Publications by authors named "Kathleen J Sawin"

60 Publications

Quality of life: Guidelines for the care of people with spina bifida.

J Pediatr Rehabil Med 2020 ;13(4):565-582

Department of Physical Medicine and Rehabilitation, University of Pittsburgh School of Medicine, Pittsburgh, PA, USA.

Quality of Life (QOL) and Health-Related Quality of Life (HRQOL) are important concepts across the life span for those with spina bifida (SB). This article discusses the SB Quality of Life Healthcare Guidelines from the 2018 Spina Bifida Association's Fourth Edition of the Guidelines for the Care of People with Spina Bifida. The focus of these QOL Guidelines was to summarize the evidence and expert opinions on how to mitigate factors that negatively impact QOL/HRQOL or enhance the factors positively related to QOL/HRQOL, the measurement of QOL/HRQOL and the gaps that need to be addressed in future research.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.3233/PRM-200732DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7838993PMC
January 2020

Self-management and independence guidelines for the care of people with spina bifida.

J Pediatr Rehabil Med 2020 ;13(4):583-600

University of Cincinnati College of Medicine, Division of Developmental and Behavioral Pediatrics Division of Adolescent and Transition Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.

Self-management and independence behaviors are associated with improved health conditions common to spina bifida such as skin integrity and bowel and bladder management. While most children with spina bifida ultimately achieve basic self-care behaviors, (e.g., dressing appropriately, planning activities with peers, or cooking pre-planned meals), they often lag 2-5 years behind their typically-developing peers in these activities [1]. Valid and reliable condition-specific assessments of self-management and independence are critical to optimizing outcomes for this population. Partnerships among parents, clinicians, and youths with spina bifida are essential to implementing tailored interventions based on these assessments. The guidelines delineated in this article are informed by current self-management research for people with spina bifida and offer recommendations to promote self-management and independence across the lifespan.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.3233/PRM-200734DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7838981PMC
January 2020

Self-management and spina bifida: A systematic review of the literature.

Disabil Health J 2021 Jan 16;14(1):100940. Epub 2020 May 16.

Department of PM&R, Upstate Medical University, 750 E Adams St, Syracuse, NY, 13210, USA. Electronic address:

Background: Self-management is critical to optimizing the health of individuals with a chronic condition or disability and is, therefore, a central concept in individual and family-centered healthcare delivery. The purpose of this review is to report the state of the science of self-management for individuals with spina bifida (SB) from a lifespan perspective.

Objective: This review will summarize the (a) development and use of self-management skills and behaviors across the life span, (b) factors related to self-management behaviors, (c) development of generic or condition-specific measures of self-management used with a spina bifida population, and (d) development and/or outcomes of interventions to improve self-management in SB.

Methods: The search strategy was limited to primary research articles published between 2003 and 2019 and followed PRISMA guidelines. The databases searched included: PubMed, CINAHL, PsycINFO, Web of Science, Cochrane, and Google Scholar. Studies that addressed self-management concepts in individuals throughout the life span and published in English were included.

Results: The search yielded 108 citations and 56 articles met inclusion/exclusion criteria. A systematic narrative synthesis was reported. The level of evidence identified was primarily Level III articles of good quality. Multiple demographic, environmental, condition and process factors were related to self-management behaviors. SB self-management instruments and intervention development and testing studies were identified.

Conclusions: This review provides a synthesis of the state of the science of self-management including factors related to self-management behaviors, preliminary evidence of instruments for use in SB, factors important to consider in the development and testing of future interventions, and gaps in the literature.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1016/j.dhjo.2020.100940DOI Listing
January 2021

Parent Readiness for Hospital Discharge Scale: Psychometrics and Association With Postdischarge Outcomes.

J Pediatr Health Care 2020 Jan - Feb;34(1):30-37. Epub 2019 Sep 29.

Introduction: The purpose of this study is to validate the Readiness for Hospital Discharge Scale (RHDS) for use with parents of hospitalized children. PedRHDS is a structured tool for a discharge readiness assessment before pediatric discharge.

Methods: Using combined data from four studies with 417 parents, psychometric testing and item reduction proceeded with principal component analysis for factor structure delineation, Cronbach's alpha for reliability estimation, and regression analysis for predictive validity.

Results: A 23-item PedRHDS retained the a priori factor structure. Reliability ranged from 0.73 to 0.85 for the 23-item and 10- and 8-item short scales. PedRHDS (all forms) was associated with postdischarge coping difficulty (explaining 12%-16% of variance) and readmission (odds ratio = 0.71-0.80).

Discussion: The PedRHDS and both short forms (PedRHDS-SF10 and PedRHDS-SF8) are reliable and valid measures of parental discharge readiness that can be used as outcome metrics of hospital care and risk indicators for postdischarge coping difficulty and readmission.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1016/j.pedhc.2019.06.011DOI Listing
September 2019

Quality of Life in Adolescents and Young Adults with and Without Spina Bifida: An Exploratory Analysis.

J Pediatr Nurs 2019 Nov - Dec;49:10-17. Epub 2019 Aug 14.

Department of Pediatrics, Division of Developmental Medicine, Seattle Children's Hospital and University of Washington School of Medicine, United States of America.

Purpose: The measurement of Quality of life (QOL) in adolescents and especially in adolescents with disabilities is limited, often by an assessment of function rather than perception. This analysis explores QOL in adolescents and young adults (AYA) with and without Spina Bifida (SB) from the perspective of AYA and their parents.

Design And Methods: A descriptive study using content analysis was conducted as a component of a larger multi-site mixed-method study of secondary conditions and adaptation. Participants responded to a single open-ended question on the meaning of quality of life.

Results: Descriptive accounts from 209 families generated the following shared categories: an engaged family, a positive life, the goal of independence, being healthy, essential needs for living, having friends, relying on faith, and romantic relationships. A unique category emerged from parents, doing what AYA wants to do.

Conclusions: Family was the most frequently nominated component of QOL. The centrality of family in QOL is an important finding generally not assessed in measures of QOL or even less in health-related QOL instruments.

Practice Implications: Findings illustrate the importance of evaluating overall QOL from the perspective of AYA and their parents.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1016/j.pedn.2019.08.004DOI Listing
July 2020

Feasibility and Acceptability of a Self-Report Activity Diary in Families of Children With and Without Special Needs.

Compr Child Adolesc Nurs 2019 Dec 14;42(4):293-303. Epub 2019 Jun 14.

Department of Nursing Research, Children's Hospital of Wisconsin , Milwaukee , WI , USA.

This study was conducted to examine the feasibility and acceptability of a self-report activity diary completed by parents and older children to assess the child's daily activity in children with and without special needs. The study included 36 child/parent dyads stratified by child age and diagnosis. Parents (n = 36) and children ≥13 years (n = 12) were asked to report on the child's daily activity using an activity diary. Feasibility was determined based on successfully returned diaries and acceptability via post-study interview. Activity diaries were submitted by 94% of the parents and 100% of the children, with 83% and 80%, respectively, successfully completed. Comments provided post-study regarding the diaries were primarily on the format and were generally negative. The activity diary was feasible to use, but not well accepted within our sample of children with and without special needs or their parents. Further research is needed to create valid physical activity assessment measures that are population specific for individuals with special needs.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1080/24694193.2019.1606864DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6915061PMC
December 2019

The Influence of a Developmental Disability on the Child's Weight-Related Behaviors: A Parent's Perspective.

J Pediatr Nurs 2019 Jul - Aug;47:121-130. Epub 2019 May 22.

University of Wisconsin - Milwaukee, College of Nursing, United States of America.

Purpose: To examine the parent's perspective on how the child's diagnosis of a developmental disability, the weight-management support of the healthcare provider and parental self-care and role modeling influenced the child's weight-related behavior, (i.e. nutrition, physical and sedentary activity).

Design And Methods: This qualitative study, guided by Bronfenbrenner's Ecological System's Theory, used a one-on-one semi-structured telephone interview conducted with 15 parents of children 5-16 years of age with spina bifida or Down syndrome. Interviews were professionally transcribed and thematically analyzed. In addition, parents reported height and weight for themselves and their child.

Results: Three overarching themes within the context of how the child's diagnosis influenced the child's weight-related behaviors emerged: 1) Developmental Characteristics or Condition-Related Factors captured qualities of the child's condition and interactions with the healthcare system; 2) Social Consequences encompassed the influence of the diagnosis on relationships of the child and family members; and 3) Parenting Influences and Practices captured three types of responses including parent perceptions of the diagnosis, parenting behaviors, and parental self-care behaviors, each influencing the child's weight-related behaviors.

Conclusions: Parents illuminated the social and medical challenges that the family encountered due to the child's diagnosis. These challenges directly and indirectly influenced the child's physical and sedentary activity and nutritional intake. Although challenges were present, the strength and determined attitudes of the families became apparent.

Practice Implications: The promotion of self-care and examination and validation of the emotional aspects of parenting a child with a disability may positively influence the child's weight-related behaviors.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1016/j.pedn.2019.05.009DOI Listing
January 2020

Oncology Nurse Managers' Perceptions of Palliative Care and End-of-Life Communication.

J Pediatr Oncol Nurs 2019 May/Jun;36(3):178-190. Epub 2019 Apr 3.

6 Saint Louis University, St. Louis, MO, USA.

The purpose of this study was to describe pediatric oncology nurse managers' (NMs) perspectives of palliative care/end-of-life (PC/EOL) communication. The study, guided by group-as-a-whole theory and empirical phenomenology, was part of a larger, multisite study aimed at understanding pediatric oncology nurses' experiences of PC/EOL communication. Nurses were assigned to focus groups based on length or type of experience (i.e., nurses with <1, 2-5, or >5 years' work experience and NMs). Eleven NMs from three Midwestern pediatric hospitals with large oncology programs participated in one focus group. The participants' mean years of experience was 15.8 in nursing and 12 in pediatric oncology; 90% had a BSN or higher degree; all had supervisory responsibilities. The authors identified 2,912 meaning statements, which were then analyzed using Colaizzi's method. Findings include NMs' overall experience of "Fostering a Caring Climate," which includes three core themes: (1) Imprint of Initial Grief Experiences and Emotions; (2) Constant Vigilance: Assessing and Optimizing Family-Centered Care; and (3) Promoting a Competent, Thoughtful, and Caring Workforce. Findings indicate that pediatric oncology NMs draw on their own PC/EOL experiences and their nursing management knowledge to address the PC/EOL care learning needs of nursing staff and patient/family needs. NMs need additional resources to support nursing staff's PC/EOL communication training, including specific training in undergraduate and graduate nursing programs and national and hospital-based training programs.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1177/1043454219835448DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7197215PMC
May 2020

The development of the Adolescent/Young Adult Self-Management and Independence Scale II: Psychometric data.

J Pediatr Rehabil Med 2018 ;11(4):311-322

Department of Pediatrics, Division of Developmental Medicine, Seattle Children's Hospital and University of Washington School of Medicine, Seattle, WA, USA.

Purpose: Measuring self-management behaviors in adolescents and young adults with chronic health conditions has become a priority in health care, yet there is a paucity of instruments that capture these behaviors. The purpose of this psychometric study was to evaluate the reliability and validity of the 17-item generic Adolescent/Young Adult Self-Management and Independence Scale II (AMIS II).

Method: Data were collected from 201 adolescents/young adults (AYA) with spina bifida and 129 of their parents. Exploratory factor analysis, confirmatory factor analysis, Cronbach alpha, frequencies, Pearson correlations, and intraclass correlations were used to evaluate the data.

Results: The exploratory factor analysis of parent data supported two related self-management factors (Condition Self-Management and Independent Living Self-Management). Confirmatory factor analysis of AYA data confirmed these two factors and an overall scale with good fit statistics (GFI and CFI = 0.86-0.95; RMSEA = 0.057). Internal reliabilities ranged from α= 0.72-0.89. Intraclass correlation analysis supported the stability of the instrument (ICC parent report = 0.82, AYA report = 0.84). Concurrent validity was supported with low to moderate correlations to six related but distinct variables.

Conclusion: Psychometric analysis supports this expanded measure of self-management for AYA with spina bifida. Evaluation of this instrument in AYA with other chronic health conditions is underway.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.3233/PRM-170479DOI Listing
October 2019

Negative Consequences of Providing Nursing Care in the Neonatal Intensive Care Unit.

Nurs Outlook 2018 11 29;66(6):576-585. Epub 2018 Aug 29.

College of Nursing, University of Wisconsin-Milwaukee, Milwaukee, WI; Children's Hospital of Wisconsin, Milwaukee, WI. Electronic address:

Background: Compassion fatigue, secondary traumatic stress, and burnout are negative consequences of providing nursing care among nurses.

Purpose: This cross-sectional study examined a model of negative consequences of providing nursing care (i.e., compassion fatigue, secondary traumatic stress, and burnout) in the Neonatal Intensive Care Unit.

Methods: Data were collected from 174 registered nurses in the level III and IV NICUs in a Midwestern state. Moderated mediation analysis was conducted.

Findings: Self-compassion mediated the relationship between strength of the nurse-infant/family relationship and the negative consequences only when the nurse-physician-collegiality was high. There was no such relationship when the level was low.

Discussion: The study findings support the model of a mechanism for the development of negative consequences, involving self-compassion and nurse-physician collegiality.

Conclusions: The findings may be applied to development of interventions to address negative consequences in nurses and help nursing administrators reduce staff nurses' negative consequences.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1016/j.outlook.2018.08.004DOI Listing
November 2018

Surgeries and Health Outcomes Among Patients With Spina Bifida.

Pediatrics 2018 09;142(3)

National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia;

Background And Objectives: Patients with spina bifida (SB) typically develop serious secondary conditions and undergo surgical procedures related to neurologic disorders, orthopedic abnormalities, bladder and bowel dysfunction, and skin breakdown. In this study, we describe the age distribution of common surgical procedures and health outcomes in patients with SB.

Methods: Using serial cross-sectional data from the National Spina Bifida Patient Registry (2009-2013; = 4664), we examined surgical procedures (gastrointestinal, neurologic, orthopedic, skin, urologic, and other) and health outcomes (fecal continence, urinary continence, skin breakdown, and ambulation status) of patients with SB by age and SB type (myelomeningocele and nonmyelomeningocele).

Results: All patients who were enrolled had available health outcome data, and 81.5% ( = 3801) of patients had complete surgical procedure data, which totaled 18 891 procedures across their lifetimes. Almost all procedures (91.4%) occurred among participants with myelomeningocele SB. For both types of SB, the distribution of procedures varied by age. The most frequent procedures were neurologic, with approximately half (53%) occurring in patients <1 year of age; orthopedic and urologic procedures followed in frequency but tended to occur at older ages. The health outcomes for patients with myelomeningocele SB revealed lower frequencies of positive health outcomes than those for patients with nonmyelomeningocele SB across all age groups. Overall, the rates of fecal and urinary continence and skin breakdown increased with age whereas the ability to ambulate declined with age.

Conclusions: Understanding the surgical procedures and health outcome variations by age and SB type can help clinicians and populations that are affected set expectations regarding the occurrence of these procedures and the outcomes throughout the patients' life spans.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1542/peds.2017-3730DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6216021PMC
September 2018

A Global Family Quality of Life Scale: Preliminary psychometric evidence.

J Pediatr Rehabil Med 2018 ;11(2):103-114

Self-Management Science Center, College of Nursing, Milwaukee, WI, USA.

Purpose: Psychometric data are reported for a new Global Family Quality of Life Scale (G-FQOLS) (3-items) evaluating family members, parents and adolescent/young adults (AYA).

Methods: Families (N= 209) were interviewed in a study addressing secondary conditions and adaptation in families of AYA with and without spina bifida (SB). Principal component factor analysis with Varimax rotation, Cronbach alpha, and Intraclass correlation (ICC) for parent-AYA agreement of FQOL assessment were conducted.

Results: A single factor with an eigenvalue greater than 1 was identified. Factor loadings were 0.79-0.94. Internal reliabilities were strong (α= 0.86-0.90). ICC coefficients between parent and AYA ratings were 0.38-0.48.

Conclusion: This study provides preliminary support for the G-FQOLS. This global appraisal of Family Quality of Life (FQOL) reflects a participant's personal weighting of domains important to him/her.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.3233/PRM-170477DOI Listing
September 2019

Total energy expenditure and body composition of children with developmental disabilities.

Disabil Health J 2018 07 28;11(3):442-446. Epub 2017 Dec 28.

University of Wisconsin - Madison, Biotech Center and Nutritional Sciences, USA.

Background: Obesity prevalence is increased in children with developmental disabilities, specifically in children with spina bifida and Down syndrome. Energy expenditure, a critical aspect of weight management, has been extensively studied in the typically developing population, but not adequately studied in children with developmental disabilities.

Objective: Determine energy expenditure, fat-free mass and body fat percentile and the impact of these findings on recommended caloric intake in children with spina bifida and Down syndrome.

Methods/measures: This pilot study included 36 children, 18 with spina bifida, 9 with Down syndrome and 9 typically developing children. Half of the children with spina bifida were non-ambulatory. Doubly labeled water was used to measure energy expenditure and body composition. Descriptive statistics described the sample and MANOVA and ANOVA methods were used to evaluate differences between groups.

Results: Energy expenditure was significantly less for children with spina bifida who primarily used a wheelchair (p = .001) and children with Down syndrome (p = .041) when compared to children without a disability when adjusted for fat-free mass. However, no significant difference was detected in children with spina bifida who ambulated without assistance (p = .072).

Conclusions: Children with spina bifida and Down syndrome have a significantly decreased energy expenditure which directly impacts recommended caloric intake. No significant difference was detected for children with spina bifida who ambulated, although the small sample size of this pilot study may have limited these findings. Validating these results in a larger study is integral to supporting successful weight management of these children.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1016/j.dhjo.2017.12.009DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6005723PMC
July 2018

Depressive Symptoms in Parents of Children with Spina Bifida: A Review of the Literature.

Compr Child Adolesc Nurs 2017 Jun 1;40(2):71-110. Epub 2017 Feb 1.

d Department of Psychology , Loyola University Chicago , Chicago , Illinois , USA.

To review the literature on the prevalence of depressive symptoms in parents of children with spina bifida (SB) and factors related to these symptoms. A search was conducted using the major health databases (CINAHL, MEDLINE, and PsycINFO). Nineteen studies were identified that met inclusion and exclusion criteria. A context, process, and outcome framework was used to organize the findings. This review identified both: (a) a high prevalence of parental depressive symptoms (PDS); and (b) specific factors: demographics, condition, child, family functioning, and parent factors that explained 32-67% of parent depressive symptoms (PDS). Although contextual factors were important, they alone were not sufficient to explain PDS. Process factors accounted for more variance in PDS than context factors. Findings warrant implementation of depression screening in parents of children with spina bifida. This review identified factors related to PDS and highlighted gaps in the literature to guide future research.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1080/24694193.2016.1273978DOI Listing
June 2017

Longitudinal Study of Bladder Continence in Patients with Spina Bifida in the National Spina Bifida Patient Registry.

J Urol 2018 03 11;199(3):837-843. Epub 2017 Nov 11.

Rare Disorders and Health Outcomes Team, Division of Human Development and Disability, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia.

Purpose: Achieving bladder continence in individuals with spina bifida is a lifetime management goal. We investigated bladder continence status through time and factors associated with this status in patients with spina bifida.

Materials And Methods: We used National Spina Bifida Patient Registry data collected from 2009 through 2015 and applied generalized estimating equation models to analyze factors associated with bladder continence status.

Results: This analysis included 5,250 participants with spina bifida in a large, multi-institutional patient registry who accounted for 12,740 annual clinic visit records during the study period. At last followup mean age was 16.6 years, 22.4% of participants had undergone bladder continence surgery, 92.6% used some form of bladder management and 45.8% reported bladder continence. In a multivariable regression model the likelihood of bladder continence was significantly greater in those who were older, were female, were nonHispanic white, had a nonmyelomeningocele diagnosis, had a lower level of lesion, had a higher mobility level and had private insurance. Continence surgery history and current management were also associated with continence independent of all other factors (adjusted OR and 95% CI 1.9, 1.7-2.1 and 3.8, 3.2-4.6, respectively). The association between bladder management and continence was stronger for those with a myelomeningocele diagnosis (adjusted OR 4.6) than with nonmyelomeningocele (adjusted OR 2.8).

Conclusions: In addition to demographic, social and clinical factors, surgical intervention and bladder management are significantly and independently associated with bladder continence status in individuals with spina bifida. The association between bladder management and continence is stronger in those with myelomeningocele.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1016/j.juro.2017.11.048DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5948157PMC
March 2018

Obesity Prevention for Individuals with Spina Bifida.

Curr Obes Rep 2017 Jun;6(2):116-126

Department of Nursing Research, Children's Hospital of Wisconsin, 9000 W. Wisconsin Avenue, Milwaukee, WI, 53201-1997, USA.

Purpose Of Review: Obesity is a common comorbidity in individuals with spina bifida. Carrying excess weight exacerbates the inherent health challenges associated with spina bifida, impedes the individual's ability to self-manage their condition, and creates further challenges for family members and caregivers. This manuscript provides a narrative review of key issues for understanding and prevention of obesity in persons with spina bifida within the context of the social ecological model.

Recent Findings: Specific variables related to obesity and spina bifida include individual factors (i.e., body composition and measurement issues, energy needs, eating patterns, physical activity, and sedentary activity) family factors (i.e., parenting/family, peers), community factors (i.e., culture, built environment, healthcare and healthcare providers, and school), and societal factors (i.e., policy issues). Due to the complex etiology of obesity and its increased prevalence in individuals with spina bifida, it is critical to initiate prevention efforts early with a multifactorial approach for this at-risk population. Increased research is warranted to support these efforts.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1007/s13679-017-0254-yDOI Listing
June 2017

Parental Feeding Behaviors and Weight-Related Concerns in Children With Special Needs.

West J Nurs Res 2017 08 8;39(8):1070-1093. Epub 2017 Jan 8.

1 University of Wisconsin-Milwaukee College of Nursing, Milwaukee, WI, USA.

Parental feeding behaviors and concern about child weight are associated with obesity among youth who are typically developing. Little is known about this relationship among parents of youth with special needs, despite these children having higher obesity risk. This study used an online survey to explore associations among parental feeding behaviors, parent weight concerns, demographics, and child weight status in a sample of 356 parents of children diagnosed with autism spectrum disorder, spina bifida, and Down syndrome. Specific parental feeding behaviors were significantly related to the child's weight and intensified when the parent was concerned about the child's weight. Child's diagnosis, family income, parent age, and parent gender influenced select feeding behaviors. Obesity has significant health ramifications and negatively affects an individual's ability to self-manage, which is crucial in individuals with special needs. These findings present an opportunity for the health care community to educate and promote healthy feeding practices in this vulnerable population.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1177/0193945916687994DOI Listing
August 2017

Development of a Self-Management Theory-Guided Discharge Intervention for Parents of Hospitalized Children.

J Nurs Scholarsh 2017 03;49(2):202-213

Eta Nu & Alpha Chi, Professor, Associate Dean for Research, Director, Self-Management Science Center at UWM, College of Nursing, University of Wisconsin-Milwaukee, Milwaukee, WI, USA.

Background: Parents of hospitalized children, especially parents of children with complex and chronic health conditions, report not being adequately prepared for self-management of their child's care at home after discharge.

Problem: No theory-based discharge intervention exists to guide pediatric nurses' preparation of parents for discharge.

Purpose: To develop a theory-based conversation guide to optimize nurses' preparation of parents for discharge and self-management of their child at home following hospitalization.

Methods: Two frameworks and one method influenced the development of the intervention: the Individual and Family Self-Management Theory, Tanner's Model of Clinical Judgment, and the Teach-Back method. A team of nurse scientists, nursing leaders, nurse administrators, and clinical nurses developed and field tested the electronic version of a nine-domain conversation guide for use in acute care pediatric hospitals.

Conclusions: The theory-based intervention operationalized self-management concepts, added components of nursing clinical judgment, and integrated the Teach-Back method.

Clinical Relevance: Development of a theory-based intervention, the translation of theoretical knowledge to clinical innovation, is an important step toward testing the effectiveness of the theory in guiding clinical practice. Clinical nurses will establish the practice relevance through future use and refinement of the intervention.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1111/jnu.12284DOI Listing
March 2017

Research Needs for Effective Transition in Lifelong Care of Congenital Genitourinary Conditions: A Workshop Sponsored by the National Institute of Diabetes and Digestive and Kidney Diseases.

Urology 2017 May 2;103:261-271. Epub 2017 Feb 2.

Division of Kidney, Urologic and Hematologic Diseases, National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health, Bethesda, MD.

Over the last 5 decades, health-care advances have yielded quantum improvements in the life expectancy of individuals with congenital genitourinary conditions (CGCs), leading to a crisis of care. Many individuals with CGC enter adulthood unprepared to manage their condition. Pediatric CGC specialists lack training to manage adulthood-related health-care issues, whereas adult genitourinary specialists lack training within the context of CGCs. To address these challenges, the National Institutes of Diabetes and Digestive and Kidney Diseases convened individuals with CGCs and experts from a variety of fields to identify research needs to improve transitional urology care. This paper outlines identified research needs.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1016/j.urology.2016.12.052DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5404938PMC
May 2017

Discharge Teaching, Readiness for Discharge, and Post-discharge Outcomes in Parents of Hospitalized Children.

J Pediatr Nurs 2017 May - Jun;34:58-64. Epub 2017 Jan 10.

College of Nursing, University of Wisconsin-Milwaukee, PO Box 413, Milwaukee, WI 53201-0413, United States. Electronic address:

Purpose: This study explored the sequential relationships of parent perceptions of the quality of their discharge teaching and nurse and parent perceptions of discharge readiness to post-discharge outcomes (parental post-discharge coping difficulty, readmission and emergency department visits).

Design/methods: In this secondary analysis of data from a longitudinal pilot study of family self-management discharge preparation, the correlational design used regression modeling with data from a convenience sample of 194 parents from two clinical units at a Midwest pediatric hospital. Data were collected on the day of discharge (Quality of Discharge Teaching Scale; Readiness for Hospital Discharge Scale), at 3weeks post-discharge (Post-Discharge Coping Difficulty Scale), and from electronic records (readmission, ED visits).

Results: Parent-reported quality of discharge teaching delivery (the way nurses teach), but not the amount of content, was positively associated with parent perception (B=0.54) and nurse assessment (B=0.16) of discharge readiness. Parent-reported discharge readiness was negatively associated with post-discharge coping difficulty (B=-0.52). Nurse assessment of discharge readiness was negatively associated with readmission; a one point increase in readiness (on a 10 point scale) decreased the likelihood of readmission by 52%.

Conclusion: There is a sequential effect of quality of discharge teaching delivery on parent discharge readiness, which is associated with parent coping difficulty and child readmission.

Practice Implications: Efforts to improve discharge outcomes should include strategies to build nurse teaching skills for high-quality delivery of discharge teaching. In addition, routine nurse assessment of discharge readiness can be used to identify children at risk for readmission and trigger anticipatory interventions.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1016/j.pedn.2016.12.021DOI Listing
April 2018

Factors associated with parent depressive symptoms and family quality of life in parents of adolescents and young adults with and without Spina Bifida.

J Pediatr Rehabil Med 2016 11;9(4):287-302

Department of Psychology, University of Wisconsin-Milwaukee, Milwaukee, WI, USA.

Purpose: The purpose of this study was to explore factors related to parental depressive symptoms (PDS) and family quality of life (FQOL) in parents of adolescents and young adults (AYA) with and without a specific chronic health condition (CHC), spina bifida.

Methods: Two hundred and nine parents of AYA (112 with SB; and 97 without) and their AYA (46% males and 54% females) took part in a multi-site cross-sectional descriptive correlational study. In telephone interviews parents reported on measures of family satisfaction, resources, cohesion, stress, demographic and clinical data.

Results: In the multivariate analyses, 38% of the variance of PDS was explained by family income, family resources and parent stress. Having a child with SB was not predictive of PDS. However, having a child with SB, along with family satisfaction, parent stress and PDS explained 49% of the variance of FQOL. PDS partially mediate the relationship of family resources and FQOL.

Conclusion: PDS, family stress, and resources should be evaluated routinely, especially for those with low income. Parents of AYA with SB who have elevated PDS are at increased risk of having lower reported FQOL.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.3233/PRM-160399DOI Listing
November 2016

Testing Components of a Self-Management Theory in Adolescents With Type 1 Diabetes Mellitus.

Nurs Res 2016 Nov/Dec;65(6):487-495

Gwen Verchota, PhD, CNP, is Nurse Scientist and Care Delivery Manager, virtuwell by HealthPartners, St. Paul, Minnesota. Kathleen J. Sawin, PhD, CPNP-PC, FAAN, is Professor Emerita, University of Wisconsin-Milwaukee College of Nursing, and Nurse Scientist, Children's Hospital of Wisconsin, Milwaukee, Wisconsin.

Background: The role of self-management in adolescents with type 1 diabetes mellitus is not well understood.

Purpose: The purpose of the research was to examine the relationship of key individual and family self-management theory, context, and process variables on proximal (self-management behaviors) and distal (hemoglobin A1c and diabetes-specific health-related quality of life) outcomes in adolescents with type 1 diabetes.

Methods: A correlational, cross-sectional study was conducted to identify factors contributing to outcomes in adolescents with Type 1 diabetes and examine potential relationships between context, process, and outcome variables delineated in individual and family self-management theory. Participants were 103 adolescent-parent dyads (adolescents ages 12-17) with Type 1 diabetes from a Midwest, outpatient, diabetes clinic. The dyads completed a self-report survey including instruments intended to measure context, process, and outcome variables from individual and family self-management theory.

Results: Using hierarchical multiple regression, context (depressive symptoms) and process (communication) variables explained 37% of the variance in self-management behaviors. Regimen complexity-the only significant predictor-explained 11% of the variance in hemoglobin A1c. Neither process variables nor self-management behaviors were significant. For the diabetes-specific health-related quality of life outcome, context (regimen complexity and depressive symptoms) explained 26% of the variance at step 1; an additional 9% of the variance was explained when process (self-efficacy and communication) variables were added at step 2; and 52% of the variance was explained when self-management behaviors were added at Step 3. In the final model, three variables were significant predictors: depressive symptoms, self-efficacy, and self-management behaviors.

Conclusions: The individual and family self-management theory can serve as a cogent theory for understanding key concepts, processes, and outcomes essential to self-management in adolescents and families dealing with Type 1 diabetes mellitus.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1097/NNR.0000000000000180DOI Listing
May 2017

Risks and Protective Factors for Stress Self-Management in Parents of Children With Autism Spectrum Disorder: An Integrated Review of the Literature.

J Pediatr Nurs 2016 Nov - Dec;31(6):567-579. Epub 2016 Sep 13.

College of Nursing, University of Wisconsin-Milwaukee, Milwaukee, WI; Department of Nursing Research, Children's Hospital of Wisconsin, Box 1997, Milwaukee, WI.

Problem: Stress in parents of children with autism spectrum disorder (ASD) has been reported to be very high. However, little is known about what risk and protective factors influence parental stress self-management in this population. Accordingly, this manuscript is a synthesis of the risk and protective factors that impact self-management of stress in these parents. The concepts in the individual and family self-management theory context domain were used as a framework to guide data collection and analysis.

Eligibility Criteria: Searches were conducted using CINAHL, MedLine and PsychInfo. Studies were included if they addressed context factors in parents of children with ASD and were written in English.

Sample: Ninety-eight studies met review criteria.

Results: This review highlighted risk factors to parental stress self-management within the context of condition-specific factors, physical and social environment, and individual and family. The most concerning of these findings is that parents struggle accessing a diagnosis and services for their child and are frustrated with health care providers' knowledge of ASD and lack of communication.

Conclusions: The risks parents experience as they care for their child with ASD far outweigh the protective factors for self-management of parental stress.

Implications: Nurses who are aware of these issues can make important changes to their practice and have a significant impact on parental stress self-management and the care of children with ASD.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1016/j.pedn.2016.08.006DOI Listing
July 2017

Measurement in Family Nursing: Established Instruments and New Directions.

Authors:
Kathleen J Sawin

J Fam Nurs 2016 08;22(3):287-97

View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1177/1074840716656038DOI Listing
August 2016

Autism Spectrum Disorder and the Child's Weight-Related Behaviors: A Parents' Perspective.

J Pediatr Nurs 2016 Nov - Dec;31(6):598-607. Epub 2016 Jun 20.

University of Wisconsin - Milwaukee College of Nursing/Children's Hospital of Wisconsin, Milwaukee, WI.

To explore parent perspectives of how the attributes of their child's autism spectrum disorder(ASD) impact nutrition, physical activity, screen time behaviors and risk for obesity. Secondarily, we examined the parent's perception of the healthcare providers (HCP) influence on these weight-related behaviors.

Design And Method: We conducted and audio-recorded telephone interviews with parents of children with ASD (n=8) using a structured question guide. Data were transcribed and thematic analysis was conducted. Issues surrounding weight-related behaviors and parental strategies used were reported.

Results: Two overarching themes with eight subthemes emerged: (1) Challenges related to features of ASD (subthemes included fixation on food, sensory issues/rigidity, developmental factors, impaired social skills, and medication effects) and (2) Challenges related to the care of children with ASD (subthemes included lack of individualized care planning, picking your battles and the impact of ASD on family).

Conclusion: Strategies extracted from the parent narratives promoted both healthy and unhealthy weight-related behaviors. The key finding in this study is that some parents did not follow HCP guidance when they perceived that the HCP did not understand their particular situation.

Practice Implications: Implementation of healthy weight-related behaviors can be optimized when providers consider the child's challenging ASD behaviors, affirm the difficulties encountered by the family and provide guidance that builds on the individual child/family strengths.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1016/j.pedn.2016.05.006DOI Listing
July 2017

Mental Health Issues of Women After Release From Jail and Prison: A Systematic Review.

Issues Ment Health Nurs 2016 May 21;37(5):299-331. Epub 2016 Apr 21.

b Children's Hospital of Wisconsin , Milwaukee , Wisconsin , USA.

The aim of this review article is to gain an understanding of the mental health issues of women released from jail or prison. Thirty-six studies were synthesized using the biopsychosocial model. Results indicate that released women's mental health issues include psychiatric diagnoses, psychological trauma, substance use disorders; access to psychological medications and services; and motherhood challenges, support, access to basic needs, and criminalized behaviors. Nurses can promote released women's mental health through pre-release assessment and treatment of mental health issues and ensuring access to post-release resources.  Future research should examine released women's mental health experiences.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.3109/01612840.2016.1154629DOI Listing
May 2016

Communication During Palliative Care and End of Life: Perceptions of Experienced Pediatric Oncology Nurses.

Cancer Nurs 2017 Mar/Apr;40(2):E47-E57

Author Affiliations: American Family Children's Hospital, University of Wisconsin Hospital and Clinics, Madison (Dr Montgomery); College of Nursing, University of Wisconsin-Milwaukee (Dr Sawin); and Saint Louis University, School of Nursing, Missouri (Dr Hendricks-Ferguson).

Background: Communication between patients, families, and healthcare providers is a central component of end-of-life care. Nurse communication during palliative care (PC) and end of life (EOL) is a phenomenon with limited research. It is unclear how the level of nursing experience influences the perspectives of nurses communicating during EOL.

Objective: The aim of this study is to describe the commonalities of experienced nurses' perceptions of communicating during PC and EOL and perceptions of barriers and facilitators to effective communication.

Methods: This study was part of a larger multisite study that used a qualitative, empirical phenomenology design and represents focus group data gathered from pediatric oncology nurses with more than 5 years of experience or who were advanced practice nurses not involved in the direct evaluation of other nurses.

Results: Five core themes with corresponding themes and subthemes were identified. The core themes included (a) Evolution of PC/EOL, (b) Skill of Knowing, (c) Expanded Essence of Caring, (d) Experienced Nurse as Committed Advocate, and (e) Valuing Individual Response to Grief.

Conclusions: Findings reflect how the concept of experience transcended the 5 core themes and captured how experience provided nurses the know-how to fulfill the roles of communication, caring, and advocacy for children and families.

Implications For Practice: Enhancing nurse communication skills during EOL requires opportunities to gain experience coupled with clinical strategies, such as standardized curricula, simulation, competency-based orientation programs, mentorship, and peer support.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1097/NCC.0000000000000363DOI Listing
August 2017

Experiences of Pediatric Oncology Patients and Their Parents at End of Life: A Systematic Review.

J Pediatr Oncol Nurs 2016 Mar-Apr;33(2):85-104. Epub 2015 Jul 27.

Saint Louis University, St. Louis, MO, USA.

Improvement in pediatric palliative and end-of-life care has been identified as an ongoing research priority. The child and parent experience provides valuable information to guide how health care professionals can improve the transition to end of life and the care provided to children and families during the vulnerable period. The purpose of this systematic review was to describe the experience of pediatric oncology patients and their parents during end of life, and identify gaps to be addressed with interventions. A literature search was completed using multiple databases, including CINAHL, PubMed, and PsycInfo. A total of 43 articles were included in the review. The analysis of the evidence revealed 5 themes: symptom prevalence and symptom management, parent and child perspectives of care, patterns of care, decision making, and parent and child outcomes of care. Guidelines for quality end-of-life care are needed. More research is needed to address methodological gaps that include the pediatric patient and their sibling's experience.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1177/1043454215589715DOI Listing
November 2016

Factors associated with pressure ulcers in individuals with spina bifida.

Arch Phys Med Rehabil 2015 Aug 18;96(8):1435-1441.e1. Epub 2015 Mar 18.

Division of Human Development and Disability, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA.

Objective: To describe factors associated with pressure ulcers in individuals with spina bifida (SB) enrolled in the National Spina Bifida Patient Registry (NSBPR).

Design: Unbalanced longitudinal multicenter cohort study.

Setting: Nineteen SB clinics.

Participants: Individuals with SB (N=3153) enrolled in 19 clinic sites that participate in the NSBPR.

Interventions: Not applicable.

Main Outcome Measures: Pressure ulcer status (yes/no) at the annual visit between 2009 and 2012.

Results: Of 3153 total participants, 19% (n=603) reported ulcers at their most recent annual clinic visit. Seven factors-level of lesion, wheelchair use, urinary incontinence, shunt presence, above the knee orthopedic surgery, recent surgery, and male sex-were significantly associated with the presence of pressure ulcers. Of these factors, level of lesion, urinary incontinence, recent surgery, and male sex were included in the final logistic regression model. The 3 adjusting variables-SB type, SB clinic, and age group-were significant in all analyses (all P<.001).

Conclusions: By adjusting for SB type, SB clinic, and age group, we found that 7 factors-level of lesion, wheelchair use, urinary incontinence, shunt presence, above the knee orthopedic surgery, recent surgery, and male sex-were associated with pressure ulcers. Identifying key factors associated with the onset of pressure ulcers can be incorporated into clinical practice in ways that prevent and enhance treatment of pressure ulcers in the population with SB.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1016/j.apmr.2015.02.029DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4519375PMC
August 2015

Novice Nurses' Experiences With Palliative and End-of-Life Communication.

J Pediatr Oncol Nurs 2015 Jul-Aug;32(4):240-52. Epub 2015 Jan 2.

Indiana University, School of Nursing, Indianapolis, IN, USA.

Health care providers recognize that delivery of effective communication with family members of children with life-threatening illnesses is essential to palliative and end-of-life care (PC/EOL). Parents value the presence of nurses during PC/EOL of their dying child. It is vital that nurses, regardless of their years of work experience, are competent and feel comfortable engaging family members of dying children in PC/EOL discussions. This qualitative-descriptive study used focus groups to explore the PC/EOL communication perspectives of 14 novice pediatric oncology nurses (eg, with less than 1 year of experience). Audio-taped focus group discussions were reviewed to develop the following 6 theme categories: (a) Sacred Trust to Care for the Child and Family, (b) An Elephant in the Room, (c) Struggling with Emotional Unknowns, (d) Kaleidoscope of Death: Patterns and Complexity, (e) Training Wheels for Connectedness: Critical Mentors during PC/EOL of Children, and (f) Being Present with an Open Heart: Ways to Maintain Hope and Minimize Emotional Distress. To date, this is the first study to focus on PC/EOL communication perspectives of novice pediatric oncology nurses.
View Article and Find Full Text PDF

Download full-text PDF

Source
http://dx.doi.org/10.1177/1043454214555196DOI Listing
September 2016