The Transition to Adult Health Care in Youth With Spina Bifida: Theory, Measurement, and Interventions.

PURPOSE: This article focuses on the transition to adult health care in youth with spina bifida (SB) from the perspective of theory, measurement, and interventions. METHODS: The purpose of this article is to discuss (a) a theory of linkages between the transfer of medical responsibility from parent to child and the transition from pediatric to adult health care, as mediated by transition readiness; (b) measurement issues in the study of self-management and the transition to adult health care; and (c) U.S.-based and international interventions focused on the transition to adult health care in young adults with SB. FINDINGS: Individuals with SB must adhere to a complex multicomponent treatment regimen while at the same time managing a unique array of cognitive and psychosocial challenges and comorbidities that hinder self-management, medical adherence, and the transition to adult health care. Moreover, such youth endure multiple transitions to adult health care (e.g., in the areas of urology, orthopedics, neurosurgery, and primary care) that may unfold across different time frames. Finally, three transition-related constructs need to be assessed, namely, transition readiness, transition completion, and transition success. CONCLUSIONS: SB provides an important exemplar that highlights the complexities of conducting research on the transition to adult health care in youth with chronic health conditions. Many transition trajectories are possible, depending on the functioning level of the child and a host of other factors. Also, no single transition pathway is optimal for all patients with SB. CLINICAL RELEVANCE: The success of the process by which a child with SB transitions from pediatric to adult health care can have life-sustaining implications for the patient.

Using a Decision Tree to Guide Bowel Management in Spina Bifida.

BACKGROUND: When born with spina bifida, there are numerous neurologic disorders that accompany this birth defect, including neurogenic bowel. Proactive, systematic, and rational approaches can lead to continence and a more functional lifestyle [1]. METHODS: Based on the evidence in the literature and expert experience, our approach to bowel management was developed as a step by step, individualized approach. This was converted to a decision tree for easy guidance of treatment decisions. The approach includes teaching patients and families normal bowel function, changes resulting from neurogenic bowel, common pitfalls in bowel management, and techniques that may improve outcomes. The decision tree, starting with dietary management, breaks into a two-fold attack, oral and rectal. Our data as part of the National Spina Bifida Patient Registry (NSBPR) database was compared to public data from the NSBPR. RESULTS: Preliminary data from the NSBPR in 2011 reported bowel continence in 42.1% (n = 898) compared to our clinical outcomes of 72.1% (n = 43). As the variable of bowel continence was further defined and more patients were enrolled, the clinic results were comparable to the national reports. CONCLUSION: Consistency among providers and caregivers is critical to evaluating the management of continence in spina bifida. While this protocol warrants further evaluation, it is offered as an evidence-based, step by step, approach to bowel management in spina bifida with good outcomes for patient management.

Parents' Needs Concerning Their Children with Spina Bifida in South Korea: A Mixed Method Study.

PURPOSE: This study aimed to determine the needs of children with spina bifida (SB) and their families from their parents' perspective in South Korea. DESIGN AND METHODS: This was a convergent mixed methods study design. From December 2016 to February 2017, parents of children with SB participated in a quantitative prospective observational study (N = 164), using the Family Needs Assessment Tool. Qualitative focus group interviews were conducted, according to three developmental stages (N = 15) in May 2017. Integrated analyses were conducted jointly by merging the quantitative and qualitative findings. RESULTS: Quantitative findings revealed very high parental needs in three assessment domains: information, healthcare service/program, and difficulties related to healthcare. Ten qualitative themes were identified in these 3 domains. Quantitative and qualitative methods enabled more extensive findings. Comparison and merging of the data resulted in six confirmed and four expanded findings. In particular, we identified the need for a child-focused self-management program, a bladder/bowel disability awareness program, welfare policies, and partnership with healthcare professionals as the expanded findings. CONCLUSION: This mixed method study provided empirical evidence to help better understand the complex needs of parents of children with SB. PRACTICE IMPLICATIONS: When developing and providing healthcare education and service to families of children with SB, especially, in countries where SB educational programs have not been established yet, it is important to develop them based on their own needs, which may vary based on the child's developmental stage and socio-cultural characteristics.

Factors Influencing the Use of Intermittent Bladder Catheterization by Individuals With Spina Bifida in Brazil and Germany.

PURPOSE: Intermittent catheterization (IC) often is essential for individuals with spina bifida/myelomeningocele (SBM) and neurogenic bladder. This study aimed to identify and analyze the factors that influence the use of IC. DESIGN AND METHODS: Descriptive study with convenience sampling. Data were collected using printed (Brazil) and online (Germany) questionnaires, and analyzed using multivariate logistical regression and analysis of variance. The study included 100 Brazilian and 100 German patients, aged 0-55 years, with SBM who utilized IC. FINDINGS: Intermittent catheterization was used by 188 of the 200 patients. Three variables were important for predicting who did or did not use IC: no discontinuation of IC, absence of technical difficulty, and daily frequency of IC. CONCLUSIONS AND CLINICAL RELEVANCE: Findings suggest that difficulties with IC use experienced by spina bifida patients and their family members that predicted full discontinuation tended to be personal variables, rather than demographic or medical characteristics.

From Feeling Broken to Looking Beyond Broken: Palestinian Mothers' Experiences of Having a Child With Spina Bifida.

Spina bifida (SB) is the second most common birth defect worldwide. Mothers of children with SB face extraordinary challenges due to the complicated conditions and disability of their children. Little is known about the impact of these challenges on the mothers' well-being, particularly in Middle Eastern culture, where chronic illness and disability are perceived as a stigma, and care of disabled children has traditionally been the responsibility of the mother. The aim of this study was to illuminate mothers' lived experience of having a child with SB in Palestine. Twenty Arab-Muslim mothers living in Palestine were purposefully recruited from several rehabilitation centers in Palestine and were interviewed in 2014. The transcribed interviews were analyzed according to phenomenological hermeneutics. The mothers' experiences were described in the main theme: From feeling broken to looking beyond broken. Four themes were interwoven: living with constant anxiety, living with uncertainty, living with a burden, and living with a difficult life situation. These findings highlight the burden and resilience of the Arab-Muslim Palestinian mothers while striving to maintain the well-being of the whole family as well as facilitating the child's welfare.

Patients With Spina Bifida and Their Caregivers' Feelings About Intermittent Bladder Catheterization in Brazil and Germany: A Correlational Study.

A major complication for individuals with spina bifida (SB) is managing their neurogenic bladder. For many, this process evokes negative feelings associated with guilt, dependence, and lack of self-worth. PURPOSE: The aim of the study was to compare feelings that hinder the performing of intermittent bladder catheterization reported by individuals with SB and their families in two countries of different sociocultural characteristics: Brazil and Germany. DESIGN AND METHODS: Quantitative and comparative study with convenience sampling. The sample comprised 200 SB patients and their caregivers, 100 from Brazil and 100 from Germany. FINDINGS: When asked about the existence of negative feelings or ideas that may hinder the performance of key person responsible for IC, 155 (77.5%) participants did not report such feelings. On the other hand, 45 (22.5%) reported emotional difficulties; among these participants, 31 (69%) were Brazilians and 14 (31%) were Germans. CONCLUSIONS AND CLINICAL RELEVANCE: Although emotional factors are important to the adjustment of using IC methods for bladder management, the majority of people with SB and their caregivers seem to report no major emotional difficulties with this process. Yet a considerable group of participants did report such emotional difficulties associated with fear and shame. Knowing more about the factors associated with such negative feelings can facilitate interactions, provide mutual aid, and assist with resolution of practical concerns related to intermittent bladder catheterization.

Reabilitação de crianças e adolescentes com mielomeningocele: relato de experiência de atuação da enfermagem / Rehabilitación de niños y adolescentes con mielomeningocele: relato de experiencia de la práctica de enfermería / Rehabilitation of children and adolescents with myelomeningocele: nursing practice report

RESUMO O artigo foi desenvolvido por enfermeiras com mais de cinco anos de atuação, em uma rede de hospitais de reabilitação no Brasil, referência em toda a América Latina. O objetivo do presente estudo é de relatar a atuação de enfermeiras na reabilitação de crianças e adolescentes com mielomeningocele. As autoras realizaram reuniões presenciais e por videoconferência, discussões e troca de experiências até o consenso e validação do conteúdo. O relato foi organizado e dividido em três tópicos: capacitação para as atividades de vida diária; capacitação para a reabilitação vesicointestinal; capacitação para as atividades de vida prática: autonomia e participação. As famílias de indivíduos com mielomeningocele enfrentam dificuldades relacionadas à condição crônica e à escassez de serviço estruturado e humanizado que garanta e capacite quanto ao cuidado domiciliar. O desafio é fornecer subsídios que orientem profissionais na manutenção do cuidado domiciliar, melhorando a comunicação e promovendo a capacitação dos familiares das crianças e adolescentes com mielomeningocele.

RESUMEN El artículo fue desarrollado por enfermeras con más de cinco años de experiencia, en una red de hospitales de rehabilitación en Brasil, una referencia en América Latina. El objetivo de este estudio es dar a conocer la actuación de enfermeras en la rehabilitación de niños y adolescentes con mielomeningocele. Las autoras llevaron a cabo reuniones en persona y por videoconferencias, debates e intercambio de experiencias hasta el consenso y la validación del contenido. El relato fue organizado y dividido en tres temas: capacitación para las actividades de la vida diaria; capacitación para la rehabilitación vesicointestinal; capacitación para las actividades de la vida cotidiana: autonomía y participación. Las familias de las personas con mielomeningocele enfrentan dificultades relacionadas con la condición crónica y la falta de servicio estructurado y humanizado que garantice y capacite en cuanto al cuidado en el hogar. El reto es proporcionar subsidios que guíen a los profesionales en el mantenimiento de la atención domiciliaria, mejorando la comunicación y promoviendo la capacitación de los familiares de los niños y adolescentes con mielomeningocele.

ABSTRACT This article was developed by nurses with more than five years of practice, at a network of rehabilitation hospitals in Brazil, reference in Latin America. The objective of the present study is to report the activity of nurses in the rehabilitation of children and adolescents with myelomeningocele. The authors held face-to-facemeetings and videoconferences, discussions and exchange of experiences until a consensus was reached and the content was validated. The report was organized and divided into three topics: training for activities of daily living; training for vesicointestinal rehabilitation; training for activities of practical life: autonomy and participation. Families of individuals with myelomeningocele face difficulties related to the chronic condition and lack of structure and humanized services that guarantee and qualify home care. The challenge consists of providing subsidizes that guide professionals in the maintenance of home care, improving communication and training family members of children and adolescents with myelomeningocele.

Movin' On Up: An Innovative Nurse-Led Interdisciplinary Health Care Transition Program.

This article provides an overview of an innovative nurse-led interdisciplinary health care transition (HCT) model of care entitled Movin' On Up for adolescents and emerging adults (AEAs) with spina bifida (SB) that was originally implemented in 2011. The components of the HCT service model include an HCT nursing specialist, who is an advanced practice nurse; interdisciplinary health care transition plans based on the individualized needs of AEAs; an interdisciplinary HCT team that meets on a weekly basis; direct HCT services provided in the weekly SB clinic; and telephonic follow-up with AEAs, families, and providers. The characteristics of this nurse-led HCT program can be described as an integrated, interdisciplinary, and comprehensive model of care based on a life span approach. To date, a total of 210 AEAs with SB, ages 10 to 20 years, have been enrolled into the program. An important feature of this HCT service model is that it is self-supporting; it generates the revenue needed for sustainability and, unlike other HCT programs, is not reliant on extramural programmatic support. Other accomplishments of Movin' On Up include the development of a transfer protocol wherein 35 AEAs with SB have been supported in their transfer to adult care; implementation of a standardized process to ensure that service referrals to community-based services for postsecondary education, employment, training, and initiation of conservatorships are made; timely performance of evaluations; close tracking of needs and outcomes of self-management knowledge and skills instruction; and attention to equipment needs prior to transfer.

Transitioning adolescents and young adults with spina bifida to adult healthcare: initial findings from a model program.

PURPOSE: The Spina Bifida Transition Project (SBTP) was developed by partners from pediatric and adult health care settings using existing best practice information in an effort to transition adolescents to adult health care providers. The purpose of this manuscript is to present the results of an initial evaluation of the SBTP from the adolescent/young adult (AYA) and family perspective. DESIGN AND METHODS: Qualitative evaluation data were obtained from telephone interviews with 40 individuals (24 AYA and 16 parents representing 28 families) two-three weeks after initial adult clinic visits using a semi-structured interview guide. FINDINGS: Interview analysis yielded six overall themes: Positive experience, Developing Trust, Unexpected Benefits, Communication, Potential Worries, and Suggestions for Improvement. The study supported both the effectiveness of the SBTP as well as patient desire for earlier initiation of transition activities CONCLUSION AND CLINICAL RELEVANCE: SBTP is well-received by participants and their parents and may be useful model for other chronic health conditions.

Continence advice by telehealth for young people.

Children and young people operate in an advanced technological world where new, exciting opportunities exist for remote interactions. To engage with these service users, we set up a nurse-led telehealth facility that enabled young people with spina bifida to access specialist continence service from home. This article describes efforts to embed this innovation into practice and offer insight to some of the challenges we faced in the process. It offers practical guidance on setting up similar services.

Desarrollo de la autonomía de los jóvenes portadores de espina bífida -lo que dicen los jóvenes y sus padres/cuidadores / The development of autonomy in young patients with spina bifida © what the youngsters and their parents/careers say

La Espina Bífida (EB) es una malformación congénita de la médula espinal, de acuerdo con el nivel de lesión de la médula espinal, estos niños presentan limitaciones de tipo ortopédico, urológico, motor y sensorial, que dificultan la adquisición de las habilidades necesarias para llevar a cabo sus actividades de la vida diaria (AVD) y la construcción de su autonomía. Este proceso está influenciado de forma positiva o negativa por el modo cómo los padres perciben sus necesidades. Así, los principales objetivos de este estudio fueron conocer la opinión de los jóvenes con Espina Bífida (EB) y de sus padres/cuidadores acerca del proceso de construcción de la autonomía e identificar cuáles son los factores que consideran favorables y desfavorables al mismo A partir del análisis de las entrevistas Focus Group, a siete jóvenes con EB (Grupo A) y sus padres / cuidadores (Grupo B) surgieron las siguientes categorías: evaluación del proceso de construcción de la autonomía en general, los factores que la dificultan y los factores que fueron facilitadores y lo que sugieren para mejorar este proceso. Los resultados revelaron que ser autónomo significa ser independiente lo que conduce a una mayor autoestima. Como factores que dificultan, destacan la actitud de los jóvenes (motivación y sentimientos de repulsa hacia su cuerpo) y de sus padres/cuidadores (superprotección). Como factores facilitadores destacan la accesibilidad, el apoyo de jóvenes con EB ya autónomos (modelos). Creemos que este estudio podrá contribuir a adecuar la intervención de enfermería y así mejorar la calidad de vida de estos jóvenes(AU)

The Spina Bifida (SB) is a congenital malformation of the spinal cord, according to the level of spinal cord injury, these children present limitations of the orthopedic, urological, motor and sensory forum, hindering the acquisition of skills needed to perform their activities of daily living. This situation is extended during childhood and compromises the development of the autonomy of these young people as an essential step for its development. The aim of this study is to know the opinion of young people with SB and their parents / caregivers, about the process of autonomy and the factors that are indicated as favorable and unfavorable to this process. Based on the analysis of two Focus Group interviews, to seven youth with SB and their parents / caregivers, the following categories emerged: construction of autonomy in general, hygiene, mobility and elimination. The results revealed that being autonomous means being independent and young people see this aspect as leverage in their self-esteem. The factors that relate hinder the construction of autonomy is connected to the environment: the architectural barriers, the lack of hygiene and accessibility of toilets; the parental overprotection, the lack of motivation and the feeling of revulsion against its body. As facilitating factors: accessibility of the environment, upgraded bathrooms, operational strategies and the existence of support system and a reference model. We believe that this study may be the first step to allow an appropriate intervention of the nurses resulting in an improvement of the quality of life of this youth(AU)

Transitioning adolescents and young adults with a chronic health condition to adult healthcare - an exemplar program.

Pediatric specialists have successfully improved the longevity and quality of life of many children with chronic health conditions. As these children reach adolescence and young adulthood, the scope of their concomitant medical problems often include those typically seen in older patients. As a result, these individuals need continuing quality health care in focused adult healthcare facilities. This article describes the effective partnership between pediatric and adult healthcare providers to create and implement an exemplar Spina Bifida Transition Program. The processes, strategies and tools discussed are likely to be useful to other healthcare professionals interested in developing pediatric to adult transition programs for adolescents and young adults with chronic health conditions.

The legacy of "Joanna": the role of ethical debate in nurse preparation.

INTRODUCTION: The author was involved in nursing "Joanna", a neonate who was born in 1980 with a serious form of spina bifida. A scenario describing the Joanna case was introduced to two groups of students in order to enhance critical thinking skills and encourage ethical debate in the classroom. Critical thinking skills, which are essential in professional practice, include the honest appraisal of intellectual positions adopted by one's self and others, and caring about the dignity and worth of each person (Ennis 1996, cited in Robinson, 2011). METHODOLOGY: The scenario was presented as a case study to two classes, one of which comprised undergraduate nursing students, the other, mature-aged retirees. The International Council of Nurses Code of Ethics (2006) was used to critically analyze the concepts of quality of life and empowerment. The qualitative raw data was collected from both groups and compared. DISCUSSION: Nurses are in a key position to identify potential ethical conflicts but need adequate supports in place in order to become empowered and advocate for patients. The differing attitudes towards Joanna and the care she received reflected the different quantities and types of life experiences available in the two class groups. CONCLUSION: Nurse education programs now accept greater numbers of students from diverse backgrounds; therefore, educators need to plan for these differences in life experience when inducting students into professional practice. The outcome of introducing the scenario into the classroom demonstrates the imperative of seeking a wide variety of perspectives to develop ethical debate and preparation for professional practice.

A retrospective pattern analysis.

The purpose of this article was to explore the application of pattern analysis retrospectively to a 2-year relationship between me and a young mother of a small child with spina bifida. Five patterns are presented within the context of movement, time, space, and consciousness, followed by analysis of transitions, transforming experiences, and choice points. Finally connectedness with client is discussed along with implications for praxis.

Maternity care of a woman with spina bifida.

With the increased advancements of corrective surgery for babies with spina bifida, more women these days affected by spina bifida are reaching child bearing age and having children of their own. This poses both obstetric an medical challenges to ensure the safe care of both the mother and child. This case study explores the healthcare needs of the woman with spina bifida and the medical and obstetric challenges that are posed, particularly in the antenatal period. It examines the role of the midwife in providing holistic co-ordinated care to ensure that the outcome is both positive and empowering.

A fight for the right to life.

This paper describes the experience of 'Pamela*, mother of a child with spina bifida, diagnosed prenatally. It was disclosed during a research project exploring 'Family Centred Care' (FCC) with disabled children, and a very challenging ethical dilemma arose. This mother felt unsupported in her decision to go ahead with having her baby with spina bifida; this was in contrast to the support she received for her disabled child, once born. The discussion will focus around the challenge of supporting parents in decision making in midwifery and health care practice.

Predictors of parenting stress in mothers of children with spina bifida.

STUDY DESIGN: Prospective cross-sectional multidimensional study using clinical assessment and standard measures. OBJECTIVES: To determine the medical and social factors associated with parenting stress among mothers of children with spina bifida. SETTING: Spina bifida clinics of two tertiary hospitals in urban Kuala Lumpur, Malaysia. METHODS: A total of 81 mothers of children aged 1-18 years completed the Parenting Stress Index-Short Form (PSI/SF). Each child's adaptive skills were assessed using the Vineland Adaptive Behaviour Scales (VABS), Interview Edition. Medical and social data were obtained from direct interviews and case note reviews. Hierarchical multiple regression analysis was used to investigate factors that were determinants for high scores in the parental distress (PD), difficult child (DC) and parent-child dysfunctional interaction (P-CDI) subdomains of the PSI/SF. Results were expressed as beta coefficient (ß) and 95% confidence intervals (95% CIs). RESULTS: Single-parent families (ß 8.6, 95% CI 3.4-13.9) and the need for clean intermittent catheterization of bladder (ß 3.5, 95% CI 0.7-6.2) were associated with high PD scores. Clean intermittent catheterization (ß 3.0, 95% CI 0.5-5.5) was associated with higher DC scores. Lower composite VABS scores (ß -0.08, 95% CI -0.02 to -0.15) and mother as the sole caregiver (ß 2.6, 95% CI 0.15-4.96) was associated with higher P-CDI scores. CONCLUSION: The need for clean intermittent catheterization was the only medical factor associated with parenting stress in mothers of children with spina bifida. This was mediated by single parenthood, caregiver status and the child's adaptive skills.