Work Group Members: Lynne Romeiser Logan, PT, PhD (Co-Chair); Kathleen Sawin, PhD, CPNP-PC, FAAN (Co-chair); Melissa Bellin, PhD, MSW; Timothy Brei, MD; Jason Woodward, MD, MS
Self-management and independence are closely related constructs and are presented together. Self-management for youth and emerging adults with Spina Bifida is an active daily and flexible process in which youth and their parents share responsibility and decision-making for managing their condition, health, and well-being through a wide range of knowledge, attitudes, activities, and skills. The goal of this increasing responsibility is to develop the self-management behaviors needed to achieve independence and transition to adulthood and independent living.1-2 Self-management for all is the interaction of health behaviors and related processes that patients and families engage in to care for a chronic condition.3
Child autonomy provides a critical foundation for developing self-management and independence. For all children, autonomy begins early and is fostered by opportunities to make choices and to develop a sense of mastery. Most children with Spina Bifida achieve basic self-management and independence behaviors (e.g., dressing appropriately, planning activities with peers, or cooking pre-planned meals), yet often lag 2-5 years behind their typically-developing peers in these behaviors.4 This gap may be due to the child’s difficulties performing common everyday motor and processing activities in efficient and independent ways.5 Adaptation of performance and initiation of new steps may be especially challenging.5
Social skills in children are also important building blocks for independence. Many children with Spina Bifida need assistance with building adaptive social behaviors in peer interactions, specifically basic social skills such as reading social cues, clarity of thought and collaboration.6 Monitoring self-management learning is needed for all with cognitive functioning challenges, especially those with executive functioning, inattention and working memory issues.6-10 Educational programs in the home, school and broader community that offer opportunities to practice new behaviors are critical.
Youth do not enter adolescence with comprehensive knowledge of self-management (i.e. watching for signs of skin breakdown, bowel problems, shunt failure, and urinary tract infections), yet most develop this knowledge before age eighteen.1 4,11 Advanced self-management behaviors achieved by peers but not by individuals with Spina Bifida by age 18 are broad in scope and include doing their own laundry, cooking independently, managing their bank account without assistance, managing their allowance, and making their own appointments.4 It is not clear if these delays in skill development are developmentally appropriate for youths with Spina Bifida or due to a lack of expectations and support in the home, school, health system, or broader community. However, healthy family functioning was consistently related to better self-management outcomes across all developmental stages.9,11 Since there is evidence that responsibility in the home (e.g., chores and general decision-making) promotes self-management skill-building, individuals and families should be encouraged to expand their range of everyday living skills and responsibilities.4–5,11-14
Potential self-management skill-building challenges identified from longitudinal research include older school-age children with Spina Bifida perceiving themselves as being more independent relative to parent assessment.15 Health care providers expect school-age and older children to perform self-management behaviors related to bladder programs, bowel programs, skin
checks, and prevention of other secondary conditions.16 Yet, older children have reported that self- catheterization and bowel programs were a challenge, which often needed parent involvement1. In addition, both the family and child have had difficulty carrying out diet recommendations, bowel programs, and skin care.17 Thus, tailored interventions are needed to support growth in these areas.17
Children with Spina Bifida transitioning to adulthood are generally poorly prepared to self-manage their condition or live independently and enter young adulthood with preventable secondary conditions.18 Unhealthy behaviors continue into adulthood.19 Skin breakdown, along with fewer self-management behaviors, predicted hospitalization in this population.13,20 However, there is also evidence that improved self-management in young adults impacts health outcomes.
Adults were often without access to a usual source of health care or had gone without care due to barriers.21 Most adults over 18 years of age have not achieved optimal independence milestones in education, employment, and independent living.22-23 However, they were reported to have higher independence than those with other severe conditions.24
Self-management interventions for youth with Spina Bifida and other Chronic Health Conditions (CHC) generally show at least one significant improvement, although a short workshop-based intervention for older children with Spina Bifida yielded no significant differences in groups.25-26 Family-oriented self-management interventions may be most effective in younger adolescents.27 Camp-based psychosocial interventions promoting skills-development in goal-setting and problem-solving have shown promise in developmentally-diverse samples of children and adults with Spina Bifida.28-29 Other interventions using a problem-solving model combining education and home/community practice similarly improved child self-management skills and decreased parent burden. In addition, there is evidence that improved self-management in adults impacts health outcomes.30 Rehabilitation interventions in young and middle-aged adults have improved all aspects of self-management and independence, with moderate- to large-effect sizes including self-efficacy, management of bowel and bladder incontinence, cognitive function, and psychosocial symptoms.13,31 Although tested mostly in adults, technology-based interventions hold promise for expanding self-management behaviors in youth as well.13-14,32-36
Clinicians should consider using one of the valid and reliable generic or Spina Bifida-specific measures of self-management and independence.8,37-39 (Appendix A). Clinical assessment of the level of self-management and independence in those with Spina Bifida should specifically-distinguish between the skills and behaviors the individual knows how to do and the behaviors they actually execute independently.40 The evidence supports the need to have a structured, planned, and incremental approach to building self-management and independence skills beginning in early childhood, conveying expectations for developmentally-appropriate household responsibilities and increasingly involving the child in their care. Plans that accommodate cognitive learning styles or executive functioning status and purposefully, incrementally increase skills with multiple opportunities to practice new behaviors are central to achieve successful self-management and independence.
- Perform effective self-management behaviors at the highest level of their abilities.
- Achieve optimal independent living and employment, as well as maximal participation in society.
- Young children develop autonomy, responsibility, and other foundational skills for self-management and independent living.
- Interventions that address the foundational skills necessary for complex self-management and independence behaviors are introduced throughout the lifespan, as appropriate.
- Target foundational skills should include executive functioning skills, self-efficacy, self-regulation, and engaging in social activities.
- Self-management and independence goals are evaluated yearly with the family, child, adolescent, and adult.
- Adults with Spina Bifida over 18 who have a guardian responsible for their health care should perform self-management behaviors in the areas of medication management, prevention of complications, implementation of bladder and bowel programs, skin surveillance, and be able to communicate their findings to their guardian and/or health care providers at their highest level of ability.
- Adults with Spina Bifida over 18 who do not need a guardian are fully responsible to self-manage their condition and independence (e.g., making appointments, ordering medications, arranging for transportation, conducting basic living skills like cooking and doing the laundry, managing money, managing insurance, and communicating with their health care provider).
- Individuals with Spina Bifida interact effectively with family, health care providers, and others in the external environment in an independent manner.
- What approaches optimize individual and family self-management and eventual independence?
- Provide instruction and support to families regarding knowledge and skills needed to manage their child’s Spina Bifida and related issues. (Clinical Consensus)
- 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)
- Encourage families to expect participation in activities of daily life including tasks such as picking up toys, cleaning up, and imitative housework. (Clinical Consensus)
- Evaluate and support family function. (Family Functioning Guidelines)
- Identify and makes referrals to early intervention programs. (Clinical Consensus)
1-2 years 11 months
- What are the approaches that optimize individual and family self-management and eventual independence?
- Provide instruction and support to families regarding knowledge and skills needed to manage their child’s Spina Bifida and related issues. (Clinical Consensus)
- Provide anticipatory guidance regarding developmental needs of children (such as exploration of environment, routines, and age-appropriate choices). (Clinical Consensus)
- Teach families to offer daily age-appropriate choices such as choosing between two articles of clothes, two cereals for breakfast, and two books to read. (Clinical Consensus)
- Encourage families to expect participation in daily life activities, including tasks such as picking up toys, cleaning up, and imitating housework. (Clinical Consensus)
- Identify and make referrals to early education programs. (Clinical Consensus)
3-5 years 11 months
- What approaches optimize independence and individual and family self-management in children with Spina Bifida?
- Provide instruction and support to families regarding knowledge, skills, and behaviors needed to manage their child’s Spina Bifida and related issues. (Clinical Consensus)
- 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.41,42
- Provide anticipatory guidance 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, Neuropsychology Guidelines)
- Refer to community resources such as early education programs that promote autonomy, self-efficacy, and other foundational independence skills. (Clinical Consensus)
6-12 years 11 months
- What skills, abilities, and self-management behaviors should be targeted during age 6-12 years?
- What are the most effective approaches to teach these skills and behaviors to children with Spina Bifida and their families?
- Does specific skill training improve self-management behaviors (e.g., taking medication) and other independence behaviors?
- What are optimal age expectations for specific self-management skills and behaviors (e.g. ability to self-catheterize; conduct skin checks; ability to describe their medication, its uses and side effects, and to take it on schedule; and describe their condition to a new professional) in children with Spina Bifida?
- What instruments are available to measure self-management skills, abilities, and behaviors in children?
- 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, wheel chair maintenance and propulsion) based on individual abilities. Focus on self-efficacy.43 Children with Spina Bifida may develop foundational skills and self-management behaviors at a slightly later age (two- to five-year delay) and may need more deliberate practice. However, most self-management behaviors are achievable by adults with Spina Bifida.4-5,12,17,43,45-46 (Neuropsychology Guidelines)
- Assist families in learning how to incrementally involve the child in organizing school work and self-management activities and how to begin to transition from parents doing to child doing with parental oversight to eventually child doing without parent oversight.5,7,12,44
- 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.4,7-8,11-12,14
- Serve as a resource to school systems regarding transportation, learning skills, health issues, and development of self-management skills. (Clinical Consensus)
- Emphasize positive attitudes, self-esteem, assertiveness, sell-efficacy and self-empowerment. (Clinical Consensus)
- Assess peer relationships and encourage peer social involvement.1,6 (Mental Health Guidelines, Neuropsychology Guidelines)
- Assess for potential patient, family, or environmental barriers to developing autonomy and independence, including family stress and conflict, and address in action plan.15,47 (Family Functioning Guidelines)
- Assess bladder and bowel management programs for eventual independent self-management (Bowel Function and Care Guidelines, Urology Guidelines).
- Consider using an age-and condition-appropriate assessment instrument (Appendix A) especially if the child has executive-functioning impairments.4,7-9,41-42
- Discuss with parents the need to help their child develop basic money management skills.4 If the child has an Individualized Educational Plan (IEP), encourage parents and the school to include money management skills in the child’s IEP. (Clinical Consensus)
- Encourage families to facilitate their child’s language performance by creating intellectually- and culturally-enhancing activities in the child’s typical environment.48
- Set beginning expectations for independent living. (Clinical Consensus)
- Encourage use of technology to enhance self-management. (Clinical Consensus)
13-17 years 11 months
- What approaches optimize individual and family self-management?
- What skills, abilities and self-management behaviors should be targeted at age 13-17 years?
- What are the most effective approaches to teaching these skills and behaviors to children age 13-17 years with Spina Bifida and their families?
- Does specific skill training improve self-management behaviors (e.g., taking medication) and other independence behaviors?
- What are optimal age expectations for specific self-management skills and behaviors (e.g. ability to self-catheterize; conduct skin checks; ability to describe their medication, its uses and side effects, take it on schedule, and describe their condition to a new professional) in children with Spina Bifida?
- What instruments are available to measure self-management skills, abilities, and behaviors?
- Evaluate self-management in appropriate areas (e.g. managing medications, prevention of complications, skin care, equipment care, bowel and bladder care, and making health care appointments). Assess self-efficacy43 for these activities, considering that the child’s ability to assume responsibility for health care encounters and other self-management of Spina Bifida is sequential. Full responsibly for self-management is critical for successful transition.4-5,12-13,17,45-46
- Assist families in knowing how to incrementally involve the child in organizing self-management activities and how to transition from parents doing to child doing with parental oversight to eventually child doing without parent oversight.5,7,12,44
- Initiate a discussion and develop action plans to address deficits in self-management and independence skills, abilities, and behaviors, as needed.
- Use a valid and reliable instrument to assess self-management skills, abilities, and performance of self-management and independence behaviors.8,41,49–50
- Encourage increasing responsibility for behaviors such as management of medication, bowel and bladder programs, and skin-monitoring.15,17 (Integument (Skin) Guidelines, Bowel Function and Care Guidelines, Urology Guidelines)
- Support development of skills necessary for self-management (e.g., decision-making, goal-setting, self-regulation, and communication).3,11
- Evaluate and monitor cognitive functions as they underpin decision-making, goal-setting, self-regulation, self-management, socialization, and transition issues.7–10 (Neuropsychology Guidelines)
- Assess the child’s ability to use transportation. Encourage their enrollment in driver’s education (adaptive, if needed) if the teen possesses the necessary cognitive and motor abilities. If driving is not realistic, teach (or encourage the family to teach) them how to use public transportation, van services for individuals with disabilities, or other transportation options.51 (clinical consensus)
- Expand self-management interventions to encompass everyday living activities such as laundry, meal preparation, money management, managing finances, and making health care appointments.4,11,22,39,52
- Encourage the family to expand the range of responsibilities for daily life activities, chores, and jobs.11
- Evaluate the potential to eventually live independently (for those later in this age range) and connect them with housing resources (e.g. Centers for Independent Living). (Clinical Consensus)
4. Encourage participation in IEP/504 planning that addresses self-management and transition skills. For those with an IEP, transition planning must be initiated by age 14. (Transition Guidelines)
5. Support family functioning strengths related to self-managment (navigating family stress, conflict, satisfaction, and family resources). 47, 49 (Family Functioning Guidelienes)
6. Involve the local Department of Vocational Rehabilitation and include vocational counseling in transition team planning. (Clinical Consensus) .
7. When it is developmentally appropriate, include time alone with the child to discuss self-management and independence topics as part of the visit. (Clinical Consensus)
8.Discuss sexuality, contraception (including latex allergy precautions), marriage, childbearing issues, genetic counseling, and folic acid supplementation. (Sexual Health and Education Guidelines, Men’s Health Guidelines, Women’s Health Guidelines, Latex Guidelines)
9. Assess individual and system barriers to self-management and transition from pediatric to adult health care (e.g., responsibility for health management, advocacy, assertiveness, and insufficient adult services).21,52
10. Encourage the use of technology to enhance self-management.13,32-33,36,53
11. Share expectations and resources for future independent living, transition to college or employment.18,44
12. Provide consultation to adult providers with limited skill in providing care to those with congenital condition such as Spina Bifida.52 (Transition Guidelines)
- What approaches optimize individual and family self-management?
- What self-management skills, abilities, and behaviors lead to self-management and independent living in adults?
- Does specific self-management skill training improve independence with self-management behaviors (e.g., taking medication and monitoring skin status)?
- Is performing more self-management behaviors independently related to improved or positive health or functional outcomes (depression, quality of life, secondary conditions such as urinary tract infections, and pain)?
- What health care and community supports optimize self-management, independence, and health outcomes?
- Does increased independence with self-management increase community participation?
- How can comprehensive preparation for self-management and independence be integrated into primary or specialty health care settings?
- What instruments measure the individual’s performance of self-management and independence behaviors in adulthood?
- Evaluate full responsibility for implementing condition-specific self-management behaviors in appropriate areas, as needed (e.g. managing medications, preventing complications, monitoring skin care, maintaining equipment, bowel and bladder care, and ability to make health care appointments).4-5,12-13,17,41-42,45-46
- Reinforce the need for daily skin assessment, given the high incidence of skin breakdown on lower extremities (e.g. due to poor fitting leg braces) and risk for wound-related hospitalization.13,17,20 (Integument (Skin) Guidelines)
- Evaluate if the adult has expanded self-management to encompass everyday living activities such as laundry, meal preparation, managing finances, making health care appointment and ordering supplies.
- Initiate a discussion and develop an action plans to address deficits in self-management skills, abilities and behaviors, as needed. (Clinical Consensus)
- Use a valid and reliable instrument to assess self-management skills, abilities and performance of self-management or independence behaviors over time in adults.8,41,49-50
- Support development of knowledge and skills necessary for self-management (e.g., self-efficacy, decision-making, goal setting, self-regulation, and communication).11,43
- Evaluate and monitor cognitive functions, as they underpin decision-making and self-management.1,18,45 (Neuropsychology Guidelines)
- Assess the adult’s ability to use transportation; encourage enrollment in driver’s education (adaptive, if needed) if the adult possesses the necessary cognitive and motor abilities and has not done so already. If driving is not realistic, teach (or encourage the family to teach) the adult how to use transportation (e.g., public transportation, van services for individuals with disabilities, or other transportation options). (Clinical Consensus)
- Evaluate the young adult’s ability to live independently and connect with him or her with housing resources, such as Centers for Independent Living. (Clinical Consensus)
5. Encourage the use of technology in developing basic self-management skills. For instance, using email or a personal online health record, or patient portal to contact the clinic coordinator and physician with questions. Offer alternatives if this form of access is not available or appropriate.
6. Encourage the use of technology programs to enhance self-management outcomes (e.g. using mobile health (mHealth) or telehealth tools to monitor skin breakdown or report response to medication for UTI).13,32- 33,36,53
7. Expand the discussion of sexuality, contraception (including latex allergy precautions), marriage, childbearing issues, genetic counseling, and folic acid supplementation. (Sexual Health and Education Guidelines)
8. Expand the discussion on child rearing and parenting issues and resources as appropriate. (Clinical Consensus)
9. Discuss strategies for safe infant handling (e.g., holding an infant if you use a wheelchair or accessing a crib or car seat) with parents or expectant parents with mobility limitations. (Clinical Consensus)
10. Encourage involvement in empowerment activities and organizations (e.g., sports, mentoring, camps, and local, national and international Spina Bifida, and other disability organizations).28
11. Support family functioning strengths related to self-management including family satisfaction and family resources.47,49 (Family Functioning Guidelines)
12. Assess individual and system barriers to self-management (e.g., difficulties with self-advocacy, assertiveness, insufficient adult services).14-15,29,49
13. Refer to vocational rehabilitation, independent living centers, or other community agencies as appropriate. (Clinical Consensus)
14. Provide information about accessible housing, financing, and appropriate outside agencies. (Clinical Consensus)
15. Encourage planning and use of support services (e.g., in a college setting, services for students with disabilities) for self-management and independence in new environments. (Transition Guidelines)
16. Encourage the use of wellness programs.32
17. Evaluate and support patients as their parents and caregivers age and assist individuals with Spina Bifida plan for changes in self-management and independence when their parents and caregivers will not be available. (Clinical Consensus)
What are the foundational skills and abilities in young children that facilitate the development of self-management and independence behaviors in later childhood and adulthood?
What interventions optimize the development of these foundational skills and abilities early in childhood?
- What are the barriers and facilitators for people with Spina Bifida to developing autonomy, self-management, and independent living skills?
What interventions are effective in closing the gap between self-management behaviors in individuals with Spina Bifida and their typically-developing peers? What interventions need to be targeted to patients and their parents to facilitate parental roles in self-management transitioning to coach and consultant as the patient nears adulthood?
Do interventions to enhance self-management and independence need to be delivered outside of clinical care?
What structure(s) of clinical services are optimal for coordinated, comprehensive transition to adult care?
Does routine clinical assessment of self-management behaviors, along with the development of action plans, in cooperation with the adolescent and their family yield improved outcomes?
What successful strategies can health care workers use to facilitate behaviors that encourage independence in children and adults with Spina Bifida and their parents?
- What supports within the family and health care system lead to positive health and independence outcomes for children and adults with Spina Bifida?
- How do the needs related to self-management and independence of young, middle-aged, and older adults change as they age with Spina Bifida?
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