Pub Date : 2020-01-01Epub Date: 2019-07-13DOI: 10.1177/1043454219858610
Elizabeth A Duffy, Tara Adams, Clifton P Thornton, Beth Fisher, Jennifer Misasi, Sally McCollum
Repeated invasive and painful procedures are often necessary components of pediatric cancer treatment. Adequate pain control during procedures is essential; however, procedure-related pain may be underestimated and undertreated. Currently, there is not a standard approach for the appropriate level of sedation to manage procedure-related pain in children with cancer. A team was assembled to review the evidence and develop recommendations to determine the appropriate level of sedation necessary for pain control in patients undergoing pediatric oncology procedures. After a systematic search of the literature, 15 research-based articles were synthesized and critically appraised. A recommendation was made related to the level of sedation utilized for bone marrow aspirates and bone marrow biopsies. There is a need for further research related to the necessary level of sedation for patients undergoing pediatric oncology procedures.
{"title":"Evidence-Based Recommendations for the Appropriate Level of Sedation to Manage Pain in Pediatric Oncology Patients Requiring Procedures: A Systematic Review From the Children's Oncology Group [Formula: see text].","authors":"Elizabeth A Duffy, Tara Adams, Clifton P Thornton, Beth Fisher, Jennifer Misasi, Sally McCollum","doi":"10.1177/1043454219858610","DOIUrl":"10.1177/1043454219858610","url":null,"abstract":"<p><p>Repeated invasive and painful procedures are often necessary components of pediatric cancer treatment. Adequate pain control during procedures is essential; however, procedure-related pain may be underestimated and undertreated. Currently, there is not a standard approach for the appropriate level of sedation to manage procedure-related pain in children with cancer. A team was assembled to review the evidence and develop recommendations to determine the appropriate level of sedation necessary for pain control in patients undergoing pediatric oncology procedures. After a systematic search of the literature, 15 research-based articles were synthesized and critically appraised. A recommendation was made related to the level of sedation utilized for bone marrow aspirates and bone marrow biopsies. There is a need for further research related to the necessary level of sedation for patients undergoing pediatric oncology procedures.</p>","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":"37 1","pages":"6-20"},"PeriodicalIF":1.7,"publicationDate":"2020-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1043454219858610","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"37157383","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2020-01-01DOI: 10.1177/1043454219874007
K. Enskär, Laura Darcy, M. Björk, Susanne Knutsson, K. Huus
Children with cancer require repeated hospitalizations and the family’s everyday life and routines undergo change. Concrete descriptions of how nurses act when caring for children with cancer throughout the various phases of care and treatment are sparsely highlighted in the literature. The aim of this study was to describe young children with cancer and their parents’ experiences of nurses’ caring practices over a 3-year period, from diagnosis to follow-up. This study is based on semistructured interviews with 25 children newly diagnosed with cancer, aged 1 to 6 years, and their parents, connected to a pediatric oncology unit in Sweden. Child and parent data were analyzed with a deductive content analysis using Swanson’s theory of caring. The result shows that nurse care practices directed toward young children with cancer and their parents are to some extent similar across a 3-year period from diagnosis to follow-up but also differ in some ways. Nurses’ caring practices aim to support children and parents in the transition to a “new normal.” Child- and family-friendly care processes include the following: creating hope and a trustful relationship, asking rather than assuming, providing knowledge and information, performing tasks skillfully, displaying an interest in the child’s and parents’ life outside the hospital, and helping the family to trust in the future and other health care providers. Based on these results, we recommend the development of a standardized and structured nursing care plan or clinical guideline with detailed information on how to carry out clinical nurse care practices in the different phases.
{"title":"Experiences of Young Children With Cancer and Their Parents With Nurses’ Caring Practices During the Cancer Trajectory","authors":"K. Enskär, Laura Darcy, M. Björk, Susanne Knutsson, K. Huus","doi":"10.1177/1043454219874007","DOIUrl":"https://doi.org/10.1177/1043454219874007","url":null,"abstract":"Children with cancer require repeated hospitalizations and the family’s everyday life and routines undergo change. Concrete descriptions of how nurses act when caring for children with cancer throughout the various phases of care and treatment are sparsely highlighted in the literature. The aim of this study was to describe young children with cancer and their parents’ experiences of nurses’ caring practices over a 3-year period, from diagnosis to follow-up. This study is based on semistructured interviews with 25 children newly diagnosed with cancer, aged 1 to 6 years, and their parents, connected to a pediatric oncology unit in Sweden. Child and parent data were analyzed with a deductive content analysis using Swanson’s theory of caring. The result shows that nurse care practices directed toward young children with cancer and their parents are to some extent similar across a 3-year period from diagnosis to follow-up but also differ in some ways. Nurses’ caring practices aim to support children and parents in the transition to a “new normal.” Child- and family-friendly care processes include the following: creating hope and a trustful relationship, asking rather than assuming, providing knowledge and information, performing tasks skillfully, displaying an interest in the child’s and parents’ life outside the hospital, and helping the family to trust in the future and other health care providers. Based on these results, we recommend the development of a standardized and structured nursing care plan or clinical guideline with detailed information on how to carry out clinical nurse care practices in the different phases.","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":"37 1","pages":"21 - 34"},"PeriodicalIF":1.7,"publicationDate":"2020-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1043454219874007","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44373158","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2020-01-01DOI: 10.1177/1043454219871081
Sara Shinnick
Objective: To assess the role of the pediatric nurse/advanced practice provider in patient education and follow-up of patients receiving oral anticancer therapy. Methods: Association of Pediatric Hematology/Oncology Nurses members were invited to participate in a survey that focused on the nurses’ roles in patient education of patients taking oral oncolytic agents. Data were collected via a 16-item questionnaire. Respondents included 197 nurses and advanced practice providers. Content analysis techniques were used to describe the qualitative data while Fisher’s exact test and chi-square test were used in the quantitative statistical analysis. Results: Seventy-one percent of respondents reported some type of involvement in patient education. Knowledge as well as comfort level improved as years of oncology nursing experience increased. Generally, policies and procedures are in place; however, nurses noted there is a need for improved oral oncolytic guidelines. Nurses also reported a need for improved and updated educational resources. Conclusion: While the development of oral oncolytic agents continues to rise, findings show a need to develop evidence-based guidelines for nurses, which include management of oral oncolytic dosing, adverse events, and safety issues.
{"title":"Assessment of the Role of the Pediatric Nurse in Patient Education and Follow-up of Patients Receiving Oral Anticancer Treatment","authors":"Sara Shinnick","doi":"10.1177/1043454219871081","DOIUrl":"https://doi.org/10.1177/1043454219871081","url":null,"abstract":"Objective: To assess the role of the pediatric nurse/advanced practice provider in patient education and follow-up of patients receiving oral anticancer therapy. Methods: Association of Pediatric Hematology/Oncology Nurses members were invited to participate in a survey that focused on the nurses’ roles in patient education of patients taking oral oncolytic agents. Data were collected via a 16-item questionnaire. Respondents included 197 nurses and advanced practice providers. Content analysis techniques were used to describe the qualitative data while Fisher’s exact test and chi-square test were used in the quantitative statistical analysis. Results: Seventy-one percent of respondents reported some type of involvement in patient education. Knowledge as well as comfort level improved as years of oncology nursing experience increased. Generally, policies and procedures are in place; however, nurses noted there is a need for improved oral oncolytic guidelines. Nurses also reported a need for improved and updated educational resources. Conclusion: While the development of oral oncolytic agents continues to rise, findings show a need to develop evidence-based guidelines for nurses, which include management of oral oncolytic dosing, adverse events, and safety issues.","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":"37 1","pages":"46 - 54"},"PeriodicalIF":1.7,"publicationDate":"2020-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1043454219871081","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48833289","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2020-01-01DOI: 10.1177/1043454219873638
S. Mukherjee, A. Tennant, B. Beresford
Burnout in health service staff is a cause for concern since it has negative consequences for the individual affected, the wider organization, and patients. The Maslach Burnout Inventory–Human Services Survey (MBI-HSS) has been widely used to assess the prevalence of burnout within oncology services. The MBI-HSS is a self-report measure comprising three subscales—Emotional Exhaustion (EE), Depersonalization (DP), and Personal Accomplishment (PA). This article reports on the first study to investigate the psychometric properties of the MBI-HSS when administered to pediatric oncology staff. Two hundred and three pediatric oncology staff recruited through seven UK Principal Treatment Centers (PTCs) and a children’s cancer charity completed the MBI-HSS. The factor structure of the instrument was tested using confirmatory and exploratory factor analysis, with Rasch analysis applied to assess whether the measure meets the requirements of an interval-level scale. Cronbach alpha was used to assess internal reliability. Factor analysis did not support the traditional three-factor structure of the MBI-HSS but instead suggested seven factors. Rasch analysis and alpha coefficients indicated that while the EE and the PA subscales fulfilled the requirements of an interval-level measure for group-level diagnosis, DP did not. Further investigation revealed a “floor effect” on many DP items. Whereas the EE and PA subscales of the MBI-HSS can be used in research with pediatric oncology staff working in PTCs, there are considerable problems with the DP subscale, and researchers should be cautious in interpreting data from this subscale.
{"title":"Measuring Burnout in Pediatric Oncology Staff: Should We Be Using the Maslach Burnout Inventory?","authors":"S. Mukherjee, A. Tennant, B. Beresford","doi":"10.1177/1043454219873638","DOIUrl":"https://doi.org/10.1177/1043454219873638","url":null,"abstract":"Burnout in health service staff is a cause for concern since it has negative consequences for the individual affected, the wider organization, and patients. The Maslach Burnout Inventory–Human Services Survey (MBI-HSS) has been widely used to assess the prevalence of burnout within oncology services. The MBI-HSS is a self-report measure comprising three subscales—Emotional Exhaustion (EE), Depersonalization (DP), and Personal Accomplishment (PA). This article reports on the first study to investigate the psychometric properties of the MBI-HSS when administered to pediatric oncology staff. Two hundred and three pediatric oncology staff recruited through seven UK Principal Treatment Centers (PTCs) and a children’s cancer charity completed the MBI-HSS. The factor structure of the instrument was tested using confirmatory and exploratory factor analysis, with Rasch analysis applied to assess whether the measure meets the requirements of an interval-level scale. Cronbach alpha was used to assess internal reliability. Factor analysis did not support the traditional three-factor structure of the MBI-HSS but instead suggested seven factors. Rasch analysis and alpha coefficients indicated that while the EE and the PA subscales fulfilled the requirements of an interval-level measure for group-level diagnosis, DP did not. Further investigation revealed a “floor effect” on many DP items. Whereas the EE and PA subscales of the MBI-HSS can be used in research with pediatric oncology staff working in PTCs, there are considerable problems with the DP subscale, and researchers should be cautious in interpreting data from this subscale.","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":"37 1","pages":"55 - 64"},"PeriodicalIF":1.7,"publicationDate":"2020-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1043454219873638","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42290402","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2020-01-01DOI: 10.1007/978-3-030-25804-7
G. Reaman
{"title":"Pediatric Oncology Nursing: Defining Care Through Science","authors":"G. Reaman","doi":"10.1007/978-3-030-25804-7","DOIUrl":"https://doi.org/10.1007/978-3-030-25804-7","url":null,"abstract":"","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":"78 1","pages":""},"PeriodicalIF":1.7,"publicationDate":"2020-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"74161650","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2019-11-26DOI: 10.1177/1043454219888807
Jennifer L. Raybin, E. Barr, M. Krajicek, Jacqueline Jones
Introduction: As more children survive cancer, attention must be paid to their quality of life (QOL). Integrative therapies are an ideal modality for nurses to advocate for reducing distress and improving QOL for children with cancer. Creative arts therapy is a type of integrative health that may improve QOL in this population. Therefore, the research question was asked, “For children with cancer, what opportunities exist for creative arts therapy to reduce distress?” Method: A metasynthesis of the extant qualitative research was conducted to answer the research question. Seven qualitative studies were identified, which included 162 participants. New themes were identified through rigorous analyzation by the study team of each study as individual data. Results: Four derived analytic themes emerged through the analysis: (a) connection is established through creative expression, (b) coping is facilitated by creative arts, (c) communication is enabled by creative arts interventions, and (d) continuance (the concept of time) is experienced through creative arts. Examples of each theme with subthemes are delineated, including expressive quotes. Summary: Through this qualitative synthesis of studies with creative arts therapy, evocative opportunities to reduce the distress associated with the disease experience are revealed. Nurses are called now to promote creative arts therapy to improve the symptoms in children with cancer.
{"title":"How Does Creative Arts Therapy Reduce Distress for Children With Cancer? A Metasynthesis of Extant Qualitative Literature","authors":"Jennifer L. Raybin, E. Barr, M. Krajicek, Jacqueline Jones","doi":"10.1177/1043454219888807","DOIUrl":"https://doi.org/10.1177/1043454219888807","url":null,"abstract":"Introduction: As more children survive cancer, attention must be paid to their quality of life (QOL). Integrative therapies are an ideal modality for nurses to advocate for reducing distress and improving QOL for children with cancer. Creative arts therapy is a type of integrative health that may improve QOL in this population. Therefore, the research question was asked, “For children with cancer, what opportunities exist for creative arts therapy to reduce distress?” Method: A metasynthesis of the extant qualitative research was conducted to answer the research question. Seven qualitative studies were identified, which included 162 participants. New themes were identified through rigorous analyzation by the study team of each study as individual data. Results: Four derived analytic themes emerged through the analysis: (a) connection is established through creative expression, (b) coping is facilitated by creative arts, (c) communication is enabled by creative arts interventions, and (d) continuance (the concept of time) is experienced through creative arts. Examples of each theme with subthemes are delineated, including expressive quotes. Summary: Through this qualitative synthesis of studies with creative arts therapy, evocative opportunities to reduce the distress associated with the disease experience are revealed. Nurses are called now to promote creative arts therapy to improve the symptoms in children with cancer.","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":"37 1","pages":"104 - 91"},"PeriodicalIF":1.7,"publicationDate":"2019-11-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1043454219888807","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48094849","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2019-11-25DOI: 10.1177/1043454219888805
Paula J. Belson, J. Eastwood, M. Brecht, R. Hays, N. Pike
Background: Retinoblastoma is a malignant tumor of the eye that typically presents in early childhood and occurs in approximately 1 in 20,000 births. While active treatment of the tumor is typically completed in childhood, survivors often suffer from long-term effects from treatment including visual impairment, facial deformities, and fear of recurrence or secondary cancer. However, little is known how these long-term effects affect their health-related quality of life (HRQOL). Purpose: To review the literature on HRQOL in retinoblastoma survivors. Method: We searched three electronic databases from January 2005 to December 2018 for original research articles reporting on HRQOL or individual domains such as function, cognition, and psychosocial outcomes in retinoblastoma survivors. Results: A total of 59 articles were reviewed and 15 were identified as eligible. Five of the studies reported worse HRQOL in retinoblastoma survivors than controls or general population norms. Parent-proxy ratings were worse than survivors’ self-reports. Conclusion: Our findings confirm the need for further HRQOL research to assess the factors influencing long-term outcomes associated with treatment in adolescent and young adult retinoblastoma survivors. By identifying any potential deficits in specific domains of HRQOL, early interventions might be developed to improve HRQOL in retinoblastoma survivors.
{"title":"A Review of Literature on Health-Related Quality of Life of Retinoblastoma Survivors","authors":"Paula J. Belson, J. Eastwood, M. Brecht, R. Hays, N. Pike","doi":"10.1177/1043454219888805","DOIUrl":"https://doi.org/10.1177/1043454219888805","url":null,"abstract":"Background: Retinoblastoma is a malignant tumor of the eye that typically presents in early childhood and occurs in approximately 1 in 20,000 births. While active treatment of the tumor is typically completed in childhood, survivors often suffer from long-term effects from treatment including visual impairment, facial deformities, and fear of recurrence or secondary cancer. However, little is known how these long-term effects affect their health-related quality of life (HRQOL). Purpose: To review the literature on HRQOL in retinoblastoma survivors. Method: We searched three electronic databases from January 2005 to December 2018 for original research articles reporting on HRQOL or individual domains such as function, cognition, and psychosocial outcomes in retinoblastoma survivors. Results: A total of 59 articles were reviewed and 15 were identified as eligible. Five of the studies reported worse HRQOL in retinoblastoma survivors than controls or general population norms. Parent-proxy ratings were worse than survivors’ self-reports. Conclusion: Our findings confirm the need for further HRQOL research to assess the factors influencing long-term outcomes associated with treatment in adolescent and young adult retinoblastoma survivors. By identifying any potential deficits in specific domains of HRQOL, early interventions might be developed to improve HRQOL in retinoblastoma survivors.","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":"37 1","pages":"116 - 127"},"PeriodicalIF":1.7,"publicationDate":"2019-11-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1043454219888805","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41427261","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2019-11-18DOI: 10.1177/1043454219887671
B. Cherven, Dorothy Jordan, S. Hale, M. Wetzel, C. Travers, Kylie Smith
Objective: Pediatric oncology nurses can experience burnout, vicarious traumatization, and compassion fatigue related to the unique stressors of their profession. Opportunities to enhance nurses’ professional commitment and nurse–patient connectedness may mitigate these stressors. This study explored the impact of volunteering at a local oncology camp on pediatric oncology nurses’ professional quality of life and connectedness with their oncology patients. Method and Sample: Pediatric oncology nurses from a single institution were invited to participate in this mixed methods study. Participants completed a survey assessing professional quality of life, professional commitment, and patient connectedness. Nurses who had oncology camp volunteer experience were invited to participate in a qualitative interview. Results: Compared with noncamp nurses (n = 23), camp nurses (n = 25) had increased odds of a low burnout score (odds ratio = 6.74, 95% confidence interval [1.10, 41.43], p = .039) and increased odds of a high compassion satisfaction score (odds ratio = 4.69, 95% confidence interval [1.14, 19.32], p = .033). Qualitative interviews supported the impact of volunteering at camp on nurses’ personal and professional perspective, nursing practice, and delivery of person-centered care. Conclusion: Volunteering at a pediatric oncology camp provided nurses the opportunity to engage with patients, share experiences, and view patients as individuals while still maintaining professional boundaries. Nurses who volunteer at camp described a perspective moving beyond patient-centered to person-centered care, and for some pediatric oncology nurses, camp volunteering may be a novel way to mitigate burnout and an important tool to enhance resiliency.
{"title":"Nurse–Patient Connectedness and Nurses’ Professional Quality of Life: Experiences of Volunteering at a Pediatric Oncology Camp","authors":"B. Cherven, Dorothy Jordan, S. Hale, M. Wetzel, C. Travers, Kylie Smith","doi":"10.1177/1043454219887671","DOIUrl":"https://doi.org/10.1177/1043454219887671","url":null,"abstract":"Objective: Pediatric oncology nurses can experience burnout, vicarious traumatization, and compassion fatigue related to the unique stressors of their profession. Opportunities to enhance nurses’ professional commitment and nurse–patient connectedness may mitigate these stressors. This study explored the impact of volunteering at a local oncology camp on pediatric oncology nurses’ professional quality of life and connectedness with their oncology patients. Method and Sample: Pediatric oncology nurses from a single institution were invited to participate in this mixed methods study. Participants completed a survey assessing professional quality of life, professional commitment, and patient connectedness. Nurses who had oncology camp volunteer experience were invited to participate in a qualitative interview. Results: Compared with noncamp nurses (n = 23), camp nurses (n = 25) had increased odds of a low burnout score (odds ratio = 6.74, 95% confidence interval [1.10, 41.43], p = .039) and increased odds of a high compassion satisfaction score (odds ratio = 4.69, 95% confidence interval [1.14, 19.32], p = .033). Qualitative interviews supported the impact of volunteering at camp on nurses’ personal and professional perspective, nursing practice, and delivery of person-centered care. Conclusion: Volunteering at a pediatric oncology camp provided nurses the opportunity to engage with patients, share experiences, and view patients as individuals while still maintaining professional boundaries. Nurses who volunteer at camp described a perspective moving beyond patient-centered to person-centered care, and for some pediatric oncology nurses, camp volunteering may be a novel way to mitigate burnout and an important tool to enhance resiliency.","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":"37 1","pages":"136 - 147"},"PeriodicalIF":1.7,"publicationDate":"2019-11-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1043454219887671","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49155019","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2019-11-13DOI: 10.1177/1043454219887509
Cheryl L. Petersen
There is a distinct lack of literature related to the spiritual care of parents whose children with cancer are at the end of life. This has led to a dearth in evidence about how nurses may intervene with spiritual care interventions to best support these vulnerable parents. The purpose of this scoping review was to examine the evidence regarding the value of spirituality/spiritual care in minimizing the vulnerability of parents whose children were diagnosed with cancer and who faced the end of life. The Arksey and O’Malley methodological framework guided the analysis of the reviewed quantitative and qualitative literature. Spirituality and spiritual care provided bereaved parents and parents of children with cancer with necessary support and enhanced coping to allow them to better deal with this devastating experience. Spirituality and spiritual care instilled hope, assisted in the search for meaning and purpose, and guided parents to develop continuing bonds with their child. Through skillful communication, pediatric oncology nurses may guide parents of children who face the end of life to strengthen relationships that offer support, plan activities that provide opportunities for hope and connection, and identify sources of meaning in their experiences.
{"title":"Spiritual Care: Minimizing the Vulnerability of Parents Whose Children With Cancer Face the End of Life","authors":"Cheryl L. Petersen","doi":"10.1177/1043454219887509","DOIUrl":"https://doi.org/10.1177/1043454219887509","url":null,"abstract":"There is a distinct lack of literature related to the spiritual care of parents whose children with cancer are at the end of life. This has led to a dearth in evidence about how nurses may intervene with spiritual care interventions to best support these vulnerable parents. The purpose of this scoping review was to examine the evidence regarding the value of spirituality/spiritual care in minimizing the vulnerability of parents whose children were diagnosed with cancer and who faced the end of life. The Arksey and O’Malley methodological framework guided the analysis of the reviewed quantitative and qualitative literature. Spirituality and spiritual care provided bereaved parents and parents of children with cancer with necessary support and enhanced coping to allow them to better deal with this devastating experience. Spirituality and spiritual care instilled hope, assisted in the search for meaning and purpose, and guided parents to develop continuing bonds with their child. Through skillful communication, pediatric oncology nurses may guide parents of children who face the end of life to strengthen relationships that offer support, plan activities that provide opportunities for hope and connection, and identify sources of meaning in their experiences.","PeriodicalId":50093,"journal":{"name":"Journal of Pediatric Oncology Nursing","volume":"37 1","pages":"105 - 115"},"PeriodicalIF":1.7,"publicationDate":"2019-11-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1043454219887509","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45956929","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2019-11-01Epub Date: 2019-05-03DOI: 10.1177/1043454219844229
Nicole SanGiacomo, Jennifer Toth, Wendy Hobbie, Elizabeth Broden, Elizabeth Ver Hoeve, Kathleen A Knafl, Lamia Barakat, Sue Ogle, Janet A Deatrick
Due to the complexity of cancer late effects, the education required to provide anticipatory guidance and support to the caregivers of adolescent and young adult (AYA) survivors of childhood brain tumors can be difficult. Therefore, identifying challenges to family management (FM) could be helpful in anticipating complications with the integration of tumor and treatment late effects into family life. Building on previous research that described FM for children with chronic conditions, children who survived cancer, and the Family Management Styles Framework, the purpose of this study was to identify FM challenges for caregivers of AYA survivors of childhood brain tumors to guide clinical practice and research. Directed content analysis was used to identify FM challenges in data from semistructured interviews with 45 maternal caregivers for AYA survivors of childhood brain tumors living with them. Caregivers were largely White (89%) with an average age of 52 years, educated beyond the high school level (67%), and were partnered or married (53%). On average, caregivers had been caring for the AYA for 21 years since diagnosis, and 56% of their survivors had moderate functional restrictions. A primary and a secondary analyst were assigned to the data for each interview and completed a single summary matrix. A list of challenges was created by the research team based on Family Management Styles Framework, the literature, and clinical expertise. Seven core challenges to FM were identified: ensuring survivor well-being, supporting survivor independence, encouraging sibling well-being, planning family activities, sustaining parents as caregivers, attending to survivor late effects, and providing support and advocacy.
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