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Adaptation and Resilience in Families of Children With Spina Bifida in South Korea

Choi, Eun Kyoung, PhD, RN, CPNP1; Van Riper, Marcia, PhD, RN, FAAN2; Jang, Mina, PhD(c), RN3; Han, Sang Won, PhD, MD4

doi: 10.1097/rnj.0000000000000200
FEATURES

Purpose The purpose of this study, which was guided by the Family Resilience Model, was twofold: (1) to assess the risk and protective factors related to adaptation and resilience in families of children with spina bifida (SB) in South Korea and (2) to examine predictors of family adaptation and resilience.

Design This is a descriptive study using survey methodology.

Methods Data were collected from 203 parents of children with SB between June 2013 and February 2014 at the SB clinic in South Korea and analyzed using stepwise linear regression.

Findings The best predictors of family adaptation and resilience in children with SB included one risk factor (parental depression) and four protective factors (parental health, family cohesion, family communication skills, and supportive friends/relatives). These five factors explained 39.7% of the total variance in family functioning (an indicator of family adaptation and resilience; F = 26.43, p < .001).

Conclusion and Clinical Relevance Findings suggest that nursing interventions designed to strengthen protective factors and reduce risk factors are likely to promote adaptation and resilience in families of children with SB.

1 Mo-Im Kim Nursing Research Institute, Yonsei University College of Nursing, Seoul, South Korea

2 School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA

3 Yonsei University Graduate School of Nursing, Seoul, South Korea

4 Department of Urology and Urological Science Institute, Yonsei University College of Medicine, Seoul, South Korea

Correspondence: Sang Won Han, PhD, MD, Department of Urology and Urological Science Institute, Yonsei University College of Medicine, 50 Yonsei-ro, Seodaemun-gu, Seoul, 03722, South Korea. E-mail: swhan@yuhs.ac

Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal’s Web site (www.rehabnursingjournal.com).

Cite this article as: Choi, E. K., Van, Riper, M., Jang, M., & Han, S. W. (2018). Adaptation and resilience in families of children with spina bifida in South Korea. Rehabilitation Nursing, 43(6), 343–350. doi: 10.1097/rnj.0000000000000200

In spina bifida (SB), the most common type of neural tube defect (NTD), the spinal cord does not develop properly due to failed formation or incomplete closure of the embryonic neural tube at approximately 28 days gestation (Copp et al., 2015 ; Phillips, Burton, & Evans, 2017). Although the global birth prevalence of SB and other NTDs has decreased significantly due to folic acid fortification (Atta et al., 2016) and the survival rates for infants born with NTDs have improved (Shin et al., 2012), NTDs continue to be associated with substantial mortality, morbidity, and disability, as well as substantial psychological and economic costs (Blencowe, Kancherla, Moorthie, Darlison, & Modell, 2018). Worldwide, the incidence of NTDs varies from 1.0 to 10 per 1,000 live births per year, with the incidence being lower in countries that have implemented mandatory folic acid fortification (Atta et al., 2016 ; Copp et al., 2015); folic acid fortification is less common in Asia and Europe. Geographic differences in the number of infants born with NTDs are also related to the availability of prenatal testing and elective pregnancy termination (Johnson et al., 2012).

There is growing evidence SB can negatively impact not only the child with SB but the individual’s family. In a review of social, psychological, and economic burdens experienced by people with SB and their caregivers conducted by Rofail, Maguire, Kissner, Colligs, and Abetz-Webb (2013), areas of caregiver and family lives affected include activities of daily living, work impact, time consumption, parental responsibilities, confidence, feelings and emotions, mental health, stress, social impact, psychosocial adjustment, relationships within the family, social support, coping strategies, and termination decisions. Caregivers and families also deal with cost burdens such as out-of-pocket costs, lost wages, transportation, and other nonmedical costs. Findings from a review by Ridosh, Sawin, Klein-Tasman, and Holmbeck (2017) concerning the prevalence of depressive symptoms in parents of children with SB found a high prevalence of parental depressive symptoms among parents of children with SB. Process factors, such as family functioning, accounted for more variance in parental depressive symptoms than did context factors. In a study by Ridosh, Sawin, Schiffman, and Klein-Tasman (2016), parental depressive symptoms partially mediated the relationship between family resources and family quality of life. The existing literature on family functioning in families of children with SB supports a resilience–disruption view of family functioning (Papadakis et al., 2018). That is, although the presence of a child with SB may cause a disruption in family functioning and some families may struggle, many families are able to adapt successfully to their situation and demonstrate resilience (Lennon, Murray, Bechtel, & Holmbeck, 2015 ; Papadakis et al., 2018).

In summary, much of the research on the experience of living with SB has been focused on the individual with SB or parental well-being. Research concerning family adaptation is more limited, and much of this research has focused on families from Western cultures. This is unfortunate given that families play a critical role in the care of individuals with SB, and life with SB in Western cultures may be very different from life with SB in Eastern cultures. Some of these differences in how families of individuals with SB adapt are likely to be due to cultural differences because family roles, rules, and responsibilities are influenced by social norms and traditions (H. Choi & Van Riper, 2017 ; M. A. McCubbin, McCubbin, & Thompson, 1996).

Confucianism continues to be a dominant belief system in many East Asian countries. Findings from a review of adaptation in families of children with Down syndrome (DS) in East Asian countries suggest that sociocultural factors, some associated with Confucianism, play a role in how individuals, dyads, and families adapt. An association was noted between Confucian beliefs, DS-related stigma, and caregiving responsibilities of mothers and siblings (H. Choi & Van Riper, 2017). Another factor that may play a role in family adaptation to life with SB is the fact that individuals with SB in Eastern countries often have a less serious type of SB like tethered cord syndrome or lipomeningomyelocele; fetuses with the more severe types of SB are commonly terminated following a positive prenatal diagnosis (even though this is not legal in many Eastern countries; E. K. Choi, Ji, & Han, 2017a , 2017b).

The purpose of this study, which was guided by the Family Resilience Model (Patterson, 2002, 2004), was twofold: to assess the risk and protective factors related to adaptation and resilience in families of children with SB in South Korea and to examine predictors of family adaptation and resilience. In the Family Resilience Model, risk and protective factors give rise to adaptation and resilience (see Supplemental Digital Content, Figure 1, http://links.lww.com/RNJ/A9). Four risk factors were assessed in this study: one at the individual child level (i.e., severity of the child’s condition), one at the individual parent level (i.e., parental depression), one at the family level (i.e., stress and strain), and one at the community level (i.e., stigma and discrimination). Eight protective factors were assessed: one at the individual child level (i.e., child temperament), one at the individual parent level (i.e., parental health), three at the family level (i.e., family cohesion, family flexibility, and family communication skills), and three at the community level (i.e., supportive friends/relatives, supportive health services, and community services). Family adaptation and resilience were assessed with a measure of family functioning.

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Methods

Ethical Consideration

This study was approved by the institutional review board of Yonsei University Healthcare System. Parents who met the inclusion criteria were informed of the purpose of the study and given the opportunity to have their questions answered. Parents who chose to participate gave their consent by signing the informed consent form.

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Design and Sample

This was a cross-sectional descriptive study using survey methodology. Between June 2013 and May 2014, a self-report questionnaire that included multiple measures was used to collect data. Participants were parents of children with SB who were younger than 19 years of age and regularly attended scheduled follow-up appointments at the SB clinic of Severance Children’s Hospital, which has the largest SB clinic in South Korea. Additional inclusion criteria were the absence of cognitive impairments, the ability to communicate and respond to questionnaires, and voluntary consent to participate in the study. After the nurse practitioners in the SB clinic explained the purpose of the research, 205 parents agreed to participate. The questionnaires were administered and completed in the clinic where parents were given complete privacy. All the parents filled out the questionnaires completely on their own. A total of 203 questionnaires were included in the data analysis; the two questionnaires with missing data were not included.

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Instruments

The 124-item self-report questionnaire used in this study included demographic questions and self-report measures designed to assess four risk factors (i.e., severity of child’s condition, parental depression, stress and strains, and stigma and discrimination), eight protective factors (i.e., child temperament, parental health, family cohesion, family flexibility, family communication skills, supportive friends/relatives, supportive health services, and community services), and family functioning. To ensure content validity and cultural appropriateness of the questionnaire, two nurse practitioners, two pediatricians, and one parent of a child with SB were consulted. Based on their input, the only change that was made was “my child” was changed to “our child.” This change was made because Koreans tend to be collectivistic, so they are more likely to say our child than my child (Chung & An, 2014). Prior to beginning the study, a pretest was conducted with five parents who were not included in the final sample. Key findings from the pretest were that the questionnaire took between 20 and 25 minutes to complete and parents did not consider this to be burdensome.

The following demographic information was collected from the self-report questionnaire: family composition, marital status, age and gender of parents, age at the birth of a child with SB, level of education, employment, and income.

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Risk Factors

Severity of child’s condition: Individual child level. The severity of the child’s condition was assessed based on the information parents provided regarding the following five factors: SB type, shunt, ambulation, voiding, and defecation status (Greenley, Coakley, Holmbeck, Jandasek, & Wills, 2006 ; Hommeyer, Holmbeck, Wills, & Coers, 1999 ; Yun & Kim, 2017). Possible scores for SB-related severity ranged from 5 to 11, with higher scores indicating a more severe condition.

Parental depression: Individual parent level. Parental depression was assessed with the Beck Depression Inventory (BDI; Beck & Steer, 1984) Korean version (Lee & Song, 1991), a comprehensive and clinically adapted self-report, 21-item questionnaire. Participants were asked to rate each item on a 4-point score (0–3). The maximum total score is 63. Scoring for the BDI was as follows: normal (0–9), mild depression (10–15), moderate depression (16–23), and severe depression (24–63; Beck, 1967 ; Larsson & Melin, 1990); 16 was the cutoff score for those thought to be in need of treatment for depression (Lee & Song, 1991 ; Shin, Kim, & Park, 1993). The Cronbach’s α of this scale was .91 for this study.

Stresses and strains: Family level. Stresses and strains related to raising children with SB were measured using the Questionnaire on Resource and Stress developed by Friedrich, Greenberg, and Crnic (1983) and then modified by H. Choi (2015). The Questionnaire on Resource and Stress has 20 items and measured on a Likert 4-point scale, with higher scores indicating worse strain. In the present study, Cronbach’s α coefficient was .90.

Stigma and discrimination: Community level. The stigma and discrimination scale developed by Green (2003), which was developed to be used for parents who have children with disability, contains nine items and is scored on a 5-point scale. It is a self-assessment of perceptions about living with children who have chronic conditions. Higher scores indicate a higher experience of stigma and discrimination. The Cronbach’s α score was .79 in this study.

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Protective Factors:

Child temperament: Individual child level. The temperament of children with SB was assessed using the Colorado Childhood Temperament Inventory, which was developed by Plomin and Rowe (1977) and revised by Jung (1996). It contains 25 items and is scored on a 4-point scale; higher scores indicate higher sociality, emotional stability, activity, concentration, and self-control. This scale has demonstrated good internal reliability in the present study (Cronbach’s α = .84).

Parental health: Individual parent level. Self-perceived health status was used to measure parental health. Parents were asked to indicate their health status using an 11-point numeric scale ranging from 0 to 10, with “0” representing one health extreme (i.e., “I am NOT totally healthy”) to “10” representing the other health extreme (i.e., “I am totally healthy”).

Family cohesion: Family level. Family cohesion was measured using the Family Adaptability and Cohesion Evaluation Scale III (Olson, Russell, & Sprenkle, 1983). Family cohesion refers to the emotional bonds family members have toward each other (Hamilton & Carr, 2015). There are four levels of family cohesion: disengaged, separated, connected, and enmeshed. The two balanced levels of cohesion were separated and connected. These were hypothesized to be the most viable for healthy family functioning, whereas the extreme areas were generally seen as more problematic. This scale contained 10 items on a 4-point scale with good internal reliability in this study (Cronbach’s α = .91).

Family flexibility: Family level. Family flexibility was assessed using the Changeability subscale of the Family Attachment and Changeability Index 8 (McCubbin, Thompson, & Elver, 1996a). The Changeability subscale is an eight-item scale used to determine how flexible the family members are in their relationships with one another. This subscale contains eight items with a 5-point scale; higher scores indicate higher flexibility. In this study, the Cronbach’s α was .90 for the Changeability subscale.

Family communication skills: Family level. To measure family communication skills, the Family Problem Solving and Communication Scale (McCubbin, McCubbin, & Thompson, 1996) with 10 items on a 4-point scale was used; higher scores mean more positive problem solving and communication skills. This scale had a Cronbach’s α of .85 in this study.

Supportive friends/relatives: Community level. Quality of supportive friends/relatives was assessed with the Seeking Family and Neighbor Support Subscale of Family Coping Index (McCubbin, Thompson, & Elver, 1996b). This scale contains seven items on a 5-point scale; higher scores indicate higher support. For this study, the Cronbach’s α was .85 for this scale.

Supportive health services: Community level. This was measured by using supportive health services, healthcare providers’ attitudes, and the content of information obtained at the time of diagnosis. The tool used, which was developed by Choi, Lee, & Yoo (2011) and incorporated parents who have children with disability, contains eight items on a 4-point Likert scale; higher scores indicate higher supportive health services. This scale’s Cronbach’s α was .75 in this study.

Community services: Community level. Community services were evaluated using the nine-item tool measuring community services for children with disability (Choi, Lee, & Yoo, 2011). The questionnaires were based on literature related to required political community welfare service, according to the developmental stage of children. The items were scored on a 5-point Likert scale; higher scores indicate higher community services. The instrument’s Cronbach’s α was .83 in the present study.

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Family Adaptation and Resilience

The Family APGAR (Smilkstein, 1978) was used to assess family functioning, an indicator of family adaptation and resilience. The Family APGAR was developed to assess family members’ perceptions of family functioning by examining their satisfaction with five dimensions of family functioning (adaptability, partnership, growth, affection, and resolve). Parents were asked to rate their satisfaction with family functioning on a 3-point scale ranging from 0 (hardly ever) to 2 (almost always). Higher scores indicate a greater degree of satisfaction with family functioning. A score of 7–10 suggests a highly functional family, whereas a score of 4–6 suggests a moderately dysfunctional family and a score of 0–3 suggests a severely dysfunctional family (Smilkstein, 1978). In this study, the Cronbach’s α was .88 for the Family APGAR.

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Data Analysis

Data were analyzed using SPSS Statistics software Version 23.0 (IBM, Seoul, South Korea). Descriptive statistics, Pearson’s correlation coefficient, and a stepwise linear regression analysis were included.

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Results

Characteristics of Respondents and Children With SB

The study’s respondents were 203 parents of children with SB, of whom 92% were mothers. Mean age was 39.7 ± 5.4 years, above 61% graduated from college, and 95.5% reported their economic status as middle class. Marital status was married (95.1%), widowed (0.5%), and divorce (1.5%). Among the children, 106 (52.2%) were boys and 97 (47.8%) were girls. The mean age of the children was 9.3 ± 4.9 years, and the mean age at operation was 8.7 ± 18.1 months. Of these, 57 (28.1%) were born with meningomyelocele, 137 (67.5%) were born with lipomeningomyelocele, 9 (4.4%) were born with tethered cord syndrome only, and 11.3% had a shunt. Approximately 21.2% of the children needed aids for mobility. Regarding method of bladder emptying, the proportions of children in need of clean intermittent catheterization and wearing pads due to urinary incontinence were 57.6% and 28.6%, respectively. As for defecation, 41.4% of the children needed additional interventions to defecate regularly, including laxatives, transanal irrigation, and antegrade continence enemas (see Supplemental Digital Content, Table 1, http://links.lww.com/RNJ/A6).

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Descriptive Statistics for Key Variables

Descriptive statistics for the four risk factors, the eight protective factors, and family functioning (see Supplemental Digital Content, Table 2, http://links.lww.com/RNJ/A7). Among the risk factors, 41.9% of the parents had mild to severe levels of depression; 21.7% were considered to have mild depression, 11.3% had moderate-level depression, and 8.9% had severe depression. Slightly over 20% had a score of 16 or above, which suggests they were in need of treatment for depression. As for protective factors, the mean for parent health was 6.3 (SD = 2.0), which indicates better than average parental health. For family cohesion, 47.7% of the parents had family cohesion scores that indicate a balanced level of family cohesion. That is, they were either in the separated or cohesive level for family cohesions. Seventy percent (142) of the families had family functioning scores that suggest the families were highly functional families.

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Relationships Among the Risk and Protective Factors and Family Functioning

Family functioning was negatively related to two of the risk factors: parent depression (r = −.41, p < .001) and stress and strain (r = −.43, p < .001). On the other hand, family functioning was positively related to six of the projective factors: child temperament (r = .34, p < .001), parental health (r = .36, p < .001), family cohesion (r = .53, p < .001), family flexibility (r = .48, p < .001), family communication skills (r = .53, p < .001), and supportive friends/relatives (r = .21, p < .01; see Supplemental Digital Content, Table 3, http://links.lww.com/RNJ/A8).

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Predictors of Family Adaptation and Resilience in Families of Children With SB

The best predictors of family adaptation and resilience in families of children with SB were parental depression (β = −.15, p = .029), family communication skills (β = .27, p = .001), family cohesion (β = .25, p = .002), parental health (β = .14, p = .033), and supportive friends/relatives (β = .12, p = .035), which explained 39.7% of the total variance in family functioning (Table 1).

Table 1

Table 1

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Discussion

Findings from this study enhance our understanding of adaptation and resilience in families of children with SB. Moreover, this is one of the first studies to examine adaptation and resilience in families of children with SB living in South Korea; most of the existing studies were conducted in Western countries. As suggested by the guiding framework, the Family Resilience Model, both risk and protective factors were linked to family functioning, an indicator of family adaptation and resilience. The best predicators of adaptation and resilience were parental depression, parental health, family cohesion, family communication skills, and supportive friends and relatives.

Comparing the findings from this study with the findings from a study concerning families of children with DS in which similar instruments were used (Choi & Yoo, 2015) reveals some interesting similarities as well as differences. As for similarities, findings concerning parental health (SB 6.34, DS 6.18), flexibility (SB 27.42, DS 27.74), support from friends and relatives (SB 19.4, DS 19.8), and family functioning (SB 7.75, DS 7.52) were similar. In addition, the percentage of parents with depression scores of 16 or over (suggesting they were in need of treatment) was similar (SB 20.2%, DS 19%). In both studies, the best predictors of family adaptation and resilience were parental depression, family cohesion, and family communication skills.

In terms of differences between the current study and the similar study concerning families of children with DS (Choi & Yoo, 2015), a higher percentage of the parents of children with SB had depression scores suggesting mild to severe depression (SB 41.9%, DS 34.1%). Parents of children with SB had higher scores on the stresses and strains instrument (SB 39.26 ± 9.69, DS 32.87 ± 7.56, p < .001), but lower scores on the stigma measure (indicating less stigma; SB 24.94 ± 5.52, DS 29.41 ± 5.81, p < .001). One reason why parents of children with SB may experience more stresses and strains is that many children with SB require daily time-intensive care (e.g., clean intermittent catheterization, bowel management, and assistance with ambulation; Kanaheswari, Razak, Chandran, & Ong, 2011), whereas children with DS generally do not require as much time-intensive care on a daily basis. As for stigma, 71.9% of the children with SB were diagnosed with lipomeningomyelocele or tethered cord, a type of SB that is not outwardly apparent so it is likely to be less stigmatizing. In terms of supportive health services, parents of children with SB had higher scores, which indicate higher support (SB 20.65 ± 4.12, DS 17.95 ± 5.26, p < .001). This finding may be because children with SB often need to interact with healthcare providers on a more regular basis due to their ongoing issues with bladder and bowel function. Parents of children with DS had higher scores on the community services instrument, indicating greater community services (SB 15.49 ± 9.50, DS 24.06 ± 8.05, p < .001). One explanation for this is that parents of children with DS may qualify for more community services due to their child’s intellectual disability.

Like many previous studies concerning families of children SB (Choi, Im, & Han, 2017 ; Malm-Buatsi et al., 2015 ; Murray et al., 2014), the majority of the respondents in this study were mothers (92%), and most of the mothers were the primary or sole caregiver. In terms of parental depression, the mean score on the BDI was 9.7 for parents in this study, whereas mean scores on the BDI were 10.2 for parents of children with SB who had shunts and 4.5 for parents of children with SB who did not have shunts in the study by Malm-Buatsi and colleagues (2015). This finding suggests that parents in this study were more depressed than the parents in the study by Malm-Buatis and colleagues, because only 11.3% of the parents in this study had a child with SB who had a shunt. Although there was a strong correlation between depression and stigma in the current study, stigma appears to be less of an issue for parents in this study than it is for parents of children with SB in the study by Fischer, Church, Lyons, and McPherson (2015). A possible explanation for this is that, as mentioned previously, the majority of the children with SB in the current study did not have the more serious forms of SB, so their conditions were not that obvious. Moreover, a major source of stigma for children with SB is urinary incontinence, and only 28.6% of the children with SB in the current study had to wear pads due to urinary incontinence.

Similar to findings from previous research concerning families of children with cancer and families of children with developmental disabilities (Choi & Yoo, 2015 ; Choi, 2015 ; Greeff & Nolting, 2013 ; Greeff, Vansteenwegen, & Geldhof, 2014 ; Phillips-Salimi, Robb, Monahan, Dossey, & Haase, 2014), family adaptation and resilience were related to greater family cohesion, family flexibility, family communication skills, and supportive friends/relatives. For example, in the study by Phillips-Salimi et al. (2014), there was a significant correlation between parental perceptions of family adaptation and family cohesion in families of children with cancer. Greeff and Nolting (2013) reported a significant correlation between family adaptation and positive patterns of family communication in South African families of children with developmental disabilities. In the study by H. Choi (2015), family adaptation in families of children with DS was best explained by family problem-solving communication, family condition management ability, and family hardiness.

This study had some limitation. First, cross-sectional associations limited our inferences on causality. A longitudinal study is recommended to find causality of family resilience and adaptation from showing that several risk and protective factors could make a long-term impact on family resilience and adaptation. Second, it may have included a selection bias; the patients were recruited through a tertiary university hospital, meaning that sample selection bias and limited generalizability of the findings cannot be ruled out. A multicenter sample is needed for further study. Third, the results reflect the situation of parents of children with SB in South Korea, which means that these patients were highly functioning individuals; the fact that most responders had mild SB rather than meningomyelocele should be kept in mind when interpreting the results. Despite its limitations, the strength of this study is its focus on both risk and protective factors of resilience for family adaptation based on the theoretical framework. Until now, family resilience has been studied focusing solely on family protective factors, whereas this study broadened the examination of family resilience by addressing family risk factors together. This study will permit the development of theory-driven and evidence-based intervention programs for families of children with SB using individualized strategies that can strengthen the protective factors and reduce the risk factors.

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Key Practice Points

  • Findings from this study contribute to our understanding of factors (child, parent and family) that may influence family adaptation and resilience in Korean families of children with SB.
  • Some of these findings are likely to be generalizable to families of children with SB living in other countries.
  • Rehabilitation nurses are encouraged to include the assessment of both risk and protective resilience factors in their plan of care because doing this is likely to have a positive impact on family adaptation and resilience.
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Nursing Implications

Findings from this study clearly demonstrate why it is so important for nurses to pay attention to family context when caring for children with SB. These findings also suggest that nurses may find it helpful to use a family framework, such as the Family Resilience, when caring for children with SB and their families. Nurses who include the assessment of both risk factors and protective factors into their plan of care are more likely to provide family-focused care designed to meet the unique needs of the specific family receiving care. Because of this, satisfaction with care is likely to be higher, as is the quality of care. Moreover, nurses will be better prepared to provide interventions designed to strengthen protective factors and reduce risk factors, which will ultimately contribute to family adaptation and resilience.

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Conclusion

Family adaptation to living with children with SB is affected through a complex and multifaceted process. In this process, family resilience, the ability to recover in situations of adversity and to adapt to change, is a critical factor for positive family adaptation. Findings from this study demonstrate that family adaptation and resilience are affected by both risk factors (e.g., parental depression) and protective factors (e.g., communication skills, cohesion, parental health, and supportive friends/relatives). Use of a guiding family framework, such as the Family Resilience Model, can greatly facilitate the development of targeted family-specific interventions designed to foster and support adaptation and resilience in families of children with SB.

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Acknowledgment

The authors wish to thank the participants who generously shared their experiences.

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Conflict of Interest

The authors declare that there are no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

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Keywords:

Family adaptation; family resilience; protective factors; risk factors; spina bifida

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