Spina-Bifida Mental Health

ALL INFO IS FROM SPINABIFID ASSOCIATION.ORG

Introduction

Multiple studies have shown that children with Spina Bifida have lower Health Related Quality of Life (HRQOL) than both typically developing individuals without Spina Bifida and children with other chronic health conditions.1-5 Variables such as resilience (e.g., attitude towards Spina Bifida, hope and future expectations, coping skills) have been strongly related to higher HRQOL and quality of life (QOL). In contrast, depression, a lack of optimism and reduced executive functioning are related to lower QOL/HRQOL.5 The interplay between the neuropsychological patterns of development in children, family functioning and quality of life is the context within which the mental health of children with Spina Bifida is best understood. 

Children with Spina Bifida tend to score below average on measures of neuropsychological functioning that involve the construction or integration of information.6-7  The ability to shift attention appropriately (sometimes referred to as executive functioning) is important to social development. Impairments in this area are associated with subsequent internalizing of symptoms (i.e., depressive and anxiety symptoms).8 

Children with Spina Bifida also tend to have social difficulties, including social immaturity and passivity, fewer friends, and fewer social contacts outside of school. They also have fewer romantic relationships during adolescence.9-11  These social difficulties appear to continue into adulthood.9,12  Youth with Spina Bifida may also exhibit lower levels of sexual maturation, knowledge, and experience.13-15 

Children with Spina Bifida are more dependent on their parents for guidance, show less intrinsic motivation at school and exhibit less behavioral autonomy at home.9,12,17  Levels of decision-making autonomy lag behind typically developing peers by about two years.17 Pain and depressive symptoms interfere with social involvement.18 

Children with Spina Bifida exhibit lower levels of participation in physical activities and activities of daily living.19-20 Higher levels of physical activities are related to adaptive outcomes (i.e., participation and HRQOL). Some evidence exists that weight management interventions that include physical activities are effective in this population.21 

The transition from pediatric to adult Spina Bifida health care poses significant challenges.23 For instance, the reported quality of health tends to decline from adolescence to young adulthood, presumably due to difficulties in navigating the transition to health care for adults with Spina Bifida.21,23 

Regarding psychosocial adjustment during emerging adulthood, young adults with Spina Bifida, like their younger counterparts, are at-risk for depressive symptoms and anxiety23-24, but they are less likely to engage in at-risk behaviors than their typically developing peers (e.g., using alcohol and having multiple sexual partners).25 With respect to relationship quality, 

Access to mental health services is a critical issue throughout the lifespan for children with Spina Bifida and their parents and other family members. Such services could begin just after birth for parents as they adjust to having a child with Spina Bifida. During the school years counseling for learning and emotional issues can be accessed via the child’s IEP or 504 Plan. Camp programs can also provide emotional support and a context where children and youth can learn independence and self-management skills. Individual psychotherapy by skilled pediatric psychologists and social workers may be needed during adolescence and adulthood for emotional, educational, and vocational issues related to the transition to adulthood. Regional Independent Living Centers can offer peer counseling and referral to mental health services for adults with Spina Bifida. 

Outcomes

Primary 

1. Achieve optimal mental health throughout the lifespan as evidenced by adaptive psychological, social, and participation outcomes.

Secondary 

1. Maximize adaptation across all factors that are predictive of mental health outcomes (including neuropsychological, family, peer, academic, biological, and condition-related predictors). Access services and supports across appropriate domains to optimize mental health throughout the lifespan.

Tertiary 

1. Maximize self-management, independence, quality of life, and transition-to-adulthood outcomes by addressing mental health challenges.

0-11 months

Clinical Questions

• 1. What parenting interventions can promote mental health for parents and children?

Guidelines

1. Assess family functioning, stressors and supports. Identify strengths and build on resources and supports that encourage resilience.10,24

2. Provide parents with detailed information about Spina Bifida.1 (Prenatal Counseling Guidelines)

3. Connect families with contact information of local Spina Bifida Association (SBA) Chapters, community resources, and the SBA’s National Resource Center. (clinical consensus) (http://spinabifidaassociation.org/chapters/) (http://spinabifidaassociation.org/national-resource-directory/)

4. Address developmental strengths and concerns through information and support. (clinical consensus)

5. Refer to early intervention services [INSERT LINK TO EARLY INTERVENTION] and the American Academy of Pediatrics. (clinical consensus) (INSERT LINK TO https://www.aap.org/en-us/Pages/Default.aspx)

6. Assess quality of parent-child attachment.10

7. Promote effective parenting skills in stimulation, caregiving, and enjoyment of the child to optimize typical child development.1,10 (Neuropsychology Guidelines)

1-2 years 11 months

Clinical Questions

1. What is the psychosocial impact of having Spina Bifida on mental health and adaptation across the lifespan?

2. Which domains of mental health are most adversely affected in individuals with Spina Bifida and in what areas of mental health are individuals with Spina Bifida most resilient?

3. What are some common maladaptive behaviors that can negatively impact persons with Spina Bifida across the lifespan?

4. What resources or practices are most effective at mitigating mental health issues in this population?

Guidelines

1. Address developmental concerns and optimize typical child development by building on resilience, resources, and supports.1 (Self-Management and Independence Guidelines)

2. Encourage families to offer developmentally-appropriate choices in daily life activities, including such things as picking up toys, cleaning up, and doing imitative housework.10

3. Encourage developmentally-appropriate play and social opportunities. (clinical consensus) (Family Functioning Guidelines, Physical Activity Guidelines)

4. Assess parenting skills and provide education on parenting strategies and behavior management techniques as needed.10

5. Provide additional age-appropriate information about Spina Bifida as the child grows.1

6. Continue participation in early intervention services [LINK TO EARLY INTERVENTION], as appropriate. (clinical consensus)

7. Consider referrals for parent-to-parent support opportunities. (clinical consensus)

8. Encourage families to participate in SBA and SBA Chapter-related activities and events (e.g., Spina Bifida Education Days, Walk-N-Roll for Spina Bifida, and other activities organized by local Chapters). (clinical consensus) (http://spinabifidaassociation.org/chapters/)

9. Screen for post-partum depression and post-traumatic stress disorder. (Prenatal Counseling Guidelines)

3-5 years 11 months

Clinical Questions

1. What is the psychosocial impact of having Spina Bifida on mental health and adaptation across the lifespan?

2. Which domains of mental health are most adversely affected in individuals with Spina Bifida and in what areas of mental health are individuals with Spina Bifida most resilient?

3. What are some common maladaptive behaviors that can negatively impact persons with Spina Bifida across the lifespan?

4. What resources or practices are most effective at mitigating mental health issues in this population?

Guidelines

1. Discuss with parents the importance of their child’s socialization and developing friendships with their peers and taking advantage of opportunities for activities. (36, 37) (Family Functioning Guidelines, Neuropsychology Guidelines)

2. Encourage participation in preschool educational programs. (clinical consensus)

3. Discuss the importance of making and keeping schedules/routines, doing chores, modeling behaviors, and making age-appropriate choices and decisions. (clinical consensus)

4. Assess social and psychological development and identify resources that build on strengths and encourage resilience.9,36

5. Refer for social skills training as indicated.36

6. Include optimization of mental health when developing an Individualized Education Program (IEP, IFSP or 504 Plan). (clinical consensus) (Appendix: Early Intervention Services, Individualized Educational Plans (IEP) and 504 Plans)

7. Provide additional age-appropriate information about Spina Bifida as the child grows.1

8. Refer parents to the local school district to begin the process of requesting special education or classroom support (IEP, IFSP, or 504 Plan) needed to optimize their child’s participation in school. (clinical consensus) ) (Appendix: Early Intervention Services, Individualized Educational Plans (IEP) and 504 Plans)

6-12 years 11 months

Clinical Questions

1. What is the psychosocial impact of having Spina Bifida on mental health and adaptation across the lifespan?

2. Which domains of mental health are most adversely affected in individuals with Spina Bifida and in what areas of mental health are individuals with Spina Bifida most resilient?

3. What are some common maladaptive behaviors that can negatively impact persons with Spina Bifida across the lifespan?

4. What resources or practices are most effective at mitigating mental health issues in this population?

Guidelines

1. Encourage participation in community activities for recreation.19-20,28,36,37,38 (Physical Activity Guidelines)

2. Promote the development of friendships by helping families to identify social opportunities (e.g., participation in camps, adaptive sports programs/events, Walk-N-Roll for Spina Bifida, Boy and Girl Scouts, church youth groups, YMCA activities, and SBA and SBA Chapter social events).36

3. Assess the child for depression, anxiety, bullying (including cyber bullying), and social participation. Similarly, identify the child’s strengths and build on resources that encourage resilience. Initiate individual and family interventions when appropriate.9,23

4. Encourage activities and hobbies that improve face-to-face social contact. (clinical consensus) 40

5. Promote transfer of age-appropriate medical responsibility from parent to child in those who have the requisite abilities and cognitive capacity.17 (Family Functioning Guidelines)

6. Discuss the importance of increasing household responsibilities that are appropriately modified to account for mobility and cognitive limitations. (clinical consensus)

7. Refer children with emotional and/or behavioral difficulties for psychological support and counseling. Identify community resources for social and psychological development (e.g., camps, recreation centers and more).9,12

8. Assess the family’s relationship with their child’s school and encourage parents to be advocates for their children in the school setting. (clinical consensus) (Family Functioning Guidelines)

9. Promote the child’s independence and choice in social activities. Promote self-care so that the child is able to be independent in social settings.36 (Self-Management and Independence Guidelines)

10. Promote appropriate after-school sports and club activities.38

11. Provide additional age-appropriate information/knowledge about Spina Bifida as the child grows. Begin to include child in clinical decision-making.39 (Neuropsychology Guidelines)

12. Promote and encourage participation in community and SBA and SBA Chapter-related activities. (clinical consensus) (http://spinabifidaassociation.org/chapters/) (http://spinabifidaassociation.org/national-resource-directory/)

13-17 years 11 months

Clinical Questions

1. What is the psychosocial impact of having Spina Bifida on mental health and adaptation across the lifespan?

2. Which domains of mental health are most adversely affected in individuals with Spina Bifida and in what areas of mental health are individuals with Spina Bifida most resilient?

3. What are some common maladaptive behaviors that can negatively impact persons with Spina Bifida across the lifespan?

4. What resources or practices are most effective at mitigating mental health issues in this population?

Guidelines

1. Assess peer relationships and friendships.36-37

2. Assess for at-risk behaviors (alcohol, drug, or tobacco use and unsafe or unprotected sex), and identify areas of strength and build on resources that encourage resilience.28

3. Screen for depression or anxiety and initiate individual and family interventions when appropriate.9,23

4. Provide counseling and/or behavioral support as needed. (clinical consensus)

5. Promote transfer of medical responsibility from parent to child in those who have the requisite abilities and cognitive capacity.17 (Self-Management and Independence Guidelines)

6. Refer for social skills training as needed.36

7. Encourage activities and hobbies that improve face-to-face social contact. 40 (clinical consensus)

8. Provide counseling regarding sexuality, sexual functioning, fertility, and contraception. Focus on sexual safety issues.13-15 (Sexual Health and Education Guidelines)

9. Discuss the safe use of and choices around drugs and alcohol and conduct risk assessment in this domain.25

10. Discuss the importance of initiating and organizing opportunities for social activities.36

11. Discuss the relationship between independence and interdependence and mental health. (clinical consensus) (Self-Management and Independence Guidelines)

12. Facilitate the child’s involvement with a peer role model, such as a teen with Spina Bifida who is of a similar age). (clinical consensus)

13. Provide or refer to opportunities for formal or informal mentoring. (clinical consensus)

14. Encourage the teen to participate in the school’s IEP transition team meeting. (clinical consensus)

15. Develop a plan for the teen’s transition to independent living, post-secondary education, vocational training, and career interests. (clinical consensus) (Transition Guidelines)

16. Develop a plan for transition from pediatric to adult health care. (clinical consensus) (Transition Guidelines)

18 + years

Clinical Questions

1. What is the psychosocial impact of having Spina Bifida on mental health and adaptation across the lifespan?

2. Which domains of mental health are most adversely affected in individuals with Spina Bifida and in what areas of mental health are individuals with Spina Bifida most resilient?

3. What are some common maladaptive behaviors that can negatively impact persons with Spina Bifida across the lifespan?

4. What resources or practices are most effective at mitigating mental health issues in this population?

Guidelines

1. Screen for depression or anxiety and initiate interventions when appropriate.6-7,11

2. Continue the transfer of medical responsibilities in young adults with Spina Bifida who have the requisite abilities and cognitive capacity.16

3. Encourage activities and hobbies that improve face-to-face social contact. (clinical consensus)

4. Encourage ongoing efforts to promote friendship and social intimacy.37

5. Encourage and promote vocational or occupational goals and pursuits. (clinical consensus) (Transition Guidelines)

6. Maintain efforts for good general health promotion and exercise, as well as specialized Spina Bifida care. Optimize health to reduce the risk of obesity and maximize social opportunities and mental health.39,41 (Physical Activity Guidelines)

7. Recommend SBA resources (http://spinabifidaassociation.org/learn-about-sb/adults/). (clinical consensus)

8. Continue to refine the plan to ease transition from pediatric to adult health care. (Transition Guidelines)

Research Gaps

1. What services and supports can be utilized to mitigate barriers to optimal mental health throughout the lifespan?

2. What are the links between mental health and the following outcomes: self-management, independence, continence, quality of life, and the transition from pediatric to adult health care?

3. What interventions are available to enhance mental health across the lifespan in individuals with Spina Bifida?

4. What methods have been implemented by providers who care for children and adults with Spina Bifida and have an identified mental health diagnosis to guide their transition to adult health care?

5. What resilience factors mediate mental health outcomes in children and adults with Spina Bifida?

References

1. Copp, A. J., Adzick, N. S., Chitty, L. S., Fletcher, J. M., Holmbeck, G. N., & Shaw, G. M. (2015). Spina bifida. Nature Reviews Disease Primers, 1, 15007.

2. Murray, C., Holmbeck, G., Ros, A., Flores, D., & Mir, S., & Varni, J. (2015). A longitudinal examination of health-related quality of life in children and adolescents with Spina Bifida. Journal of Pediatric Psychology, 40, 419-430.

3. Padua, L., Rendeli, C., Rabini, A., Girardi, E., Tonali, P., & Salvaggio, E. (2002). Health-related quality of life and disability in young patients with Spina Bifida. Archives of Physical Medicine and Rehabilitation, 83(10), 1384-1388.

4. Rofail, D., Maguire, L., Kissner, M., Colligs, A., & Abetz-Webb, L. (2014). Health-related quality of life is compromised in individuals with Spina Bifida: Results from qualitative and quantitative studies. European Journal of Obstetrics & Gynecology and Reproductive Biology, 181, 214-222.

5. Sawin, K. J., & Bellin, M. H. (2010). Quality of life in individuals with Spina Bifida: a research update. Developmental Disabilities Research Reviews, 16(1), 47-59.

6. Iddon, J. L., Morgan, D. J. R., Loveday, C., Sahakian, B. J., & Pickard, J. D. (2004). Neuropsychological profile of young adults with Spina Bifida with or without hydrocephalus. Journal of Neurology, Neurosurgery, and Psychiatry, 75(8), 1112-1118.

7. Rose, B., & Holmbeck, G. N. (2007). Attention and executive functions in adolescents with Spina Bifida. Journal of Pediatric Psychology, 32, 983-994.

8. Lennon, J. M., Klages, K. L., Amaro, C. M., Murray, C. B., & Holmbeck, G. N. (2015). Longitudinal study of neuropsychological functioning and internalizing symptoms in youth with Spina Bifida: Social competence as a mediator. Journal of Pediatric Psychology, 40, 336-348.

9. Holmbeck, G. N., Westhoven, V., Phillips, W. S., Bowers, R., Gruse, C., Nikolopoulos, T., Totura, C. W., & Davison, K. (2003). A multimethod, multi-informant, and multidimensional perspective on psychosocial adjustment in preadolescents with Spina Bifida. Journal of Consulting and Clinical Psychology, 71, 782-796.

10. Holmbeck, G. N., & Devine, K. A. (2010). Psychosocial and family functioning in Spina Bifida. Developmental Disabilities Research Reviews, 16, 40-46.

11. Wallander, J. L., Feldman, W. S., & Varni, J. W. (1988). Physical status and psychosocial adjustment in children with Spina Bifida. Journal of Pediatric Psychology, 14(1), 89-102.

12. Holmbeck, G. N., DeLucia, C., Essner, B., Kelly, L., Zebracki, K. Friedman, D., & Jandasek, B. (2010). Trajectories of psychosocial adjustment in adolescents with Spina Bifida: A six-year four-wave longitudinal follow-up. Journal of Consulting and Clinical Psychology, 78, 511-525.

13. Gatti, C., Del Rossi, C., Ferrari, A., Casolari, E., Casadio, G., & Scire, G. (2009). Predictors of successful sexual partnering of adults with Spina Bifida. Journal of Urology, 182(4 Suppl), 1911-1916.

14. Linstow, M. V., Biering-Sorensen, I., Liebach, A., Lind, M., Seitzberg, A., Hansen, R. B., & Biering-Sorensen, F. (2014). Spina bifida and sexuality. Journal of Rehabilitation Medicine, 46(9), 891-897.

15. Visconti, D., Noia, G., Triarico, S., Quattrocchi, T., Pellegrino, M., Carducci, B., De Santis, M., & Caruso, A. (2012). Sexuality, pre-conception counseling and urological management of pregnancy for young women with Spina Bifida. European Journal of Obstetrics, Gynecology, and Reproductive Biology, 163(2), 129-133.

16. Friedman, D., Holmbeck, G. N., DeLucia, C., Jandasek, B., & Zebracki, K. (2009). Trajectories of autonomy development across the adolescent transition in children with Spina Bifida. Rehabilitation Psychology, 54, 16-27.

17. Devine, K. A., Wasserman, R. M., Gershenson, L. S., Holmbeck, G. N., & Essner, B. (2011). Mother-child agreement regarding decision-making autonomy: A longitudinal comparison study of families of adolescents with and without Spina Bifida. Journal of Pediatric Psychology, 36, 277-288.

18. Iddon, J. L., Morgan, D. J. R., Loveday, C., Sahakian, B. J., & Pickard, J. D. (2004). Neuropsychological profile of young adults with Spina Bifida with or without hydrocephalus. Journal of Neurology, Neurosurgery, and Psychiatry, 75(8), 1112-1118.

19. Buffart, L. M., van den Verg-Emons, R. J., van Meeteren, J., Stam, H. J., & Roebroeck, M. E. (2009). Lifestyle, participation, and health-related quality of life in adolescents and young adults with myelomeningocele. Developmental Medicine and Child Neurology, 51(11), 886-894.

20. Marques, A., Maldonado, I., Peralta, M., & Santos, S. (2015). Exploring psychosocial correlates of physical activity among children and adolescents with Spina Bifida. Disability and Health Journal, 8(1), 123-129.

21. Rimmer, J. H., Wang, E., Pellegrini, C. A., Lullo, C., & Gerber, B. S. (2013). Telehealth weight management intervention for adults with physical disabilities: a randomized controlled trial. American Journal of Physical Medicine & Rehabilitation, 92(12), 1084-1094.

22. Cox, A., Breau, L., Connor, L., McNeely, P. D., Anderson, P. A., & MacLellan, D. L. (2011). Transition of care to an adult Spina Bifida clinic: Patient perspectives and medical outcomes. Journal of Urology, 186(4), 1590-1594.

23. Bellin, M. H., Zabel, T. A., Dicianno, B. E., Levey, E., Garver, K., Linroth, R., & Braun, P. (2010). Correlates of depressive and anxiety symptoms in young adults with Spina Bifida. Journal of Pediatric Psychology, 35(7), 778-789.

24. Bellin, M. H., Dosa, N., Zabel, T. A., Aparicio, E., Dicianno, B. E., & Osteen, P. (2013). Self-management, satisfaction with family functioning, and the course of psychological symptoms in emerging adults with Spina Bifida. Journal of Pediatric Psychology, 38, 50-62.

25. Murray, C., Lennon, J. Devine, K., Holmbeck, G. N., Klages, K., & Potthoff, L. (2014). The influence of social adjustment on normative and risky health behaviors in emerging adults with Spina Bifida. Health Psychology, 33, 1153-1163.

26. Bowman, R. M., McLone, D. G., Grant, J. A., Tomita, T., & Ito, J. A. (2001). Spina bifida outcome: a 25-year prospective. Pediatric Neurosurgery, 34(3), 114-120.

27. Cope, H., McMahaon, K., Heise, E., Eubanks, S., Garrett, M., Gregory, S., & Ashley-Koch, A. (2013). Outcome and life satisfaction of adults with myelomeingocele. Disability and Health Journal, 6(3), 236-243.

28. Boudos, R. M., & Mukherjee, S. (2008). Barriers to community participation: Teens and young adults with Spina Bifida. Journal of Pediatric Rehabilitation Medicine, 1(4), 303-310.

29. Bowman, R. M., McLone, D. G., Grant, J. A., Tomita, T., & Ito, J. A. (2001). Spina bifida outcome: a 25-year prospective. Pediatric Neurosurgery, 34(3), 114-120.

30. Oakeshott, P., Hunt, G. M., Poulton, A., & Reid, F. (2010). Expectation of life and unexpected death in open Spina Bifida: a 40-year complete, non-selective, longitudinal cohort study. Developmental Medicine and Child Neurology, 52(8), 749-753.

31. Zukerman, J. M., Devine, K. A., & Holmbeck, G. N. (2011). Adolescent predictors of emerging adult milestones in youth with Spina Bifida. Journal of Pediatric Psychology, 36, 265-276.

32. Mahmood, D., Dicianno, B. and Bellin, M. (2011), Self‐management, preventable conditions and assessment of care among young adults with myelomeningocele. Child: Care, Health and Development, 37: 861-865. doi:10.1111/j.1365-2214.2011.01299.

33. Tornbron M, Jonnsun U, Sunnerhagen KS. Work participation among middle-aged persons with cerebral palsy and spina bifida – a longitudinal study. Disabil Health J, 2014 Apr;7(2):251-5. doi: 10.1016/j.dhjo.2013.06.005.

34. Wiener JS, Suson KD, Castillo J, Routh JC, Tanaka ST, Liu T, Ward EA, Thibadeau JK, Joseph DB; National Spina Bifida Patient Registry. Bladder Management and Continence Outcomes in Adults with Spina Bifida: Results from the National Spina Bifida Patient Registry, 2009 to 2015.J Urol. 2018 Jul;200(1):187-194. doi: 10.1016/j.juro.2018.02.3101. Epub 2018 Mar 26.

35. Wiener JS, Suson KD, Castillo J, Routh JC, Tanaka S, Liu T, Ward E, Thibadeau J, Joseph D, National Spina Bifida Patient Registry. Bowel management and continence in adults with spina bifida: Results from the National Spina Bifida Patient Registry 2009-15.J Pediatr Rehabil Med. 2017 Dec 11;10(3-4):335-343. doi: 10.3233/PRM-170466.

36. Devine, K. A., Holmbeck, G. N., Gayes, L., & Purnell, J. (2012). Friendships of children and adolescents with Spina Bifida: Social adjustment, social performance, and social skills. Journal of Pediatric Psychology, 37, 220-231.

37. Barf, H. A., Post, M. W., Verhoef, M., Jennekens-Schinkel, A., Gooskens, R. H., & Prevo, A. J. (2009). Restrictions in social participation of young adults with Spina Bifida. Disability and Rehabilitation, 31(11), 921-927.

38. Buffart, L. M., van der Ploeg, H. P., Bauman, A. E., van Asbeck, F. W., Stam, H. J., Roebroeck, M. E., & van den Berg-Emons, R. J. (2008). Sports participation in adolescents and young adults with myelomeningocele and its role in total physical activity behavior and fitness. Journal of Rehabilitation Medicine, 40, 702-708. Oliveira, A., Jacome, C., & Marques, A., (2014). Physical fitness and exercise training on individuals with Spina Bifida: a systematic review. Research in Developmental Disabilities, 35(5), 1119-1136.

39. American Academy of Pediatrics, Council on Communications and Media. Media use in school-aged children and adolescents. Pediatrics. 2016;138(5):e20162592

40. Greenley, R., Coakley, R. M., Holmbeck, G. N., Jandasek, B. J., & Wills, K. (2006). Condition-related knowledge among children with Spina Bifida: Longitudinal changes and predictors. Journal of Pediatric Psychology, 31, 828-839.

41. Dicianno, B. E., Kurowski, B. G., Yang, J. M., Chancellor, M. B., Beijani, G. K., Fairman, A. D., … Sotirake, J. (2008). Rehabilitation and medical management of the adult with Spina Bifida. American Journal of Physical Medicine & Rehabilitation, 87(12), 1027-1050.