Table 2.

Self-management guidelines

Age group	Guidelines		Evidence
0–11 months	1.	Provide instruction and support to families regarding knowledge and skills needed to manage their child’s spina bifida and related issues.	Clinical consensus
	2.	Provide orientation to families that include the expectation for eventual self-management and independence according to the individual’s age and the status of their spina bifida.	Prenatal Counseling Guidelines [57]
	3.	Encourage families to expect participation in activities of daily life including tasks such as picking up toys, cleaning up, and imitative housework.	Clinical consensus Family Functioning Guidelines [58]
	4.	Evaluate and support family function.	Clinical consensus Appendix: EarlyIntervention Services, Individual-ized Educational Plans [IEP] and504 Plans [59] Clinical consensus
	5.	Identify and make referrals to early intervention programs.	Clinical consensus Appendix: Early Intervention Services, Individualized Educational Plans [IEP] and 504 Plans [59]
1–2 yrs11 months	1.	Provide instruction and support to families regarding knowledge and skills needed to manage their child’s spina bifida and related issues.	Clinical consensus
	2.	Provide anticipatory guidance regarding developmental needs of children (such as exploration of environment, routines, and age-appropriate choices).	Clinical consensus
	3.	Teach families to offer daily age-appropriate choices such as choosing between two articles of clothing, two cereals for breakfast, or two books to read.	Clinical consensus
	4.	Encourage families to expect participation in daily life activities, including tasks such as picking up toys, cleaning up, and imitating housework.	Clinical consensus
	5.	Identify and make referrals to early education programs.	Clinical consensus Appendix: Early Intervention Services, Individualized Educational Plans (IEP) and 504 Plans [59]
3–5 years11 months	1.	Provide instruction and support to families regarding knowledge, skills, and behaviors needed to manage their child’s spina bifida and related issues.	Clinical consensus
	2.	Discuss the need to expand the range of daily life activities and chores, as well as strategies to accommodate the child’s learning style and/or mobility.	Evidence [60, 61]
	3.	Provide anticipatory guidance so that autonomy skills are maximized when positive behaviors are reinforced, and clear and consistent consequences for inappropriate behavior are used.	Clinical consensus Mental Health Guidelines [62], Neuropsychology Guidelines [63]
	4.	Refer to community resources such as early education programs that promote autonomy, self-efficacy, and other foundational independence skills.	Clinical consensus Appendix: Early Intervention Services, Individualized Educational Plans (IEP) and 504 Plans [59]
6–12 years11 months	1.	Provide instruction and support to children and families regarding the knowledge and skills needed to manage spina bifida and related independence issues. Teach the child basic self-management skills, including skills to prevent secondary conditions (clean intermittent catheterization, skin care, equipment care, bowel and bladder care, wheelchair maintenance, and propulsion) based on individual abilities. Focus on self-efficacy. Children with spina bifida may develop foundational skills and self-management behaviors at a slightly later age (2–5 year delay) and may need more deliberate practice. However, most self-management behaviors are achievable by adults with spina bifida.	Evidence [1, 16, 17, 18, 23, 64, 65] Neuropsychology Guidelines [63]
	2.	Assist families in learning how to incrementally involve the child in organizing schoolwork and self-management activities. Specifically, encourage transition to having the child complete these activities initially with parental oversight and eventually independently.	Evidence [12, 17, 18, 38]
	3.	Discuss the need to expand the range of daily life activities and chores as well as strategies to accommodate the child’s learning style and/or mobility.	Evidence [60, 61]