Constance F. Buran

Adolescents with myelomeningocele: activities, beliefs, expectations, and perceptions

The Carnegie Council on Adolescent Development, USA has identified activities, beliefs, and perceptions critical for healthy development. The aim of this study was to measure the activities, beliefs and expectations, and perceived outcomes of adolescents with myelomeningocele. In this descriptive study, 66 adolescents with myelomeningocele, aged 12 to 21 years and functioning at grade level, completed a structured interview. Thirty-eight (58%) of the participants were female. The level of lesion was distributed as follows: 30% had thoracic level lesions, 32% had lumbar level lesions, 15% had lumbosacral level lesions, and 23% of the sample had sacral level lesions. Instruments used had both established reliability and validity (WeeFIM, Harters Self-Perception Profile, Austins Child Attitude Toward Illness Scale, and Snyders Hope Scale, Adolescent Decision-Making Inventory, Adolescent Coping Scale) or were scales developed for this study (Adolescent Activities Inventory, Future Expectations Scale, Communication Efficacy, and Adolescent Self-Management and Independence Scale). Scale reliabilities ranged from 0.70 to 0.88. These participants, though hopeful and positive in their attitudes toward myelomeningocele and generally able to perform activities of daily living independently, are not engaging in the full range of adolescent activities (decision making, friendship activities, and household responsibilities) and achieving positive outcomes (self-management and job) necessary to make a successful transition to adulthood. This might explain why so many individuals with myelomeningocele are underemployed and are not living independently as young adults.

The Experience of Self-Management in Adolescent Women with Spina Bifida

&NA; It is essential for youth with chronic health conditions like spina bifida (SB) to develop self‐management skills to combat vulnerability, achieve self‐sufficiency, and transition to adulthood. The purpose of this qualitative study was to describe the experience of self‐management in 31 adolescent women with SB. Three themes emerged from this study: (1) opportunities to engage in self‐management activities—knowledge, skills, and aspirations; (2) dance of individuation—parental impact on self‐management; and (3) advocacy within self‐management—confronting discrimination and stigma. The findings indicate that assessment and interventions to enhance self‐management in adolescent women with SB are critical for supporting the range of condition‐related and life skills needed for a transition to adulthood and independent living.

Family Needs Assessment in Cerebral Palsy Clinic

PURPOSE The dual purpose of this study was to identify areas of need as perceived by parents of children with cerebral palsy in three domains and to evaluate internal reliability of the Family Needs Assessment Tool (FNAT). DESIGN AND METHODS The FNAT was distributed to parents and includes a demographic survey and three subscales: service, information, and obstacles to care. RESULTS Parents identified services as their greatest need, followed by information and then obstacles to care. PRACTICE IMPLICATIONS The FNAT may be utilized to evaluate parental perceptions of needs, and provide clinicians with information for program planning and assessing needs central to providing quality care.

Needs assessment in a spina bifida program: a comparison of the perceptions by adolescents with spina bifida and their parents.

The primary purpose of this study was to describe and compare medical, psychosocial, and economic needs of adolescents and young adults with a neural tube defect and their parents. A secondary aim of the study was to establish the psychometric properties of a previously published needs assessment tool. Forty-nine adolescent and 59 parents receiving services from a comprehensive spina bifida program at a large children’s hospital completed a needs assessment survey designed to measure perceived needs for health and social services. The Needs Assessment Questionnaire includes 8 subscales (Accessibility/Transportation/Independence, Financial Concerns, Medical Resources, Communication/Acceptance of individuals with spina bifida, Family/Socialization, Education of others regarding spina bifida, School Services, and Vocational Training). Factors related to perceived needs and differences between adolescents and parents were explored. There was a significant difference (P < .05) between parents and adolescents in 6 of the 8 subscales. On the remaining 2 subscales, differences between parents and adolescents approached significance. In all areas of needs for services, parents were less satisfied with the delivery of services and reported that needs were not being met. A significant negative correlation between age of the adolescent and perceived needs related to Transportation/Independence (r = −0.35) and School Services (r = −0.31) was found. Parents with more than a high school education perceived significantly greater needs for Vocational Training than those with less education (r = −2.1, P = .04). Identification of medical, psychosocial, and economic needs of adolescents with a neural tube defect and their families has implications for quality improvement and program development.

Sexuality Issues in Adolescents with a Chronic Neurological Condition

Substantial progress in the medical treatment of individuals with spina bifida (SB) has increased the numbers who survive into adolescence and adulthood. However, sexual health in this population has not received much attention. This study explored the knowledge (SB Sexuality Knowledge Scale), worries (SB Worries Scale), romantic appeal (from Harter’s Self-Perception Scale), and access to sexuality information of a sample of 60 adolescents from a midwestern state. Study participants reported having sexual feelings like their peers, and they knew they could contract sexually transmitted diseases (STDs) if they were sexually active. However, only a moderate percentage was aware that women with SB are fertile, that adolescent women with SB should take a multivitamin with folic acid, and that latex-free condoms should be used by most adolescents with SB. They did not worry about their ability to make friends; however, these adolescents reported low levels of perceived romantic appeal and they worried about sexuality issues. These sexuality issues were not correlated to measures of SB neurological severity. Although over 50% reported having discussed sexuality with a health professional, 29% reported no one discussed sexuality and SB with them. Data from this study can affect the way health care providers and educators conduct sexuality education in health care and school settings.

Further development of the adolescent self management and independence scale: AMIS II

Meeting abstracts - A single PDF containing all abstracts in this supplement is available here .

The meaning of quality of life in adolescents with spina bifida and their parents

Bifida Meeting abstracts - A single PDF containing all abstracts in this supplement is available here .

Secondary conditions in adolescents and young adults (AYA) with spina bifida (SB) in Four US Programs

Background Spina bifida affects one out of every 1200 to 1400 live births each year in the United States. Secondary conditions related to the level of the SB lesion (LOL) such as incontinence, skin breakdown, obesity, pain, and orthopedic problems (e.g., scoliosis) are common. The purpose of this presentation is to address the following questions: 1) What is the frequency of key secondary conditions (bowel/bladder status, skin breakdown, UTIs, pain, overweight, scoliosis, latex allergy)? 2) Are select secondary conditions related to LOL, school, peer or employment activities? 3) How satisfied are participants with their bowel/bladder program and is satisfaction related to clinical variables?

Testing a model of adaptation in adolescents and young adults (AYA) with spina bifida (SB).

Background Little is known physical health (PH), mental health (MH) and health-related quality of life (HRQOL) adaptation outcomes in AYA with SB, and the factors associated with them. The purpose of this presentation is to 1) describe the PH (functional status [FS], self-management, secondary conditions), MH (depression, overall selfworth, and internal/external behavior problems [IBP, EBP]), and HRQOL outcomes; and 2) delineate the direct and indirect relationships of risk and protective variables in the Ecological Model of Secondary Conditions and Adaptation in SB associated with these outcomes. This model includes SB Context (SES, shunt status and level of lesion [LOL]), neuropsychological risk [NPR], and protective processes (adolescent resilience and family resourcefulness).