of chronic illnesses, approximately 80% of individuals report finding at least one positive life change related to their chronic illness (Bellizzi et al., 2007; Sears et al., 2003; Siegel and Schrimshaw, 2000). These positive life changes most often involve change in interpersonal relationships (e.g., awareness of support from loved ones), personal growth (e.g., more patience), or life priorities and goals (e.g., better subjective understanding of what is important in life) (Affleck and Tennen, 1996). The ability to engage in benefit-finding has been identified as an important process across a wide range of medical populations, including: (1) acute events, such as renal transplants (de Vries et al., 2019) and spinal cord injuries (McMillen and Cook, 2003); (2) chronic conditions, such as type 1 diabetes (Rassart et al., 2017), rheumatoid arthritis (Danoff-Burg et al., 2006), and HIV (Littlewood et al., 2008); and (3) acute, chronic, or terminal cancers (Bower et al., 2005; Carver and Antoni, 2004; Urcuyo et al., 2005).

Benefit-finding, in its simplest form, is “finding good from bad” or seeking the “silver lining” in challenging situations (Tomich and Helgeson, 2004). It is a cognitive process that involves shifting self-perceptions, priorities, and interactions with others (Tedeschi and Calhoun, 1996). Benefit-finding has its roots in a range of theories on psychological response to threat and stress (Affleck and Tennen, 1996). Taylor’s theory of Cognitive Adaptation to Threat (1983) describes benefit-finding as a form of cognitive adaptation: individuals positively evaluate their circumstances, which reduces the negative implications, and increases their sense of control and self-esteem (Taylor, 1983). Similarly, Thompson’s Taxonomic Theory of Psychological Control Appraisals (Thompson, 1981, 1985) argues that benefit-finding reduces the aversiveness of threatening events. According to Rothbaum’s Two-Factor Model of Personal Control, benefit-finding might be considered a “secondary control” appraisal that gives individuals a sense of comfort when they have diminished personal control (Rothbaum et al., 1982). Taken together, multiple theories posit that benefit-finding can reduce some of the inherent threat that accompanies negative events via cognitive reappraisals. Through the use of these cognitive reappraisals, individuals restore or change their views of themselves, others, and the world (Affleck and Tennen, 1996). For example, individuals with rheumatoid arthritis frequently report a benefit of gratitude for support from loved ones (Danoff-Burg and Revenson, 2005). Similarly, breast cancer survivors endorse “awareness of love and support from others” and “a greater focus on priorities” as highest amongst a list of possible benefits associated with having had breast cancer (Urcuyo et al., 2005).

Benefit-finding has been identified as an important process due to its associated health and psychological outcomes in various populations. In terms of health outcomes, positive associations between benefit-finding and objective measures of physical health have been identified (Bower et al., 2009). For example, benefit-finding is associated with decreases in cortisol and increases in aspects of immune function in patients with cancer (McGregor and Antoni, 2009). Further, in survivors of motor vehicle accidents, benefit-finding is correlated with increased activity in the left frontal cortex, an area of the brain that has been associated with positive affect and enhanced immune function (Bower et al., 2009; Rabe et al., 2006). However, findings on the relationship between benefit-finding and mental health have been less consistent. On the one hand, a meta-analytic review concluded that benefit-finding was related to less depression and more positive well-being (Helgeson et al., 2006), and a study of early adolescents with type 1 diabetes found that benefit-finding was associated with lower depressive symptoms, higher perceived coping effectiveness, and better adherence (Tran et al., 2011). On the other hand, psychological findings vary by characteristics of samples, assessment measures, and timing of assessment (Bower et al., 2009). Given that trauma or significant adversity is often the catalyst of benefit-finding, this construct frequently co-occurs with severe distress (Bower et al., 2009; Tedeschi and Calhoun, 2004). As such, Bower et al. (2009) have suggested that benefit-finding is associated with the development of resources that promote adaptive responses to future stressors.

Spina bifida (SB) is a congenital defect in which the neural tube fails to close during the first month of pregnancy (Copp et al., 2015). The medical sequelae of this condition can involve structural and functional impairment to the brain, spine, extremities, bowel, and bladder (Kaufman, 2004). The psychosocial outcomes are significant as well; individuals with SB are at greater risk for internalizing and externalizing problems (Ammerman et al., 1998; Appleton et al., 1997), tend to be lonelier (Blum et al., 1991), and have greater social difficulties (Holmbeck et al., 2003, 2010). SB is distinct from other illnesses in a variety of ways, two of which have particular relevance to benefit-finding in this population.

First, unlike most of the populations with whom benefit-finding has previously been studied, individuals with SB are routinely diagnosed in utero due to modern advances in biochemical and sonographic diagnostic techniques (Copp et al., 2015; Mitchell et al., 2004). Thus, families of individuals with SB begin coping with the reality of this chronic illness and extensive medical regimen prior to birth (Mitchell et al., 2004). Also, as a chronic illness, SB is lifelong; it is not a discrete “event” or a singular medical trauma in the same way as an injury, surgery, or even a cancer diagnosis. Individuals with SB also typically endure a large number of surgeries and procedures (Copp et al., 2015), complications (Morley et al., 2020), as well as ongoing risk of morbidity and mortality (Bowman et al., 2001). Since benefit-finding has most commonly been studied as part of the adjustment to a traumatic or disruptive change in circumstances, understanding benefit-finding in the context of SB, a “stressor” that is chronic, lifelong, and medically complex, may illuminate how benefit-finding functions in a more continuous circumstance.

Second, individuals with SB have varied symptom profiles with overlapping features of physical disabilities, intellectual impairments, and chronic illnesses (Stiles-Shields et al., 2019). Although benefit-finding has been studied in individuals with chronic illnesses and physical disabilities, to our knowledge, there is no research to date examining benefit-finding in a population with below average IQ scores, executive functioning difficulties, delays in independent functioning (Stern et al., 2018), and language difficulties (Vachha and Adams, 2003). Given that benefit-finding is a cognitively demanding process of reappraising stress, threat, and negative implications, the cognitive challenges associated with SB may diminish an individual’s engagement in benefit-finding. It is useful to know if and how benefit-finding occurs in a medical population with these types of challenges.

Despite a growing body of research highlighting vulnerabilities among individuals with SB, little research has focused on factors that may potentially enhance psychosocial functioning. Benefit-finding is one factor that has been linked to positive outcomes in a variety of medical populations, but has yet to be explored in individuals with SB. The current investigation aimed to examine benefit-finding in a sample of young adults with SB, and to assess relationships between demographic/medical variables and benefit-finding. Benefit-finding is a meta-cognitive skill, requiring abstract reasoning. Such skills may not develop until later adolescence and early adulthood (Inhelder and Piaget, 1958). Given that we wanted to examine benefit-finding in a sample that was likely to have acquired the requisite cognitive skills necessary to engage in this process, we chose to explore this construct in a young adult sample. Since this is a novel area of investigation in the literature on SB, our aims were largely exploratory. However, given prior research (Helgeson et al., 2006), we hypothesized that benefit-finding scores would be higher for women, racial/ethnic minorities, and younger (vs older) adults.

Methods

Participants

Participants were recruited nationally through Facebook and Chapter pages of the Spina Bifida Association (SBA), a national voluntary health organization for people with SB. Eligible participants: (1) had SB, (2) were between 18 and 30 years of age, and (3) were able to answer the survey questions without the assistance of others (ensuring privacy and honesty in responses, and excluding lower functioning young adults with SB). Compensation was provided to the first 150 participants via a $10 Amazon electronic gift card.

Procedure

Consistent with University Institutional Review Board (IRB) compliance and a previous national online survey conducted with individuals who have SB (Stiles-Shields and Holmbeck, 2020), participants were consented via digital waiver of documented consent before participating in the survey. Specifically, interested participants accessed a link connecting them to a detailed digital version of the study consent form. Participants were unable to proceed to the survey unless they agreed to participate by checking a “yes” box. Participants then completed the assessment. The survey was conducted anonymously to promote the likelihood of honest responses. Once the assessment was complete, participants were provided a link to initiate a different set of questions that enabled them to provide contact information for compensation while maintaining the anonymity of their assessment responses.

Participants were recruited in November and December 2019. About 470 participants were consented to participate in the study. After participants with incomplete or inaccurate data entry were removed, there were 326 participants included in the current analyses. Table 1 displays the sample characteristics. The majority of the sample was male (70.6%) and Caucasian (95.1%), which is not representative of the general SB population (CDC, 2009). The sample most often had myelomeningocele (the most severe type of SB; 53.1%), a shunt (65.3%), and a lumbar lesion level (60.1%). The sample ranged in age from 18 to 30 (M Age=23.44 ± 2.93).

Table 1.

Survey respondent demographic and medical characteristics (n = 326).

n (%)
Age, M (SD; range)  23.44 (2.92; 18–30)
Sex
 Male  230 (70.6%)
 Female    96 (29.4%)
Race/ethnicity
 African American   8 (2.5%)
 Asian   1 (0.3%)
 Caucasian  310 (95.1%)
 Hispanic/Latinx   7 (2.1%)
Highest level of education
 Some grade school   1 (0.3%)
 Grade school   5 (l.5%)
 Some high school    19 (5.8%)
 High school    37 (11.3%)
 Some college   l33 (40.8%)
 College   121 (37.1%)
 Graduate or professional courses     10 (3.1%)
Employment status
 Employed, full time   120 (36.8%)
 Employed, part time     37 (11.3%)
 Disability from work     37 (11.3%)
 Student     96 (29.4%)
 Unemployed     34 (10.4%)
 Volunteer    2 (.6%)
SB Type
 Myelomeningocele   173 (53.1%)
 Meningocele     67 (20.6%)
 Lipomeningocele     57 (17.5%)
 Lipomyelomeningocele     14 (4.3%)
 Lipoma     15 (4.6%)
Shunt present   213 (65.3%)
 With revision history   164 (77.4%)
Lesion level
 Sacral   100 (30.7%)
 Lumbar  196 (60.1%)
 Thoracic    30 (9.2%)
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M: mean; SD: standard deviation; SB: spina bifida.

Measures

Self-report assessments were administered and managed via the secure online survey platform, Qualtrics (Qualtrics, 2013), licensed and administered by Loyola University Chicago.

Demographics and medical characteristics.

Participants were asked to report the following information: age, sex, race/ethnicity, education/employment status, and SB characteristics, including: type, shunt status and type, shunt revision history, and lesion level.

Benefit-finding scale.

The Benefit-Finding Scale (BFS) is a 17-item self-report questionnaire that was originally developed for survivors of cancer (Carver and Antoni, 2004; Tomich and Helgeson, 2004) and adapted for this study for individuals with SB (e.g., “Having had breast cancer…” changed to read, “Living with Spina Bifida…”). Using a five-point Likert scale (i.e., 1 = Not at all to 5 = Extremely), respondents are queried about potential positive contributions that having a medical condition has made to their life. The BFS demonstrated acceptable reliability for the current sample (α = 0.84). None of the items had extreme skewness or kurtosis and none had 50% or more participants who responded “1 = Not at all” or “5 = Extremely.” The BFS mean score was normally distributed with skewness of −0.05 (SE = 0.14) and kurtosis of 0.09 (SE = 0.27).

Data analytic plan

We evaluated item-level responses on the BFS, examining most commonly and least commonly endorsed items on the measure, as well as means, medians, ranges, and standard deviations. Paired sample t tests were used to compare differences in mean item scores in the following way: the item with the highest mean score was compared to the item with the next highest mean score. Subsequent t-tests were conducted in order of descending mean item scores, such that once a significant p-value was yielded, that item was used for comparison with items with lower mean scores. To account for any potential non-normality in the data, Mann-Whitney U-tests were used to compare differences in BFS mean scores across several categorical demographic and medical variables. Pearson r correlations were used to examine the association between continuous demographic variables and BFS scores.

Data sharing statement

Individual deidentified participant data are shared, including item-level responses on the BFS, as well as mean and sum scores, and all demographic and medical characteristics. In addition, syntax and output files are made available in Figshare and as Supplemental Material on the SAGE Journals platform.

Results

Questionnaire results

Table 2 displays item-level descriptive information for all 17 questions on the BFS. Items are listed in order of highest to lowest mean rating. Total scores ranged from 33 to 85 on the scale (out of a possible range of 17–85), with a mean total score of 60.04 (SD = 8.29). Participants’ mean scores on the BFS scale (in item score format instead of total score format) ranged from 1.94 to 5.00, with an overall mean score of 3.53 (SD = 0.49). The sample used the full Likert scale on each item (range: 1–5). Across all items, the modal score was either “3 = Moderately” or “4 = Quite a bit.” The item with the highest mean score was “Has taught me to be more patient” (M = 3.67, SD = 0.95). However, there was no evidence to suggest differences in the mean score for the first 10 items in Table 2. Thus, patience, strength, sensitivity to family issues, closer family, focus on priorities and deeper sense of purpose, realizing who one’s real friends are, understanding that all people need to be loved, emotional and spiritual growth, and friendships were rated similarly by participants. In order of descending means, as represented in Table 2, significant differences emerged on an item level for: (1) “Has taught me to be more patient” (item 10, M = 3.67, SD = 0.95) vs “Has made me more aware and concerned for the future of all human beings” (item 9, M = 3.52, SD = 0.97), t(325) = 2.09; p = 0.04); (2) “Has made me more aware and concerned for the future of all human beings” (item 9, M = 3.52, SD = 0.97) vs “Has made me realize the importance of planning for my family’s future” (item 8, M = 3.37, SD = 0.99), t(324) = 2.05, p = 0.04).

Table 2.

Descriptive information for responses to benefit-finding scale (BFS).

Item Description M (SD) Mode Range
10 Has taught me to be more patient 3.67 (0.95) 4 1–5
17 Has helped me become a stronger person, more able to cope effectively with future life challenges 3.66 (0.90) 4 1–5
1 Has led me to be more accepting of things 3.62 (0.80) 4 1–5
5 Has made me more sensitive to family issues 3.60 (0.87) 4 1–5
4 Has brought my family closer together 3.58 (0.99) 3 1–5
16 Has helped me become more focused on priorities, with a deeper sense of purpose in life 3.58 (0.93) 4 1–5
15 Has helped me realize who my real friends are 3.58 (0.98) 4 1–5
7 Has shown me that all people need to be loved 3.56 (0.87) 3 1–5
13 Has contributed to my overall emotional and spiritual growth 3.56 (0.88) 4 1–5
12 Has led me to meet people who have become some of my best friends 3.54 (0.89) 4 1–5
9 Has made me more aware and concerned for the future of all human beings 3.52 (0.97) 4 1–5
3 Has helped me take things as they come 3.50 (0.94) 4 1–5
11 Has led me to deal better with stress and problems 3.47 (0.93) 3 1–5
14 Has helped me to become more aware of the love and support available from other people 3.46 (0.98) 3 1–5
6 Has taught me that everyone has a purpose in life 3.41 (0.92) 3 1–5
8 Has made me realize the importance of planning for my family’s future 3.37 (0.99) 4 1–5
2 Has taught me how to adjust to things I cannot change 3.36 (0.94) 3 1–5
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Relationship of BFS to demographic and medical variables

Table 3 displays differences in mean BFS scores, according to categorical demographic variables. BFS scores varied significantly by age, race, education level, and employment status. The only continuous variable examined was age. Older age was negatively correlated with mean BFS score, r = −0.151, p = 0.006. Mean BFS scores for majority race/ethnicity participants were significantly higher than for minority race/ethnicity participants, U = 1744.0, z = −2.00, p = 0.045. Mean BFS scores for college-educated participants were significantly higher than for non-college educated participants, U = 9679.0, z = −3.71, p < 0.001. Mean BFS scores for those who were employed or students (full- or part-time) were significantly higher than for those who were not employed or students, U = 5829.0, z = −4.81, p < 0.005. There were no significant differences in mean BFS scores based on sex, type of SB, presence of shunt, or lesion level.

Table 3.

Relationship of BFS to demographic and medical variables.

Categorical variables, n Mdn M (SD) Mean Rank Mann-Whitney U Test Z score p-value
Sex
 Male, n = 230 3.53 3.51 (0.47) 161.37 10549.5 −0.63   0.527
 Female, n = 96 3.62 3.58 (0.53) 168.61
Race
 White, n = 310 3.62 3.54 (0.48) 165.87 1744.0 −2.00   0.045
 Non-White, n = 16 3.09 3.37 (0.64) 117.50
Education
 College or higher, n = 131 3.76 3.65 (0.46) 187.11 9679.0 −3.71 <0.001
 Did not attend or complete college, n = 195 3.41 3.46 (0.49) 147.64
Employment
 Employed or student, n = 253 3.65 3.31 (0.44) 176.96 5829.0 −4.81 <0.005
 Not employeda, n = 73 3.18 3.60 (0.48) 116.85
SB type
 Myelomeningocele, n = 173 3.65 3.55 (0.49) 169.29 12232.0 −1.18   0.237
 Otherb, n = 153 3.47 3.52 (0.49) 156.95
Shunt
 Yes, n = 213 3.53 3.53 (0.47) 161.00 11501.5 −0.66   0.510
 No, n = 113 3.65 3.55 (0.52) 168.22
Lesion level
 Sacral, n = 100 3.68 3.59 (0.42) 178.83 4.73c   0.094
 Lumbar, n = 196 3.47 3.50 (0.53) 154.38
 Thoracic, n = 30 3.56 3.53 (0.49) 171.98
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Mdn = median; M = mean; SD = standard deviation; SB = spina bifida.

a

Not employed group includes unemployed, on disability for work, and volunteers.

b

Other types of SB include meningocele, lipomeningocele, lipomyelomeningocele, or lipoma.

c

For lesion level, the Kruskal-Wallis test was used and reported here to compare distributions across k = 3 levels of lesion level.

Discussion

The current study aimed to examine benefit-finding in young adults with SB using a validated self-report measure of benefit-finding that has been used in a wide variety of populations (Bower et al., 2005; de Vries et al., 2019; McMillen and Cook, 2003; Rassart et al., 2017). To our knowledge, this is the first investigation of benefit-finding with individuals who have SB. SB presents a novel opportunity to examine benefit-finding for at least two reasons. First, the lifelong experience of SB differs from many of the health events that are studied in relation to benefit-finding. Indeed, acute medical events or illnesses are frequently diagnosed later in life, promoting an ability to seek benefit-finding from a perspective of differences “before” and “after” a diagnosis or event. This ability to compare such different perspectives likely has implications for how an individual experiences their condition, including how it is integrated into one’s sense of self (Kinavey, 2006) and how one makes meaning or finds potential benefits from the experience. This examination of benefit-finding with young adults with SB, who have had their condition since birth, is therefore unique. Second, SB has a multifaceted symptom profile, and includes cognitive difficulties, such as variable and often lower IQ, executive functioning deficits, trouble with independent functioning, and language difficulties (Stern et al., 2018; Vachha and Adams, 2003). All of these symptoms may impact how an individual perceives and reports on perceived benefits of their condition compared to previous examinations of benefit-finding that have recruited typically-developing samples. For these reasons, the current findings: (1) contribute to a growing body of literature on the psychosocial experience of individuals with SB; and (2) may inform how benefit-finding can be understood more generally in populations with chronic illnesses that include cognitive difficulties.

Current findings support the capacity for benefit-finding in young adults with SB. Despite the complexity and pervasive impact of this chronic condition, individuals with SB derive positive benefits that they attribute to living with SB. The adapted BFS functioned well in this sample with satisfactory internal consistency. The mean and modal item scores were at or above the scale mid-point, indicating moderate endorsement of the benefits. The top benefits endorsed by this sample included greater patience, strength as a person, acceptance, sensitivity to family issues, closer family, more focused on life priorities, friendships, understanding that all people need to be loved, and emotional and spiritual growth as a result of having SB. This set of findings lends further support to a model of resilience in these individuals (Hayter and Dorstyn, 2014), as they are able to derive positive meaning from their chronic condition.

There were significant differences in the mean scores of some items of the BFS. The first significant difference emerged at the item level for “Has taught me to be more patient” vs. “Has made me more aware and concerned for the future of all human beings.” Awareness and concern for the future of all human beings did not significantly differ from the next four items. Interestingly, three of these five items that were endorsed at a lower rate than the “top benefits” involved some level of perspective-taking and extrapolation (i.e., “aware and concerned for the future of all human beings,” “aware of the love and support available from other people,” and “everyone has a purpose in life.”) It is possible that young adults with SB struggle with deriving benefits that pertain to ways in which they might perceive and interact with others. This may demand more advanced meta-cognitive skills that are challenging for individuals with SB. Items with the lowest rate of endorsement included realizing “the importance of planning for my family’s future” and learning “how to adjust to things I cannot change.” Similar to what was stated above, it is possible that the benefit of planning for one’s family’s future requires more sophisticated, abstract reasoning skills that not all young adults with SB have achieved. Adjustment to “things I cannot change” may also require a level of extrapolation that is challenging for these individuals.”

According to theories of psychological response to threat, individuals with SB may experience perceived positive change in their self-perceptions, priorities, and interactions with others as a result of their SB (Tedeschi and Calhoun, 1996). These benefits can be adaptive in that they reduce the perceived threat that the chronic illness poses to individuals with SB (Thompson, 1981, 1985) and amplify the positive gains that have been made by coping with this illness. By finding benefit from their circumstances, individuals with SB may increase their sense of control and self-esteem (Taylor, 1983) and achieve a sense of comfort (Rothbaum et al., 1982). Given that the BFS is phrased such that individuals are attributing benefit to “living with spina bifida,” we can presume that these benefits are not just simultaneous with their condition, but attributed to their condition. This phenomenon might be akin to the way in which some adults with autism spectrum disorder (ASD) describe advantages that are the flip side of their autistic “impairment” (Russell et al., 2019). Such individuals perceive a wide range of positive traits that they credit to ASD. In a similar way, individuals with SB may be deriving benefit because of, not in spite of, their chronic illness.

Consistent with hypotheses and the benefit-finding literature (Helgeson et al., 2006), both age and race were significantly associated with BFS scores. BFS scores tended to be lower among older individuals, individuals from racial/ethnic minority groups, and participants with a lower education level and/or unemployment. In other words, factors associated with lower benefit-finding were generally variables considered to be indicative of risk for lower psychosocial functioning. Contrary to our hypotheses, benefit-finding scores did not vary by sex as they have in other populations (Helgeson et al., 2006); however, our ability to examine these differences was limited by our sample size being predominantly male.

These findings should be interpreted in light of several limitations. First, this study did not include measures of IQ, cognitive functioning, or psychosocial functioning, all of which are potentially important variables to consider in relation to benefit-finding and SB more broadly. Second, the sample demographics were skewed with regards to sex and race, with an overwhelmingly male and Caucasian population. Given the high prevalence rates of SB among Latinx individuals (Papadakis et al., 2018), it will be important to replicate this work in a more representative sample. Finally, the BFS was administered via an online survey, which did not allow participants to ask clarifying questions. Given the potentially varied IQ profile of this sample, it is assumed, but unknown, if the survey questions were interpreted correctly. It is also possible that some of the items that were endorsed at a lower rate required meta-cognitive skills that were challenging for individuals with SB (Mahone et al., 2002).

Future research should examine potential predictors of and outcomes of benefit-finding among individuals with SB. Specifically, research should examine benefit-finding in relation to IQ and neurocognitive functioning, as that is a specific concern in this population. Given that benefit-finding is associated with cognitive reframing strategies, those with lower cognitive functioning may be at a disadvantage for engaging in such techniques. However, cognitive reframing is a skill that may be taught and reinforced (Clark, 2013) and such research may support targeted interventions for individuals with SB who would benefit from such skill training. Furthermore, investigations with other medical populations have suggested that benefit-finding may be a resource that facilitates identity formation (Luyckx et al., 2016). Thus, it would be interesting to explore the relationship between benefit-finding and identity development in individuals with SB, as well as examine benefit-finding across a wider range of ages and developmental stages. Future research should also explore the relationship between benefit-finding and other outcomes, including health and psychosocial outcomes, which have been studied in other populations (Bower et al., 2009; Helgeson et al., 2006). Should benefit-finding be associated with positive health and psychological outcomes for individuals with SB, it would be worth pursuing intervention strategies to increase benefit-finding in this population.

To the best of our knowledge, the current study is the first to examine benefit-finding in individuals with SB, a life-long medical condition that can be diagnosed in utero. This stands in contrast to previous studies that have explored benefit-finding in samples with a discrete medical condition and/or event (e.g., spinal cord injury, cancer). The findings of this study indicate that individuals with SB have the capacity to identify “silver linings” to their condition, including benefits related to personal strengths, interpersonal relationships, and life philosophy. Given these findings, assessing benefit-finding in younger populations and examining these benefits in relation to psychosocial outcomes may inform targeted interventions for individuals with SB.

Acknowledgements

The authors thank the Spina Bifida Association (SBA), without whom this research would not have been possible.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported in part by grants from the National Institute of Nursing Research and the Office of Behavioral and Social Sciences Research (R01 NR016235), National Institute of Child Health and Human Development (R01 HD048629), and the March of Dimes Birth Defects Foundation (12-FY13-271).

Footnotes

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

References

  1. Affleck G and Tennen H (1996) Construing benefits from adversity: Adaptotional significance and dispositional underpinnings. Journal of Personality 64(4): 899–922. [DOI] [PubMed] [Google Scholar]
  2. Ammerman RT, Kane VR, Slomka GT, et al. (1998) Psychiatric symptomatology and family functioning in children and adolescents with spina bifida. Journal of Clinical Psychology in Medical Settings 5(4): 449–465. [Google Scholar]
  3. Appleton PL, Ellis NC, Minchom PE, et al. (1997). Depressive symptoms and self-concept in young people with spina bifida. Journal of Pediatric Psychology 22(5): 707–722. [DOI] [PubMed] [Google Scholar]
  4. Bellizzi KM, Miller MF, Arora NK, et al. (2007). Positive and negative life changes experienced by survivors of non-Hodgkin’s lymphoma. Annals of Behavioral Medicine 34(2): 188–199. [DOI] [PubMed] [Google Scholar]
  5. Blum RW, Resnick MD, Nelson R, et al. (1991). Family and peer issues among adolescents with spina bifida and cerebral palsy. Pediatrics 88(2): 280–285. [PubMed] [Google Scholar]
  6. Bower JE, Meyerowitz BE, Desmond KA, et al. (2005) Perceptions of positive meaning and vulnerability following breast cancer: predictors and outcomes among long-term breast cancer survivors. Annals of Behavioral Medicine: A Publication of the Society of Behavioral Medicine 29(3): 236–245. [DOI] [PubMed] [Google Scholar]
  7. Bower JE, Moskowitz JT and Epel E. (2009) Is benefit finding good for your health? Pathways linking positive life changes after stress and physical health outcomes. Current Directions in Psychological Science 18(6): 337–341. [Google Scholar]
  8. Bowman RM, McLone DG, Grant JA, et al. (2001) Spina bifida outcome: a 25-year prospective. Pediatric Neurosurgery 34(3): 114–120. [DOI] [PubMed] [Google Scholar]
  9. Carver CS and Antoni MH (2004) Finding benefit in breast cancer during the year after diagnosis predicts better adjustment 5 to 8 years after diagnosis. Health Psychology: Official Journal of the Division of Health Psychology, American Psychological Association 23(6): 595–598. [DOI] [PubMed] [Google Scholar]
  10. Centers for Disease Control and Prevention (CDC) (2009). Racial/ethnic differences in the birth prevalence of spina bifida - United States, 1995-2005. MMWR. Morbidity and Mortality Weekly Report 57(53): 1409–1413. [PubMed] [Google Scholar]
  11. Clark DA (2013) Cognitive restructuring. The Wiley Handbook of Cognitive Behavioral Therapy 1: 1–22. [Google Scholar]
  12. Copp AJ, Scott Adzick N, Chitty LS, et al. (2015) Spina bifida. Nature Reviews Disease Primers 1(1): 1–18. [DOI] [PMC free article] [PubMed] [Google Scholar]
  13. Currier JM, Hermes S and Phipps S (2009) Brief report: Children’s response to serious illness: perceptions of benefit and burden in a pediatric cancer population. Journal of Pediatric Psychology 34(10): 1129–1134. [DOI] [PMC free article] [PubMed] [Google Scholar]
  14. Danoff-Burg S, Agee JD, Romanoff NR, et al. (2006). Benefit finding and expressive writing in adults with lupus or rheumatoid arthritis. Psychology & Health 21(5): 651–665. [Google Scholar]
  15. Danoff-Burg S and Revenson TA (2005) Benefit-finding among patients with rheumatoid arthritis: Positive effects on interpersonal relationships. Journal of Behavioral Medicine 28(1): 91–103. [DOI] [PubMed] [Google Scholar]
  16. de Vries AM, Helgeson VS, Schulz T, et al. (2019) Benefit finding in renal transplantation and its association with psychological and clinical correlates: A prospective study. British Journal of Health Psychology 24(1): 175–191. [DOI] [PMC free article] [PubMed] [Google Scholar]
  17. Hayter MR and Dorstyn DS (2014). Resilience, self-esteem and self-compassion in adults with spina bifida. Spinal Cord 52(2): 167–171. [DOI] [PubMed] [Google Scholar]
  18. Helgeson VS, Reynolds KA and Tomich PL (2006). A meta-analytic review of benefit finding and growth. Journal of Consulting and Clinical Psychology 74(5): 797–816. [DOI] [PubMed] [Google Scholar]
  19. Holmbeck GN, DeLucia C, Essner B, et al. (2010). Trajectories of psychosocial adjustment in adolescents with spina bifida: a 6-year, four-wave longitudinal follow-up. Journal of Consulting and Clinical Psychology 78(4): 511–525. [DOI] [PubMed] [Google Scholar]
  20. Holmbeck GN, Westhoven VC, Phillips WS, et al. (2003). A multimethod, multi-informant, and multidimensional perspective on psychosocial adjustment in preadolescents with spina bifida. Journal of Consulting and Clinical Psychology 71(4): 782–796. [DOI] [PubMed] [Google Scholar]
  21. Inhelder B and Piaget J (1958) The growth of logical thinking from childhood to adolescence: An essay on the construction of formal operational structures (Vol. 22). London: Psychology Press. [Google Scholar]
  22. Kaufman BA (2004) Neural tube defects. Pediatric Clinics of North America 51(2): 389–419. [DOI] [PubMed] [Google Scholar]
  23. Kinavey C (2006) Explanatory models of self-understanding in adolescents born with spina bifida. Qualitative Health Research 16(8): 1091–1107. [DOI] [PubMed] [Google Scholar]
  24. Littlewood RA, Vanable PA, Carey MP, et al. (2008). The association of benefit finding to psychosocial and health behavior adaptation among HIV + men and women. Journal of Behavioral Medicine 31(2): 145–155. [DOI] [PMC free article] [PubMed] [Google Scholar]
  25. Luyckx K, Ramsey MA, Kelly CS, et al. (2016). Brief report: Benefit finding and identity processes in type 1 diabetes: Prospective associations throughout adolescence. Journal of Adolescence 49: 47–50. [DOI] [PMC free article] [PubMed] [Google Scholar]
  26. Mahone EM, Zabel TA, Levey E, et al. (2002). Parent and self-report ratings of executive function in adolescents with myelomeningocele and hydrocephalus. Child Neuropsychology 8(4): 258–270. [DOI] [PubMed] [Google Scholar]
  27. McGregor BA and Antoni MH (2009) Psychological intervention and health outcomes among women treated for breast cancer: A review of stress pathways and biological mediators. Brain, Behavior, and Immunity 23(2): 159–166. [DOI] [PMC free article] [PubMed] [Google Scholar]
  28. McMillen JC and Cook CL (2003) The positive by products of spinal cord injury and their correlates. Rehabilitation Psychology 48(2): 77–85. [Google Scholar]
  29. Mitchell LE, Adzick NS, Melchionne J, et al. (2004) Spina bifida. The Lancet 364(9448): 1885–1895. [DOI] [PubMed] [Google Scholar]
  30. Morley CP, Struwe S, Pratte MA, et al. (2020). Survey of U.S. adults with spina bifida. Disability and Health Journal 13(2): 100833. [DOI] [PubMed] [Google Scholar]
  31. Papadakis JL, Acevedo L, Ramirez S, et al. (2018). Featured article: Psychosocial and family functioning among Latino youth with spina bifida. Journal of Pediatric Psychology 43(2): 105–119. [DOI] [PMC free article] [PubMed] [Google Scholar]
  32. Qualtrics (2013). Qualtrics. Provo, UT, USA: Qualtrics Labs, Inc. [Google Scholar]
  33. Rabe S, Zöllner T, Maercker A, et al. (2006). Neural correlates of posttraumatic growth after severe motor vehicle accidents. Journal of Consulting and Clinical Psychology 74(5): 880–886. [DOI] [PubMed] [Google Scholar]
  34. Rassart J, Luyckx K, Berg CA, et al. (2017). Longitudinal trajectories of benefit finding in adolescents with Type 1 diabetes. Health Psychology: Official Journal of the Division of Health Psychology, American Psychological Association 36(10): 977–986. [DOI] [PubMed] [Google Scholar]
  35. Rothbaum R, Weisz J and Snyder S. (1982). Changing the world and changing the self: A two-process model of perceived control. Journal of Persormlity and Social Psychology 42: 5–37. [Google Scholar]
  36. Russell G, Kapp SK, Elliott D, et al. (2019). Mapping the autistic advantage from the accounts of adults diagnosed with autism: A qualitative study. Autism in Adulthood 1(2): 124–133. [DOI] [PMC free article] [PubMed] [Google Scholar]
  37. Sears SR, Stanton AL and Danoff-Burg S (2003) The yellow brick road and the emerald city: benefit finding, positive reappraisal coping and posttraumatic growth in women with early-stage breast cancer. Health Psychology 22(5): 487–497. [DOI] [PubMed] [Google Scholar]
  38. Siegel K and Schrimshaw EW (2000) Perceiving benefits in adversity: Stress-related growth in women living with HIV/AIDS. Social Science & Medicine 51(10): 1543–1554. [DOI] [PubMed] [Google Scholar]
  39. Stern A, Bechtel Driscoll CF, Ohanian D, et al. (2018). A Longitudinal Study of depressive symptoms, neuropsychological functioning, and medical responsibility in youth with spina bifida: Examining direct and mediating pathways. Journal of Pediatric Psychology 43(8): 895–905. [DOI] [PMC free article] [PubMed] [Google Scholar]
  40. Stiles-Shields C, Crowe AN, Bechtel Driscoll CF, et al. (2019). A systematic review of behavioral intervention technologies for youth with chronic health conditions and physical and intellectual disabilities: Implications for adolescents and young adults with spina bifida. Journal of Pediatric Psychology 44(3): 349–362. [DOI] [PMC free article] [PubMed] [Google Scholar]
  41. Stiles-Shields C and Holmbeck GN (2020) Health behaviors and disordered eating in adolescents and young adults with spina bifida: Results from a national survey. Disability & Rehabilitation 42(20): 2910–2916. [DOI] [PMC free article] [PubMed] [Google Scholar]
  42. Taylor SE (1983) Adjustment to threatening events: A theory of cognitive adaptation. American Psychologist 38(11): 1161–1173. [Google Scholar]
  43. Tedeschi RG and Calhoun LG (1996) The posttraumatic growth inventory: Measuring the positive legacy of trauma. Journal of Traumatic Stress 9(3): 455–471. [DOI] [PubMed] [Google Scholar]
  44. Tedeschi RG and Calhoun LG (2004). Posttraumatic growth: Conceptual foundations and empirical evidence. Psychological Inquiry 15(1): 1–18. [Google Scholar]
  45. Thompson S. (1981) Will it hurt less if I can control it? A complex answer to a simple question. Psychological Bulletin 90: 89–101. [PubMed] [Google Scholar]
  46. Thompson S (1985). Finding positive meaning in a stressful event and coping. Basic and Applied Social Psychology 6: 279–295. [Google Scholar]
  47. Tomich PL and Helgeson VS (2004). Is finding something good in the bad always good? Benefit finding among women with breast cancer. Health Psychology: Official Journal of the Division of Health Psychology, American Psychological Association 23(1): 16–23. [DOI] [PubMed] [Google Scholar]
  48. Tran V, Wiebe DJ, Fortenberry KT, et al. (2011) Benefit finding, affective reactions to diabetes stress, and diabetes management among early adolescents. Health Psychology: Official Journal of the Division of Health Psychology, American Psychological Association 30(2): 212–219. [DOI] [PMC free article] [PubMed] [Google Scholar]
  49. Urcuyo KR, Boyers AE, Carver CS, et al. (2005). Finding benefit in breast cancer: Relations with personality, coping, and concurrent well-being. Psychology & Health 20(2): 175–192. [Google Scholar]
  50. Vachha B and Adams R (2003) Language differences in young children with myelomeningocele and shunted hydrocephalus. Pediatric Neurosurgery 39(4): 184–189. [DOI] [PubMed] [Google Scholar]

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