Pub Date : 2023-06-01DOI: 10.1177/13674935221133476
Amanda J Taylor, Sabine Baker, Danielle Gallegos
Food insecurity is a significant social and health issue for children in high-income countries and contributes to sub-optimal child outcomes. This scoping review examines how food insecurity intersects with the moral experiences of those involved in providing and receiving paediatric health care. Multiple databases were searched using a priori inclusion criteria, papers were screened by multiple reviewers. Searches yielded nine papers. Descriptive data was summarised and qualitative results extracted from included papers were analysed using inductive and deductive thematic analysis. Four main themes emerged: Food insecurity threatens caregiver and healthcare provider identity; is food insecurity the business of health? is screening for food insecurity surveillance or facilitating assistance? and the lived experience of navigating the tension of managing food insecurity and a child's health condition. The moral experiences lens has magnified the countless everyday encounters in which values and beliefs about what is 'right' or 'just' can be realised or thwarted in the context of the intersection between healthcare and food insecurity. Review findings have implications relating to the inclusion of children's voices in healthcare settings, healthcare practice and policy design, and the development and use of FI screening tools.
{"title":"Intersection of food insecurity and moral experiences of those involved in paediatric healthcare: A scoping review of child, caregiver and healthcare provider perspectives.","authors":"Amanda J Taylor, Sabine Baker, Danielle Gallegos","doi":"10.1177/13674935221133476","DOIUrl":"https://doi.org/10.1177/13674935221133476","url":null,"abstract":"<p><p>Food insecurity is a significant social and health issue for children in high-income countries and contributes to sub-optimal child outcomes. This scoping review examines how food insecurity intersects with the moral experiences of those involved in providing and receiving paediatric health care. Multiple databases were searched using a priori inclusion criteria, papers were screened by multiple reviewers. Searches yielded nine papers. Descriptive data was summarised and qualitative results extracted from included papers were analysed using inductive and deductive thematic analysis. Four main themes emerged: Food insecurity threatens caregiver and healthcare provider identity; is food insecurity the business of health? is screening for food insecurity surveillance or facilitating assistance? and the lived experience of navigating the tension of managing food insecurity and a child's health condition. The moral experiences lens has magnified the countless everyday encounters in which values and beliefs about what is 'right' or 'just' can be realised or thwarted in the context of the intersection between healthcare and food insecurity. Review findings have implications relating to the inclusion of children's voices in healthcare settings, healthcare practice and policy design, and the development and use of FI screening tools.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9614900","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}
Mainstream law and ethics literature on consent to children's surgery contrasts with moral experiences of children and adults observed in two heart surgery centres. Research interviews were conducted with 45 practitioners and related experts, and with 16 families of children aged 6 to 15, admitted for non-urgent surgery, as well as an online survey. Thematic data analysis was informed by critical realism and childhood studies.Impersonal adult-centric mainstream literature assumes young children cannot consent. It is based on dichotomies: adult/child, competent/incompetent, respect or protect children, inform or distract them, use time swiftly or flexibly, verbal/non-verbal communication, respect or control children and reason/emotion.Through their moral experiences, adults and children resolve these seeming dichotomies. Through understanding young children's reasoning and emotions about complex distressing decisions related to heart surgery, adults share knowledge, control, trust and respect with them. They see children's consent or refusal before non-urgent surgery as a shared personal moral experience within the child's life course, beyond mere legal compliance. Adults help children to understand and 'want' the surgery that offers things they value: better health or to 'be more like their friends'. If children are not convinced, sometimes surgery is postponed or occasionally cancelled.
{"title":"Children's understanding and consent to heart surgery: Multidisciplinary teamwork and moral experiences.","authors":"Priscilla Alderson, Hannah Bellsham-Revell, Nathalie Dedieu, Liz King, Rosa Mendizabal, Katy Sutcliffe","doi":"10.1177/13674935221100419","DOIUrl":"10.1177/13674935221100419","url":null,"abstract":"<p><p>Mainstream law and ethics literature on consent to children's surgery contrasts with moral experiences of children and adults observed in two heart surgery centres. Research interviews were conducted with 45 practitioners and related experts, and with 16 families of children aged 6 to 15, admitted for non-urgent surgery, as well as an online survey. Thematic data analysis was informed by critical realism and childhood studies.Impersonal adult-centric mainstream literature assumes young children cannot consent. It is based on dichotomies: adult/child, competent/incompetent, respect or protect children, inform or distract them, use time swiftly or flexibly, verbal/non-verbal communication, respect or control children and reason/emotion.Through their moral experiences, adults and children resolve these seeming dichotomies. Through understanding young children's reasoning and emotions about complex distressing decisions related to heart surgery, adults share knowledge, control, trust and respect with them. They see children's consent or refusal before non-urgent surgery as a shared personal moral experience within the child's life course, beyond mere legal compliance. Adults help children to understand and 'want' the surgery that offers things they value: better health or to 'be more like their friends'. If children are not convinced, sometimes surgery is postponed or occasionally cancelled.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10240628/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9618704","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}
Pub Date : 2023-06-01DOI: 10.1177/13674935231173575
Kim Atkins
{"title":"Editorial: What matters morally for children receiving health care.","authors":"Kim Atkins","doi":"10.1177/13674935231173575","DOIUrl":"https://doi.org/10.1177/13674935231173575","url":null,"abstract":"","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9671070","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}
Pub Date : 2023-06-01DOI: 10.1177/13674935221133953
Bibian van der Voorn, Roxanna Camfferman, Jacob C Seidell, Rebecca M Puhl, Jutka Halberstadt
Little is known about the prevalence of negative weight-biased attitudes among Dutch healthcare professionals (HCPs) when treating children and adolescents with obesity and whether interdisciplinary differences are present. Accordingly, we asked Dutch HCPs that treat pediatric patients with obesity to complete a validated 22-item self-report questionnaire about their weight-biased attitudes. In total, 555 HCPs participated from seven different disciplines: 41 general practitioners (GPs), 40 pediatricians, 132 youth healthcare physicians, 223 youth healthcare nurses, 40 physiotherapists, 40 dieticians, and 39 mental health professionals. HCPs from all disciplines reported to experience negative weight-biased attitudes among themselves. Pediatricians and GPs scored highest on negative weight-biased attitudes, including frustrations in treating children with obesity, and feeling less confident and prepared to treat children with obesity. Dieticians scored the least negative weight-biased attitudes. Participants from all groups perceived weight bias expressed by their colleagues, toward children with obesity. These findings are comparable to results reported by adult HCPs from other countries. Interdisciplinary differences were found and underscore the need for more research on contributing factors that impact explicit weight bias among pediatric HCPs.
{"title":"Weight-biased attitudes about pediatric patients with obesity in Dutch healthcare professionals from seven different professions.","authors":"Bibian van der Voorn, Roxanna Camfferman, Jacob C Seidell, Rebecca M Puhl, Jutka Halberstadt","doi":"10.1177/13674935221133953","DOIUrl":"https://doi.org/10.1177/13674935221133953","url":null,"abstract":"<p><p>Little is known about the prevalence of negative weight-biased attitudes among Dutch healthcare professionals (HCPs) when treating children and adolescents with obesity and whether interdisciplinary differences are present. Accordingly, we asked Dutch HCPs that treat pediatric patients with obesity to complete a validated 22-item self-report questionnaire about their weight-biased attitudes. In total, 555 HCPs participated from seven different disciplines: 41 general practitioners (GPs), 40 pediatricians, 132 youth healthcare physicians, 223 youth healthcare nurses, 40 physiotherapists, 40 dieticians, and 39 mental health professionals. HCPs from all disciplines reported to experience negative weight-biased attitudes among themselves. Pediatricians and GPs scored highest on negative weight-biased attitudes, including frustrations in treating children with obesity, and feeling less confident and prepared to treat children with obesity. Dieticians scored the least negative weight-biased attitudes. Participants from all groups perceived weight bias expressed by their colleagues, toward children with obesity. These findings are comparable to results reported by adult HCPs from other countries. Interdisciplinary differences were found and underscore the need for more research on contributing factors that impact explicit weight bias among pediatric HCPs.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10240630/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9615457","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}
Pub Date : 2023-06-01DOI: 10.1177/1367493519883087
Lucy Bray, Ed Horowicz, Kimberley Preston, Bernie Carter
Children attending hospital for a clinical procedure such as a scan or blood test can experience anxiety and uncertainty. Children who are informed and supported before and during procedures tend to have a more positive experience. Despite this, there is a lack of empirical evidence directly from children around how they would like to be supported before, during and after a procedure. This qualitative study used improvised drama workshops to investigate children's (n = 15, aged 7-14 years) perceptions and opinions of attending hospital for a procedure and what would help them have a positive encounter. Children portrayed themselves as having a small presence during a hospital procedure, depicted by the two themes of 'having to be brave but feeling scared inside' and 'wanting to get involved but being too afraid to ask'. Within both themes, children described how the directive and reassuring language and actions used by health professionals and parents marginalized their contributions. This study shows that children attending hospital for procedures value the opportunity to have a presence and active role, to express their emotions, join in interactions and be involved in making choices about their care.
{"title":"Using participatory drama workshops to explore children's beliefs, understandings and experiences of coming to hospital for clinical procedures.","authors":"Lucy Bray, Ed Horowicz, Kimberley Preston, Bernie Carter","doi":"10.1177/1367493519883087","DOIUrl":"https://doi.org/10.1177/1367493519883087","url":null,"abstract":"<p><p>Children attending hospital for a clinical procedure such as a scan or blood test can experience anxiety and uncertainty. Children who are informed and supported before and during procedures tend to have a more positive experience. Despite this, there is a lack of empirical evidence directly from children around how they would like to be supported before, during and after a procedure. This qualitative study used improvised drama workshops to investigate children's (<i>n</i> = 15, aged 7-14 years) perceptions and opinions of attending hospital for a procedure and what would help them have a positive encounter. Children portrayed themselves as having a <i>small presence</i> during a hospital procedure, depicted by the two themes of 'having to be brave but feeling scared inside' and 'wanting to get involved but being too afraid to ask'. Within both themes, children described how the directive and reassuring language and actions used by health professionals and parents marginalized their contributions. This study shows that children attending hospital for procedures value the opportunity to have a <i>presence</i> and active role, to express their emotions, join in interactions and be involved in making choices about their care.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1367493519883087","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9606574","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}
Pub Date : 2023-05-25DOI: 10.1177/13674935231177782
Janine Benjamins, Emely de Vet, Gerlinde Jordaan, Annemien Haveman-Nies
Client autonomy is important in Dutch youth care. It correlates positively with mental and physical health and can be strengthened by professional autonomy-supportive behaviour. Aiming for client autonomy, three youth care organisations co-developed a client-accessible youth health record (EPR-Youth). Currently, limited research is available on how client-accessible records contribute to adolescent autonomy. We investigated whether EPR-Youth strengthened client autonomy and whether professional autonomy-supportive behaviour reinforced this effect. A mixed methods design combined baseline and follow-up questionnaires with focus group interviews. Different client groups completed questionnaires about autonomy at baseline (n = 1404) and after 12 months (n = 1003). Professionals completed questionnaires about autonomy-supportive behaviour at baseline (n = 100, 82%), after 5 months (n = 57, 57%) and after 24 months (n = 110, 89%). After 14 months, focus group interviews were conducted with clients (n = 12) and professionals (n = 12). Findings show that clients using EPR-Youth experienced more autonomy than non-users. this effect was stronger among adolescents aged 16 and older than among younger adolescents. Professional autonomy-supporting behaviour did not change over time. However, clients reported that professional autonomy-supporting behaviour contributed to client autonomy, emphasising that professional attitude needs addressing during implementation of client-accessible records. Follow-up research with paired data needs to strengthen the association between using client-accessible records and autonomy.
{"title":"Effect of using client-accessible youth health records on experienced autonomy among parents and adolescents in preventive child healthcare and youth care: A mixed methods intervention study.","authors":"Janine Benjamins, Emely de Vet, Gerlinde Jordaan, Annemien Haveman-Nies","doi":"10.1177/13674935231177782","DOIUrl":"https://doi.org/10.1177/13674935231177782","url":null,"abstract":"<p><p>Client autonomy is important in Dutch youth care. It correlates positively with mental and physical health and can be strengthened by professional autonomy-supportive behaviour. Aiming for client autonomy, three youth care organisations co-developed a client-accessible youth health record (EPR-Youth). Currently, limited research is available on how client-accessible records contribute to adolescent autonomy. We investigated whether EPR-Youth strengthened client autonomy and whether professional autonomy-supportive behaviour reinforced this effect. A mixed methods design combined baseline and follow-up questionnaires with focus group interviews. Different client groups completed questionnaires about autonomy at baseline (<i>n</i> = 1404) and after 12 months (<i>n</i> = 1003). Professionals completed questionnaires about autonomy-supportive behaviour at baseline (<i>n</i> = 100, 82%), after 5 months (<i>n</i> = 57, 57%) and after 24 months (<i>n</i> = 110, 89%). After 14 months, focus group interviews were conducted with clients (<i>n</i> = 12) and professionals (<i>n</i> = 12). Findings show that clients using EPR-Youth experienced more autonomy than non-users. this effect was stronger among adolescents aged 16 and older than among younger adolescents. Professional autonomy-supporting behaviour did not change over time. However, clients reported that professional autonomy-supporting behaviour contributed to client autonomy, emphasising that professional attitude needs addressing during implementation of client-accessible records. Follow-up research with paired data needs to strengthen the association between using client-accessible records and autonomy.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2023-05-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9789958","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}
Pub Date : 2023-05-24DOI: 10.1177/13674935231174503
Jody M Platt, Alberto Nettel-Aguirre, Candice L Bjornson, Ian Mitchell, Kathryn Davis, Ja Michelle Bailey
Esophageal Atresia/Tracheoesophageal Atresia (EA/TEF) is a multisystem congenital anomaly. Historically, children with EA/TEF lack coordinated care. A multidisciplinary clinic was established in 2005 to provide coordinated care and improve access to outpatient care. This single-center retrospective cohort study was conducted to describe our cohort of patients with EA/TEF born between March 2005 and March 2011, assess coordination of care, and to compare outcomes of children in the multidisciplinary clinic to the previous cohort without a multi-disciplinary clinic. A chart review identified demographics, hospitalizations, emergency visits, clinic visits, and coordination of outpatient care. Twenty-seven patients were included; 75.9% had a C-type EA/TEF. Clinics provided multidisciplinary care and compliance with the visit schedule was high with a median of 100% (IQR 50). Compared to the earlier cohort, the new cohort (N = 27) had fewer hospital admissions and LOS was reduced significantly in the first 2 years of life. Multidisciplinary care clinics for medically complex children can improve coordination of visits with multiple health care providers and may contribute to reduced use of acute care services.
{"title":"Multidisciplinary coordination of care for children with esophageal atresia and tracheoesophageal fistula.","authors":"Jody M Platt, Alberto Nettel-Aguirre, Candice L Bjornson, Ian Mitchell, Kathryn Davis, Ja Michelle Bailey","doi":"10.1177/13674935231174503","DOIUrl":"https://doi.org/10.1177/13674935231174503","url":null,"abstract":"<p><p>Esophageal Atresia/Tracheoesophageal Atresia (EA/TEF) is a multisystem congenital anomaly. Historically, children with EA/TEF lack coordinated care. A multidisciplinary clinic was established in 2005 to provide coordinated care and improve access to outpatient care. This single-center retrospective cohort study was conducted to describe our cohort of patients with EA/TEF born between March 2005 and March 2011, assess coordination of care, and to compare outcomes of children in the multidisciplinary clinic to the previous cohort without a multi-disciplinary clinic. A chart review identified demographics, hospitalizations, emergency visits, clinic visits, and coordination of outpatient care. Twenty-seven patients were included; 75.9% had a C-type EA/TEF. Clinics provided multidisciplinary care and compliance with the visit schedule was high with a median of 100% (IQR 50). Compared to the earlier cohort, the new cohort (<i>N</i> = 27) had fewer hospital admissions and LOS was reduced significantly in the first 2 years of life. Multidisciplinary care clinics for medically complex children can improve coordination of visits with multiple health care providers and may contribute to reduced use of acute care services.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2023-05-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9519021","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}
Pub Date : 2023-05-22DOI: 10.1177/13674935231174501
In Young Cho, So Hyoung Hong, Ji Yeong Yun
We aimed to identify factors affecting pediatric nurses' perceptions of their development of partnerships with parents of hospitalized children based on Lazarus and Folkman's stress-coping adaptation model. This cross-sectional study included 209 pediatric nurses with over 1 year of clinical experience in South Korea. Data were collected using online-based self-report questionnaires containing items on nurses' perceived partnerships with parents, job stress, positive psychological capital, nursing professionalism, and a coping scale. Positive psychological capital, job stress, coping, hospital type, and unit type were significant factors in a hierarchical regression analysis using perceived partnership as a dependent variable. This study supports an efficient intervention program to improve pediatric nurses' partnership competency. Strategies to reduce pediatric nurses' job stress and improve their coping abilities and positive psychological capital will enhance their partnerships with parents of hospitalized children.
{"title":"Factors affecting pediatric nurses' development of partnerships with parents of hospitalized children: An evaluation based on the stress-coping adaptation model.","authors":"In Young Cho, So Hyoung Hong, Ji Yeong Yun","doi":"10.1177/13674935231174501","DOIUrl":"https://doi.org/10.1177/13674935231174501","url":null,"abstract":"<p><p>We aimed to identify factors affecting pediatric nurses' perceptions of their development of partnerships with parents of hospitalized children based on Lazarus and Folkman's stress-coping adaptation model. This cross-sectional study included 209 pediatric nurses with over 1 year of clinical experience in South Korea. Data were collected using online-based self-report questionnaires containing items on nurses' perceived partnerships with parents, job stress, positive psychological capital, nursing professionalism, and a coping scale. Positive psychological capital, job stress, coping, hospital type, and unit type were significant factors in a hierarchical regression analysis using perceived partnership as a dependent variable. This study supports an efficient intervention program to improve pediatric nurses' partnership competency. Strategies to reduce pediatric nurses' job stress and improve their coping abilities and positive psychological capital will enhance their partnerships with parents of hospitalized children.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2023-05-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9875684","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}
Pub Date : 2023-05-15DOI: 10.1177/13674935231171451
Ciara Thomas, Emma Cockcroft, Georgia Jenkins, Kristin Liabo
Children and young people have much to contribute to the design and delivery of health research and care. Nevertheless, there are multiple barriers to meaningful and impactful involvement of children and young people. This narrative review synthesised existing literature on the involvement of children and young people as partners in health research. Authors screened electronic databases and reference lists to identify relevant studies. Data were extracted on how involvement was described, what young people contributed to, and the impact of their involvement. The review identified 15 reports; these reported researcher observations and findings from focus group discussions and questionnaires about the involvement. Impacts recorded in these studies included influence on research; outputs from involvement activities; shifts in researchers' attitudes; a sense of achievement in young people; and fulfilling relationships. These impacts were associated with principles being followed: building relationships over time to allow for unexpected involvement in the research, flexibility so young people could contribute in ways that work for them, and training. Methods adapted to be youth-appropriate such as visual aids and icebreaker games also enabled impact. Impactful involvement relies on processes that respond to young people's preferences for engagement and activities that support them to share their views.
{"title":"Working with children and young people in research: Supportive practices and pathways to impact.","authors":"Ciara Thomas, Emma Cockcroft, Georgia Jenkins, Kristin Liabo","doi":"10.1177/13674935231171451","DOIUrl":"https://doi.org/10.1177/13674935231171451","url":null,"abstract":"<p><p>Children and young people have much to contribute to the design and delivery of health research and care. Nevertheless, there are multiple barriers to meaningful and impactful involvement of children and young people. This narrative review synthesised existing literature on the involvement of children and young people as partners in health research. Authors screened electronic databases and reference lists to identify relevant studies. Data were extracted on how involvement was described, what young people contributed to, and the impact of their involvement. The review identified 15 reports; these reported researcher observations and findings from focus group discussions and questionnaires about the involvement. Impacts recorded in these studies included <i>influence</i> on research; <i>outputs</i> from involvement activities; <i>shifts</i> in researchers' attitudes; a <i>sense of achievement</i> in young people; and <i>fulfilling relationships</i>. These impacts were associated with principles being followed: building relationships over time to allow for unexpected involvement in the research, flexibility so young people could contribute in ways that work for them, and training. Methods adapted to be youth-appropriate such as visual aids and icebreaker games also enabled impact. Impactful involvement relies on processes that respond to young people's preferences for engagement and activities that support them to share their views.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2023-05-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9471427","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}
Pub Date : 2023-05-13DOI: 10.1177/13674935231175722
Ping Zhang, Meng Zhang, Qian Qu, Wanting Hu, Joseph Torres, Juan Yao, Xiaorong Pan
Fear of progression (FoP) is a prevalent psychological strain for cancer patients associated with poor quality of life and psychological morbidity. However, little evidence exists on FoP in children with cancer. Our study aimed to determine prevalence and correlates of FoP of cancer in children. From December 2018 to March 2019, cancer patients from Children's Hospital in Chongqing, Southwest China, were recruited. A Chinese version of Fear of Progression Questionnaire-Short Form (FoP-Q-SF) was adopted to assess children' FoP. Descriptive statistics (percentages, median, and interquartile range), non-parametric tests, and multiple regression analyses were performed on these data. Prevalence of high-level FoP was 43.75% among these 102 children. Multiple regression analysis showed that reproductive system tumors (beta = 0.315, t = 3.235 95% CI [3.171, 13.334]), and level of psychological care needs (beta = -0.370, t = -3.793 95% CI [-5.396, -1.680]) were independent predictors of FoP. Regression model explained 27.10% of all included variables (adjusted R square = 27.10%). As with adults with cancer, children with cancer also have FoP. More attention should be paid to FoP in children with reproductive tumors and in children who need psychological support. More access to psychological support should be offered to reduce FoP and to improve their quality of life.
进展恐惧(Fear of progression, FoP)是癌症患者普遍存在的一种心理压力,与生活质量差和心理发病率相关。然而,很少有证据表明FoP在癌症儿童中存在。我们的研究旨在确定儿童癌症FoP的患病率及其相关因素。2018年12月至2019年3月,从中国西南重庆市儿童医院招募癌症患者。采用中文版的《进度恐惧问卷-短表》(top - q - sf)对儿童的进度恐惧进行评估。对这些数据进行描述性统计(百分比、中位数和四分位数范围)、非参数检验和多元回归分析。102例患儿中高水平FoP患病率为43.75%。多元回归分析显示,生殖系统肿瘤(β = 0.315, t = 3.235 95% CI[3.171, 13.334])和心理护理需求水平(β = -0.370, t = -3.793 95% CI[-5.396, -1.680])是FoP的独立预测因子。回归模型解释了所有纳入变量的27.10%(调整后R方= 27.10%)。与成人癌症患者一样,儿童癌症患者也患有FoP。对于患有生殖肿瘤的儿童和需要心理支持的儿童,应给予更多的关注。应提供更多获得心理支持的机会,以减少FoP并改善其生活质量。
{"title":"Prevalence and associating variables with fear of progression in Chinese pediatric cancer patients: A cross-sectional study.","authors":"Ping Zhang, Meng Zhang, Qian Qu, Wanting Hu, Joseph Torres, Juan Yao, Xiaorong Pan","doi":"10.1177/13674935231175722","DOIUrl":"https://doi.org/10.1177/13674935231175722","url":null,"abstract":"<p><p>Fear of progression (FoP) is a prevalent psychological strain for cancer patients associated with poor quality of life and psychological morbidity. However, little evidence exists on FoP in children with cancer. Our study aimed to determine prevalence and correlates of FoP of cancer in children. From December 2018 to March 2019, cancer patients from Children's Hospital in Chongqing, Southwest China, were recruited. A Chinese version of Fear of Progression Questionnaire-Short Form (FoP-Q-SF) was adopted to assess children' FoP. Descriptive statistics (percentages, median, and interquartile range), non-parametric tests, and multiple regression analyses were performed on these data. Prevalence of high-level FoP was 43.75% among these 102 children. Multiple regression analysis showed that reproductive system tumors (beta = 0.315, t = 3.235 95% CI [3.171, 13.334]), and level of psychological care needs (beta = -0.370, t = -3.793 95% CI [-5.396, -1.680]) were independent predictors of FoP. Regression model explained 27.10% of all included variables (adjusted R square = 27.10%). As with adults with cancer, children with cancer also have FoP. More attention should be paid to FoP in children with reproductive tumors and in children who need psychological support. More access to psychological support should be offered to reduce FoP and to improve their quality of life.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2023-05-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9824004","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}