Physician

The Life Course Model provides physicians with assessment tools that may help determine if patients are meeting age-appropriate developmental milestones in various areas. The model also provides many innovative, low-cost strategies not only in the treatment of many medical conditions common in spina bifida, but also for creative ways to educate patients and caregivers and to enhance compliance with self-care regimens. The model can be useful not only for the physician in the community who may lack the resources of large, multidisciplinary settings but also for the physician who is well versed in the care of those with spina bifida.

Many of the common diagnoses resulting in hospitalization and death in individuals with spina bifida are potentially preventable conditions. Using the Life Course Model at each visit may help a physician to identify specific target areas where preventative care can be improved and to assess whether interventions provided at the last visit have made an objective or measurable difference. Physicians can also use the model during transitional visits, in which a young person is transitioning from a pediatric clinic either to an adult clinic or into the adult health care arena, because the model provides information on many of the medical and personal issues faced by a young person with spina bifida.

While there are many types of physicians who treat individuals with spina bifida, including those in primary care, pediatrics, and medical specialties, the care of the individual with spina bifida often requires teamwork among many providers. The Life Course Model can be used not only to foster collaborations between physicians and other clinicians such as therapists, neuropsychologists, nurses, or rehabilitation counselors, it can also prompt physicians as to when to consult a physician colleague. The ultimate goal of the model is to restore and preserve health and independent functioning using a team-based approach.

Breaches in skin integrity are one of the most important medical problems that can cause significant morbidity and mortality. The Life Course Model provides physicians with tips on treating and preventing wounds, and education materials for patients and families on skin care. Tools are provided that may help the physician address some of the many causes of skin breakdown including nutritional status, pressure, shear, and moisture. Prompts are provided to remind physicians to evaluate for sensory deficits and how they may pose a threat to skin health.

Successful management of other issues such as neurogenic bowel and bladder also requires that the patient and caregivers work as a team with physicians. Besides medical or surgical interventions to manage incontinence and constipation, the physician plays a key role as an educator. The Life Course Model provides tools that may help the patient understand the importance of a bowel or bladder program, and gives tips on strategies for improving compliance and promoting continence.

Secondary musculoskeletal and neurologic disorders can have a significant impact on mobility. Some specialists such as physiatrists, neurosurgeons, developmental pediatricians, or orthopedists may routinely assess functional mobility and its relationship to developmental milestones at each visit. The Life Course Model, however, can guide other physicians in determining whether patients are meeting milestones, and provide suggestions on when referrals to other physician specialists or therapists are necessary, or when an assessment by a team of clinicians experienced in the prescription of orthoses or assistive technology is needed.

The Life Course Model also provides physicians with tools to promote health and wellness and to treat or prevent obesity, which has become a significant health concern. Because not all individuals have access to nutritional support services, the physician may be one of the few sources of required information on diet and adaptive exercise. The model provides fun and creative suggestions for home exercise plans, dieting, and sports participation while taking into account such barriers as cost, transportation, motivation, or physical inaccessibility that many individuals face.

Physicians can also be a source of information for educational goals and gainful employment. The model provides physicians with information on when and how to make a referral for Vocational Rehabilitation, career counseling, or job shadowing services. Referrals to Vocational Rehabilitation programs may be necessary to secure funding for assistive technologies such as computer access devices, mobility equipment like wheelchairs, or adaptive driving evaluations and vehicle modifications. When educational or employment barriers are identified with help from the Life Course Model, the physician can offer guidance on which reasonable accommodations may be required. Of course, because a major barrier for education and employment is incontinence, managing the bowel and bladder can make a significant impact on outcomes in these areas. Physicians can also act as sounding boards for parents to develop realistic and medically appropriate goals for children and their teachers. This process may involve providing referrals to physical or occupational therapy or speech language pathology, Early Intervention (EI) services, or advocacy organizations including the Spina Bifida Association and its local chapters. The model provides suggestions for when this may be appropriate.

Given the high rate of acceptance of technology in this population, physicians may also want to consider taking advantage of alternative technologies that may be available such as web-based or telerehabilitation systems. The model encourages the use of technology as a way to communicate and establish relationships with patients and other providers.

The physician can be involved in helping individuals with spina bifida and their families develop personal and social relationships in a healthy and age-appropriate way. The physician’s role may involve identifying stressful issues within the family and support system, diagnosing anxiety or depression, screening for social skills at specific ages, and making referrals to teen clinics. Rarely do individuals with spina bifida obtain sexual education from physicians. Most young adults desire more information on both fertility and sexuality. The Life Course Model provides physicians with ways to assess and discuss sexuality and fertility for individuals of all ages.

Physicians wear the hats of educators and clinicians, but their roles as researchers also cannot be understated. Although much is known about the medical and rehabilitation management of spina bifida, guidelines for evidence-based practice in many areas are still lacking, particularly in young adults. The Life Course Model can guide the academician in identifying those areas where research could advance the field substantially.

Nurse

Often in an advanced practice nursing role, the nurse has long been identified as instrumental for the patient and family in the transition process. The coordinator’s role is multifaceted and the following roles may be needed: (1) expert nurse and coordinator of multidiscipline management, (2) patient and family advocate, (3) resource consultant, and (4) researcher. As the role of the spina bifida coordinator may vary in different multidisciplinary teams depending on educational background, job description, additional work responsibilities, team members, and size of clinic, the components of the nurse coordinator’s clinical role in working with individuals with spina bifida and their families are now described.

The expert nurse and coordinator often works closely with the medical director of the spina bifida multidisciplinary team in managing the care of the patients during and between team visits. Using the nursing process of assessment, planning, implementing, and evaluating, a plan of care is established with specialized medical professionals and allied health professionals at each visit. Recommendations made during a visit must be summarized and an ongoing plan of care established. This plan of care is vital to growth and development as the individual with spina bifida transitions from childhood to adulthood, expanding to his or her full potential. Between follow-up visits the plan of care may require diagnostic tests, referrals to physician specialists or therapists, follow-ups with primary care, or consults with a dietician, neuropsychologist, or social worker. The nurse coordinator is many times the professional responsible for consolidating a written or verbal report from all multidiscipline specialties evaluating the individual with spina bifida in a clinical setting, making sure the individual and family has a copy of the recommendations, and discussing and clarifying direction for the individual with spina bifida and their family between visits. The nurse coordinator works as a liaison to link the various personnel involved in the care plan and those in community outreach to assist the individual and family in obtaining the care recommended by the multidisciplinary team. The nurse coordinator assists with communication to the various care providers, providing clarification, modification, and feedback among professionals.

The expert nurse and coordinator also acts as a first-line professional in triage when an individual with spina bifida or caregiver calls with a concern or problem between clinic visits. The nurse, as a clinician with expertise and knowledge about spina bifida, may be able to resolve many triage concerns. Unexpected crises and unplanned events can easily result in delays and regression in meeting transitional goals. The nurse coordinator, as a clinician, provides prompt follow-up and response from the spina bifida multidisciplinary team and assists in redirecting the individual and family with spina bifida back to the transitional goals established, or initiates modification of those goals if needed. The Life Course Model can be valuable in allowing the nurse coordinator to follow and assess a patient’s developmental milestones, and allowing intervention by rapidly triaging problems and activating needed interventions and consultations. The nurse coordinator and other team members can use the Life Course Model to ensure all team members are working toward the patient’s and caregivers’ necessary and agreed-upon goals.

People with spina bifida and their caregivers may lack information about self-advocacy. The expert nurse and coordinator, acting as an advocate, can provide this education. For example, parents often need to learn to work with their child’s school to ensure access to all services that are deemed necessary for the child to thrive and succeed in school. This collaboration may include learning needs of the child, finding a private place for the child to catheterize, or finding access to adaptive playground equipment or an elevator for a child who uses a wheelchair. The nurse provides leadership and support in this process. The nurse often takes the lead in teaching individuals and families that cognitive impairments and learning disabilities can interfere with the development and accomplishment of personal care skills and functional independence. The Life Course Model provides not only the nurse coordinator but also the patient and families with valuable tools and suggestions for advocacy and understanding patients’ rights.

Nurses act as resource consultants because they are on the front line of care in the lives of individuals with spina bifida and their families. Nurses keep a current knowledge of resources that are available for individuals with spina bifida. Informational Web resources such as the Spina Bifida Association of America (SBAA), or state, regional, and community resources are identified and offered to families on a wide variety of topics. If information is not known, the nurse is often able to investigate and find resources. Coordinating follow-up care involves making parents aware of resources and support networks for families on the local, regional, and national level. The Life Course Model provides the nurse with an extensive list of ideas and resources.

Nurses are also scientists and play the role of researchers. Because nurses are intimately involved in the lives of their patients and families, they are well suited to identifying areas of necessary research, promoting academic work that is clinically relevant, and translating research findings into evidence-based practice. The Life Course Model can serve as a research tool to allow clinician-researchers to identify key research priorities.

Nurse

Often in an advanced practice nursing role, the nurse has long been identified as instrumental for the patient and family in the transition process. The coordinator’s role is multifaceted and the following roles may be needed: (1) expert nurse and coordinator of multidiscipline management, (2) patient and family advocate, (3) resource consultant, and (4) researcher. As the role of the spina bifida coordinator may vary in different multidisciplinary teams depending on educational background, job description, additional work responsibilities, team members, and size of clinic, the components of the nurse coordinator’s clinical role in working with individuals with spina bifida and their families are now described.

The expert nurse and coordinator often works closely with the medical director of the spina bifida multidisciplinary team in managing the care of the patients during and between team visits. Using the nursing process of assessment, planning, implementing, and evaluating, a plan of care is established with specialized medical professionals and allied health professionals at each visit. Recommendations made during a visit must be summarized and an ongoing plan of care established. This plan of care is vital to growth and development as the individual with spina bifida transitions from childhood to adulthood, expanding to his or her full potential. Between follow-up visits the plan of care may require diagnostic tests, referrals to physician specialists or therapists, follow-ups with primary care, or consults with a dietician, neuropsychologist, or social worker. The nurse coordinator is many times the professional responsible for consolidating a written or verbal report from all multidiscipline specialties evaluating the individual with spina bifida in a clinical setting, making sure the individual and family has a copy of the recommendations, and discussing and clarifying direction for the individual with spina bifida and their family between visits. The nurse coordinator works as a liaison to link the various personnel involved in the care plan and those in community outreach to assist the individual and family in obtaining the care recommended by the multidisciplinary team. The nurse coordinator assists with communication to the various care providers, providing clarification, modification, and feedback among professionals.

The expert nurse and coordinator also acts as a first-line professional in triage when an individual with spina bifida or caregiver calls with a concern or problem between clinic visits. The nurse, as a clinician with expertise and knowledge about spina bifida, may be able to resolve many triage concerns. Unexpected crises and unplanned events can easily result in delays and regression in meeting transitional goals. The nurse coordinator, as a clinician, provides prompt follow-up and response from the spina bifida multidisciplinary team and assists in redirecting the individual and family with spina bifida back to the transitional goals established, or initiates modification of those goals if needed. The Life Course Model can be valuable in allowing the nurse coordinator to follow and assess a patient’s developmental milestones, and allowing intervention by rapidly triaging problems and activating needed interventions and consultations. The nurse coordinator and other team members can use the Life Course Model to ensure all team members are working toward the patient’s and caregivers’ necessary and agreed-upon goals.

People with spina bifida and their caregivers may lack information about self-advocacy. The expert nurse and coordinator, acting as an advocate, can provide this education. For example, parents often need to learn to work with their child’s school to ensure access to all services that are deemed necessary for the child to thrive and succeed in school. This collaboration may include learning needs of the child, finding a private place for the child to catheterize, or finding access to adaptive playground equipment or an elevator for a child who uses a wheelchair. The nurse provides leadership and support in this process. The nurse often takes the lead in teaching individuals and families that cognitive impairments and learning disabilities can interfere with the development and accomplishment of personal care skills and functional independence. The Life Course Model provides not only the nurse coordinator but also the patient and families with valuable tools and suggestions for advocacy and understanding patients’ rights.

Nurses act as resource consultants because they are on the front line of care in the lives of individuals with spina bifida and their families. Nurses keep a current knowledge of resources that are available for individuals with spina bifida. Informational Web resources such as the Spina Bifida Association of America (SBAA), or state, regional, and community resources are identified and offered to families on a wide variety of topics. If information is not known, the nurse is often able to investigate and find resources. Coordinating follow-up care involves making parents aware of resources and support networks for families on the local, regional, and national level. The Life Course Model provides the nurse with an extensive list of ideas and resources.

Nurses are also scientists and play the role of researchers. Because nurses are intimately involved in the lives of their patients and families, they are well suited to identifying areas of necessary research, promoting academic work that is clinically relevant, and translating research findings into evidence-based practice. The Life Course Model can serve as a research tool to allow clinician-researchers to identify key research priorities.