ABSTRACT
Aims
(1) To determine the mediating effects of children's transition readiness, which reflects self‐management skill acquisition, and family resilience on the relationship between parenting stress and the quality of life (QOL) of parents and children with spina bifida (SB). (2) To conduct an exploratory analysis of the differences in the mediating pathways based on the presence of SB‐related clinical characteristics.
Design
A cross‐sectional study.
Methods
Data were collected from a single centre in South Korea between October 2022 and July 2024. Participants included children aged 7–13 years diagnosed with myelomeningocele, lipomyelomeningocele or tethered cord syndrome, along with their parents. Statistical analysis was conducted using SPSS and the MEDYAD macro for actor–partner interdependence mediation model analysis.
Results
Family resilience significantly mediated the relationship between parenting stress and both child and parent QOL. However, transition readiness was not a significant mediator in the overall sample. Among children with SB‐related clinical characteristics, transition readiness significantly mediated the association between parenting stress and child QOL. In contrast, family resilience mediated the relationship between parenting stress and parent QOL. No significant mediators were found in children without SB‐related clinical characteristics.
Conclusion
This study highlights the mediating role of family resilience and transition readiness in improving the QOL of children with SB, particularly those with clinical characteristics. The findings suggest that interventions should be tailored to address both family resilience and transition readiness, especially for children with SB‐related clinical challenges.
Impact
These findings are valuable for nurses supporting children with SB, as the results highlight the importance of transition education tailored to SB‐related clinical characteristics. In particular, nurse‐led transition education may play a key role in enhancing transition readiness and improving the QOL of children with SB who have clinical characteristics.
Patient Contribution
None.
Reporting Method
STROBE Checklist for cross‐sectional studies.
Keywords: actor‐partner interdependence mediation model, family resilience, quality of life, spinal dysraphism, transition
1. Introduction
Spina bifida (SB) is a common congenital neural tube defect affecting the central nervous system (Copp et al. 2015), with an incidence of 1–10 per 1000 individuals (Phillips et al. 2017). Depending on the level of spinal cord impairment, children with SB may experience difficulties with daily activities, including urinary incontinence (UI), faecal incontinence (FI) and gait disturbances, which negatively impact their quality of life (QOL) (Şeker Abanoz et al. 2020; Szymanski et al. 2018). One of the goals of SB management is to optimise the QOL of people with this condition (Sawin et al. 2020). Beyond clinical factors, psychosocial factors have also been depicted to influence QOL in children with SB, such as parenting stress, family resilience and transition readiness (Driscoll et al. 2018; Fremion et al. 2023).
2. Background
Previous research has focused on the impact of SB‐related clinical characteristics, such as UI, FI and gait disturbances, but studies of the QOL of children with SB have been limited (Rocque et al. 2015; Şeker Abanoz et al. 2020; Szymanski et al. 2018). In particular, UI and FI are clinical characteristics with significant impact on the QOL of people with SB, acting as one of the domains of the QOL tool for children, teenagers and adults with this condition (Szymański et al. 2017). Several researchers have studied bladder and bowel management interventions to achieve continence in individuals with SB, identifying a positive impact on their QOL (Ambartsumyan and Rodriguez 2018; Smith et al. 2016).
The QOL of children with SB and their families is also influenced by family‐related variables, including parenting stress and family resilience in terms of family adaptation. Parents of children with SB report significantly higher parenting stress and greater difficulty with family adaptation than parents of children with other chronic conditions (Pinquart 2018). It has been established that a high caregiver burden, which is a factor in parenting stress, has a negative impact on the QOL of parents (Taha et al. 2020). Elevated parenting stress is associated with parental depression and a lower QOL of children (Choi et al. 2018; Driscoll et al. 2018). Conversely, family resilience, defined as the capacity of the family as a functional system to withstand and rebound from stressful life challenges, emerging strengthened and more resourceful (Walsh 2016), plays a crucial role in positive family adaptation. As a key protective factor, family resilience has been identified as a predictor of better QOL (Park et al. 2022). However, the relationship among parenting stress, family resilience and QOL from the perspective of family adaptation remains unknown.
Transition is regarded as the shift in self‐management responsibilities from parents to the child (Fremion et al. 2023), and transition readiness refers to a child's ability to manage their own healthcare (Traino et al. 2021). Individuals with SB require lifelong self‐management of clinical characteristics, such as UI and FI, that affect their QOL. Effective self‐management can reduce the risk of condition‐related complications and optimise QOL (Sawin et al. 2021). Research has exhibited that higher transition readiness is associated with a lower chance of UI in children with SB and higher QOL in children with chronic conditions (Sheng et al. 2018; Traino et al. 2021; Wood et al. 2019). Given the complexity of self‐management in SB, transition preparation should begin early and progress gradually to ensure a smooth shift into adulthood (Swanson 2010). The role of the family is crucial in this process, as parents serve as primary facilitators of self‐management development.
However, previous studies have not examined the interactions among family members. Children are born and grow up in a family system, and the interactions between family members are crucial for the development of the child (Stuart et al. 2021). Parents, particularly those of children with chronic conditions, play an important role in their child's development and adaptation and their influences and behaviours should be studied from an academic perspective (Ramos et al. 2018). Therefore, it is essential to analyse the factors that influence the QOL of parents and children with SB, as identified in previous research, from the perspective of the interactions between family members.
Additionally, there are few studies on the relationship between QOL factors in children with SB, such as UI, FI and transition readiness. Clinical characteristics such as UI and FI, which negatively impact the QOL of children with SB, are less likely to be experienced with higher levels of self‐management (Szymanski et al. 2018). Furthermore, self‐management levels are related to transition readiness; the better the transition readiness, the higher the QOL of children with chronic conditions (Sheng et al. 2018). However, the relationships among these factors remain unclear for children with SB. This lack of understanding creates challenges for nurses, as well as other clinicians and researchers, in developing effective interventions to improve the QOL of children with SB.
3. The Study
This study had two objectives: (1) to determine the mediating effects of the transition readiness in children with SB and family resilience on the relationship between parenting stress and the QOL of parents and children; and (2) to conduct an exploratory analysis of the differences in the mediating pathways based on the presence of SB‐related clinical characteristics.
4. Methods
4.1. Design
This cross‐sectional study was part of a prospective cohort study conducted at the largest SB clinic in South Korea (Clinical Research and Trial Management System; iCReaT No. C220054) (Yun et al. 2024). The data analysed were collected between October 2022 and July 2024.
4.2. Study Setting and Sampling
We recruited children with SB and their parents as cohort participants during regular visits to standard clinical care by posting a notice on the bulletin board at Severance Children's Hospital. This notice included information on eligibility, study objectives and methods. Participants who expressed interest were provided with a written description of the study. Additionally, a paediatric urologist and nurse practitioner, part of the research team, explained the study to the potential participants, who were also informed that their participation was voluntary and that it would not have any impact on their future care at the SB clinic. The participants were further informed that they could withdraw from the study at any time without further consequences.
To ensure data integrity and independent responses, we created separate links for the parent and child questionnaires and sent them individually, preventing parents from accessing their child's questionnaire. Children with SB directly responded to questions related to transition readiness and their own QOL, wheras parents completed surveys on parenting stress, their own QOL and family resilience.
The study required a minimum of 100 parent–child pairs of participants according to the recommendations of Du and Wang (2016) regarding sample size in dyadic data analysis with multilevel modelling. We analysed a total of 141 pairs of parent–child data, which provided a sufficient sample size to confirm the first research objective. However, the second research objective was exploratory in nature since each group, divided by clinical characteristics, did not include more than 100 parent–child pairs.
4.3. Inclusion and Exclusion Criteria
The study included children aged 7–13 years diagnosed with myelomeningocele (MMC), lipomyelomeningocele (LMMC) or tethered cord syndrome (TCS). Participation required written informed consent from the parent and age‐appropriate assent from the child. Parents could be biological parents or social parents, such as foster parents or guardians. Children with other diagnoses in addition to SB were also eligible to participate in the study; however, children who could not understand or respond to the Korean questionnaire were excluded from the study.
4.4. Measures
4.4.1. Demographic and Clinical Characteristic
The parental demographics included age, sex and monthly family income. Child demographics included age, sex and school type. Clinical characteristics included diagnosis, having a shunt, voiding, defecation, UI, FI and mobility.
4.4.2. QOL of Children With SB
The QOL of children with SB, one of the dependent variables in this study, was assessed using the Korean version of the KIDSCREEN‐27 (Hong et al. 2007), which consists of 27 items across five domains: physical well‐being (five items), psychological well‐being (seven items), autonomy and parent relations (seven items), social support and peers (four items) and school environment (four items). Each item is rated on a 5‐point Likert scale, with higher scores indicating better QOL. The reliability of the Korean version, as measured by Cronbach's alpha, ranged from 0.77 to 0.95 (Hong et al. 2007), with a value of 0.93 in this study.
4.4.3. QOL of Parents of Children With SB
The remaining dependent variable, the parental QOL of children with SB, was measured using the parent‐reported Korean version of the WHOQOL‐BREF (Min et al. 2002). It consists of 26 items and five domains: overall (two items), physical health (seven items), psychological (six items), social relationships (three items) and environment (eight items). Each item is scored on a 5‐point Likert scale. The domain score was calculated by multiplying the average score for each domain by four. The total score is the sum of the five domain scores, ranging from 20 to 100. Higher scores on the WHOQOL‐BREF indicate higher QOL. The Korean version of the WHOQOL‐BREF has an internal consistency of 0.90 (Min et al. 2002), which was 0.94 in this study.
4.4.4. Parenting Stress
Parenting stress was evaluated using the Korean version of the Parenting Stress Index 4th Edition Short Form (PSI‐4‐SF) (Chung et al. 2019). The PSI‐4‐SF is a 36‐item and three‐domain instrument designed to measure parenting stress, including 12 items on parental distress, 12 items on parent–child dysfunctional interaction and 12 items on difficult child. Each item was measured on a 5‐point Likert scale, with higher scores indicating higher levels of parenting stress. The internal consistency of the Korean version of the PSI‐4‐SF is 0.93 (Chung et al. 2019), with the same value in our study.
4.4.5. Transition Readiness
Transition readiness was measured using the child‐reported Korean version of the Revised Transition Readiness Assessment Questionnaire (TRAQ) (Choi et al. 2022). The TRAQ consists of 19 items and five domains: managing medications (four items), appointment keeping (seven items), tracking health issues (three items), talking with providers (two items) and managing daily activities (three items). Each item is evaluated on a 5‐point Likert scale, with higher scores indicating a greater level of readiness for transition. The internal consistency of the Korean version was previously reported as 0.92 (Choi et al. 2022), with a value of 0.90 in this study.
4.4.6. Family Resilience
Family resilience was assessed using the parent‐reported Korean version of the Walsh Family Resilience Questionnaire (Han et al. 2019), which consists of 32 items, each of which is measured on a 5‐point Likert scale. Higher scores indicate greater family resilience. The internal consistency of the Korean version was 0.97, and in our study, it was 0.96.
4.5. Data Analysis
Statistical analyses were performed using the SPSS software (version 28.0; IBM, Seoul, Korea). Descriptive statistics were used to analyse demographic and clinical characteristics. Pearson's correlation coefficient (r) was used to determine the correlations between variables, with the following cut‐off values: r < 0.20 = very weak; 0.20–0.39 = weak; 0.40–0.59 = moderate; 0.60–0.79 = strong; 0.80–1.0 = very strong (Landis and Koch 1977).
The online survey system was designed to ensure that all items were answered before submission, resulting in a complete dataset with no missing values.
An Actor‐Partner Interdependence Mediation Model (APIMeM) analysis was conducted to examine the mediating effects of family resilience and transition readiness on the relationship between parenting stress and the QOL of children with SB and their parents. The MEDYAD macro (version 1.1) was used, employing a bootstrapping test with 20,000 samples to confirm the effects of the mediation path (Coutts et al. 2019). This method was developed based on ordinary least squares regression, which estimates each regressor separately. This contrasts with structural equation models, which analyse all regressors simultaneously based on maximum likelihood. As a result, the estimation of the parameters of a particular regression does not affect the estimated parameters of other regressions. The MEDYAD macro, which provides 95% bootstrap confidence intervals, was proven valid even if the collected data do not follow a normal distribution (Coutts et al. 2019; Preacher and Hayes 2008). If the confidence interval did not include zero, the effect of the parameter was considered significant.
To enhance the validity of the model, adjusted analyses were conducted by including parental and child demographic characteristics, as well as child diagnoses, as control variables. Specifically, the control variables included parent's age and sex, family income and child's age, sex and diagnosis. These variables were selected based on previous studies that have demonstrated their associations with parenting stress, family resilience, transition readiness and QOL. Family income was log‐transformed to correct for skewness in its distribution.
To conduct an exploratory analysis of the differences in the mediated pathways between children with and without SB‐related clinical characteristics, we performed an additional APIMeM analysis using the MEDYAD macro in separate groups. Children were considered to have SB‐related clinical characteristics if they had one or more of the following clinical characteristics: they depended on a clean intermittent catheter for urination; required the use of enemas or medication for defecation; used a brace, wheelchair or a walker for ambulation; experienced UI, FI or had a shunt.
4.6. Ethical Considerations
The present study protocol was reviewed and approved by the institutional review board of the Yonsei University Health System (4‐2022‐0629). All participants, including parents and children, were informed of the study procedures and written informed consent and assent, respectively, were obtained. The participants could withdraw at any point without adverse consequences. Participant data were kept confidential by assigning code numbers, and data security was maintained throughout the study period.
5. Results
5.1. Demographics
A total of 156 pairs of children aged 7–13 years and their parents were enrolled in this study, of which 141 pairs were included in the final analysis. Fifteen pairs were excluded from the study: nine withdrew, and six were removed due to difficulties in understanding and responding to the Korean questionnaire as a result of cognitive developmental delays. The parents' average age was 41.55 ± 4.33 years, with 125 (88.71%) identifying as mothers (Table 1). The average monthly household income was $4,919.62 ± $2,915.43, which is analogous to the median income of $4774 for a four‐person family in South Korea in 2024. The study included 141 children (73 male, 51.8%; 68 female, 48.2%), with an average age of 9.33 ± 1.85 years. Of the participants, 77 (54.6%) were diagnosed with LMMC, and 36 (25.5%) were diagnosed with MMC. Fifty‐seven participants (40.4%) had incontinence, 25 (17.7%) had UI, 14 (9.9%) had FI and 18 (12.8%) had both UI and FI.
TABLE 1.
General and clinical characteristic (N = 141).
| Variable | Category | Mean ± SD (IQR) or n (%) | |
|---|---|---|---|
| Parent | Sex | Father | 16 (11.3) |
| Mother | 125 (88.7) | ||
| Age (years) | 41.55 ± 4.33 (39, 44) | ||
| Monthly family income (USD) | 4,919.62 ± 2,915.43 (3333.33, 5833.33) | ||
| Child | Sex | Male | 73 (51.8) |
| Female | 68 (48.2) | ||
| Age (years) | 9.33 ± 1.85 (8, 11) | ||
| 7–9 | 69 (48.9) | ||
| 10–13 | 72 (51.1) | ||
| School type | Mainstream | 123 (87.2) | |
| Mainstream with SEN unit | 17 (12.1) | ||
| Other (School for you) a | 1 (0.7) | ||
| Diagnosis | MMC | 36 (25.5) | |
| LMMC | 77 (54.6) | ||
| TCS | 28 (19.9) | ||
| Shunt | 7 (5.0) | ||
| Voiding b | Spontaneous | 98 (69.5) | |
| CIC | 49 (34.8) | ||
| Defecation b | Spontaneous | 111 (78.7) | |
| Enema | 30 (21.3) | ||
| Cone | 22 (15.6) | ||
| ACE | 4 (2.8) | ||
| Glycerin | 3 (2.1) | ||
| Etc. | 1 (0.7) | ||
| Medication | 14 (9.9) | ||
| Incontinence | No | 84 (59.6) | |
| Urinary incontinence | 25 (17.7) | ||
| Faecal incontinence | 14 (9.9) | ||
| Urinary & Faecal incontinence | 18 (12.8) | ||
| Mobility a | Self | 125 (88.7) | |
| Brace | 16 (11.3) | ||
| Wheelchair | 4 (2.8) | ||
| Walker | 1 (0.7) | ||
Abbreviations: ACE, antegrade continence enema; CIC, clean intermittent catheterization; IQR, Interquartile range; LMMC, lipomyelomeningocele; MMC, myelomeningocele; SEN, special educational needs; TCS, tethered cord syndrome.
School for You is a remote learning institution for Korean students with chronic conditions who are unable to attend regular school.
Multiple response.
5.2. Distributions and Correlations of the Variables
The parent QOL score was 73.84 ± 15.05, reflecting a relatively high level of perceived QOL (Table 2). This score is higher than the average of 58.45 ± 13.87 reported among parents of children with Down syndrome in South Korea (Choi et al. 2019). The parenting stress score was 71.01 ± 20.10, indicating a moderate level of stress, which is comparable to the score of 73.94 ± 14.18 reported by parents of children with congenital heart disease in South Korea (Ahn and Kim 2022). The family resilience score was 125.74 ± 17.72, suggesting a high level of family adaptability and strength. The child QOL score was 105.84 ± 15.61, slightly above the international norms reported for the KIDSCREEN‐27 (Budler et al. 2022). The transition readiness score was 45.62 ± 14.99, which is lower than the average score reported among Korean adolescents aged 12–15 years with SB (Choi et al. 2022), indicating a relatively low level of self‐management skill development in this younger age group.
TABLE 2.
Distributions of variables.
| Variable | Range | Mean ± SD (IQR) | Skewness | Kurtosis | |
|---|---|---|---|---|---|
| Parent | Quality of life | 26–130 | 73.84 ± 15.05 (64.17, 82.06) | 0.143 | −0.281 |
| Overall | 2–10 | 6.87 ± 1.33 (6.00, 8.00) | −0.448 | −0.165 | |
| Physical health | 7–35 | 24.73 ± 4.29 (22.00, 28.00) | −0.631 | 0.516 | |
| Psychological | 6–30 | 19.67 ± 4.06 (17.00, 23.00) | −0.337 | −0.339 | |
| Social relationships | 3–15 | 10.34 ± 1.73 (9.00, 12.00) | −0.841 | 0.461 | |
| Environment | 8–40 | 26.62 ± 4.81 (2300, 30.00) | −0.072 | −0.531 | |
| Parenting stress | 36–180 | 71.01 ± 20.10 (55.00, 84.00) | 0.732 | 0.169 | |
| Parental distress | 12–60 | 27.23 ± 8.54 (21.00, 32.00) | 0.583 | 0.055 | |
| Parent–child dysfunctional interaction | 12–60 | 20.87 ± 7.00 (15.00, 25.50) | 0.985 | 0.173 | |
| Difficult child | 12–60 | 22.91 ± 7.71 (17.00, 27.00) | 0.982 | 0.553 | |
| Family resilience | 32–160 | 125.74 ± 17.72 (115.00, 137.50) | −0.281 | 0.244 | |
| Child | Quality of life | 27–135 | 105.84 ± 15.61 (96.00, 118.50) | −0.195 | −0.359 |
| Physical well‐being | 5–25 | 17.89 ± 3.91 (15.00, 20.00) | −0.036 | −0.127 | |
| Psychological well‐being | 7–35 | 28.62 ± 4.36 (26.00, 32.00) | −0.467 | −0.243 | |
| Autonomy and parent relations | 7–35 | 27.34 ± 4.94 (24.00, 31.00) | −0.322 | −0.077 | |
| Social support and peers | 4–20 | 15.58 ± 3.47 (13.00, 18.50) | −0.762 | 0.665 | |
| School environment | 4–20 | 16.40 ± 2.92 (14.00, 19.00) | −0.583 | 0.288 | |
| Transition readiness | 19–95 | 45.62 ± 14.99 (34.50, 55.00) | 0.595 | 0.125 | |
| Managing medications | 4–20 | 8.96 ± 4.08 (5.00, 12.00) | 0.777 | 0.192 | |
| Appointment keeping | 7–35 | 13.89 ± 6.08 (8.00, 18.00) | 0.809 | 0.003 | |
| Tracking health issues | 3–15 | 5.43 ± 3.00 (3.00, 7.00) | 1.287 | 1.069 | |
| Talking with providers | 2–10 | 6.82 ± 2.58 (5.00, 9.00) | −0.331 | −0.945 | |
| Managing daily activities | 3–15 | 10.53 ± 3.00 (9.00, 13.00) | −0.572 | 0.071 |
Abbreviation: IQR, interquartile range.
The correlations between parent variables were weak to moderate, whereas the correlations between child variables were weak (Table 3). Among the correlations between child and parent variables, child transition readiness was not significantly associated with either parent QOL or family resilience, whereas all the other correlations were significant.
TABLE 3.
Correlations of the variables.
| Variable | Parent | Child | |||
|---|---|---|---|---|---|
| Quality of life | Parenting stress | Family resilience | Quality of life | Transition readiness | |
| Parent | |||||
| Quality of life | — | ||||
| Parenting stress | −0.436*** | — | |||
| Family resilience | 0.390*** | −0.323*** | — | ||
| Child | |||||
| Quality of life | 0.301** | −0.340*** | 0.280*** | — | |
| Transition readiness | 0.074 | −0.174* | 0.004 | 0.299*** | — |
p < 0.05.
p < 0.01.
p < 0.001.
5.3. Overall Direct, Total, and Indirect Effects
The findings indicated that parenting stress not only influenced family resilience (effect = −0.272, p < 0.001) but also directly affected the QOL of both parents (effect = −0.223, p < 0.001) and their children (effect = −0.163, p = 0.010; Table 4, Figure 1a). Excluding the mediating variables, the total effect of parenting stress was significant on the QOL of parents (effect = −0.284, p < 0.001) and children (effect = −0.241, p < 0.001; Table 5). The mediator variable, family resilience, had a significant impact on the QOL of both parents (effect = 0.220, p = 0.001) and their children (effect = 0.156, p = 0.026), whereas child transition readiness was only significant for child QOL (effect = 0.338, p < 0.001; Figure 1a). Regarding the indirect effects among the four relationships, the mediating effect of family resilience was significant in the relationship between parenting stress and both parents' (effect = −0.060, 95% CI [−0.112, −0.020]) and children's QOL (effect = −0.042, 95% CI [−0.095, −0.007]; Table 6).
TABLE 4.
Direct effects.
| Path | Effect | SE | t | p | LLCI | ULCI |
|---|---|---|---|---|---|---|
| Overall (n = 141) | ||||||
| Parenting stress → Child QOL | −0.163 | 0.062 | −2.616 | 0.010 | −0.286 | −0.040 |
| Parenting stress → Parent QOL | −0.223 | 0.059 | −3.767 | < 0.001 | −0.339 | −0.106 |
| Group without clinical characteristics (n = 63) | ||||||
| Parenting stress → Child QOL | −0.277 | 0.098 | −2.834 | 0.007 | −0.473 | −0.081 |
| Parenting stress → Parent QOL | −0.251 | 0.099 | −2.546 | 0.014 | −0.449 | −0.053 |
| Group with one or more clinical characteristics (n = 78) | ||||||
| Parenting stress → Child QOL | −0.034 | 0.085 | −0.406 | 0.686 | −0.203 | 0.134 |
| Parenting stress → Parent QOL | −0.134 | 0.082 | −1.641 | 0.106 | −0.298 | 0.029 |
Note: Bold represents a significant effect. Control variables: Parent's age and sex; family income; and child's age, sex, and diagnosis. Clinical characteristics: Voiding with clean intermittent catheterization; defecating with enema or medication; mobility with a brace, wheelchair or walker; urinary or faecal incontinence; or presence of a shunt.
Abbreviations: LLCI, lower limit of 95% confidence interval; QOL, quality of life; SE, standard error; ULCI, upper limit of 95% confidence interval.
FIGURE 1.
Dyadic effects of variables. (a) Overall (n = 141). (b) Group without clinical characteristic (n = 63). (c) Group with one or more one clinical characteristics (n = 78). *p < 0.05; **p < 0.01; ***p < 0.001. Control variables: Parent's age and sex; family income; and child's age, sex and diagnosis. Clinical characteristics: Voiding with clean intermittent catheterization; defecating with enema or medication; mobile with brace, wheelchair or walker; urinary or faecal incontinence; or having a shunt. The blue lines indicate the effect of the parent variable, whereas the orange lines represent the effect of the child variable. Dashed lines represent nonsignificant effects, whereas bold lines indicate significant effects. The number located above the lines corresponds to the direct effect.
TABLE 5.
Total effects.
| Path | Effect | SE | t | p | LLCI | ULCI |
|---|---|---|---|---|---|---|
| Overall (n = 141) | ||||||
| Parenting stress → Child QOL | −0.241 | 0.063 | −3.859 | < 0.001 | −0.365 | −0.118 |
| Parenting stress → Parent QOL | −0.284 | 0.058 | −4.942 | < 0.001 | −0.398 | −0.170 |
| Group without clinical characteristics (n = 63) | ||||||
| Parenting stress → Child QOL | −0.351 | 0.170 | −3.275 | 0.002 | −0.566 | −0.136 |
| Parenting stress → Parent QOL | −0.277 | 0.096 | −2.896 | 0.005 | −0.469 | −0.085 |
| Group with one or more clinical characteristics (n = 78) | ||||||
| Parenting stress → Child QOL | −0.131 | 0.080 | −1.627 | 0.108 | −0.291 | 0.030 |
| Parenting stress → Parent QOL | −0.274 | 0.080 | −3.432 | 0.001 | −0.433 | −0.115 |
Note: Bold represents a significant effect. Control variables: Parent's age and sex; family income; and child's age, sex and diagnosis. Clinical characteristics: Voiding with clean intermittent catheterization; defecating with enema or medication; mobility with a brace, wheelchair or walker; urinary or faecal incontinence; or presence of a shunt.
Abbreviations: LLCI, lower limit of 95% confidence interval; QOL, quality of life; SE, standard error; ULCI, upper limit of 95% confidence interval.
TABLE 6.
Indirect effects.
| Path | Effect | Boot SE | Boot LLCI | Boot ULCI |
|---|---|---|---|---|
| Overall (n = 141) | ||||
| Parenting stress → Transition readiness → Child QOL | −0.036 | 0.025 | −0.089 | 0.009 |
| Parenting stress → Family resilience → Child QOL | −0.042 | 0.022 | −0.095 | −0.007 |
| Parenting stress → Transition readiness → Parent QOL | −0.002 | 0.010 | −0.025 | 0.017 |
| Parenting stress → Family resilience → Parent QOL | −0.060 | 0.024 | −0.112 | −0.020 |
| Group without clinical characteristics (n = 63) | ||||
| Parenting stress → Transition readiness → Child QOL | −0.005 | 0.038 | −0.085 | 0.073 |
| Parenting stress → Family resilience → Child QOL | −0.070 | 0.046 | −0.164 | 0.017 |
| Parenting stress → Transition readiness → Parent QOL | 0.001 | 0.015 | −0.032 | 0.033 |
| Parenting stress → Family resilience → Parent QOL | −0.027 | 0.034 | −0.108 | 0.026 |
| Group with one or more clinical characteristics (n = 78) | ||||
| Parenting stress → Transition readiness → Child QOL | −0.084 | 0.047 | −0.187 | −0.005 |
| Parenting stress → Family resilience → Child QOL | −0.012 | 0.034 | −0.087 | 0.049 |
| Parenting stress → Transition readiness → Parent QOL | −0.008 | 0.025 | −0.068 | 0.032 |
| Parenting stress → Family resilience → Parent QOL | −0.131 | 0.046 | −0.233 | −0.055 |
Note: Bold represents a significant effect. Control variables: Parent's age and sex; family income; and child's age, sex and diagnosis. Clinical characteristics: Voiding with clean intermittent catheterization; defecating with enema or medication; mobility with a brace, wheelchair or walker; urinary or faecal incontinence; or presence of a shunt.
Abbreviations: LLCI, lower limit of 95% confidence interval; QOL, quality of life; SE, standard error; ULCI, upper limit of 95% confidence interval.
5.4. Direct, Total and Indirect Effects by Clinical Characteristics
The exploratory mediating pathways differed according to the presence or absence of SB‐related clinical characteristics (Tables 4, 5, 6). Contrary to the overall findings, no significant indirect effects were observed in the group without SB‐related clinical characteristics (Table 6; Figure 1b). However, in the group with such characteristics, transition readiness had a significant mediating effect on the relationship between parenting stress and child QOL (effect = −0.084, 95% CI [−0.187, −0.005]). Additionally, the mediating effect of family resilience on the relationship between parenting stress and children's QOL, which was previously significant in the full sample, was now nonsignificant (effect = −0.012, 95% CI [−0.087, 0.049]). Another notable finding of this APIMeM is that full mediation effects were observed for transition readiness on the relationship between parenting stress and child QOL, and for family resilience on the relationship between parenting stress and parental QOL (Figure 1c).
6. Discussion
Focusing on the interactions among family members, this study examined the impact of parenting stress, transition readiness and family resilience on the QOL of children with SB and their parents. The results confirmed the mediating effect of family resilience on the relationship between parenting stress and QOL of the child and the parent. Furthermore, we explored the differences in the mediation pathways by SB‐related clinical characteristics and confirmed the mediating effect of transition readiness on the relationship between parenting stress and QOL in the clinical characteristics group.
6.1. Family Resilience
Children with SB may experience various clinical characteristics that contribute to stress for both themselves and their parents (Kritikos et al. 2020). Furthermore, increased parental stress related to SB is significantly associated with decreased QOL of children with this condition (Driscoll et al. 2018). Parental stress, directly linked to the clinical characteristics of children with SB, is inherently challenging to alleviate (Kritikos et al. 2020). Specifically, clinical characteristics such as UI and FI have been identified as major stressors for parents, as these conditions require continuous management and often lead to social stigma and emotional burden (Sheng et al. 2018; Szymanski et al. 2018). However, the results of this study demonstrate that family resilience plays a crucial role in mitigating the negative impact of parental stress on the QOL of children with SB and their parents. These findings offer essential evidence for the development of future interventions focused on improving the QOL of children with SB and their parents by prioritising the enhancement of family resilience as a key component.
The buffering effect of family resilience on the relationship between parental stress and QOL of both children and parents in the context of chronic conditions has been extensively examined across diverse populations (Dong et al. 2021; Park et al. 2022). A consistent finding suggests the critical role of family resilience in facilitating family adaptation to daily life challenges. Higher family resilience serves as a protective factor for children with chronic conditions, helping them cope effectively, fostering healthy peer relationships and promoting prosocial behaviours (Dong et al. 2021). Moreover, the role of family resilience during the COVID‐19 lockdown, as demonstrated in the study by Giordano et al. (2023) conducted in Italy—one of the worst‐affected countries—further supports the need to empower parents and families during the crisis to face new challenges more efficiently. Given the strong association between specific clinical characteristics and parental stress, future research should further explore targeted interventions that not only enhance family resilience but also provide parents with effective coping strategies for managing the daily challenges associated with SB‐related conditions, such as incontinence. In conclusion, enhancing family resilience and adaptation provides emotional and social benefits to both children and parents, leading to an overall improvement in their QOL (Dong et al. 2021; Giordano et al. 2023).
However, enhancing family resilience is a multifaceted and complicated process which requires navigating intricate internal family dynamics and external interactions within a broader social and environmental context. Therefore, future resilience‐promoting interventions should incorporate strategies that not only strengthen the protective factors for individual family members, such as their physical, emotional and psychosocial health, but also prioritise fostering social resilience by advocating public health policies that support the care of children with chronic conditions (Choi et al. 2018; Toledano‐Toledano et al. 2021). Additionally, these interventions should include strategies aimed at reinforcing healthy family dynamics by developing effective communication skills, fostering family cohesion and promoting social support from friends and extended family members (Choi et al. 2018; Kritikos and Holmbeck 2020). Furthermore, the implementation of policies that acknowledge and foster the collaborative engagement of families in the treatment process is imperative, as this approach has been demonstrated to enhance health outcomes (Allshouse et al. 2018).
6.2. Transition Readiness
Although the analysis was exploratory, the mediating effect of transition readiness on the relationship between parenting stress and children's QOL was significant in the group with SB‐related clinical characteristics. The transition, which is essentially a shift in self‐management responsibilities from parent to child, is particularly important for children with SB (Fremion et al. 2023), as they have a range of self‐management needs, including bladder and bowel management and skin care, which have been demonstrated to significantly impact their QOL (Copp et al. 2015; Szymanski et al. 2018). The children in this study were aged 7–13 years, which is the recommended age to begin assuming responsibility for their own self‐management, including clean intermittent catheterization and enemas (Fremion et al. 2023). However, given the age of the children, transition without parental support is challenging. Therefore, it is essential to prepare for the transition with the parents to improve the QOL of children with SB.
The guidelines for transitioning individuals with SB recommend that the discussion of transition starts at birth and that age‐appropriate goals and education should be provided (Fremion et al. 2023; Swanson 2010). Although this study assessed transition readiness in children aged 7–13 years, previous research has primarily focused on transitions in adolescence and beyond (Wood et al. 2019). Adolescents and young adults with SB have significant educational needs regarding navigating the health insurance system and advanced self‐management of SB (Choi et al. 2021), which vary depending on their developmental stages. A nurse‐led transitional care programme based on identified educational needs was found to improve participants' readiness for transition (Choi et al. 2022). This study, which involved children aged 12–15 years, also facilitated the development of individualised goals and plans for participating families, supporting their transition after the study. Nurses with a comprehensive understanding of the needs of children with SB and their family context are ideally positioned to provide effective transitional education.
6.3. Implications for Practice and Recommendations for Further Research
From the perspective of family adaptation, the mediating effect of family resilience identified in this study has significant implications for clinical practice and future research. Unlike other chronic conditions, SB is frequently diagnosed prenatally (Copp et al. 2015), allowing the implementation of interventions for families at an early stage. Such planned interventions may contribute to a reduction in parenting stress, an increase in family resilience, and an improvement in the QOL of both children and parents.
From a transition perspective, the exploratory full mediating effect of transition readiness identified in this study suggests that the timing of the transitional education should be considered. Although transition guidelines suggest this should happen from birth (Fremion et al. 2023), interventions for transitioning children with SB have primarily focused on adolescents (Choi et al. 2022). The results of this study, which focused on children before adolescence, provide practical evidence of the importance of starting active transition education earlier than is typical in practice.
6.4. Limitations of the Study
This study has several limitations. First, it employed a cross‐sectional design, which precludes an examination of how the model changes with age. Given that the family influence on the QOL of children with SB changes with time, further longitudinal research should investigate how the model also changes. Second, the differences in the mediating pathways by SB‐related clinical characteristics should be interpreted with caution, as these findings are classified as exploratory due to the limited sample size. Further research with a larger sample size is required to confirm these findings. Finally, the proportion of participants without SB‐related clinical characteristics affecting QOL was 44.7%, which is relatively high compared to studies from Western countries and should be interpreted with caution (Sawin et al. 2015). We suggest repeating similar design studies in different countries to gather more evidence to improve the QOL of children with SB.
7. Conclusions
To the best of our knowledge, this is the first study to examine the factors that influence the QOL of children with SB and their parents at the familial level, using a dyadic analysis. These results support the partial mediating effect of family resilience on parenting stress and child and parent QOL. Additionally, although exploratory, this study confirmed the full mediating effect of transition readiness between parenting stress and children's QOL in the presence of SB‐related clinical characteristics. Our findings confirm the need to provide interventions to enhance family resilience and modify the timing of transitional education.
Author Contributions
S.H.Y., H.Y., H.L., C.G.P. and E.K.C.: made substantial contributions to conception and design, or acquisition of data, or analysis and interpretation of data. S.H.Y., H.Y., H.L., K.K., C.G.P. and E.K.C.: involved in drafting the manuscript or revising it critically for important intellectual content. S.H.Y., H.Y., H.L., K.K., C.G.P. and E.K.C.: given final approval of the version to be published. Each author should have participated sufficiently in the work to take public responsibility for appropriate portions of the content. S.H.Y., H.Y., H.L., K.K., C.G.P. and E.K.C.: agreed to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.
Ethics Statement
The study protocol was reviewed and approved by the institutional review board of the Yonsei University Health System (4‐2022‐0629).
Conflicts of Interest
The authors declare no conflicts of interest.
Supporting information
Data S1.
Funding: This work was supported by the National Research Foundation of Korea (NRF) grant funded by the Korea government (MSIT) (No. 2022R1A2C1008573). This research was supported by the Brain Korea 21 FOUR Project funded by the National Research Foundation (NRF) of Korea, Yonsei University College of Nursing.
Data Availability Statement
The authors have nothing to report.
References
- Ahn, S. , and Kim S.. 2022. “Distress, Family Resilience, and Quality of Life Among Family Caregivers of Cancer Patients Undergoing Chemotherapy: The Moderating Role of Family Resilience.” Korean Journal of Adult Nursing 34, no. 2: 225–232. 10.7475/kjan.2022.34.2.225. [DOI] [Google Scholar]
- Allshouse, C. , Comeau M., Rodgers R., and Wells N.. 2018. “Families of Children With Medical Complexity: A View From the Front Lines.” Pediatrics 141, no. Supplement_3: S195–S201. 10.1542/peds.2017-1284D. [DOI] [PubMed] [Google Scholar]
- Ambartsumyan, L. , and Rodriguez L.. 2018. “Bowel Management in Children With Spina Bifida.” Journal of Pediatric Rehabilitation Medicine 11: 293–301. 10.3233/PRM-170533. [DOI] [PubMed] [Google Scholar]
- Budler, L. C. , Pajnkihar M., Ravens‐Sieberer U., Barr O., and Stiglic G.. 2022. “The KIDSCREEN‐27 Scale: Translation and Validation Study of the Slovenian Version.” Health and Quality of Life Outcomes 20, no. 1: 67. 10.1186/s12955-022-01973-3. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Choi, E. K. , Bae E., and Yun H.. 2022. “Nurse‐Led eHealth Transition Care Program for Adolescents With Spina Bifida: A Feasibility and Acceptability Study.” Journal of Pediatric Nursing 67: 44–51. 10.1016/j.pedn.2022.07.004. [DOI] [PubMed] [Google Scholar]
- Choi, E. K. , Bae E., Ji Y., Jung E., and Yang S. H.. 2021. “Discrepancies in Educational Needs for Transition in Adolescents and Young Adults With Spina Bifida in South Korea: Use of the Borich Needs Assessment Model.” Journal of Pediatric Nursing 61: 318–324. 10.1016/j.pedn.2021.08.018. [DOI] [PubMed] [Google Scholar]
- Choi, E. K. , Jung E., Van Riper M., and Lee Y. J.. 2019. “Sleep Problems in Korean Children With Down Syndrome and Parental Quality of Life.” Journal of Intellectual Disability Research 63, no. 11: 1346–1358. 10.1111/jir.12675. [DOI] [PubMed] [Google Scholar]
- Choi, E. K. , Van Riper M., Jang M., and Han S. W.. 2018. “Adaptation and Resilience in Families of Children With Spina Bifida in South Korea.” Rehabilitation Nursing Journal 43, no. 6: 343–350. 10.1097/rnj.0000000000000200. [DOI] [PubMed] [Google Scholar]
- Chung, K. , Yang Y. J., Jung S., Lee K., and Park J. A.. 2019. “Standardization Study for the Korean Version of Parenting Stress Index Fourth Edition Short Form (K‐PSI‐4‐SF).” Korean Journal of Health Psychology 24, no. 4: 785–807. 10.17315/kjhp.2019.24.4.001. [DOI] [Google Scholar]
- Copp, A. J. , Adzick N. S., Chitty L. S., Fletcher J. M., Holmbeck G. N., and Shaw G. M.. 2015. “Spina Bifida.” Nature Reviews Disease Primers 1, no. 1: 15007. 10.1038/nrdp.2015.7. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Coutts, J. J. , Hayes A. F., and Jiang T.. 2019. “Easy Statistical Mediation Analysis With Distinguishable Dyadic Data.” Journal of Communication 69, no. 6: 612–649. 10.1093/joc/jqz034. [DOI] [Google Scholar]
- Dong, C. , Wu Q., Pan Y., Yan Q., Xu R., and Zhang R.. 2021. “Family Resilience and Its Association With Psychosocial Adjustment of Children With Chronic Illness: A Latent Profile Analysis.” Journal of Pediatric Nursing 60: e6–e12. 10.1016/j.pedn.2021.02.010. [DOI] [PubMed] [Google Scholar]
- Driscoll, C. F. B. , Buscemi J., and Holmbeck G. N.. 2018. “Parental Distress and Stress in Association With Health‐Related Quality of Life in Youth With Spina Bifida: A Longitudinal Study.” Journal of Developmental & Behavioral Pediatrics 39, no. 9: 744–753. 10.1097/DBP.0000000000000603. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Du, H. , and Wang L.. 2016. “The Impact of the Number of Dyads on Estimation of Dyadic Data Analysis Using Multilevel Modeling.” Methodology 12, no. 1: 21–31. 10.1027/1614-2241/a000105. [DOI] [Google Scholar]
- Fremion, E. , Kaufman M., Mukherjee S., Murphy P., and Smith K.. 2023. “2023 Updates to the Spina Bifida Transition to Adult Care Guidelines.” Journal of Pediatric Rehabilitation Medicine 16: 583–593. 10.3233/PRM-230052. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Giordano, F. , Daniilidou A., Cipolla A., Landoni M., and Platsidou M.. 2023. “Parents' Perceived Stress and Children's Adjustment During the COVID‐19 Lockdown in Italy: The Mediating Role of Family Resilience.” Family Relations 72, no. 1: 7–22. 10.1111/fare.12716. [DOI] [Google Scholar]
- Han, K. S. , Hong Y. S., Kang H., Roh Y. H., Choi M. S., and Moon H. J.. 2019. “Developing a Prediction Model for Family Health in Families of Patients With Schizophrenia.” Journal of Korean Academy of Psychiatric and Mental Health Nursing 28, no. 4: 309–320. 10.12934/jkpmhn.2019.28.4.309. [DOI] [Google Scholar]
- Hong, S. D. , Yang J. W., Jang W. S., et al. 2007. “The KIDSCREEN‐52 Quality of Life Measure for Children and Adolescents (KIDSCREEN‐52‐HRQOL): Reliability and Validity of the Korean Version.” Journal of Korean Medical Science 22, no. 3: 446–452. 10.3346/jkms.2007.22.3.446. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Kritikos, T. K. , and Holmbeck G. N.. 2020. “Family Functioning Guidelines for the Care of People With Spina Bifida.” Journal of Pediatric Rehabilitation Medicine 13, no. 4: 535–542. 10.3233/prm-200720. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Kritikos, T. K. , Smith K., and Holmbeck G. N.. 2020. “Mental Health Guidelines for the Care of People With Spina Bifida.” Journal of Pediatric Rehabilitation Medicine 13, no. 4: 525–534. 10.3233/prm-200719. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Landis, J. R. , and Koch G. G.. 1977. “The Measurement of Observer Agreement for Categorical Data.” Biometrics 33, no. 1: 159–174. [PubMed] [Google Scholar]
- Min, S. K. , Kim K. I., Lee C. I., Jung Y. C., Suh S. Y., and Kim D. K.. 2002. “Development of the Korean Versions of WHO Quality of Life Scale and WHOQOL‐BREF.” Quality of Life Research 11, no. 6: 593–600. 10.1023/a:1016351406336. [DOI] [PubMed] [Google Scholar]
- Park, M. , Choi E. K., Lyu C. J., Han J. W., and Hahn S. M.. 2022. “Family Resilience Factors Affecting Family Adaptation of Children With Cancer: A Cross‐Sectional Study.” European Journal of Oncology Nursing 56: 102078. 10.1016/j.ejon.2021.102078. [DOI] [PubMed] [Google Scholar]
- Phillips, L. A. , Burton J. M., and Evans S. H.. 2017. “Spina Bifida Management.” Current Problems in Pediatric and Adolescent Health Care 47, no. 7: 173–177. 10.1016/j.cppeds.2017.06.007. [DOI] [PubMed] [Google Scholar]
- Pinquart, M. 2018. “Parenting Stress in Caregivers of Children With Chronic Physical Condition—A Meta‐Analysis.” Stress and Health 34, no. 2: 197–207. 10.1002/smi.2780. [DOI] [PubMed] [Google Scholar]
- Preacher, K. J. , and Hayes A. F.. 2008. “Asymptotic and Resampling Strategies for Assessing and Comparing Indirect Effects in Multiple Mediator Models.” Behavior Research Methods 40, no. 3: 879–891. 10.3758/BRM.40.3.879. [DOI] [PubMed] [Google Scholar]
- Ramos, R. M. , Nóbrega V. M. D., Fernandes L. T. B., Machado A. N., and Collet N.. 2018. “Paternal Care to Children and Adolescent With Chronic Disease: Maternal Perception.” Revista Gaúcha de Enfermagem 38, no. 3: e0006. 10.1590/1983-1447.2017.03.2016-0006. [DOI] [PubMed] [Google Scholar]
- Rocque, B. G. , Bishop E. R., Scogin M. A., et al. 2015. “Assessing Health‐Related Quality of Life in Children With Spina Bifida.” Journal of Neurosurgery 15, no. 2: 144–149. 10.3171/2014.10.PEDS1441. [DOI] [PubMed] [Google Scholar]
- Sawin, K. J. , Margolis R. H. F., Ridosh M. M., et al. 2021. “Self‐Management and Spina Bifida: A Systematic Review of the Literature.” Disability and Health Journal 14, no. 1: 100940. 10.1016/j.dhjo.2020.100940. [DOI] [PubMed] [Google Scholar]
- Sawin, K. J. , Brei T. J., and Houtrow A. J.. 2020. “Quality of Life: Guidelines for the Care of People With Spina Bifida.” Journal of Pediatric Rehabilitation Medicine 13, no. 4: 565–582. 10.3233/prm-200732. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Sawin, K. J. , Liu T., Ward E., et al. 2015. “The National Spina Bifida Patient Registry: Profile of a Large Cohort of Participants From the First 10 Clinics.” Journal of Pediatrics 166, no. 2: 444–450. 10.1016/j.jpeds.2014.09.039. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Şeker Abanoz, E. , Özmen M., Çalışkan M., Gökçay G., and Aydınlı N.. 2020. “Ambulation, Lesion Level, and Health‐Related Quality of Life in Children With Myelomeningocele.” Child's Nervous System 36, no. 3: 611–616. 10.1007/s00381-019-04348-0. [DOI] [PubMed] [Google Scholar]
- Sheng, N. , Ma J., Ding W., and Zhang Y.. 2018. “Family Management Affecting Transition Readiness and Quality of Life of Chinese Children and Young People With Chronic Diseases.” Journal of Child Health Care 22, no. 3: 470–485. 10.1177/1367493517753712. [DOI] [PubMed] [Google Scholar]
- Smith, K. , Neville‐Jan A., Freeman K. A., et al. 2016. “The Effectiveness of Bowel and Bladder Interventions in Children With Spina Bifida.” Developmental Medicine and Child Neurology 58, no. 9: 979–988. 10.1111/dmcn.13095. [DOI] [PubMed] [Google Scholar]
- Stuart, A. , Canário C., and Cruz O.. 2021. “An Evaluation of the Quality of Parent‐Child Interactions in Vulnerable Families That Are Followed by Child Protective Services: A Latent Profile Analysis.” Children 8, no. 10: 906. 10.3390/children8100906. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Swanson, M. E. 2010. “Need for the Life Course Model for Spina Bifida.” Pediatric Clinics of North America 57, no. 4: 893–901. 10.1016/j.pcl.2010.08.001. [DOI] [PubMed] [Google Scholar]
- Szymanski, K. M. , Cain M. P., Whittam B., Kaefer M., Rink R. C., and Misseri R.. 2018. “Incontinence Affects Health‐Related Quality of Life in Children and Adolescents With Spina Bifida.” Journal of Pediatric Urology 14, no. 3: 279.e271–279.e278. 10.1016/j.jpurol.2018.02.021. [DOI] [PubMed] [Google Scholar]
- Szymański, K. M. , Misseri R., Whittam B., et al. 2017. “Validation of QUALAS‐T, a Health‐Related Quality of Life Instrument for Teenagers With Spina Bifida.” Central European Journal of Urology 70, no. 3: 306–313. 10.5173/ceju.2017.1195. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Taha, A. A. , Eisen A. M., Abdul‐Rahman H. Q., et al. 2020. “Spirituality and Quality of Life Among Parents of Adolescents With Spina Bifida.” Western Journal of Nursing Research 43, no. 8: 742–750. 10.1177/0193945920976407. [DOI] [PubMed] [Google Scholar]
- Toledano‐Toledano, F. , Luna D., Moral de la Rubia J., et al. 2021. “Psychosocial Factors Predicting Resilience in Family Caregivers of Children With Cancer: A Cross‐Sectional Study.” International Journal of Environmental Research and Public Health 18, no. 2: 748. 10.3390/ijerph18020748. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Traino, K. A. , Sharkey C. M., Perez M. N., et al. 2021. “Health Care Utilization, Transition Readiness, and Quality of Life: A Latent Class Analysis.” Journal of Pediatric Psychology 46, no. 2: 197–207. 10.1093/jpepsy/jsaa099. [DOI] [PubMed] [Google Scholar]
- Walsh, F. 2016. “Family Resilience: A Developmental Systems Framework.” European Journal of Developmental Psychology 13, no. 3: 313–324. 10.1080/17405629.2016.1154035. [DOI] [Google Scholar]
- Wood, D. , Rocque B., Hopson B., Barnes K., and Johnson K. R.. 2019. “Transition Readiness Assessment Questionnaire Spina Bifida (TRAQ‐SB) Specific Module and Its Association With Clinical Outcomes Among Youth and Young Adults With Spina Bifida.” Journal of Pediatric Rehabilitation Medicine 12: 405–413. 10.3233/PRM-180595. [DOI] [PubMed] [Google Scholar]
- Yun, H. , Yang S. H., Lee H., et al. 2024. “Clinical Profile of Korean Children with Spina Bifida: A Single‐Center Prospective Cohort Study.” BMC Pediatrics 24, no. 1: 791. 10.1186/s12887-024-05229-5. [DOI] [PMC free article] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data S1.
Data Availability Statement
The authors have nothing to report.