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. Author manuscript; available in PMC: 2011 Aug 1.
Published in final edited form as: Pediatr Clin North Am. 2010 Aug;57(4):919–934. doi: 10.1016/j.pcl.2010.07.012

A Family Perspective: How this Product can Inform and Empower Families of Youth with Spina Bifida

Grayson N Holmbeck 1, Ann Alriksson-Schmidt 2, Melissa H Bellin 3, Cecily Betz 4, Katie A Devine 5
PMCID: PMC2950836  NIHMSID: NIHMS226589  PMID: 20883882

Spina Bifida (SB) is a relatively common congenital birth defect that has a significant multi-systemic impact on the physical, neurocognitive, psychological, and social functioning of affected individuals. It is also well known that the clinical symptoms of SB place considerable physical, psychological, and social demands on the family members involved (Greenley et al. 2006; Holmbeck et al. 2003; Kelly et al. 2008; Singh 2003). Despite the pervasive impact that this condition has on family members and affected individuals, there are few family-based interventions for this at-risk population. In fact, a recent review of the literature on family interventions failed to identify any evidence-based interventions that focused on improving the psychosocial functioning of families of youth with SB (Holmbeck et al., 2006). Thus, the web-based product that is the focus of this special issue will be a welcome offering for families who currently lack such a resource.

Although web-based products for families of youth with SB have not been available until this time, there are family-oriented products for populations other than SB, including chronic pain, traumatic brain injury, cancer, and encopresis (Ritterband & Palermo, 2009). Research that examines the utility of such sites has revealed that parents and affected youth find these web resources to be useful as they work on personal goals (Long & Palermo, 2009) and that their knowledge of their condition increases with increased use (Wade, Walz, Carey, & Williams, 2009; also see Lewis, 1999). In some cases, however, utilization has been lower than expected, perhaps because recruitment for the studies was timed inappropriately (i.e., too close to diagnosis) or because the modules were too time intensive. Interestingly, family utilization is higher if hand-on training is provided (Ewing et al., 2009).

The current paper focuses on how this new website, to be housed at the Spina Bifida Association of America (SBA) and based on the Life Course Model discussed throughout this journal issue, can help family members build on the strengths of individuals with SB and address areas of difficulty. Moreover, and consistent with the developmental orientation of the Life Course Model, we adopt a developmental perspective in this paper. That is, we maintain that the Life Course Model website will be useful at all stages of development, with the information provided for families at one stage of development building on the information provided for those at earlier stages of development.

First, we provide a brief overview of relevant theories that supported the development of the Life Course Model, on which the website is based. Next, we review the literature on the adjustment of families of individuals with SB as well as the literature on the psychosocial adjustment of affected youth. Specifically, we provide an overview of areas of difficulty for which families are most likely to seek help when using this product. We also expect that families will use the product to build on areas of existing strength. Finally, and most importantly, we discuss how families may benefit from engagement with the three content areas covered by this website, namely: (a) child health and the transfer of medical management from parent to child (“Health/Self-Management”), (b) the development of social relationships (“Social Relationship”), and (c) the achievement of milestones during emerging adulthood, including achievements in the areas of education and employment (“Education, Employment, & Income Support”).

Incorporation of Family-Centered Care and the Chronic Care principles into the Life Course Model

The Life Course Model is described elsewhere in this journal issue. The Swanson article details the conceptual thinking that incorporated principles of normal child development and the International Classification of Functioning, Health and Disability (ICF) into a framework, termed the Life Course Model. Concisely, the Life Course Model assumes: 1) for optimal development in different domains, children need to attain a sequence of milestones, which are common to all children; 2) the ICF contributes the functional domains of importance and the principle that function is an outcome of the interaction between underlying impairment (e.g., cognitive deficit, leg weakness) and the surrounding environment (family, school, community).

The Life Course model is also anchored in two interlocking models of health care delivery, Family-Centered Care (FCC) and the Chronic Care Model (CCM), both of which underscore the central importance of partnering with families to enhance medical and psychosocial outcomes for children with special health care needs, including those with SB. FCC has deep roots in the pediatric literature, particularly in research and clinical care for children with special health care needs and their families. The key elements of FCC include (a) encouraging parental involvement in decision-making; (b) fostering empowerment and self-management capacity in families; (c) attending to the needs of all members of the family unit; and (d) providing culturally respectful services (Law et al., 2003; Rosenbaum, King, Lase, & Evans, 1998; Shelton, Jeppson, & Johnson, 1987). FCC also emphasizes tailoring services to each family's identified strengths, priorities, and needs (Moore, Mah, & Trute, 2009; Nijhuis et al., 2007).

This Life Course Model is consistent with the fundamental principles of FCC through its emphasis on equipping key stakeholders (including individuals with SB and their parents) with scientific data, assessment tools, and community resource information in three content domains: health/self-management, social relationships, and education/income support. The complementary sources of information presented on the Life Course Model website will ideally maximize parents' capacity for informed decisions about their child's health care and position them to advocate for their child's and family's needs across the lifespan.

Establishment of the Life Course Model and construction of the website was similarly guided by aspects of the Chronic Care Model (CCM) which suggests that productive interactions in health settings develop from “informed, activated patients and prepared, proactive practice teams” (Wagner, 1998, pg. 3). Development of the CCM was sparked by increased recognition of the shortcomings of the health system in attending to psychosocial demands associated with chronic health conditions, namely the physical, social, and psychological stressors experienced by both the affected individual and surrounding family (Wagner et al., 2001). To address this apparent gap in clinical care, the CCM provides evidence-based guidelines for improving health services at multiple levels of the health system (community, organization, practice, and patient levels). Specifically, the model purports that ideal patient-provider interactions, reduced health care costs, enhanced patient satisfaction, and optimal health outcomes result from proper health care organization and delivery system design, systematic use of clinical information systems, health care provider decision support, patient and caregiver self-management support, and community linkages and resources (Glasgow et al., 2005; Wagner et al., 2005). Another aspect of CCM is the Shared Management model, in which professionals and families intentionally shift care responsibility across the life course, with the individual assuming full responsibility in adulthood (Gall et al., 2006)

The Life Course Model website addresses multiple dimensions of the CCM, namely (1) provider decision support (2) patient and caregiver self-management support and (3) community linkages and resources. Health care providers may access the website to learn “teaching tips” as they strive to partner with individuals with SB and their families on topics of interest. Importantly, content on health/self-management, social relationships, and education/income support is presented from a lifespan perspective which will likely address immediate as well as long-term concerns identified by parents and individuals with SB. In the following sections, we first review the extant literature on the adjustment of family members who have a child with SB and the psychosocial adjustment of youth with SB, highlighting areas of difficulty that are addressed by the Life Course Model website. Next, we delineate how families may benefit from the website, including how this novel resource might maximize individual and family self-management.

Review of Past Research on Family Functioning in SB

Family relationships are particularly salient and influential social relationships for youth with SB, given that children with SB tend to be more socially isolated from their peers than are typically developing children (Holmbeck et al. 2003). Further, we are interested in family relationships because SB impacts not only the affected child but the parents and other family members as well. Given the pervasive impact of this condition, we were also interested in discussing the level of psychosocial adjustment in such individuals across multiple adjustment domains (e.g., internalizing symptoms, externalizing symptoms, self-concept).

Family functioning

Holmbeck and colleagues (2006) published a review of research that examined the impact of SB on family functioning (also see Ammerman et al. 1998; Greenley et al. 2006; Kelly et al. 2008; Singh 2003). In general, the findings of past work support a “disruption-resilience” view of family functioning (Costigan et al. 1997). That is, SB appears to disrupt some aspects of family and parent functioning for many families, but such families also tend to demonstrate considerable resilience across other adjustment domains. A significant number of family members with children who have SB report difficulties in maintaining clear roles and responsibilities in the family system (23% in the clinically problematic range; Ammerman et al., 1998). With respect to risk factors, Holmbeck, Coakley et al. (2002) found that families of youth with SB who were also from lower SES backgrounds were particularly at-risk for lower levels of family cohesion, supporting a cumulative risk view of such families (i.e., SB status and lower SES have additive effects on family functioning). Given this, it will be particularly important to market this website to families from low-income backgrounds and to address issues related to the availability of computer resources in this sub-population.

Interestingly, families of youth with SB do not appear to change with the development of their offspring in the same manner as is found with typically developing youth. For example, with respect to family conflicts, Coakley et al. (2002) found that, unlike their typically developing peers, families of youth with SB did not evidence normative increases in family conflict as a function of pubertal development. These investigators speculated that families of youth with SB may be less responsive to developmental change. In support of this “attenuated response to development” hypothesis, Jandasek, Holmbeck and colleagues (2009) conducted longitudinal growth analyses over the age period of 9–15 years of age and found that family conflict intensity increased over this early adolescent age range in families of typically developing youth but not in families of children with SB. Further, parents of youth with SB are less likely to discuss issues of sexuality with their offspring than are parents of typically developing youth (Blum et al. 1991). Therefore, this website aims to serve as a resource to help parents be more responsive to maturational changes in their child with SB.

Adjustment of parents and parenting behaviors

Despite the relatively low levels of family dysfunction at the family systems level, it appears that a sizable minority of parents of children with SB exhibit clinical levels of global psychological distress (e.g., anxiety, depressive symptoms, somatic complaints; Holmbeck et al. 1997; Kronenberger & Thompson 1992a). Although most studies that report on parental functioning have focused on maternal functioning, one study of fathers of children with SB indicated that fathers exhibited higher levels of global distress compared to fathers from comparison families (Holmbeck et al. 1997). In a recent meta-analysis of 15 studies, Vermaes, Janssens, Bosman, and Gerris (2005) found medium to large effect sizes for the impact of SB on mother and father psychological adjustment, with somewhat larger effects sizes for mothers (d=.73) than for fathers (d=.54).

Across several studies, parents of children with SB tend to experience more stress in their roles as parents than do comparison parents (Holmbeck et al. 1997; Macias et al. 2007; Vermaes, Gerris et al. 2007). Typically, such parents feel less satisfied and competent as parents, feel more isolated, are less adaptable to change, and hold less optimistic views about the future than comparison parents (Barakat & Linney 1995; Grosse et al. 2009; Holmbeck et al. 1997; Sawin et al. 2003). Parents who are single, socially isolated, older, or from an ethnic minority or a low SES background are particularly at-risk for such outcomes (Barakat & Linney 1992; Fagan & Schor 1993; Holmbeck, Coakley et al. 2002; Kronenberger & Thompson 1992b; Macias et al. 2001).

With respect to parenting behaviors, it has been found that increases in parental responsiveness are associated with increases in adaptive coping strategies in youth with SB (e.g., problem-focused coping; McKernon et al., 2001). However, parents of children with SB tend to exhibit higher levels of intrusiveness, psychological control, and authoritarian parenting (i.e., parenting that undermines the autonomy development of their offspring; Holmbeck, Johnson et al. 2002; Holmbeck, Shapera et al. 2002; Sawin et al. 2003; Seefeldt et al. 1997; Vermaes et al. 2007) and these behaviors tend to be linked with less desirable child outcomes. Specifically, higher levels of intrusiveness (sometimes referred to as overprotectiveness) tend to be associated with lower levels of decision-making autonomy which are, in turn, related to higher levels of psychosocial difficulties (Holmbeck, Johnson et al. 2002; Sawin et al. 2003). Thus, parents may find this product useful in learning how to avoid certain forms of parenting that may not be beneficial to their child, which appear to be more common in families of children with SB.

Adjustment of siblings

There are few studies that examine the functioning of siblings of children with SB. Findings have been contradictory, as an early study using teacher report found a fourfold greater likelihood of adjustment problems for siblings relative to a comparison sample (Tew & Laurence 1973), while a later study of siblings of youth with SB reported no differences in self-concept compared to siblings of typically developing youth (Kazak & Clark 1986). Qualitative research has identified both positive and negative outcomes related to having a sibling with SB. For example, siblings report significant levels of concern for the health of their sibling with SB, emotional upset in relation to their siblings' experience with discrimination, teasing, and bullying, and sadness related to the lack of opportunities to engage in physical activities with their siblings with SB (Bellin et al. 2008; Kiburz 1994). Siblings have also identified some positive effects, such as increased empathy for their sibling and a greater appreciation for their own physical abilities (Bellin et al. 2008; Kiburz 1994).

The behavioral and psychological functioning of siblings have been found to be significantly associated with socioeconomic status, family cohesion, perceptions of social support, and their knowledge of and attitudes towards the illness (Taylor et al. 2001; Williams et al. 1999; Williams et al. 2002). For siblings of children with SB, more positive attitudes toward SB, greater family satisfaction, lower levels of sibling conflict, and increased social support from classmates significantly predicted higher levels of self-concept and prosocial behavior, and lower rates of behavior problems (Bellin et al. 2009). In this study by Bellin and colleagues (2009), family satisfaction was the only significant predictor across all three sibling adjustment outcome measures, suggesting that family variables may be particularly salient for sibling adjustment. Therefore, parents of youth with SB may also use this website tool to learn of ways to protect their typically-developing offspring from psychosocial difficulties.

Review of Past Research on Psychosocial Functioning in SB

Research on children and adolescents

Previous studies have demonstrated that youth with SB are at-risk for exhibiting higher levels of internalizing symptoms (e.g., depression, anxiety) and lower levels of self-concept than comparison children (Ammerman et al. 1998; Appleton et al. 1997; Holmbeck et al. 2003; Shields et al. 2008). Those with hydrocephalus often exhibit difficulties in certain areas of cognitive functioning and school performance (e.g., arithmetic, nonverbal cognitive skills; Fletcher & Dennis 2010). Such children are also more likely to exhibit attention and concentration difficulties in school settings and tend to score at the low end of the average range of intelligence (Fletcher & Dennis 2010; Holmbeck DeLucia et al. in press; Hommeyer et al. 1999).

To date, more work has been done in evaluating children with SB in the areas just noted than has been conducted in the area of social adjustment. This is surprising given that this area of psychosocial functioning is problematic for most children with SB (Blum et al. 1991; Holmbeck et al. 2003). Youth with SB, as compared to typically developing youth and those with other chronic conditions, tend to be socially immature and passive, have fewer friends, be less likely to have social contacts outside of school, and date less during adolescence (e.g., Blum et al. 1991; Ellerton et al. 1996; Holmbeck et al. 2003) and these difficulties appear to be maintained over time (Holmbeck DeLucia et al. in press).

The degree to which an adolescent exhibits decision-making autonomy in both medical and non-medical areas is another highly salient developmentally-oriented variable for these youth and their families (Anderson & Coyne 1993; Friedman et al. 2009). Typically-developing adolescents view more issues as falling within their own decision-making jurisdiction than they did during childhood and they are also increasingly likely to question the legitimacy of parental authority (Darling et al. 2008; Smetana 1988). Interestingly, Holmbeck's and colleagues findings on youth with SB run contrary to this typical developmental trend. Specifically, findings revealed that children and adolescents with SB (and especially boys and those with lower levels of intelligence) tend to be more dependent on adults for guidance, less likely to exhibit behavioral autonomy at home, less likely to exhibit intrinsic motivation at school, and less likely to express their own viewpoints during observed family interactions (Davis et al. 2006; Friedman et al. 2009; Holmbeck, Johnson et al. 2002; Holmbeck et al. 2003). Variation in intrinsic motivation (i.e., interest in learning and mastery, curiosity, preference for challenge) proved to be the most robust predictor of psychosocial adaptation (i.e., scholastic success, social acceptance, and positive self-worth) in a study by Coakley et al. 2006.

Research on emerging adults

Emerging adulthood is a critical period in the life of older adolescents with SB (Blum et al. 2002; First World Congress on SB Research and Care, March, 2009, Orlando, FL; Holmbeck et al. in press; Lollar, in press). In general, many young adults with SB are capable of high levels of independent functioning across multiple domains but most have not been successful in fully engaging in the larger community of typically developing emerging adults (Buran et al. 2004). In this section, we review findings related to many of the major milestones of emerging adulthood (i.e., psychosocial adjustment, educational achievement, and employment and vocational outcomes).

Regarding psychosocial adjustment, emerging adults with SB, like their younger counterparts, are at-risk for depressive symptoms and anxiety (Bellin et al. in press; Dicianno et al. 2009). Regarding educational outcomes, emerging adults with SB are less likely to go to college (41 to 49% of individuals with SB go to college vs. 66% of typically developing youth; Bowman et al. 2000; Cohen et al. 2003; Zukerman 2008). With respect to vocational outcomes, recent studies report rates of full- or part-time employment ranging from 36 to 41% (Liptak et al. 2009; McDonnell & McCann 2000; Bellin et al., 2010; Zukerman 2008), which are significantly lower than those found in typically developing youth (e.g., roughly 75%; Cohen et al. 2003; Hamilton & Hamilton 2006; Zukerman 2008) and in those with other chronic conditions (e.g., asthma, cancer; 68% to 78%; Gerhardt, Dixon et al. 2007; Liptak et al. 2009).

Unfortunately, we know almost nothing about factors that predict whether or not an emerging adult with SB is able to go to college and become employed. Studies that have been conducted on individuals with SB have tended to focus only on demographic or medical severity predictors. For example, Liptak et al. (2009) found that communication problems, difficulties with managing responsibilities, lower levels of parental education, and higher rates of parental unemployment were associated with poorer social, vocational, and educational transitions. Bellin et al. (2010) found that young adult males with SB were more likely to work than females, but that females were more likely to live independently. With respect to medical severity, Hetherington, Dennis, Barnes, Drake, and Gentili (2006) found that spinal lesion level and number of shunt revisions were related to employment outcome (with higher lesion levels and more shunt revisions being related to worse occupational outcome; Barf et al., 2009, found similar results in the Netherlands).

In the absence of actual data, many have speculated about why young adults with SB are less likely to be successful in negotiating these emerging adulthood milestones. For example, some have described the complexities in managing “real world” responsibilities with a chronic physical condition, including transportation difficulties and issues related to accessibility (Barf et al. 2009; Dicianno et al. 2009). Other explanations for these developmental delays focus on financial concerns (including lack of health insurance; Park et al. 2006), lack of job training and vocational rehabilitation services, restricted experiences with self-management (Sawin et al., 2009), employment discrimination, stigmas related to physical appearance, and a lack of autonomy-related socialization in early childhood (Dicianno et al. 2008, 2009; Schriner et al. 1993). Many of these issues are addressed with the Life Course Model website resource and such content will likely be useful to families.

How the Life Course Model Website Informs and Empowers Families

This section focuses on the 3 major domains of the website: health and self-management, social relationships, and education/employment. The content within each domain is based on the theories discussed earlier and the research findings just reviewed in the areas of family functioning, psychosocial adjustment, and the development of independent functioning. Each of the website domains is designed to provide families with readily accessible guidance in raising and caring for children with SB. The website (Zabel, 2010) presents strategies that families can use to foster developmental achievements within each domain area as children progress from childhood into emerging adulthood and beyond. At the site, searches can be performed either by topic (Health/Condition Self Management, Social/Personal Relationships, Education/Employment) or by age (pre-school, school-age, adolescence, or young adulthood) and searches can be saved or printed for easy reference. It is important to remember that the abilities of individuals with SB vary greatly, and cognitive and emotional developmental level rather than a specific age are important to consider when using the website. In addition to using this website, formal evaluations by psychologists, social workers, occupational therapists, vocational therapists, and other professionals can aid families in determining appropriate interventions.

Health and Self-Management: Helping Youth to Become Self-Reliant

The primary goal of the health/self management domain is to help youth become self reliant in managing their SB. To achieve this goal, the website's health/self management section contains evidence-based information and resources on SB and anticipatory guidance for families to assist them in managing their children's SB.

The website content of this domain is designed to facilitate families' understanding and competencies in managing the long-term health care and special needs of their children. The health information, anticipatory guidance, and resources available on the website serve to inform families on the application of evidence-based strategies for their children that aim to foster an optimal state of health, prevent the occurrence of complications and secondary conditions resulting in adverse health consequences, promote the development of a positive body image, and cultivate the development of self management skills that culminates ultimately in youth who become more self reliant in managing their SB.

Six areas of specific health concerns for children with SB are covered, including: mobility, skin integrity, sexuality, obesity prevention, bowel and bladder management, and condition management. Each of the six health areas of the health/self management domain begins with the identification of developmental milestones, which represent appropriate expectations for the identified health need that is aligned with the child's developmental stage. For example, during the preschool period, developmental milestones regarding sexuality begin with body awareness and naming body parts. During the school age and adolescent periods, the developmental milestones build upon the initial foundation of sexuality learned during the preschool period towards achieving an understanding of themselves as sexual beings. By adulthood, the key milestones are the development of an intact sexual identity and an understanding of sexual relationships.

In terms of condition management, a preschooler's expected milestone achievement of SB knowledge is demonstrated by the following four basic skills: 1) knows the name of SB and its functional effects on mobility and bowel and bladder management; 2) knows that SB is a long-term condition and is the reason for their functional limitations; 3) identifies medication by appearance; and 4) assists parent in ordering supplies and medications. In sum, the delineation of developmentally appropriate milestones in each of the six areas of health/self management serves to inform parents concerning appropriate expectations for each developmental age.

Each key milestone is accompanied by descriptions of behaviors that the child/youth/young adult should demonstrate if s/he has achieved this milestone. For example, in the area of sexuality, the preschool child would be expected to know the difference between “good” and “bad” touching, engage in gender-based imaginary role playing, and be able to name the anatomical body parts on a doll. The descriptions of behaviors indicative of achievement of milestones in the health/self management areas provide families with concrete examples to evaluate their children's progress in meeting the developmental milestones. The extent to which the child achieves or fails to achieve developmental milestones in any of the six areas of the health/self management domain creates opportunities for the family to consult with the specialized team and/or primary care pediatrician as part of the child's developmental surveillance during regularly scheduled specialty or primary care appointments.

The website offers specific ideas for interventions, resources, and referrals for each of the health/self management areas. For example, recommendations to improve skin integrity for the school age child include wearing seamless socks to reduce pressure on the feet, ensuring that the child does not walk in bare feet, washing and checking feet daily, and trimming toenails regularly. Further, these suggestions are coupled with a list of resources and referrals for families, including professionals who may be consulted, a specialty shoe retailer, and other websites for skin care assistance.

The information in the health/self management domain was developed to address families' concerns and uncertainties as to what are developmentally appropriate and reasonable expectations for their children. This website provides parents with evidence-based health information, guidance, and resources to inform and empower families to assist their child with SB in managing the condition.

Social Relationships: Developing a Social Network

As noted earlier, individuals with SB have been reported to be less satisfied with partnership relations (Barf et al., 2007) when compared to peers who do not have SB, and to report low levels of social activities with peers (Buran et al., 2004). Although factors indicative of greater severity or involvement of the condition, such as the presence of hydrocephalus, higher level of lesion, or the use of a wheelchair, have been correlated with less participation in society, even persons who are community ambulators have been found to score low on social integration measures (Dicianno et al., 2009).

In light of these findings and the intuitive significance of relationships and participation in society, this domain of the website outlines developmental milestones from young childhood to young adulthood that are considered to increase the chances of developing fulfilling personal and social relationships throughout the life course. The development of relationships with parents, siblings, friends, and intimate/romantic partners was targeted during pre-school, school-age, adolescence, and the young adulthood years, respectively. In addition, tips and interventions that may be helpful in the achievement of a particular age-specific milestone are offered to enhance pre-existing strengths and address areas of concern.

As an example of how one might use this website, suppose that a mother of a pre-school aged child with SB is interested in learning more about how to help her child develop friendships. She can log on to the site, navigate to the preschool age category and, from there, navigate to the relationships domain. She will be prompted to consider how her own child is developing in the area of making and keeping friends. Clearly, young children are not expected to have a flourishing social network but the information provided will give developmentally appropriate pointers regarding some of the milestones that parents can consider in the area of developing friendships. It should be stressed that the website is intended as a resource and to complement, but not replace, professional opinion or assessment.

If, instead, the mother decides to learn more about how her child can develop more positive relations with his/her parents, she would find that a close attachment between child and parent is highlighted as a developmental milestone. In the corresponding tips and intervention section, information is available on secure attachment as well as some parenting strategies likely to increase the chances of achieving a secure attachment. A parent of a school-aged child with SB who is, instead, concerned with sibling relations, might be prompted to look for “warm relationships between siblings.” This milestone references the initial development of empathy and the management of conflict. Additionally, the need for the sibling of the child with SB to meet his/her own developmental needs is stressed. Examples of corresponding tips include points on bullying, problem solving, conflict resolution, as well as the importance of also focusing on the siblings' experiences and achievements. Relationships with friends are especially important during adolescence; thus, developmental milestones in this section emphasize the importance of having close, same age/gender friends and that the adolescent participate in group activities with friends. If those milestones are met, there may be no need to delve into the tips available. However, if the milestones are not met, concrete information is available on strategies that can be used to increase the chances of making friends and participating in group activities.

Whereas the parents of a child with SB are the most likely family members to use the website during the younger developmental stages, the individual with SB may be the most likely candidate to search the adolescent or young adult sections pertaining to social relationships. For a young adult, relationships with intimate and romantic partners may be of interest. Milestones discussed include, for example, the preservation of self-esteem and self-confidence, the ongoing development of social coping strategies, and the development of assertiveness and social initiative. Some of the tips include strategies for engaging in social opportunities, steps to increase the likelihood of successful social interactions, and maintaining contact with a large group of friends even if he/she is already dating.

Education, Employment, and Income Support: Achieving the Milestones of Emerging Adulthood

Parenting involves preparing one's child to become an independent adult. As reviewed in previous sections, for parents of children with SB, this task is complicated by the medical, psychosocial, and neurocognitive difficulties associated with SB, such as a complex medical regimen, difficulties with ambulation and mobility, and problems with executive functions. Preparing one's child to achieve the developmental milestones of emerging adulthood begins as early as the preschool years, though the target skills and milestones vary as a function of the child's developmental level. Facilitating cognitive development and developmentally-appropriate responsibility-taking at an early age can set one's child on a trajectory for success in later years. The aim of this domain of the website is to allow parents to identify strengths and areas for improvement regarding education and employment based on their child's developmental level, and to build their child's competencies to promote future milestone achievement. The website resources may be particularly useful during times of transition, such as academic transitions (e.g., from elementary school to middle school or high school) and vocational transitions (e.g., preparing a teenager or young adult for his or her first job).

Preschool

Although preschool is a long way from emerging adulthood, early cognitive development helps set the foundation for later academic and vocational success. The website provides questions for parents to assess their child's achievement of important cognitive developmental milestones at this age, such as early object use, problem-solving skills, symbolic play, and visual perception. Developmentally-appropriate responsibility-taking skills can also be evaluated, such as participating in feeding and dressing oneself and cleaning up after oneself. The assessment questions are not meant to be a substitute for a formal cognitive or developmental evaluation; however, these questions can be useful in identifying areas of strength and weakness and may indicate the need for a professional evaluation. The website also provides some general information and web links regarding how to seek early intervention services, assessment tools often used by professionals, and important laws, such as the Individuals with Disabilities Education Act (IDEA). Further, there are practical suggestions for parents to facilitate the development of specific skills or enhance strengths that children already demonstrate. For example, to encourage the development of decision-making skills, parents can provide children with age-appropriate choices, such as wearing a green or blue shirt, or drinking milk or juice. The website also provides references for further reading and links to helpful resources, including lists of developmentally-appropriate toys.

School-age

The focus of the school-age years is on academic engagement and success, and increased participation in self-care and household chores. Assessment at this developmental stage examines academic success in fundamental subjects such as reading and math, as well as whether the child is exhibiting core processing deficits associated with meningomyelocele, including executive function, memory, and attention problems. These deficits can negatively impact academic performance and the ability to follow-through with responsibilities. Time management skills also become increasingly important during the school-age years. The website suggests that parents seek a neuropsychological assessment for their child so that interventions, if needed, can be individually-tailored to meet their child's needs. The website provides several practical suggestions for improving specific areas of weakness, such as functional math skills, memory problems, and organizational skills. Parents may want to share some of the references and tools provided by the website with their child's teachers to assist the child in utilizing such strategies in the school environment. Further, the website informs parents that children are entitled to a free and appropriate public education and encourages parents to advocate for the most appropriate services for their child. The website also contains recommendations that parents set age-appropriate expectations for household responsibilities, such as regular chores, participating in self-care, caring for personal devices (braces, wheelchair, etc.), getting ready for school, and managing an allowance. Recommendations regarding setting up routines and making environmental modifications, such as placing items needed to complete chores within reach, are provided to help parents assist their children in successfully increasing their responsibilities at home.

Adolescence

The website focuses on preparing adolescents for the transition into emerging and young adulthood, shifting from general cognitive development more directly to vocational development. It is recommended that parents work with school personnel to develop a specific transition plan as part of their adolescent's Individualized Education Plan (IEP). An additional milestone of this age is to begin to explore meaningful and realistic career options. Parents can provide opportunities for exposure to various careers and post-secondary educational options, as well as help adolescents continue to develop the interpersonal and organizational skills that will influence success in the workplace. Families can help teens identify areas of strength that can become a vocational pursuit and reward the teen's efforts towards building skills in the chosen area. Although there is great variability among individuals, adolescence is generally characterized by increased responsibility for oneself and one's actions. Parents can help foster an adolescent's autonomy by teaching skills to care for oneself and one's personal belongings, including increased independence in medical self-management and hygiene. Additionally, the website focuses on increasing responsibility outside of the home through increased community engagement, navigation of the community through driving or public transportation, and volunteer or paid job experiences. The practical suggestions offered by the website may be helpful for both parents and teens.

Emerging Adulthood

All of the sections discussed thus far are geared toward helping a child achieve the milestones of emerging adulthood, including participating in post-secondary education or training for employment, beginning a career, obtaining financial security, sustaining health benefits, living independently, and balancing employment/personal life responsibilities. The information on the website aims to reach both young adults and their families to evaluate their success in achieving milestones and build skills to do so. The website gradually shifts the focus from the parent understanding his or her child's strengths and weaknesses to the young adult with SB increasing his or her self-awareness of individual strengths and weaknesses. There are some assessment tools referenced that may aide parents and adults in determining appropriate living situations. At this point, parents are encouraged to assist their adult child in developing skills of self-evaluation, self-questioning, and self-checking, rather than problem-solving for the adult. Parents may direct their adult children to this website for resources on how to solve some of the problems they encounter or use the website together to help the adult evaluate current strengths and choose an area of weakness for targeted behavior change.

Summary and Conclusions

In this paper, we have discussed how this developmentally-oriented Life Course Model website can be useful for parents of youth with SB and for the youth themselves as they move toward the emerging adulthood stage of development. As with any intervention, the concern is that families who most need such support are also those who will be the least likely to use this valuable resource. Thus, it will be critical for the developers of the Life Course Model website to provide outreach to the most at-risk populations and to those who have limited access to computer resources. Because the website is developmentally-oriented, parents and youth will be able to make use of this site beginning in early childhood and across the various stages of child development, with young adults making use of this tool as they transition to early adulthood. As has been done with similar web-based resources developed for youth with other chronic health conditions (Ritterband & Palermo, 2009), evaluation should be conducted on the feasibility and usefulness of this resource for families and individuals affected by SB.

Acknowledgments

Completion of this manuscript was supported in part by funding from the National Spina Bifida Program at the Centers for Disease Control and research grants from the National Institute of Child Health and Human Development (RO1 HD048629) and the March of Dimes Birth Defects Foundation (12-FY01-0098). All authors after the first are listed in alphabetical order by last name; their contributions were similar.

Footnotes

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The findings and conclusions in this article are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.

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