This study aimed to evaluate effects of kangaroo care on pain relief in premature infants during painful procedures.
Design
A meta-analysis.
Methods
Eight databases (Cochrane Library, PubMed, Embase, Web of Science, China Biology Medicine [CBM], China Science and Technology Journal Database [CSTJ], China National Knowledge Infrastructure [CNKI], and WanFang Data) were systematically reviewed from inception to November 2021 for randomized controlled and crossover trials.
Results
Thirteen studies, including 2311 infants (kangaroo care: 1153, control: 1158) were analyzed. Kangaroo care had a moderate effect on pain relief during painful procedures in premature infants at a gestational age of 32–36 + 6 weeks but no effect at 28–31 + 6 weeks. Furthermore, 15 or 30 min of kangaroo care had a moderate effect and could markedly relieve pain at the instant of and 30/60 s after, had a small effect at 90 s after, and no effect at 120 s after the procedure.
Practice Implications
Kangaroo care may be an effective nonpharmacologic alternative therapy to relieve procedural pain in premature infants born at a gestational age of 32–36 + 6 weeks.
{"title":"Effects of kangaroo care on pain relief in premature infants during painful procedures: A meta-analysis","authors":"Fang Wang, Qing Zhang, Zhi Hong Ni, Hai Tao Lv","doi":"10.1111/jspn.12390","DOIUrl":"10.1111/jspn.12390","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> AIM</h3>\u0000 \u0000 <p>This study aimed to evaluate effects of kangaroo care on pain relief in premature infants during painful procedures.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Design</h3>\u0000 \u0000 <p>A meta-analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Eight databases (Cochrane Library, PubMed, Embase, Web of Science, China Biology Medicine [CBM], China Science and Technology Journal Database [CSTJ], China National Knowledge Infrastructure [CNKI], and WanFang Data) were systematically reviewed from inception to November 2021 for randomized controlled and crossover trials.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Thirteen studies, including 2311 infants (kangaroo care: 1153, control: 1158) were analyzed. Kangaroo care had a moderate effect on pain relief during painful procedures in premature infants at a gestational age of 32–36 + 6 weeks but no effect at 28–31 + 6 weeks. Furthermore, 15 or 30 min of kangaroo care had a moderate effect and could markedly relieve pain at the instant of and 30/60 s after, had a small effect at 90 s after, and no effect at 120 s after the procedure.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Practice Implications</h3>\u0000 \u0000 <p>Kangaroo care may be an effective nonpharmacologic alternative therapy to relieve procedural pain in premature infants born at a gestational age of 32–36 + 6 weeks.</p>\u0000 </section>\u0000 </div>","PeriodicalId":54900,"journal":{"name":"Journal for Specialists in Pediatric Nursing","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-07-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10395911","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Moon Fai Chan, Amal Mohammed Al-Dhawyani, Karima Al Hinai, Mohammed Al-Azri
Purpose
Few studies have sought to evaluate the risk burden of primary caregivers, particularly in Oman. This study aimed to explore whether different risk patterns of caregiver burden exist among the primary caregivers of Omani children with leukemia.
Design and Methods
A cross-sectional study was conducted between May and November 2020. A total of 101 primary caregivers of children with leukemia were recruited from a public hospital in Oman. The Caregiver Burden Inventory (CBI) was used to assess caregiver burden.
Results
A two-step cluster analysis indicated that the cohort was not homogeneous (silhouette value: 1.41). Caregivers in Cluster 1 (n = 42; 41.6%) were relatively older, less educated, and had a higher caregiving burden (mean CBI score: 37.7 ± 19.9). In contrast, caregivers in Cluster 2 (n = 59; 58.4%) were younger, more highly educated, and had a moderate caregiving burden (mean CBI score: 26.3 ± 13.6). As such, Clusters 1 and 2 were characterized as the “high-risk” and “moderate-risk” burden groups, respectively.
Practice Implications
This study highlights the need for a policy draft to target and reduce the caregiver burden in Oman, Nursing professionals should seek to develop and implement customized care depending on the caregiver risk burden, including additional financial, psychological, and physical support. They should seek to stratify caregivers by risk burden as some groups may require additional support. However, in light of recent precautionary measures due to the current pandemic situation, such services will have to be provided online or via telephone instead of in person for the foreseeable future.
{"title":"A cluster analysis to explore the burden of primary caregivers of children with cancer in Oman","authors":"Moon Fai Chan, Amal Mohammed Al-Dhawyani, Karima Al Hinai, Mohammed Al-Azri","doi":"10.1111/jspn.12389","DOIUrl":"10.1111/jspn.12389","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Purpose</h3>\u0000 \u0000 <p>Few studies have sought to evaluate the risk burden of primary caregivers, particularly in Oman. This study aimed to explore whether different risk patterns of caregiver burden exist among the primary caregivers of Omani children with leukemia.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Design and Methods</h3>\u0000 \u0000 <p>A cross-sectional study was conducted between May and November 2020. A total of 101 primary caregivers of children with leukemia were recruited from a public hospital in Oman. The Caregiver Burden Inventory (CBI) was used to assess caregiver burden.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>A two-step cluster analysis indicated that the cohort was not homogeneous (silhouette value: 1.41). Caregivers in Cluster 1 (<i>n</i> = 42; 41.6%) were relatively older, less educated, and had a higher caregiving burden (mean CBI score: 37.7 ± 19.9). In contrast, caregivers in Cluster 2 (<i>n</i> = 59; 58.4%) were younger, more highly educated, and had a moderate caregiving burden (mean CBI score: 26.3 ± 13.6). As such, Clusters 1 and 2 were characterized as the “high-risk” and “moderate-risk” burden groups, respectively.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Practice Implications</h3>\u0000 \u0000 <p>This study highlights the need for a policy draft to target and reduce the caregiver burden in Oman, Nursing professionals should seek to develop and implement customized care depending on the caregiver risk burden, including additional financial, psychological, and physical support. They should seek to stratify caregivers by risk burden as some groups may require additional support. However, in light of recent precautionary measures due to the current pandemic situation, such services will have to be provided online or via telephone instead of in person for the foreseeable future.</p>\u0000 </section>\u0000 </div>","PeriodicalId":54900,"journal":{"name":"Journal for Specialists in Pediatric Nursing","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-06-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40122493","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Karen J. Foli PhD, RN, FAAN, Brigit VanGraafeiland DNP, CRNP, CNE, FAAN, Julia A. Snethen PhD, RN, FAAN, Cindy Smith Greenberg DNSc, RN, CPNP-PC, FAAN
Purpose
Information about nontraditional (kinship, foster, and adoptive) families is typically scattered or overlooked both in nursing education and nursing practice settings. Using a nursing-centric, population-focused lens, the current state of nontraditional families in the United States is briefly described. An overview of the challenges and psychological dynamics involved when a nonbiological parent assumes the role of caregiver is provided.
Conclusion
Based on the 2010 Census findings and other indicators, we now understand that nontraditional families and their children make up a considerable portion of the population. Nurses, regardless of level of practice, have the potential to positively impact health outcomes of nontraditional parents and their children. Knowledge of the formation and needs of nontraditional families can inform, and improve, culturally safe, trauma-informed nursing care.
Practice implications
This discussion is a first step in appreciating the formation of nontraditional families and the importance of trauma-informed, unbiased, nonstereotypic discourse in nursing care. By describing the heterogeneity of how families are built through kinship care, foster placements, and adoptive homes, nurses’ assessments and interventions will be informed and through a lens of the high potential for past traumas. With this foundational knowledge, nurses interfacing with nontraditional families are better prepared to provide much needed support and relevant care for this unique population.
{"title":"Caring for nontraditional families: Kinship, foster, and adoptive","authors":"Karen J. Foli PhD, RN, FAAN, Brigit VanGraafeiland DNP, CRNP, CNE, FAAN, Julia A. Snethen PhD, RN, FAAN, Cindy Smith Greenberg DNSc, RN, CPNP-PC, FAAN","doi":"10.1111/jspn.12388","DOIUrl":"10.1111/jspn.12388","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Purpose</h3>\u0000 \u0000 <p>Information about nontraditional (kinship, foster, and adoptive) families is typically scattered or overlooked both in nursing education and nursing practice settings. Using a nursing-centric, population-focused lens, the current state of nontraditional families in the United States is briefly described. An overview of the challenges and psychological dynamics involved when a nonbiological parent assumes the role of caregiver is provided.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Based on the 2010 Census findings and other indicators, we now understand that nontraditional families and their children make up a considerable portion of the population. Nurses, regardless of level of practice, have the potential to positively impact health outcomes of nontraditional parents and their children. Knowledge of the formation and needs of nontraditional families can inform, and improve, culturally safe, trauma-informed nursing care.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Practice implications</h3>\u0000 \u0000 <p>This discussion is a first step in appreciating the formation of nontraditional families and the importance of trauma-informed, unbiased, nonstereotypic discourse in nursing care. By describing the heterogeneity of how families are built through kinship care, foster placements, and adoptive homes, nurses’ assessments and interventions will be informed and through a lens of the high potential for past traumas. With this foundational knowledge, nurses interfacing with nontraditional families are better prepared to provide much needed support and relevant care for this unique population.</p>\u0000 </section>\u0000 </div>","PeriodicalId":54900,"journal":{"name":"Journal for Specialists in Pediatric Nursing","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-06-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"123891395","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Advances in health care have led to an increase in infants and children being discharged home with increasingly complex conditions. Children with medical complexity require care from many physicians and specialties to thrive in their home environment. While some care coordination programs are in place, these programs are often dependent upon the child living within the geographic area of a major healthcare system. Additionally, children with medical complexity often need specialized care from providers outside the participating healthcare system, placing the onus of care coordination on the child's family. This literature review aimed to examine care coordination programs for children with medical complexity and what tools have been created to empower the child's family in the process.
Method
Qualitative and quantitative research studies published from 2015 to 2021 found in Academic Search Complete, Cumulative Index to Nursing and Allied Health Literature, and Medline that included a review of a care coordination program for children with medical complexity were included. Nonresearch articles, articles written about adults, or written in languages other than English were excluded. The Johns Hopkins Nursing Evidence-Based Practice grading scale was used to appraise the evidence. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) checklist was utilized to structure this review to deter the risk of bias. A qualitative synthesis was used to analyze and present the results.
Conclusions
There are varying strategies used to facilitate care coordination of children with medical complexity. Effects of care coordination on the child are inconsistent; however, the child's caregiver considers high-quality care coordination to improve quality of life. There are limited tools available for caregivers of children with medical complexity to coordinate their child's care across healthcare systems. Generalizability is a concern due to the small sample sizes of studies and underrepresentation of non-English speaking families in the research. Risk of bias is possible due to highly engaged families willing to participate in the selected research studies.
Practice Implications
There is an opportunity to develop further and study care coordination tools to empower the caregivers of children with medical complexity.
{"title":"Care coordination for children with medical complexity and caregiver empowerment in the process: A literature review","authors":"Julie Van Orne MSN, RN, CPN, CNL","doi":"10.1111/jspn.12387","DOIUrl":"10.1111/jspn.12387","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Purpose</h3>\u0000 \u0000 <p>Advances in health care have led to an increase in infants and children being discharged home with increasingly complex conditions. Children with medical complexity require care from many physicians and specialties to thrive in their home environment. While some care coordination programs are in place, these programs are often dependent upon the child living within the geographic area of a major healthcare system. Additionally, children with medical complexity often need specialized care from providers outside the participating healthcare system, placing the onus of care coordination on the child's family. This literature review aimed to examine care coordination programs for children with medical complexity and what tools have been created to empower the child's family in the process.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Qualitative and quantitative research studies published from 2015 to 2021 found in Academic Search Complete, Cumulative Index to Nursing and Allied Health Literature, and Medline that included a review of a care coordination program for children with medical complexity were included. Nonresearch articles, articles written about adults, or written in languages other than English were excluded. The Johns Hopkins Nursing Evidence-Based Practice grading scale was used to appraise the evidence. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) checklist was utilized to structure this review to deter the risk of bias. A qualitative synthesis was used to analyze and present the results.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>There are varying strategies used to facilitate care coordination of children with medical complexity. Effects of care coordination on the child are inconsistent; however, the child's caregiver considers high-quality care coordination to improve quality of life. There are limited tools available for caregivers of children with medical complexity to coordinate their child's care across healthcare systems. Generalizability is a concern due to the small sample sizes of studies and underrepresentation of non-English speaking families in the research. Risk of bias is possible due to highly engaged families willing to participate in the selected research studies.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Practice Implications</h3>\u0000 \u0000 <p>There is an opportunity to develop further and study care coordination tools to empower the caregivers of children with medical complexity.</p>\u0000 </section>\u0000 </div>","PeriodicalId":54900,"journal":{"name":"Journal for Specialists in Pediatric Nursing","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-06-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"123843449","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Hasan Alelayan RN, MSN, Lizhu Liang RN, BSN, Rui Ye RN, BSN, Nasser Aldosari RN, MSN, Xiaoyan Liao RN, PhD
Purpose
To develop a simplified Chinese version of the DISABKIDS chronic generic module-37 (DCGM-37), and to test the translated measures in children with cancer by employing a cognitive interviewing technique.
Design and Methods
The English version of DCGM-37 was translated forward and backward into simplified Chinese by bilingual translators, following the guidelines from its copyright holders, which also involved a cultural adaptation component. Twelve Chinese children aged 8–18 years and eight parents were cognitively interviewed.
Results
The findings support the relevance, comprehensibility, and efficacy of the Chinese version. Consideration was given, and improvements were made, to the language, cultural concerns, and content, which improved functionality and increased validation. The patients/caregivers understood the instructions, questions, and answer choices. Some revisions, however, were made to address patient/caregiver feedback obtained through cognitive interviews. Conceptually and semantically, the simplified Chinese version of the DCGM-37 version was identical to the original. Conclusions The simplified Chinese version of the DCGM-37 was semantically and conceptually equivalent to the English version. Chinese children aged 8 to 18 years were able to comprehend this instrument.
Conclusions
The simplified Chinese version of the DCGM-37 was semantically and conceptually equivalent to the English version. Chinese children aged 8 to 18 years were able to comprehend this instrument and express their experiences and feelings about their life.
Practice Implications
The simplified Chinese version of the DCGM-37 was translated, and cross-cultural adaptation and validation were performed. Chinese children found the tool easy to use and were able to express their experiences and feelings about their health-related quality of life.
{"title":"Translation and linguistic validation of the DISABKIDS chronic generic module into simplified Chinese (DCGM-37) for use among children with cancer","authors":"Hasan Alelayan RN, MSN, Lizhu Liang RN, BSN, Rui Ye RN, BSN, Nasser Aldosari RN, MSN, Xiaoyan Liao RN, PhD","doi":"10.1111/jspn.12374","DOIUrl":"10.1111/jspn.12374","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Purpose</h3>\u0000 \u0000 <p>To develop a simplified Chinese version of the DISABKIDS chronic generic module-37 (DCGM-37), and to test the translated measures in children with cancer by employing a cognitive interviewing technique.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Design and Methods</h3>\u0000 \u0000 <p>The English version of DCGM-37 was translated forward and backward into simplified Chinese by bilingual translators, following the guidelines from its copyright holders, which also involved a cultural adaptation component. Twelve Chinese children aged 8–18 years and eight parents were cognitively interviewed.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The findings support the relevance, comprehensibility, and efficacy of the Chinese version. Consideration was given, and improvements were made, to the language, cultural concerns, and content, which improved functionality and increased validation. The patients/caregivers understood the instructions, questions, and answer choices. Some revisions, however, were made to address patient/caregiver feedback obtained through cognitive interviews. Conceptually and semantically, the simplified Chinese version of the DCGM-37 version was identical to the original. Conclusions The simplified Chinese version of the DCGM-37 was semantically and conceptually equivalent to the English version. Chinese children aged 8 to 18 years were able to comprehend this instrument.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The simplified Chinese version of the DCGM-37 was semantically and conceptually equivalent to the English version. Chinese children aged 8 to 18 years were able to comprehend this instrument and express their experiences and feelings about their life.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Practice Implications</h3>\u0000 \u0000 <p>The simplified Chinese version of the DCGM-37 was translated, and cross-cultural adaptation and validation were performed. Chinese children found the tool easy to use and were able to express their experiences and feelings about their health-related quality of life.</p>\u0000 </section>\u0000 </div>","PeriodicalId":54900,"journal":{"name":"Journal for Specialists in Pediatric Nursing","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-04-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"133052944","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Cecily L. Betz PhD, RN, FAAN, Jennifer E. Mannino PhD, Jennifer A. Disabato DNP, CPNP-PC, Victoria Marner MSN, BA, RN-BC
Purpose
Nurses have important roles as members of the healthcare transition (HCT) planning interdisciplinary team. Nursing's scope of practice and framework of care brings a distinctive and complementary approach to this expanding field in pediatric care. It is therefore relevant to better understand the extent to which pediatric nurses are involved with the provision of HCT services and model development.
Design and Methods
This was a qualitative analysis of a national survey of pediatric nurses. A thematic iterative process was used to code data. Three coders separately analyzed responses and then met to compare and discuss until a final list of codes was achieved. The codes were further analyzed until themes and subthemes emerged. Throughout the process, disagreements were discussed and resolved until consensus was achieved.
Results
A sample of 1814 pediatric nurses and nurse practitioners from two US professional organizations participated in this national survey to gather data on their involvement in HCT planning. This survey contained 17 items, one of which was an open-ended question stating: Is there anything else you would like to share about your role with the population of transitioning youth and young adults with chronic illness and/or disability? The analysis of responses provided by 154 nurses is presented. Initial coding resulted in 11 categories of data. Four major themes, including four subthemes, emerged from the analysis of responses: Support for the need for transition (subtheme: Nursing involvement); Guidance needed for professional practice (subtheme: Types of guidelines and training); Lack of service linkages to adult providers; and Difficulty letting go (two subthemes: Pediatric providers; Parents).
Practice Implications
These findings indicated strong support for the need of HCT services and the importance of nursing involvement. However, challenges to HCT implementation were identified that include systemic, psychosocial, and educational barriers. As this field of practice and research continues to grow, it is important that pediatric nurses recognize the opportunities to have a clinical voice to develop nurse-led HCT services and programs.
{"title":"Health care transition planning: A potpourri of perspectives from nurses","authors":"Cecily L. Betz PhD, RN, FAAN, Jennifer E. Mannino PhD, Jennifer A. Disabato DNP, CPNP-PC, Victoria Marner MSN, BA, RN-BC","doi":"10.1111/jspn.12373","DOIUrl":"10.1111/jspn.12373","url":null,"abstract":"<div>\u0000 <section>\u0000 \u0000 <h3> Purpose</h3>\u0000 \u0000 <p>Nurses have important roles as members of the healthcare transition (HCT) planning interdisciplinary team. Nursing's scope of practice and framework of care brings a distinctive and complementary approach to this expanding field in pediatric care. It is therefore relevant to better understand the extent to which pediatric nurses are involved with the provision of HCT services and model development.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Design and Methods</h3>\u0000 \u0000 <p>This was a qualitative analysis of a national survey of pediatric nurses. A thematic iterative process was used to code data. Three coders separately analyzed responses and then met to compare and discuss until a final list of codes was achieved. The codes were further analyzed until themes and subthemes emerged. Throughout the process, disagreements were discussed and resolved until consensus was achieved.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>A sample of 1814 pediatric nurses and nurse practitioners from two US professional organizations participated in this national survey to gather data on their involvement in HCT planning. This survey contained 17 items, one of which was an open-ended question stating: Is there anything else you would like to share about your role with the population of transitioning youth and young adults with chronic illness and/or disability? The analysis of responses provided by 154 nurses is presented. Initial coding resulted in 11 categories of data. Four major themes, including four subthemes, emerged from the analysis of responses: Support for the need for transition (subtheme: Nursing involvement); Guidance needed for professional practice (subtheme: Types of guidelines and training); Lack of service linkages to adult providers; and Difficulty letting go (two subthemes: Pediatric providers; Parents).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Practice Implications</h3>\u0000 \u0000 <p>These findings indicated strong support for the need of HCT services and the importance of nursing involvement. However, challenges to HCT implementation were identified that include systemic, psychosocial, and educational barriers. As this field of practice and research continues to grow, it is important that pediatric nurses recognize the opportunities to have a clinical voice to develop nurse-led HCT services and programs.</p>\u0000 </section>\u0000 </div>","PeriodicalId":54900,"journal":{"name":"Journal for Specialists in Pediatric Nursing","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-04-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"132085360","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Infants with single ventricle physiology experience numerous vulnerable transitions, and the interstage period for shunt-dependent children represents the time of highest risk for morbidity and mortality. Data exchange, physiological monitoring, and communication between clinicians and caregivers through interstage home monitoring are critical. The purpose of this study is to report on the acceptability of a technology-enhanced home monitoring mobile application for interstage family management of children with single ventricle physiology.
Design and Methods
This study employed a qualitative descriptive study design and recruited caregivers that were part of a broader quality improvement project where they were beta users of a mobile health application specifically developed for the interstage home monitoring time period.
Results
Eleven caregivers were enrolled in this study that was a part of the early phases of beta testing the mobile application from a human-centered design perspective. In general, the participants had a favorable sentiment toward the technology-integrated family management aspects that the mobile application allowed for during the interstage process. The acceptability findings can be organized through the following themes: time needed for mobile application, family as integrated members of care team, connectedness and confidence, and resolving technical issues.
Conclusions
Evaluation of the feasibility and acceptability of this technology from the perspective of family/caregivers is a critical component of human-centered design. The integration of technology-facilitated communication shows immense promise for patient populations undergoing vulnerable transitions in care. Future study is needed to determine the role mobile applications have in improved clinical outcomes, enhanced provider clinical-decision support, and family engagement in care.
{"title":"Acceptability of an interstage home monitoring mobile application for caregivers of children with single ventricle physiology: Toward technology-integrated family management","authors":"Lisa Blair PhD, RN, Jeffrey Vergales MD, Leslie Peregoy MSN, PNP-BC, Hallie Seegal MSN, RN, Jessica Keim-Malpass PhD, RN","doi":"10.1111/jspn.12372","DOIUrl":"10.1111/jspn.12372","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Purpose</h3>\u0000 \u0000 <p>Infants with single ventricle physiology experience numerous vulnerable transitions, and the interstage period for shunt-dependent children represents the time of highest risk for morbidity and mortality. Data exchange, physiological monitoring, and communication between clinicians and caregivers through interstage home monitoring are critical. The purpose of this study is to report on the acceptability of a technology-enhanced home monitoring mobile application for interstage family management of children with single ventricle physiology.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Design and Methods</h3>\u0000 \u0000 <p>This study employed a qualitative descriptive study design and recruited caregivers that were part of a broader quality improvement project where they were beta users of a mobile health application specifically developed for the interstage home monitoring time period.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Eleven caregivers were enrolled in this study that was a part of the early phases of beta testing the mobile application from a human-centered design perspective. In general, the participants had a favorable sentiment toward the technology-integrated family management aspects that the mobile application allowed for during the interstage process. The acceptability findings can be organized through the following themes: time needed for mobile application, family as integrated members of care team, connectedness and confidence, and resolving technical issues.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Evaluation of the feasibility and acceptability of this technology from the perspective of family/caregivers is a critical component of human-centered design. The integration of technology-facilitated communication shows immense promise for patient populations undergoing vulnerable transitions in care. Future study is needed to determine the role mobile applications have in improved clinical outcomes, enhanced provider clinical-decision support, and family engagement in care.</p>\u0000 </section>\u0000 </div>","PeriodicalId":54900,"journal":{"name":"Journal for Specialists in Pediatric Nursing","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"129808450","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Angelica Blais MSc, Patricia E. Longmuir PhD, Raquel Messy, Roland Messy, Lillian Lai MD
Purpose
Summer camps for children living with heart disease can have a profound impact on well-being. However, specialized camps often require extensive resources (i.e., 24-h medical staff supervision) and may be located in far remote settings. Integrating children with heart disease into mainstream day camps may address these barriers. The purpose of this study is to describe the experience of attending an integrated day camp from the perspectives of children with heart disease and their parents.
Design and Methods
This study used a qualitative descriptive design. Among 25 eligible families, 9 participated in interviews which were held 3 months to 2 years after attending an integrated camp (mean age of children at camp was 7.3 ± 2.25 years). Interviews were audio-recorded and transcribed verbatim for an inductive thematic analysis.
Results
Many parents chose the integrated camp as their child's first summer camp experience, citing trust in the local division of Cardiology's approval of the camp activities as an important reason for enrolling. All participants agreed the integrated camp was a valued opportunity which should continue, although not all described positive camp experiences. Participants' descriptions of the integrated camp were organized into two main themes: 1) overall expectations of the camp and 2) important opportunities afforded by the camp experience. Partaking in a typical camp experience, connecting to local children with heart disease, adequate safety precautions and activity adaptations were specific expectations held by participants. Important opportunities included greater independence and confidence, navigating disclosure of their diagnosis to peers on their own terms, and more diverse social connections. Improving communication with parents to ensure expectations match camp objectives would have enhanced the experience.
Practice Implications
Practitioners looking for an alternative to specialized camps for their patients with heart disease may use these results to guide the design and promotion of an integrated camp.
{"title":"“Like Any Other Camp”: Experiences and lessons learned from an integrated day camp for children with heart disease","authors":"Angelica Blais MSc, Patricia E. Longmuir PhD, Raquel Messy, Roland Messy, Lillian Lai MD","doi":"10.1111/jspn.12371","DOIUrl":"10.1111/jspn.12371","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Purpose</h3>\u0000 \u0000 <p>Summer camps for children living with heart disease can have a profound impact on well-being. However, specialized camps often require extensive resources (i.e., 24-h medical staff supervision) and may be located in far remote settings. Integrating children with heart disease into mainstream day camps may address these barriers. The purpose of this study is to describe the experience of attending an integrated day camp from the perspectives of children with heart disease and their parents.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Design and Methods</h3>\u0000 \u0000 <p>This study used a qualitative descriptive design. Among 25 eligible families, 9 participated in interviews which were held 3 months to 2 years after attending an integrated camp (mean age of children at camp was 7.3 ± 2.25 years). Interviews were audio-recorded and transcribed verbatim for an inductive thematic analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Many parents chose the integrated camp as their child's first summer camp experience, citing trust in the local division of Cardiology's approval of the camp activities as an important reason for enrolling. All participants agreed the integrated camp was a valued opportunity which should continue, although not all described positive camp experiences. Participants' descriptions of the integrated camp were organized into two main themes: 1) overall expectations of the camp and 2) important opportunities afforded by the camp experience. Partaking in a typical camp experience, connecting to local children with heart disease, adequate safety precautions and activity adaptations were specific expectations held by participants. Important opportunities included greater independence and confidence, navigating disclosure of their diagnosis to peers on their own terms, and more diverse social connections. Improving communication with parents to ensure expectations match camp objectives would have enhanced the experience.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Practice Implications</h3>\u0000 \u0000 <p>Practitioners looking for an alternative to specialized camps for their patients with heart disease may use these results to guide the design and promotion of an integrated camp.</p>\u0000 </section>\u0000 </div>","PeriodicalId":54900,"journal":{"name":"Journal for Specialists in Pediatric Nursing","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-03-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"127987735","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Anna S. Zerpe RN, MSc, Daniel Nowinski MD, PhD, Mia Ramklint MD, PhD, Caisa Öster MSc, PhD
Purpose
Parents of children scheduled for surgery often experience emotional distress and anxiety. This study aimed to explore parents' experiences of hospital care after their child's craniosynostosis surgery and their perception of support during the year after discharge.
Design and Methods
A purposive sample of 19 parents of 12 children with nonsyndromic craniosynostosis, who had undergone surgery, was recruited from one of two national centers in Sweden. An interview was conducted ~1 year after the child's surgery, from September 2017 to August 2018. The interviews followed a semistructured interview guide, were recorded, transcribed verbatim, and analyzed using inductive content analysis.
Results
The analysis yielded six categories with subcategories as follows: (1) cared for and confident: the hospital staff was perceived as kind, professional, and reliable. (2) Alone and abandoned: sometimes, parents found it hard to initiate contact with professionals during hospitalization and after discharge. (3) The importance of information: thorough information was perceived as essential and the need for information varied during postsurgery period. (4) Feelings of worry: some parents remained worried about risks during recovery and were concerned about comorbidities and development. (5) Alright after all: parents felt that the worst part had been before surgery. (6) The need for support: parents were generally satisfied with the support offered and they often received support from family and friends, or other parents through social media/online forums.
Practice Implications
Healthcare professionals must be responsive to what support parents need at different stages in the care process and be aware that parents sometimes hesitate to initiate contact and ask for help and support. Support from healthcare professionals to everyone in the follow-up program, as a default, might be more accessible or acceptable for some parents. Providing online support from professionals should be considered and caregivers could also facilitate peer support among parents, either face-to-face or online.
{"title":"“When the surgery was over, I felt like the worst part had passed”: experiences of parents of children with craniosynostosis","authors":"Anna S. Zerpe RN, MSc, Daniel Nowinski MD, PhD, Mia Ramklint MD, PhD, Caisa Öster MSc, PhD","doi":"10.1111/jspn.12370","DOIUrl":"10.1111/jspn.12370","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Purpose</h3>\u0000 \u0000 <p>Parents of children scheduled for surgery often experience emotional distress and anxiety. This study aimed to explore parents' experiences of hospital care after their child's craniosynostosis surgery and their perception of support during the year after discharge.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Design and Methods</h3>\u0000 \u0000 <p>A purposive sample of 19 parents of 12 children with nonsyndromic craniosynostosis, who had undergone surgery, was recruited from one of two national centers in Sweden. An interview was conducted ~1 year after the child's surgery, from September 2017 to August 2018. The interviews followed a semistructured interview guide, were recorded, transcribed verbatim, and analyzed using inductive content analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The analysis yielded six categories with subcategories as follows: (1) cared for and confident: the hospital staff was perceived as kind, professional, and reliable. (2) Alone and abandoned: sometimes, parents found it hard to initiate contact with professionals during hospitalization and after discharge. (3) The importance of information: thorough information was perceived as essential and the need for information varied during postsurgery period. (4) Feelings of worry: some parents remained worried about risks during recovery and were concerned about comorbidities and development. (5) Alright after all: parents felt that the worst part had been before surgery. (6) The need for support: parents were generally satisfied with the support offered and they often received support from family and friends, or other parents through social media/online forums.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Practice Implications</h3>\u0000 \u0000 <p>Healthcare professionals must be responsive to what support parents need at different stages in the care process and be aware that parents sometimes hesitate to initiate contact and ask for help and support. Support from healthcare professionals to everyone in the follow-up program, as a default, might be more accessible or acceptable for some parents. Providing online support from professionals should be considered and caregivers could also facilitate peer support among parents, either face-to-face or online.</p>\u0000 </section>\u0000 </div>","PeriodicalId":54900,"journal":{"name":"Journal for Specialists in Pediatric Nursing","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-03-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jspn.12370","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49256162","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Suzanne Sheppard-Law BN, MPH (Research), PhD, Frances Brogan BN, MN, Frances Usherwood BN, Paul Hunstead BN, MN, Danielle-Ritz Shala BSN, MSc Health Data Science, MACN
Purpose
This study aimed to validate and to determine the individual characteristics and demographic factors associated with parents’ knowledge of hospital-based pediatric falls and to identify parent populations more likely to report low levels of falls-related knowledge.
Design
Validation of a questionnaire and a cross-sectional survey design.
Methods
Parents (n = 200) of hospitalized children admitted to a tertiary specialist pediatric hospital in Australia completed an online questionnaire. Parents were asked to rate their hospital-based falls knowledge using a Likert scale (1–5). The questionnaire was administered to parents across six hospital wards, 1 day a week, from May to August 2019. Validation of the questionnaire involved factor analyses and reliability tests. Finally, descriptive analysis measured parents' knowledge, and a multivariate logistic regression analysis reported factors associated with parents’ falls knowledge. All data were analyzed in Statistical Package for the Social Sciences (V27). Ethical approval was received for all stages.
Results
The final version of the parent knowledge of falls (PKOF) questionnaire consisted of 23 questions across five domains (Cronbach α = .929–.70). Parents’ knowledge of hospital-based falls ranged from 2.5 to 4.5, while knowledge that children may fall during parental presence rated the lowest score. Knowledge of inpatient falls was higher if their child had a high risk of falls (odds ratio [OR]: 2.1, p = .04) and they were Australian-born parents (OR: 1.9, p = .05).
Practice Implications
The PKOF questionnaire is an evidence-based instrument developed for a pediatric hospital setting. Findings highlight knowledge gaps and parent groups with the highest risk of having inadequate hospital-based falls knowledge. The questionnaire enables pediatric nurses and educators to measure parents' knowledge of hospital-based falls accurately and consistently, and so to identify gaps and, subsequently, develop, implement, and evaluate falls education using an evidence-based approach.
目的:本研究旨在验证和确定与父母对医院儿童跌倒知识相关的个体特征和人口统计学因素，并确定更有可能报告低水平跌倒相关知识的父母群体。设计问卷和横断面调查设计的验证。方法澳大利亚某三级专科儿科医院住院患儿家长(200名)填写在线问卷。家长被要求使用李克特量表(1-5)对他们在医院的跌倒知识进行评分。该问卷于2019年5月至8月期间在6个医院病房的父母中进行，每周1天。问卷的验证包括因子分析和信度检验。最后，描述性分析测量了父母的知识，多变量逻辑回归分析报告了与父母跌倒知识相关的因素。所有数据均在Statistical Package for the Social Sciences (V27)中进行分析。所有阶段均获得了伦理批准。结果最终的父母跌倒知识(PKOF)问卷包括5个领域的23个问题(Cronbach α = 0.929 - 0.70)。父母对医院跌倒的知识在2.5到4.5之间，而对孩子在父母在场时可能跌倒的知识得分最低。如果他们的孩子有较高的跌倒风险(比值比[OR]: 2.1, p = .04)，并且他们是澳大利亚出生的父母(比值比:1.9,p = .05)，那么他们对住院病人跌倒的了解程度更高。实践意义PKOF问卷是一个基于证据的工具开发儿科医院设置。调查结果强调了知识差距和家长群体最容易缺乏基于医院的跌倒知识。该问卷使儿科护士和教育工作者能够准确和一致地衡量家长对医院跌倒的了解，从而确定差距，并随后使用循证方法制定、实施和评估跌倒教育。
{"title":"Predictors of parent's knowledge of hospital-based pediatric falls","authors":"Suzanne Sheppard-Law BN, MPH (Research), PhD, Frances Brogan BN, MN, Frances Usherwood BN, Paul Hunstead BN, MN, Danielle-Ritz Shala BSN, MSc Health Data Science, MACN","doi":"10.1111/jspn.12368","DOIUrl":"10.1111/jspn.12368","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Purpose</h3>\u0000 \u0000 <p>This study aimed to validate and to determine the individual characteristics and demographic factors associated with parents’ knowledge of hospital-based pediatric falls and to identify parent populations more likely to report low levels of falls-related knowledge.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Design</h3>\u0000 \u0000 <p>Validation of a questionnaire and a cross-sectional survey design.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Parents (<i>n</i> = 200) of hospitalized children admitted to a tertiary specialist pediatric hospital in Australia completed an online questionnaire. Parents were asked to rate their hospital-based falls knowledge using a Likert scale (1–5). The questionnaire was administered to parents across six hospital wards, 1 day a week, from May to August 2019. Validation of the questionnaire involved factor analyses and reliability tests. Finally, descriptive analysis measured parents' knowledge, and a multivariate logistic regression analysis reported factors associated with parents’ falls knowledge. All data were analyzed in Statistical Package for the Social Sciences (V27). Ethical approval was received for all stages.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The final version of the parent knowledge of falls (PKOF) questionnaire consisted of 23 questions across five domains (Cronbach <i>α</i> = .929–.70). Parents’ knowledge of hospital-based falls ranged from 2.5 to 4.5, while knowledge that children may fall during parental presence rated the lowest score. Knowledge of inpatient falls was higher if their child had a high risk of falls (odds ratio [OR]: 2.1, <i>p</i> = .04) and they were Australian-born parents (OR: 1.9, <i>p</i> = .05).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Practice Implications</h3>\u0000 \u0000 <p>The PKOF questionnaire is an evidence-based instrument developed for a pediatric hospital setting. Findings highlight knowledge gaps and parent groups with the highest risk of having inadequate hospital-based falls knowledge. The questionnaire enables pediatric nurses and educators to measure parents' knowledge of hospital-based falls accurately and consistently, and so to identify gaps and, subsequently, develop, implement, and evaluate falls education using an evidence-based approach.</p>\u0000 </section>\u0000 </div>","PeriodicalId":54900,"journal":{"name":"Journal for Specialists in Pediatric Nursing","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-02-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39767814","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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