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The purpose of this study was to assess family‐related predictors of self‐management trajectories in youth with spina bifida (SB). Participants with SB completed the Adolescent/Young Adult Self‐Management and Independence Scale (AMIS II) interview across four time points. Family functioning, family‐related stress, and perceived family support were assessed by multiple reporters and multiple methods. Growth in AMIS II total self‐management and the AMIS II subscales (Condition and Independent Living) were estimated using linear mixed effect models as a function of family factors, after controlling for socio‐demographic, condition‐related, and neuropsychological variables that had been found to be significant predictors of self‐management in prior studies. Model fit and parsimony were assessed using Akaike's information criterion (AIC). This diverse community sample included 99 respondents aged 18–27 years old. About half were female (52.5%) and White (52.5%); 15.2% were Black, and 32.3% were Hispanic/Latino. Observed family cohesion at baseline was associated with all self‐management scales at age 18 (all p < 0.05). Growth in self‐management was associated with parent‐reported number of family stress events. For growth in total self‐management, the best model included age, race/ethnicity, family income, shunt status, lesion level, neuropsychological function, observed family cohesion, and an age‐by‐number of family stress events interaction effect. The study findings suggested that family factors were important predictors of self‐management trajectories, even after controlling for socio‐demographic, condition‐related, and neuropsychological covariates. Risk and protective factors identified in families of youth with SB can inform family‐focused interventions for self‐management. [ABSTRACT FROM AUTHOR]

Aim: To create a programme theory of family engagement in paediatric acute care to explicate the relationships between contexts and mechanisms of family engagement that align with family, direct care providers and healthcare organization outcomes. Design: Realist review and synthesis. Data Sources: PubMed, CINAHL, PsycINFO and Web of Science searches for the 2.5‐year period (July 2019–December 2021) following our 2021 scoping review. Review Methods: Following methods described by Pawson and Rycroft‐Malone, we defined the scope of the review, searched for and appraised the evidence, extracted and synthesized study findings and developed a supporting narrative of our results. Results: Of 316 initial citations, 101 were included in our synthesis of the final programme theory. Contexts included family and direct care provider individualism, and the organizational care philosophy and environment. Mechanisms were family presence, family enactment of a role in the child's care, direct care providers facilitating a family role in the child's care, unit/organizational promotion of a family role, relationship building and mutually beneficial partnerships. Outcomes were largely family‐focussed, with a paucity of organizational outcomes studied. We identified four context–mechanism–outcome configurations. Conclusion: This realist review uncovered underlying contexts and mechanisms between patients, direct care providers and organizations in the family engagement process and key components of a mutually beneficial partnership. Given that successful family engagement requires direct care provider and organizational support, future research should expand beyond family outcomes to include direct care providers, particularly nurses and healthcare organization outcomes. Impact: The final programme theory of family engagement in paediatric acute care provides a roadmap for clinicians to develop complex interventions to engage families and evaluate their impact. The components of our final programme theory reflect family engagement concepts that have been evolving for decades. Patient or Public Contribution: The team conducting this review included members from the practice setting (JT & KG). In the future, as we and others use this model in practice, we will seek input for refinement from clinicians, patients and caregivers. [ABSTRACT FROM AUTHOR]

Purpose: This study examined preliminary psychometrics of the Adolescent/Young Adult Self‐Management and Independence Self‐Report Scale (AMIS II SR). Methods: Adolescents and adults (N = 159; 13–38 years old) with spina bifida from two clinics and one community sample completed the AMIS II SR. The majority (83%) had myelomeningocele, and about half were female (51.6%). The sample included 44.7% White, 11.3% Black and over one‐third Hispanic/Latino (38.4%) participants. Descriptive analyses and reliability were assessed; a confirmatory factor analysis (CFA) was conducted. Results: Item‐to‐total correlations support the AMIS II SR total scale (r =.38–.79) and its two subscales: condition (r =.49–.67) and independent living (r =.49–.85). Internal consistency reliability was high (α =.91–.96) for the AMIS II SR total scale and subscales. A higher order CFA model that included independent living and condition self‐management as first‐order factors and a second‐order overall self‐management factor had excellent fit (RMSEA = 0.06; CFI = 0.97; TLI = 0.96). Descriptive analyses findings were reported. Conclusions: This study provides psychometric evidence for the use of the AMIS II SR total (overall) scale and subscales (condition and independent living) to assess self‐management and independence. [ABSTRACT FROM AUTHOR]

Aim: The purpose of this study was to examine the trajectories of condition and independent living self‐management in youth with spina bifida (SB). Methods: A diverse sample of adolescents and young adults (AYAs) with SB completed the Adolescent/Young Adult Self‐Management and Independence Scale (AMIS‐II) across four time points. Parents reported on demographic characteristics including age, sex, race/ethnicity, and family income. Growth in self‐management and its subscales (condition and independent living) were estimated using linear mixed‐effect models as a function of respondents' demographics. Results: This study included 99 respondents age 18 to 27 years old. About half were female (52.5%) and White (52.5%); 15.2% were Black, and about a third were Hispanic/Latino (32.3%). Eighty‐seven AYAs (87.9%) had myelomeningocele. The lesion level was 31.3% sacral, 48.5% lumbar and 18.2% thoracic. A third of the families earned less than 50K. Overall, self‐management growth was dependent on age, sex, and race/ethnicity, but not income. Growth in condition self‐management depended on sex; only males demonstrated increasing growth (β̂ = 0.11, p < 0.001). Black participants endorsed higher increasing total and condition self‐management when compared with White (β̂diff = 0.17 and 0.17, respectively, both p < 0.05) and Hispanic/Latino (β̂diff = 0.18 and 0.21, respectively, both p = 0.02) respondents. Conclusion: This study provides evidence of differences in growth of self‐management by demographic/social determinants of health. Possible reasons for differences are discussed. Predictors of changes in self‐management behaviours over time in young adults with SB can identify subgroups in need of further study. [ABSTRACT FROM AUTHOR]

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. (Contains 4 tables.)

The impact of childhood chronic health conditions like spina bifida (SB) is a shared family experience. However, the lived experience of siblings is not well known. One hundred and fifty-five brothers and sisters of a child with SB responded to an open-ended question included in an anonymous self-administered mail questionnaire designed to enhance awareness of how adolescent siblings experience this chronic condition. Content analysis performed by interdisciplinary authors identified four domains--Rewards and Consequences of Spina Bifida, Journey Toward Acceptance of Spina Bifida, Emotional Climate of Siblings, and Qualities of the Social Environment--that depict emotional complexity in response to the diverse risk and protective influences present in the lives of siblings. By bolstering the siblings' strengths and resources found in their adaptive coping mechanisms, spirituality, cohesive family ties, and supportive peer friendships, social workers and other health care professionals may help them to successfully navigate the intense and confusing emotions that may naturally spring from the challenges and opportunities associated with SB.

This study compares quality of discharge teaching and care coordination for parents of children with challenging behaviors participating in a nursing implementation project, which used an interactive iPad application, to usual discharge care. Unlike parents in the larger quasi-experimental longitudinal project, parents of children with challenging behaviors receiving the discharge teaching application (n = 14) reported lower mean scores on the quality of discharge teaching scale–delivery subscale (M = 8.2, SD = 3.1) than parents receiving usual care (n = 11) (M = 9.6, SD = 4.7) and lower scores on the Care Transition Measure (M = 2.44, SD = 1.09) than parents receiving usual care (M = 3.02, SD = 0.37), with moderate to large effects (0.554–0.775). The discharge teaching approach was less effective with this subset, suggesting other approaches might be considered for this group of parents. Further study with a larger sample specific to parents of children with challenging behaviors is needed to assess their unique needs and to optimize their discharge experience. [ABSTRACT FROM AUTHOR]

To authenticate to the full-text of this article, please visit this link: http://dx.doi.org/10.1111/j.1744-6155.2009.00204.x Byline: Janet K. Holzhauer (1), Vicky Reith (1), Kathleen J. Sawin (1,2), Kenneth Yen (3) Keywords: FLACC Scale; nursing assessment; nursing care; pediatric; rectal temperature; temporal artery temperature Abstract: 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. Author Affiliation: (1)Children's Hospital of Wisconsin (2)University of Wisconsin-Milwaukee (3)Medical College of Wisconsin, Milwaukee Article History: First Received April 25, 2008; Revision received January 6, 2009; Accepted for publication January 9, 2009. Article note: jholzhauer@chw.org, with a copy to the Editor: roxie.foster@UCDenver.edu

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. [...]

This scoping review was conducted to examine the range, nature, and extent of the published family engagement literature specific to the pediatric acute care setting to highlight future research and practice development opportunities. Included studies (N = 247) revealed global relevance. Engagement strategies ranged from more passive such as allowing/encouraging families to be present at the bedside to more active strategies aimed at promoting mutual and reciprocal nurse–patient interactions. Family engagement is distinguished by a mutually beneficial partnership of families with health care team members and care organizations. Future research in the area of family engagement in pediatric nursing should focus on determining the core engaging health professional behaviors and engaged parent outcomes; extending the knowledge base related to mutually beneficial partnerships between families and health care teams; developing effectiveness studies to determine the optimal engaging actions by teams to achieve parent engagement; and measuring the influence of engagement on parent and infant/child outcomes. [ABSTRACT FROM AUTHOR]

The impact of childhood chronic health conditions like spina bifida (SB) is a shared family experience. However, the lived experience of siblings is not well known. One hundred and fifty-five brothers and sisters of a child with SB responded to an open-ended question included in an anonymous self-administered mail questionnaire designed to enhance awareness of how adolescent siblings experience this chronic condition. Content analysis performed by interdisciplinary authors identified four domains--Rewards and Consequences of Spina Bifida, Journey Toward Acceptance of Spina Bifida, Emotional Climate of Siblings, and Qualities of the Social Environment--that depict emotional complexity in response to the diverse risk and protective influences present in the lives of siblings. By bolstering the siblings' strengths and resources found in their adaptive coping mechanisms, spirituality, cohesive family ties, and supportive peer friendships, social workers and other health care professionals may help them to successfully navigate the intense and confusing emotions that may naturally spring from the challenges and opportunities associated with SB. KEY WORDS: chronic health condition; family-centered care; risk and resilience; siblings; spina bifida, With advances in health care and rehabilitative technology enabling youths with spina bifida to live longer and in the context of their families (Bowman, McLone, Grant, Tomita, & Ito, 2001), [...]