Kathleen J. Sawin

The Individual and Family Self-Management Theory: Background and perspectives on context, process, and outcomes

Current evidence indicates that individuals and families who engage in self-management (SM) behaviors improve their health outcomes. While the results of these studies are promising, there is little agreement as to the critical components of SM or directions for future study. This article offers an organized perspective of similar and divergent ideas related to SM. Unique contributions of prior work are highlighted and findings from studies are summarized. A new descriptive mid-range theory, Individual and Family Self-management Theory, is presented; assumptions are identified, concepts defined, and proposed relationships are outlined. This theory adds to the literature on SM by focusing on individuals, dyads within the family, or the family unit as a whole; explicating process components of SM; and proposing use of proximal and distal outcomes.

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.

Quality of life in individuals with spina bifida: a research update.

Quality of life (QOL) is an important concept for individuals with chronic health conditions. Measuring and supporting QOL in children, adolescents, and adults with spina bifida (SB) may be especially unique given the broad range of complex health and rehabilitative challenges they encounter. This article provides a research update on (a) conceptual and methodological considerations in measuring QOL and a related construct, health-related quality of life (HRQOL); (b) the state of the science in QOL and HRQOL for individuals with SB; and (c) gaps in the evidence and implications for future research. A synthesis of the literature was limited by the use of 17 different QOL and HRQOL instruments to measure these constructs and notable weaknesses in the most frequently used condition-specific HRQOL instrument. However, a tentative pattern of lower scores on the physical domain of HRQOL measures in individuals with SB in comparison to peers emerged, while discrepancies in emotional, social, and school domains varied by study. Recommendations for future research include using a lifespan approach to expand QOL studies to older adults with SB and focusing on intervention research to prevent or treat decreased HRQOL.

The National Spina Bifida Patient Registry: profile of a large cohort of participants from the first 10 clinics.

OBJECTIVE To use data from the US National Spina Bifida Patient Registry (NSBPR) to describe variations in Contexts of Care, Processes of Care, and Health Outcomes among individuals with spina bifida (SB) receiving care in 10 clinics. STUDY DESIGN Reported here are baseline cross-sectional data representing the first visit of 2172 participants from 10 specialized, multidisciplinary SB clinics participating in the NSBPR. We used descriptive statistics, the Fisher exact test, χ(2) test, and Wilcoxon rank-sum test to examine the data. RESULTS The mean age was 10.1 (SD 8.1) years with slightly more female subjects (52.5%). The majority was white (63.4%) and relied upon public insurance (53.5%). One-third had sacral lesions, 44.8% had mid-low lumbar lesions, and 24.9% had high lumbar and thoracic lesions. The most common surgery was ventricular shunt placement (65.7%). The most common bladder-management technique among those with bladder impairment was intermittent catheterization (69.0%). Almost 14% experienced a pressure ulcer in the last year. Of those ages 5 years or older with bowel or bladder impairments, almost 30% were continent of stool; a similar percentage was continent of urine. Most variables were associated with type of SB diagnosis. CONCLUSION The NSBPR provides a cross section of a predominantly pediatric population of patients followed in specialized SB programs. There were wide variations in the variables studied and major differences in Context of Care, Processes of Care, and Health Outcomes by type of SB. Such wide variation and the differences by type of SB should be considered in future analyses of outcomes.

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.

Evaluation of Temporal Artery Thermometry in Children 3–36 Months Old

PURPOSE This study aims to determine whether temporal artery (TA) thermometer readings are accurate and better tolerated than rectal readings in young children. DESIGN AND METHODS Paired rectal and TA temperature readings and Face Legs Activity Cry and Consolability (FLACC) scores were obtained. RESULTS TA thermometry failed to detect rectal fever (38 degrees C or greater) in approximately 20% of paired temperature readings. FLACC scores were significantly lower after TA readings than after rectal readings. PRACTICE IMPLICATIONS This study questions TA readings as an accurate substitute for rectal thermometry.

Testing the feasibility of a National Spina Bifida Patient Registry

BACKGROUND The purpose of this study was to describe the development and early implementation of a national spina bifida (SB) patient registry, the goal of which is to monitor the health status, clinical care, and outcomes of people with SB by collecting and analyzing patient data from comprehensive SB clinics. METHODS Using a web-based, SB-specific electronic medical record, 10 SB clinics collected health-related information for patients diagnosed with myelomeningocele, lipomyelomeningocele, fatty filum, or meningocele. This information was compiled and de-identified for transmission to the Centers for Disease Control and Prevention (CDC) for quality control and analysis. RESULTS A total of 2070 patients were enrolled from 2009 through 2011: 84.9% were younger than 18 years of age; 1095 were women; 64.2% were non-Hispanic white; 6.5% were non-Hispanic black or African American; and 24.2% were Hispanic or Latino. Myelomeningocele was the most common diagnosis (81.5%). CONCLUSIONS The creation of a National Spina Bifida Patient Registry partnership between the CDC and SB clinics has been feasible. Through planned longitudinal data collection and the inclusion of additional clinics, the data generated by the registry will become more robust and representative of the population of patients attending SB clinics in the United States and will allow for the investigation of patient outcomes.

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.

Factors associated with the psychological and behavioral adjustment of siblings of youths with spina bifida.

The intensive health management activities associated with spina bifida (SB) often command a pervasive presence in the lives of families and may place some members at risk for psychosocial difficulties. However, research on the risk and protective factors associated with sibling adjustment is limited. Anchored upon a social-ecological theoretical framework, the purpose of this cross-sectional study was to explore the relationships between select individual, family, and peer factors and sibling adjustment. A convenience sample of 224 adolescent siblings and parents of youths with SB responded to anonymous mailed surveys. Siblings completed measures of attitude toward spina bifida, family satisfaction, warmth and conflict in the sibling relationship, peer support, and three dimensions of adjustment-self-concept, prosocial behavior, and behavior problems. Parents provided SB clinical data and family demographics. The individual, family, and peer factors explained a significant amount of variance in sibling self-concept, prosocial behavior, and behavior difficulties, with R(2) ranging from .27 to .57. Differing patterns of the relationships between the ecological factors and sibling adjustment emerged. Findings highlight multi-level opportunities to intervene and support siblings. Minimizing threats and bolstering protective influences on sibling adjustment is an essential component of family-centered services in SB.

The relationship of neuropsychological functioning to adaptation outcome in adolescents with spina bifida

Adolescents with spina bifida (SB) vary in their ability to adapt to the disease, and it is likely that numerous risk and protective factors affect adaptation outcomes. The primary aim was to test neuropsychological impairment, exemplified herein by executive dysfunction, as a risk factor in the Ecological Model of Adaptation for Adolescents with SB. Specific hypotheses were that: (1) executive functioning predicts the adaptation outcome of functional independence in adolescents with SB; (2) executive functioning mediates the impact of neurological severity on functional independence; and (3) family and adolescent protective factors are related to functional independence and moderate the relationship between executive functioning and functional independence. Forty-three adolescents aged 12-21 years completed neuropsychological measures and an interview that assessed risk, adolescent and family protective factors, and functional independence. Age, level of lesion, executive functioning, and the protective factor adolescent activities were significantly correlated with the functional independence outcome. In hierarchical regression analysis, the model accounted for 61% of the variance in functional independence outcomes. Executive functioning mediated the impact of neurological severity on functional independence.