Pub Date : 2023-06-28DOI: 10.1177/13674935231183743
Michelle Goldsand, Kathleen Lai, Kristen Davidge, Emily S Ho
Facilitating children's understanding of their medical condition can improve health outcomes and psychosocial well-being. To inform how medical information is delivered, an interpretive qualitative approach was used to explore children's understanding of their brachial plexus birth injury. In-depth interviews of children with brachial plexus birth injuries (n = 8) and their caregivers (n = 10) were conducted individually and as a child-caregiver dyad. Thematic analysis of interview data found that children primarily understood their injury through lived experiences of functional and psychosocial concerns related to movement and appearance of the affected limb, rather than medical information. Children's ability to learn about diagnostic and prognostic information was influenced by age, emotional readiness, and background knowledge. In receiving information about their medical condition, children needed greater support in understanding their prognosis and its implications on their future. These narratives indicate the importance of addressing the primary functional and psychosocial concerns to contextualize medical information and ascertain the emotional readiness of children with brachial plexus birth injuries in information delivery approaches.
{"title":"Elucidating children's understanding of brachial plexus birth injury.","authors":"Michelle Goldsand, Kathleen Lai, Kristen Davidge, Emily S Ho","doi":"10.1177/13674935231183743","DOIUrl":"https://doi.org/10.1177/13674935231183743","url":null,"abstract":"<p><p>Facilitating children's understanding of their medical condition can improve health outcomes and psychosocial well-being. To inform how medical information is delivered, an interpretive qualitative approach was used to explore children's understanding of their brachial plexus birth injury. In-depth interviews of children with brachial plexus birth injuries (<i>n</i> = 8) and their caregivers (<i>n</i> = 10) were conducted individually and as a child-caregiver dyad. Thematic analysis of interview data found that children primarily understood their injury through lived experiences of functional and psychosocial concerns related to movement and appearance of the affected limb, rather than medical information. Children's ability to learn about diagnostic and prognostic information was influenced by age, emotional readiness, and background knowledge. In receiving information about their medical condition, children needed greater support in understanding their prognosis and its implications on their future. These narratives indicate the importance of addressing the primary functional and psychosocial concerns to contextualize medical information and ascertain the emotional readiness of children with brachial plexus birth injuries in information delivery approaches.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2023-06-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9683830","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 : 2023-06-23DOI: 10.1177/13674935231176888
Catherine Larocque, Carolina Lavin Venegas, Sandra Dunn, Marsha Campbell-Yeo, Lucy Gilmore, JoAnn Harrold, Jiale Hu, Leanne McArthur, Shokoufeh Modanloo, Stuart G Nicholls, Pat O'Flaherty, Shahirose Sadrudin Premji, Jessica Reszel, Sonia Semenic, Janet E Squires, Bonnie Stevens, Monica Taljaard, Marie-Josee Trepanier, Kathy Venter, Jodi Wilding, Denise Harrison
Despite known analgesic effects of breastfeeding (BF), skin-to-skin care (SSC), and sweet solutions (sucrose) for newborns, these interventions remain underutilized. Our team produced a five-minute parent-targeted video (BSweet2Babies) demonstrating BF, SSC, and sucrose during newborn blood sampling. We conducted a sequential exploratory mixed-methods study with eight maternal-newborn units across Ontario, Canada to identify barriers and facilitators to implementing the video and the three pain management strategies.Over a 6-month period, data collection included 15 telephone interviews, two email communications, and three community of practice teleconferences with the participating sites (n = 8). We used the Theoretical Domains Framework as the coding matrix. Participants discussed integrating the video in prenatal education and the importance of involving leadership when planning for practice change. Key barriers included lack of comfort with parental presence, perception of high complexity of the strategies, short postpartum stays, competing priorities, and interprofessional challenges. Key facilitators included alignment with the Baby-Friendly Hospital Initiative, modeling by Lactation Consultants, and frequent reminders.
{"title":"Exploring implementation processes of a parent-targeted educational video for improving newborn pain treatment: A sequential exploratory mixed-methods study.","authors":"Catherine Larocque, Carolina Lavin Venegas, Sandra Dunn, Marsha Campbell-Yeo, Lucy Gilmore, JoAnn Harrold, Jiale Hu, Leanne McArthur, Shokoufeh Modanloo, Stuart G Nicholls, Pat O'Flaherty, Shahirose Sadrudin Premji, Jessica Reszel, Sonia Semenic, Janet E Squires, Bonnie Stevens, Monica Taljaard, Marie-Josee Trepanier, Kathy Venter, Jodi Wilding, Denise Harrison","doi":"10.1177/13674935231176888","DOIUrl":"https://doi.org/10.1177/13674935231176888","url":null,"abstract":"<p><p>Despite known analgesic effects of breastfeeding (BF), skin-to-skin care (SSC), and sweet solutions (sucrose) for newborns, these interventions remain underutilized. Our team produced a five-minute parent-targeted video (BSweet2Babies) demonstrating BF, SSC, and sucrose during newborn blood sampling. We conducted a sequential exploratory mixed-methods study with eight maternal-newborn units across Ontario, Canada to identify barriers and facilitators to implementing the video and the three pain management strategies.Over a 6-month period, data collection included 15 telephone interviews, two email communications, and three community of practice teleconferences with the participating sites (<i>n</i> = 8). We used the Theoretical Domains Framework as the coding matrix. Participants discussed integrating the video in prenatal education and the importance of involving leadership when planning for practice change. Key barriers included lack of comfort with parental presence, perception of high complexity of the strategies, short postpartum stays, competing priorities, and interprofessional challenges. Key facilitators included alignment with the Baby-Friendly Hospital Initiative, modeling by Lactation Consultants, and frequent reminders.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2023-06-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9676500","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 : 2023-06-14DOI: 10.1177/13674935231183491
Ritu Sampige, Leslie Ann Frankel
Food allergy prevalence is increasing among children; however, it is not clear how children's food allergy status impacts family mealtimes. This study's purpose was to systematically synthesize research regarding the relationship between children's food allergies, parental meal-centered stress, and family mealtime dynamics. Data sources for this study include peer-reviewed, English language sources from CINAHL, MEDLINE, APA PsycInfo, Web of Science, and Google Scholar. Five keyword categories (child, food allergies, meal preparation, stress, and family) were utilized to identify sources regarding how food allergies of children (from birth-12 years) relate to family mealtime dynamics or parental meal-centered stress. All 13 identified studies determined that pediatric food allergies relate to either increased parental stress, meal preparation issues, mealtime problems, or changes to family meals. Studies also indicate that meal preparation takes longer, requires more vigilance, and is more stressful due to children's food allergies. Limitations include that most studies were cross-sectional and based on maternal self-report. Children's food allergies are associated with parental meal-centered stress and mealtime issues. However, there is a need for research to account for specific changes to family mealtime dynamics and parent feeding behaviors so that pediatric health care professionals can alleviate parental meal-centered stress and provide guidance towards optimal feeding behaviors.
儿童食物过敏患病率正在上升;然而,目前尚不清楚儿童食物过敏状况如何影响家庭用餐时间。本研究的目的是系统地综合有关儿童食物过敏、父母以用餐为中心的压力和家庭用餐时间动态之间关系的研究。本研究的数据来源包括来自CINAHL、MEDLINE、APA PsycInfo、Web of Science和Google Scholar的同行评审的英文来源。五个关键词类别(儿童、食物过敏、膳食准备、压力和家庭)被用来确定儿童(从出生到12岁)的食物过敏与家庭用餐时间动态或父母以用餐为中心的压力之间的关系。所有13项确定的研究都确定,儿童食物过敏与父母压力增加、饭菜准备问题、用餐时间问题或家庭膳食改变有关。研究还表明,准备饭菜需要更长的时间,需要更多的警惕,并且由于儿童食物过敏,压力更大。局限性包括大多数研究是横断面的,并且基于母亲的自我报告。儿童食物过敏与父母以吃饭为中心的压力和吃饭时间问题有关。然而,有必要对家庭用餐时间动态和父母喂养行为的具体变化进行研究,以便儿科卫生保健专业人员可以减轻父母以用餐为中心的压力,并为最佳喂养行为提供指导。
{"title":"The relationship between children's food allergies and family mealtimes: A systematic review.","authors":"Ritu Sampige, Leslie Ann Frankel","doi":"10.1177/13674935231183491","DOIUrl":"https://doi.org/10.1177/13674935231183491","url":null,"abstract":"<p><p>Food allergy prevalence is increasing among children; however, it is not clear how children's food allergy status impacts family mealtimes. This study's purpose was to systematically synthesize research regarding the relationship between children's food allergies, parental meal-centered stress, and family mealtime dynamics. Data sources for this study include peer-reviewed, English language sources from CINAHL, MEDLINE, APA PsycInfo, Web of Science, and Google Scholar. Five keyword categories (child, food allergies, meal preparation, stress, and family) were utilized to identify sources regarding how food allergies of children (from birth-12 years) relate to family mealtime dynamics or parental meal-centered stress. All 13 identified studies determined that pediatric food allergies relate to either increased parental stress, meal preparation issues, mealtime problems, or changes to family meals. Studies also indicate that meal preparation takes longer, requires more vigilance, and is more stressful due to children's food allergies. Limitations include that most studies were cross-sectional and based on maternal self-report. Children's food allergies are associated with parental meal-centered stress and mealtime issues. However, there is a need for research to account for specific changes to family mealtime dynamics and parent feeding behaviors so that pediatric health care professionals can alleviate parental meal-centered stress and provide guidance towards optimal feeding behaviors.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2023-06-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9624100","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 : 2023-06-08DOI: 10.1177/13674935231183020
Benazir Poya, Maryam Esmaeili, Azam Naghavi
Adolescents' mental health may be influenced either negatively or positively through loss of a parent, especially bereavement due to a traumatic death. This descriptive phenomenological study aimed to investigate Afghan adolescents' post-traumatic growth after traumatic loss of father. The participants were 14 female and male Afghan adolescents who met the inclusion criteria. Post-traumatic growth was substantiated by virtue of post-traumatic growth questionnaire. Data was collected through a semi-structured interview, and Colaizzi analysis method was used for data analysis. Two main themes were extracted: (a) moving forward with hope and (b) factors associated with enhancement of hope. Findings showed that Afghan traumatized adolescents achieved post-traumatic growth over time. The most important factors in enhancement of hopefulness were social support, psychological, and cognitive factors, as well as spiritual well-being. Our findings suggested that both schools and non-governmental organization in Afghanistan may be benefitted from more accessible opportunities to enhance post-traumatic growth for bereaved adolescents.
{"title":"Post-traumatic growth of Afghan adolescents after traumatic loss of father.","authors":"Benazir Poya, Maryam Esmaeili, Azam Naghavi","doi":"10.1177/13674935231183020","DOIUrl":"https://doi.org/10.1177/13674935231183020","url":null,"abstract":"<p><p>Adolescents' mental health may be influenced either negatively or positively through loss of a parent, especially bereavement due to a traumatic death. This descriptive phenomenological study aimed to investigate Afghan adolescents' post-traumatic growth after traumatic loss of father. The participants were 14 female and male Afghan adolescents who met the inclusion criteria. Post-traumatic growth was substantiated by virtue of post-traumatic growth questionnaire. Data was collected through a semi-structured interview, and Colaizzi analysis method was used for data analysis. Two main themes were extracted: (a) moving forward with hope and (b) factors associated with enhancement of hope. Findings showed that Afghan traumatized adolescents achieved post-traumatic growth over time. The most important factors in enhancement of hopefulness were social support, psychological, and cognitive factors, as well as spiritual well-being. Our findings suggested that both schools and non-governmental organization in Afghanistan may be benefitted from more accessible opportunities to enhance post-traumatic growth for bereaved adolescents.</p>","PeriodicalId":54388,"journal":{"name":"Journal of Child Health Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2023-06-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9593225","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: 10.1177/13674935211052842
Ann Dadich, Kaitlyn Hockey, Cathy Kaplun, Catharine Fleming, Nick Hopwood, Khadeejah Moraby, Chris Elliot
Child healthcare can be vexed by moral concerns - this extends to the care of children who tube-feed. Children who tube-feed often receive care from family members and clinicians of various disciplines. Each brings expertise, experiences, values, and views to a situation, prioritising the child's needs while attending to those they deem important in potentially disparate ways. Their understanding of a situation is shaped by beliefs, feelings, and perceptions. How then are key decisions made about the care of a child who tube-feeds? This article explores clinicians' and carers' moral concerns when caring for children who tube-feed. Interviews with clinicians (n = 9) and carers (n = 9) clarified three findings: first, there are often disparate beliefs about the need for tube-feeding; second, tube-feeding can evoke strong emotions; and third, it can be difficult to normalise tube-feeding. This article demonstrates how challenges can emerge when relationships between clinicians and carers diverge. Furthermore, it establishes how an ethic of care can bring different interests together to bolster the relationships required to optimise feeding care and promote health outcomes among children who tube-feed and their carers. This requires improved dialogue between and among clinicians and carers to create shared understandings of what is, what should be, and how to benefit children who tube-feed.
{"title":"Clinician and carer moral concerns when caring for children who tube-feed.","authors":"Ann Dadich, Kaitlyn Hockey, Cathy Kaplun, Catharine Fleming, Nick Hopwood, Khadeejah Moraby, Chris Elliot","doi":"10.1177/13674935211052842","DOIUrl":"https://doi.org/10.1177/13674935211052842","url":null,"abstract":"<p><p>Child healthcare can be vexed by moral concerns - this extends to the care of children who tube-feed. Children who tube-feed often receive care from family members and clinicians of various disciplines. Each brings expertise, experiences, values, and views to a situation, prioritising the child's needs while attending to those they deem important in potentially disparate ways. Their understanding of a situation is shaped by beliefs, feelings, and perceptions. How then are key decisions made about the care of a child who tube-feeds? This article explores clinicians' and carers' moral concerns when caring for children who tube-feed. Interviews with clinicians (<i>n</i> = 9) and carers (<i>n</i> = 9) clarified three findings: first, there are often disparate beliefs about the need for tube-feeding; second, tube-feeding can evoke strong emotions; and third, it can be difficult to normalise tube-feeding. This article demonstrates how challenges can emerge when relationships between clinicians and carers diverge. Furthermore, it establishes how an ethic of care can bring different interests together to bolster the relationships required to optimise feeding care and promote health outcomes among children who tube-feed and their carers. This requires improved dialogue between and among clinicians and carers to create shared understandings of what is, what should be, and how to benefit children who tube-feed.</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":"9668526","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: 10.1177/13674935221143883
Claire Emma Otten, David Moltow, Nenagh Kemp, Rose Enid Nash
An imperative exists to promote health literacy (HL) development in today's young people. Included in curricula worldwide, health literacy has been recognised as a social determinant in its own right, which has the potential to redress inequity and positively impact health and educational outcomes. While it has been shown that schools provide an ideal setting to support HL development, available evidence suggests that health may be undertaught in primary schools, and further resources are required to support educators' inclusion of HL in their lessons. The aims of this paper were to (1) highlight the ethical imperative to promote HL through schools and (2) provide an ethical evaluation of an existing HL intervention. Spike's (2018) four principles for public health ethics were employed as a framework for evaluating a program's ethical status and suitability in the school setting. In this paper, one program, HealthLit4Kids, is evaluated according to Spike's framework, and shown to be an ethically acceptable approach to foster HL in young people. These results model how other HL programs may be evaluated and offer critical insights concerning how HL could be promoted in an ethically acceptable manner in the classroom.
{"title":"The imperative to develop health literacy: An ethical evaluation of HealthLit4Kids.","authors":"Claire Emma Otten, David Moltow, Nenagh Kemp, Rose Enid Nash","doi":"10.1177/13674935221143883","DOIUrl":"https://doi.org/10.1177/13674935221143883","url":null,"abstract":"<p><p>An imperative exists to promote health literacy (HL) development in today's young people. Included in curricula worldwide, health literacy has been recognised as a social determinant in its own right, which has the potential to redress inequity and positively impact health and educational outcomes. While it has been shown that schools provide an ideal setting to support HL development, available evidence suggests that health may be undertaught in primary schools, and further resources are required to support educators' inclusion of HL in their lessons. The aims of this paper were to (1) highlight the ethical imperative to promote HL through schools and (2) provide an ethical evaluation of an existing HL intervention. Spike's (2018) four principles for public health ethics were employed as a framework for evaluating a program's ethical status and suitability in the school setting. In this paper, one program, HealthLit4Kids, is evaluated according to Spike's framework, and shown to be an ethically acceptable approach to foster HL in young people. These results model how other HL programs may be evaluated and offer critical insights concerning how HL could be promoted in an ethically acceptable manner in the classroom.</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":"9614912","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 : 2023-06-01Epub Date: 2020-12-21DOI: 10.1177/1367493520976300
Marjorie Montreuil, Justine Fortin, Eric Racine
Seeking children's assent has been put forward as a way to foster children's involvement in the healthcare decision-making process. However, the functions of the concept of assent within clinical care are manifold, and methods used to recognize children's capacities and promote their involvement in their care remain debated. We performed an instrumentalist concept analysis of assent, with 58 included articles. Final themes were jointly identified through a deliberative process. Two distinct perspectives of assent were predominant: as an affirmative agreement for a specific decision and as part of a continuous, interactive process of care. Differing standards were provided as to how and when to apply the concept of assent. The concept of dissent was largely omitted from conceptions of assent, especially in situations for which children's refusal would lead to severe health consequences. Ethical implications included fostering autonomy, reducing physical/psychological harm to the child, respecting the child as a human being, and fulfilling the universal rights of the child. There remain important gaps in the theory of assent and its desirable and possible practical implications. Practical standards are largely missing, and evidence supporting the claims made in the literature requires further investigation.
{"title":"Children's assent within clinical care: A concept analysis.","authors":"Marjorie Montreuil, Justine Fortin, Eric Racine","doi":"10.1177/1367493520976300","DOIUrl":"10.1177/1367493520976300","url":null,"abstract":"<p><p>Seeking children's assent has been put forward as a way to foster children's involvement in the healthcare decision-making process. However, the functions of the concept of assent within clinical care are manifold, and methods used to recognize children's capacities and promote their involvement in their care remain debated. We performed an instrumentalist concept analysis of assent, with 58 included articles. Final themes were jointly identified through a deliberative process. Two distinct perspectives of assent were predominant: as an affirmative agreement for a specific decision and as part of a continuous, interactive process of care. Differing standards were provided as to how and when to apply the concept of assent. The concept of dissent was largely omitted from conceptions of assent, especially in situations for which children's refusal would lead to severe health consequences. Ethical implications included fostering autonomy, reducing physical/psychological harm to the child, respecting the child as a human being, and fulfilling the universal rights of the child. There remain important gaps in the theory of assent and its desirable and possible practical implications. Practical standards are largely missing, and evidence supporting the claims made in the literature requires further investigation.</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":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38739682","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: 10.1177/13674935221112156
Raíssa Passos Dos Santos, Mary Ellen Macdonald, Franco A Carnevale
Children with medical complexity have been defined within the literature as chronically ill and medically fragile children with complex care needs. Care for these children raises significant ethical and moral considerations. Therefore, this participatory ethnographic study conducted with eight children and their families aimed to better understand the moral experiences of children with medical complexity, based on views of children as moral agents and capable of understanding and expressing interpretations about their lived experiences. Through our participatory hermeneutical ethnographic research, we were able to shed light on how children with medical complexity express their moral experiences within a complex sociopolitical context, perpetuating dominant outlooks on what is considered a "normal" child. Children with medical complexity described their resistance to these dominant views as they strive to be included in discussions about matters that affect them, reacting to painful medical procedures and treatments, and expressing their concerns about their future aspirations. The knowledge advanced by this study about moral experiences of children with medical complexity can inform understandings of children's interests based on their own interpretations within complex sociopolitical contexts that value their lives differently.
{"title":"Moral experiences of children with medical complexity: A participatory hermeneutic ethnography in Brazil.","authors":"Raíssa Passos Dos Santos, Mary Ellen Macdonald, Franco A Carnevale","doi":"10.1177/13674935221112156","DOIUrl":"https://doi.org/10.1177/13674935221112156","url":null,"abstract":"<p><p>Children with medical complexity have been defined within the literature as chronically ill and medically fragile children with complex care needs. Care for these children raises significant ethical and moral considerations. Therefore, this participatory ethnographic study conducted with eight children and their families aimed to better understand the moral experiences of children with medical complexity, based on views of children as moral agents and capable of understanding and expressing interpretations about their lived experiences. Through our participatory hermeneutical ethnographic research, we were able to shed light on how children with medical complexity express their moral experiences within a complex sociopolitical context, perpetuating dominant outlooks on what is considered a \"normal\" child. Children with medical complexity described their resistance to these dominant views as they strive to be included in discussions about matters that affect them, reacting to painful medical procedures and treatments, and expressing their concerns about their future aspirations. The knowledge advanced by this study about moral experiences of children with medical complexity can inform understandings of children's interests based on their own interpretations within complex sociopolitical contexts that value their lives differently.</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/PMC10240624/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9616142","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 : 2023-06-01Epub Date: 2021-12-30DOI: 10.1177/13674935211059041
Amie Koch, Tara Albrecht, Arthi S Kozhumam, Heeyeon Son, Debra Brandon, Sharron L Docherty
Parents of children born with complex life-threatening chronic conditions (CLTCs) experience an uncertain trajectory that requires critical decision making. Along this trajectory, hope plays an influential but largely unexplored role; therefore, this qualitative descriptive study explores how parent and provider hope may influence decision making and care of a child born with CLTCs. A total of 193 interviews from 46 individuals (parents, nurses, physicians, and nurse practitioners) responsible for the care of 11 infants with complex congenital heart disease (CCHD) were analyzed to understand how hope features in experiences related to communication, relationships, and emotions that influence decision making. Overall, parental hope remained strong and played a pivotal role in parental decision making. Parents and professional healthcare providers expressed a range of emotions that appeared to be integrally linked to hope and affected decision making. Providers and parents brought their own judgments, perceptions, and measure of hope to relationships, when there was common ground for expressing, and having, hope, shared decision making was more productive and they developed more effective relationships and communication. Relationships between parents and providers were particularly influenced by and contributory to hope. Communication between parents and providers was also responsible for and responsive to hope.
{"title":"Crossroads of parental decision making: Intersections of hope, communication, relationships, and emotions.","authors":"Amie Koch, Tara Albrecht, Arthi S Kozhumam, Heeyeon Son, Debra Brandon, Sharron L Docherty","doi":"10.1177/13674935211059041","DOIUrl":"10.1177/13674935211059041","url":null,"abstract":"<p><p>Parents of children born with complex life-threatening chronic conditions (CLTCs) experience an uncertain trajectory that requires critical decision making. Along this trajectory, hope plays an influential but largely unexplored role; therefore, this qualitative descriptive study explores how parent and provider hope may influence decision making and care of a child born with CLTCs. A total of 193 interviews from 46 individuals (parents, nurses, physicians, and nurse practitioners) responsible for the care of 11 infants with complex congenital heart disease (CCHD) were analyzed to understand how hope features in experiences related to communication, relationships, and emotions that influence decision making. Overall, parental hope remained strong and played a pivotal role in parental decision making. Parents and professional healthcare providers expressed a range of emotions that appeared to be integrally linked to hope and affected decision making. Providers and parents brought their own judgments, perceptions, and measure of hope to relationships, when there was common ground for expressing, and having, hope, shared decision making was more productive and they developed more effective relationships and communication. Relationships between parents and providers were particularly influenced by and contributory to hope. Communication between parents and providers was also responsible for and responsive to hope.</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/PMC10155486/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9614382","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: 10.1177/1367493519872078
Clare Davies, Jennifer Fraser, Donna Waters
The principle that children and young people are capable of forming their own views, have the right to express those views, and are entitled to have those views taken seriously was introduced by the United Nations Convention on the Rights of the Child (UNCRC) in 1989. The implications for the delivery of healthcare are clear; however, children and young people continue to experience difficulty in having their views heard and taken seriously during healthcare encounters and the effectiveness of the UNCRC, in particular Article 12 appears to be limited. This article will discuss how, 30 years on, significant barriers continue to impede the full implementation of Article 12. In recognition of the limited awareness of its scope or even existence by health professionals working with children, a framework that can facilitate a better understanding of the concept of voice, and articulate healthcare organisations' full responsibilities when it comes to Article 12, is presented.
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