A significant international development agenda in the practice of nurses supporting families with young children focuses on establishing partnerships between professionals and service users. Qualitative data were generated through interviews and focus groups with 22 nurses from three child and family health service organisations, two in Australia and one in New Zealand. The aim was to explore what is needed in order to sustain partnership in practice, and to investigate how the concept of practice architectures can help understand (...) attempts to enhance partnerships between nurses and families. Implementation of the Family Partnership Model (FPM) is taken as a specific point of reference. Analysis highlights a number of tensions between the goals of FPM and practice architectures relating to opportunities for ongoing learning; the role of individual nurses in shaping the practice; relationships with peers and managers; organisational features; and extra‐organisational factors. The concept of practice architectures shows how changing practice requires more than developing individual knowledge and skills, and avoids treating individuals and context separately. The value of this framework for understanding change with reference to context rather than just individual’s knowledge and skills is demonstrated, particularly with respect to approaches to practice development focused on providing additional training to nurses. (shrink)

Concerns about intercultural communication practices in child and family health were raised during a South Australian ethnographic study. The family partnership model was observed as a universal pedagogic tool introduced into the host organisation in 2003. It has a role in shaping and reshaping cultural production within child health practice. In this study, we draw on insights from postcolonial feminist scholarship together with three‐body analysis to critique the theoretical canons of care that inform intercultural communication in (...) the child and family health setting.We contend that although the family partnership model may be very useful, its intended universal application is problematic in the context of multiculture. Issues of race, gender and class were seemingly unattended when using a communication approach based in historical scientific rationalism. Liberal interpretations of discourses of equity and empathy arising out of contemporary models of communication were often adopted by child and family health nurses and protected them from seeing the inherent binaries that constrain practice. Insights from postcolonial feminist thinking enabled us to recognise the problems of applying theory to practice in a linear fashion. We demonstrate the use of three‐body analysis as a deconstruction strategy to refigure how theory might be understood and worked with in the multiculture that is Australia. (shrink)

This book provides the reader with a theoretical and practical understanding of two health care delivery models: the patient/child centred care and family-centred care. Both are fundamental to caring for children in healthcare organizations. The authors address their application in a variety of paediatric healthcare contexts, as well as the ethical and legal issues they raise. Each model is increasingly pursued as a vehicle for guiding the delivery of health care in the best interests of children. Such models (...) of health care delivery shape health care policies, programs, facility design, resource allocation decisions and day-to-day interactions among patients, families, physicians and other health care professionals. To maximize the health and ethical benefits these models offer, there must be shared understanding of what the models entail, as well as the ethical and legal synergies and tensions they can create. This book is a valuable resource for paediatricians, nurses, trainees, graduate students, practitioners of ethics and health policy. (shrink)

Nursing work increasingly demands forms of expertise that complement specialist knowledge. In child and family nursing, this need arises when nurses work in partnership with parents of young children at risk. Partnership means working with parents in respectful, negotiated and empowering ways. Existing partnership literature emphasises communicative and relational skills, but this paper focuses on nurses’ capacities to facilitate parents’ learning. Referring to data from home visiting, day‐stay and specialist toddler clinic services in Sydney, a pedagogical (...) framework is presented. Analysis shows how nurses notice aspects of children, parents and parent–child interactions as a catalyst for building on parents’ strengths, enhancing guided chance or challenging unhelpful constructs. Prior research shows the latter can be a sticking point in partnership, but this paper reveals diverse ways in which challenges are folded into learning process that position parents as agents of positive change. Noticing is dependent on embodied and communicative expertise, conceptualised in terms of sensory and reported channels. The framework offers a new view of partnership as mind‐expanding for the parent and specifies the nurse's role in facilitating this process. (shrink)

The Nurse-Family Partnership, a thirty-year program of research in the United States focused on early childhood preventive intervention, offers a powerful example of the kinds of programs and public policies that Confucian understandings of parent–child relationships and moral cultivation might recommend in contemporary societies today. NFP findings, as well as its theoretical foundations, lend empirical support to early Confucian views of the role of parent–child relationships in human moral development, the nature and possibility of moral self-cultivation, and (...) the task of creating and sustaining a good society, which gives philosophers who are interested in ethical claims that reflect and inform actual practice good reasons to take Confucian ethics seriously. Additionally, the evidence provided by the NFP and early Confucian accounts can both be used to promote social change, which highlights how the sciences and the humanities can work together in complementary ways to address societal problems. (shrink)

Research on nursing ideology and the ethics of child and adolescent psychiatric nursing care is limited. The aim of this study was to describe and explore the ideological approaches guiding psychiatric nursing in child and adolescent psychiatric inpatient wards in Finland, and discuss the ethical, theoretical and practical concerns related to nursing ideologies. Data were collected by means of a national questionnaire survey, which included one open-ended question seeking managers' opinions on the nursing (...) ideology used in their area of practice. Questionnaires were sent to all child and adolescent psychiatric inpatient wards (n = 69) in Finland; 61 ward mangers responded. Data were analysed by qualitative and quantitative content analysis. Six categories - family centred care, individual care, milieu centred care, integrated care, educational care and psychodynamic care - were formed to specify ideological approaches used in inpatient nursing. The majority of the wards were guided by two or more approaches. Nursing models, theories and codes of ethics were almost totally ignored in the ward managers' ideological descriptions. (shrink)

Background Nurses play an integral role in the care of children hospitalised with a serious illness. Although information about diagnostics, treatments, and prognosis are generally conveyed to parents and caregivers of seriously ill children by physicians, nurses spend a significant amount of time at the child’s bedside and have an acknowledged role in helping patients and families understand the information that they have been given by a doctor. Hence, the ethical role of the nurse in truth disclosure to children (...) is worth exploring. Methods A systematic academic database and grey literature search strategy was conducted using CINAHL, Medline Psych Info, and Google Scholar. Keywords used included truth, children, nurse, disclosure, serious illness, and communication. A total of 17 publications of varying types were included in the final data set. Ethical Considerations As this was a review of the literature, there were no direct human participants. Empirical studies included in the review had received ethics approval. Results Of the 17 articles included in the review, only one directly reported on the experiences of nurses asked to withhold the truth from patients. Empirical studies were limited to HIV-positive children and children diagnosed with cancer and the dying child. Conclusion A paucity of literature exploring the experiences, attitudes, and beliefs of nurses with regard to truth-telling to seriously ill children is evident. Little consideration has been given to the role nurses play in communicating medical information to children in a hospital setting. The 17 articles included in the review focused on cancer, and HIV, diagnosis, and end-of-life care. Further research should be undertaken to explore the experiences and attitudes of nurses to clinical information sharing to children hospitalised with a wide range of serious illnesses and in diverse clinical scenarios. (shrink)

Nurses are well positioned to contribute to child protection efforts but are underutilised. This paper describes a critical discursive analysis of nursing responses to child neglect and abuse (CN&A) in British Columbia, Canada. Legal and practice guidelines were analysed alongside nurse interview texts, offering a glimpse into how nurses prevent CN&A in their everyday practice with families. Results show how the primacy of mandatory reporting to child protection authorities coordinates a series of deferrals and how nurses (...) engage with and interrupt these deferrals in everyday practice. Nurses' relational approaches are essential to gain access to the private sphere of the family to assess, plan, elicit cooperation with interventions and monitor the situation. They considered reporting to be one among many possible responses. This study highlights how nursing contributions to prevention are largely overlooked and points to the potential for a more significant role for nurses in a public health approach to child protection. (shrink)

Con el objetivo de diseqar una propuesta de modificacisn al programa de la formacisn de enfermeros y sugerir la inclusisn de temas sobre la discapacidad infantil, que permitan instruir al personal en formacisn, se realizs un estudio descriptivo cualitativo, en dos etapas, en la primera, mediante entrevistas se recogis la opinisn del claustro de profesores de la Licenciatura en Enfermerma de la Universidad de Ciencias Midicas de Camag|ey, en una segunda etapa se aplics el mitodo de Panel de Expertos, en (...) el que participaron diez expertos seleccionados de manera intencional a partir de su prestigio, experiencia y vinculacisn a la docencia, en lo referido al tema. Se analizaron los programas rectores de la carrera de formacisn en Enfermerma. El analisis de los mismos permitis apreciar aspectos tan importantes como el trabajo con la familia del discapacitado, o los procedimientos propios del manejo en el domicilio del discapacitado, los cuales no son objeto de estudio en la carrera. Se diseqs una estrategia curricular teniendo en cuenta los objetivos pedagsgicos a cumplimentar con las modificaciones propuestas. Se impone la necesidad de incluir en los programas de estudios aspectos relacionados con esta compleja tematica. Constituye un reto entonces para la universidad continuar desarrollando estrategias que permitan el desarrollo del proceso docente educativo y garanticen calidad en el egresado. In order to design a modification proposal to the nurses training program and suggest the inclusion of topics on the child disability, enabling to instruct staff in training, a qualitative descriptive study was carried out in two stages. In the first stage, opinions through interviews to the staff of the Nursing Faculty of the University of Medical Sciences of Camag|ey were collected. In the second stage, the method of Experts Panel was applied. Ten experts were chosen intentionally taking into account their prestige, experience and links to teaching in regard to the subject. Guiding programs of the career of nursing training were analyzed. This analysis gave the possibility to appreciate important aspects, such as the work with the family of disabled children, and management procedures in their home, which are not the object of study in the career. A curricular strategy was designed taking into account the educational objectives to be fulfilled with the proposed modifications. It is necessary to include those aspects related to this complex subject in the programs. To continue developing strategies that allow improving the educational teaching process and ensuring the quality of graduated students represents a challenge to the University. (shrink)

The purpose of this study is to understand institutional violence (IV) in the relationships between health professionals, hospitalized children, and family members. This is a qualitative study developed at the pediatric inpatient unit of a university hospital in the city of Salvador, Bahia, Brazil. The research participants consisted of 39 health professionals who specialized in pediatrics and 10 family members of hospitalized children. Semi‐structured interviews were the method used for data collection. Using discourse analysis as a basis and (...) taking a Foucauldian perspective, the researchers observed that the expressions of IV could be traced to abusive power relations within the system. We found four discursive forms within the data set: communication problems as IV, violence through inattention and neglect, violence as an action and consequent materialization on the body, and psychological violence as a submission mechanism. Based on these findings, we argue that professionals, managers, the scientific community, and users might be able to better guarantee the safety of children by recognizing IV and effectively intervening in it. (shrink)

This secondary analysis re‐examined stories of caregiving told by NICU nurses in the southeast US through a trauma theory lens expanding on research surrounding substance‐exposed pregnancies. Narrative analysis identified distress‐related experiences of nurses related to child custody decisions and outcomes, suggesting traumatic stress within this caregiving dynamic. Four distinct story types and three themes were identified across 23 stories, highlighting similarities and differences and illustrating how distress and trauma were experienced and may be manifested in care practices. Study findings (...) suggest cumulative and residual effects from traumatic experiences can impact NICU nurses' well‐being and care provision, in part by promoting anticipatory trauma. The role of relationship‐building with families, as part of family‐centered care, was also implicated in the intensity of distressful experiences and may increase nurses' vulnerability to trauma as well as create pathways to stigmatizing interactions. Incorporating principles of relational ethics into nurse practice guidelines, while recognizing how care work can influence and be influenced by the potential pathways from trauma to stigma, may provide valuable support for nurses. The application of such a framework could potentially reduce distressing and/or traumatic experiences for nurses caring for families with a substance‐exposed pregnancy. (shrink)

This article confronts the challenges and opportunities presented by medical-legal partnerships (MLPs) representing families impacted by the family regulation system. Based on the authors’ experience developing a collaboration between a medical-legal partnership, interdisciplinary law school clinic and nurse home visiting program focused on clients impacted by the family regulation system, the article challenges traditional conceptions of the MLP model and proposes an expanded vision for MLPs to address systemic injustice and improve outcomes for families.

This paper argues the case for taking a critical realist (CR) approach to social work research. The normativity in social work is often under-communicated in the social sciences, resulting in research that has an unclear value base as its starting point. Social work practice promotes social change and people's development, empowerment, and liberation. By taking a CR of view as a starting point for researching social problems, the focus shifts towards explaining phenomena by revealing and discussing the mechanisms through which (...) they are produced and maintained. Child welfare issues are argued to be “wicked problems”, on top of which the practice of social work itself is a complex field. Two studies from the field of child and family welfare are presented here to illustrate how CR has been fruitfully applied in research on such complex phenomena. These two studies comprise research on child protection assessment and parental high conflict. (shrink)

In contemporary Western societies, birthing is framed as transformative for mothers; however, it is also a site for the regulation of women and the exercise of power relations by health professionals. Nursing scholarship often frames migrant mothers as a problem, yet nurses are imbricated within systems of scrutiny and regulation that are unevenly imposed on ‘other’ mothers. Discourses deployed by New Zealand Plunket nurses (who provide a universal ‘well child’ health service) to frame their understandings of migrant mothers (...) were analysed using discourse analysis and concepts of power drawn from the work of French philosopher Michel Foucault, read through a postcolonial feminist perspective. This research shows how Plunket nurses draw on liberal feminist discourses, which have emancipatory aims but reflect assimilatory practices, paradoxically disempowering women who do not subscribe to ideals of individual autonomy. Consequently, the migrant mother, her family and new baby are brought into a neoliberal project of maternal improvement through surveillance. This project – enacted differentially but consistently among nurses – attempts to alter maternal and familial relationships by ‘improving’ mothering. Feminist critiques of patriarchy in maternity must be supplemented by a critique of the implicitly western subject of maternity to make empowerment a possibility for all mothers. (shrink)

Background: Pediatric nursing care involves many significant ethical challenges. Although nurses are broadly recognized as professionals with relevant knowledge about children and families, little is known about how nurses experience ethical concerns in their everyday practice. Objective: The objective of this study was to better understand the moral experiences and related moral distress experiences of nurses working in pediatric settings in Brazil. Design: Interpretative phenomenological study conducted through narrative interviews. Participants and research context: Nine nurses working in three pediatric (...) settings of a teaching hospital in a city of Southern Brazil. Ethical considerations: The study was approved by the Research Ethics Committee of the research site, and research ethics principles were respected throughout the study. Findings: This investigation illuminated a broader dimension of nurses’ moral distress, which was recognized as moral experience. In advancing our understanding of nurses’ moral experiences, engagement was identified as a central phenomenon that is present in the understandings and actions of nurses within their relationships in their daily practice and lived experiences. Three themes were described with regard to nurses’ relationships and their moral experiences: (a) relationship with the healthcare team; (b) relationship with the family; and (c) relationship with the child. Discussion: The findings of this study are congruent with emerging health literature that demonstrated the focus on moral distress as limiting for bioethical inquiry. Moreover, it is important to better understand and recognize nurses’ relational environment and engagements to advance understandings of the ethical dimensions of pediatric nursing practice. Conclusion: This study provides a better understanding on how engagement affects moral experiences, demonstrating how nurses can experience distress but also satisfaction, gratification, rewarding feelings, and a sense of responsibility for the care they provide. (shrink)

The rapidly increasing number of cases of Zika virus and limited understanding of its congenital sequelae (e.g., microcephaly) led to stories of fear and uncertainty across social media and other mass communication networks. In this study, we used techniques generic to netnography, a form of ethnography, using Internet‐based computer‐mediated communications as a source of data to understand the experience and perceptions of families with infants diagnosed with Zika‐related microcephaly. We screened 27 YouTube™ videos published online between October 2015 and July (...) 2016, during which the Zika epidemic started, peaked, and declined. We identified three themes: (a) experiencing the news of a diagnosis of Zika‐associated microcephaly; (b) experiencing feelings and expectations of the ‘imperfect’ child; and (c) seeking to understand microcephaly to care for the child. We found that families experienced distressing feelings of shock, sadness, hopelessness, and pain, while dealing with emerging and sometimes conflicting information being transmitted by news outlets, uncertainty about the child's health, and healthcare providers’ lack of clarity to guide the family members. The ‘unknown’ factor of ZIKA was an additional stressful factor in the experience of the families. (shrink)

Background: Families and clinicians must often weigh competing priorities when making medical decisions for a pediatric patient at the end of life. Few empirical data exist regarding the importance that clinicians place on varying priorities and whether clinical practice conforms to decision-making standards discussed in the literature. Methods: We administered a discrete choice experiment to understand the relative importance of nine pediatric end-of-life decision-making priorities using responses from 364 nurses and physicians from three intensive care units (ICUs) (pediatric ICU, pediatric (...) cardiothoracic ICU, neonatal ICU) in a large children's hospital, with a 54% response rate. We used latent class analysis to characterize subgroups of health professionals based on their patterns of importance for the nine attributes and examined differences in class membership using multinomial logistic regression. Results: Eighty-two percent of respondents were nurses, consistent with the proportion of nurse and physician staff in the units. Latent class analysis separated our sample of health professionals into five distinct classes. All five groups rated the child's comfort and the best interests as most important but differed regarding how they valued other considerations: Group 1 rated highly consideration of the entire family and medical judgment; Group 2, the entire family's interests, parents’ preferences, and religious beliefs; Group 3, maintaining harmony between parents and medical team; Group 4, responsible use of medical resources; and Group 5, medical evidence and prolonging the child's life. Those with more years of experience were less likely to fall in Group 5 (medical evidence/life-prolonging). Profession was not associated with group membership. Conclusions: Nurses and physicians who care for dying children prioritize foremost the child's best interests and comfort but then possess varying secondary priorities about what is most important when making medical decisions. Pediatric palliative care and ethics consultative services should be aware of and prepared to address these differing concerns. (shrink)

In Child Abuse, Family Rights, and the Child Protective System: A Critical Analysis from Law, Ethics, and Catholic Social Teaching, Stephen M. Krason gathers essays by leading scholars and practitioners to comment through the prism of Catholic social thought, on the plight afflicting American families and the role of the child protective system. Here readers will find critical essays on the deleterious effect of the 1974 passage of the Child Abuse Prevention and Treatment Act; assessments (...) of current American policies on child abuse and neglect and the role of the CPS within the context of prevailing international human rights principles and Catholic social teaching; a survey of the enforcement of CPS policies from a legal and constitutional perspective; research data disputing the CPS principle that all parents are potential abusers and illustrating the greater prevalence of abuse and neglect in broken, “blended,” and “untraditional” families; and arguments for poverty and unemployment as the prime culprits in the mistreatment of children. Also included are the amicus curiae briefs that the Society of Catholic Social Scientists submitted in two U.S. Supreme Court cases on parental rights, the CPS, and state control over the family. (shrink)

The aim of this study was to develop the concept of the dignified death of children in Brazilian pediatric intensive care units (PICUs). The Hybrid Model for Concept Development was used to develop a conceptual structure of dignified death in PICUs in an attempt to define the concept. The fieldwork study was carried out by means of in-depth interviews with nine nurses and seven physicians working in PICUs. Not unexpectedly, the concept of dignified death was found to be a complex (...) phenomenon involving aspects related to decisions made by the multidisciplinary team as well as those related to care of the child and the family. Knowledge of the concept’s dimensions can promote reflection on the part of healthcare professionals regarding the values and beliefs underlying their conduct in end-of-life situations. Our hope is that this study may contribute to theoretic and methodological development in the area of end-of-life care. (shrink)

The aim of this study was to develop the concept of the dignified death of children in Brazilian pediatric intensive care units (PICUs). The Hybrid Model for Concept Development was used to develop a conceptual structure of dignified death in PICUs in an attempt to define the concept. The fieldwork study was carried out by means of in-depth interviews with nine nurses and seven physicians working in PICUs. Not unexpectedly, the concept of dignified death was found to be a complex (...) phenomenon involving aspects related to decisions made by the multidisciplinary team as well as those related to care of the child and the family. Knowledge of the concept’s dimensions can promote reflection on the part of healthcare professionals regarding the values and beliefs underlying their conduct in end-of-life situations. Our hope is that this study may contribute to theoretic and methodological development in the area of end-of-life care. (shrink)

After four decades of China’s family planning policy, the shrinking family size and increasing life expectancy pose special challenges for the one-child generation in terms of providing care for aging parents. The current study explored young adults’ responses to such pressure by examining their concerns about elder care, attitudes toward nursing homes, and living arrangement after marriage in a sample of 473 Chinese working young adults from six cities in China. Results showed that although most of (...) the young adults reported to have thought about the issue of parents’ elder care, the majority did not worry a lot about it. Only children expressed similar levels of worrying as those with siblings did. However, educational level, rather than sibling status, was systematically related to concerns about parents’ elder care and attitudes toward nursing homes. People with higher education tended to worry less about elder care, and were less likely to consider placing parents in nursing homes as a violation of filial piety. Analyses of the married sub-sample revealed that only children were more likely to co-reside with parents after marriage than those with siblings. And the main reason for co-residence was that the younger generation needed their parents’ help for childcare, rather than to better take care of their parents. Implications for parents’ elder care among Chinese only children were discussed. (shrink)

First published in 1999. Routledge is an imprint of Taylor & Francis, an informa company.

This article examines the involvement of residents and their relatives in end-of-life decisions and care in Norwegian nursing homes. It also explores challenges in these staff—family relationships. The article is based on a nationwide survey examining Norwegian nursing homes’ end-of-life care at ward level. Only a minority of the participant Norwegian nursing home wards ‘usually’ explore residents’ preferences for care and treatment at the end of their life, and few have written procedures on the involvement of (...) family caregivers when their relative is in the terminal phase. According to the respondents, most staff seem to comfort relatives well. However, several challenges were described. The study revealed a need for better procedures in the involvement of residents and relatives in nursing home end-of-life care. The findings emphasize a need to strengthen both the involvement of nursing home physicians and staff communication skills. (shrink)

Background: Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear. Objective: The objective of this dimensional analysis was to describe the nature of family moral distress in serious pediatric illness. Design and methods: A dimensional analysis of articles retrieved from a librarian-assisted systematic review of Scopus, CINAHL, and PsychInfo was conducted, focusing on how children, parents, other family members, and healthcare providers describe parental moral (...) distress, both explicitly through writings on parental moral experience and implicitly through writings on parental involvement in distressing aspects of the child’s serious illness. Ethical considerations: To promote child and family best interest and minimize harm, a nuanced understanding of the moral, existential, emotional, and spiritual impact of serious pediatric illness is needed. The cases used in this dimensional analysis come from the first author’s IRB approved study at the Children’s Hospital of Philadelphia and subsequent published studies; or have been adapted from the literature and the authors’ clinical experiences. Findings: Three dimensions emerged from the literature surrounding parent moral distress: an intrapersonal dimension, an interpersonal dimension, and a spiritual/existential dimension. The overarching theme is that parents experience relational solace and distress because of the impact of their child’s illness on relationships with themselves, their children, family, healthcare providers, their surrounding communities, and society. Discussion: Elucidating this concept can help nurses and other professionals understand, mitigate, or eliminate antecedents to parental moral distress. We discuss how this model can facilitate future empirical and conceptual bioethics research, as well as inform the manner in which healthcare providers engage, collaborate with, and care for families during serious pediatric illness. Conclusion: Parent moral distress is an important and complex phenomenon that requires further theoretical and empirical investigation. We provide an integrated definition and dimensional schematic model that may serve as a starting point for future research and dialogue. (shrink)

Spinal muscular atrophy (SMA) type 1 is a genetic neuromuscular disease in children that leads to degeneration of spinal cord motor neurons. This sometimes results in severe muscular paralysis requiring mechanical ventilation to sustain the child’s life. The onset of SMA type 1, the most severe form of the disease, is during the first year of life. These children become severely paralysed, but retain their intellectual capacity. Ethical concerns arise when mechanical ventilation becomes necessary for survival. When professionals assess (...) the resulting life for the child and family, they sometimes fear it will result in unreasonably excessive care. The aim of this article is to present an analysis of ethical arguments that could support or oppose the provision of invasive ventilation in this population. This examination is particularly relevant as France is one of the few countries performing tracheotomies and mechanical ventilation for this condition. (shrink)

The purpose of this study is to analyze the experience of hope that appears in a parent's blog presenting everyday life while caring for a child with Trisomy 18 (Edwards syndrome). The author, Rebekah Peterson, began her blog on 17 March 2011 and continues to post information on her son Aaron's care. The analysis of hope in the blog is carried out using a mixed methodology: initial and focused coding using Charmaz's constructed grounded theory and elements of Colaizzi's method. (...) Each aspect of hope is coded through the blog author's statements, from which three main aspects of hope emerge: hope for the longest possible presence of Aaron with his family, hope for control over situations, pain, and symptoms, and existential facets of hope. These various aspects reveal to what extent the experience of hope is unique. Additionally, analyzing the experience of parental hope uncovers the additional problem of inappropriate communication by health care professionals (HCPs) in intensive care units, particularly when discussing the termination of causal treatment. The problem may be solved through proper education for HCPs and serious consideration of parental involvement in order to properly elaborate guidelines on this issue. The three main aspects of parental hope discussed in this paper might expand knowledge on the issue, helping HCPs to better understand the parents' experience of care and to help sustain parental hope in pediatric palliative care. (shrink)

Information on the factors influencing parents’ decision-making process following a lethal, life-limiting or severely debilitating prenatal diagnosis remains deficient. A comprehensive systematic review and meta-synthesis was conducted to explore the influencing factors for parents considering termination or continuation of pregnancy following identification of lethal, life-limiting or severely debilitating fetal abnormalities. Electronic searches of 13 databases were conducted. These searches were supplemented by hand-searching Google Scholar and bibliographies and citation tracing. Thomas and Harden’s thematic synthesis method was used to synthesise data (...) from identified studies. Twenty-four papers were identified and reviewed, but two papers were removed following quality assessment. Three main themes were identified through systematic synthesis. Theme 1, entitled ‘all life is precious’, described parents’ perception of the importance of the fetus’ life, a fatalistic view of their situation alongside moral implications as well as the implications decisions would have on their own life, in consideration of previous life experiences. Theme 2 contained two sub-themes which considered the parent’s own imagined future and the influence of other people’s experiences. Finally, Theme 3 presented three sub-themes which may influence their parental decision-making: These described parental consideration of the quality of life for their unborn child, the possibility of waiting to try for another pregnancy, and their own responsibilities and commitments. The first review to fully explore parental decision-making process following lethal, life-limiting, or severely debilitating prenatal diagnosis provided novel findings and insight into which factors influenced parents’ decision-making process. This comprehensive and systematic review provides greater understanding of the factors influential on decision-making, such as hope, morality and potential implications on their own and other’s quality of life, will enable professionals to facilitate supported decision-making, including greater knowledge of the variables likely to influence parental choices. (shrink)

This study explores child health care nurses’ pedagogical knowledge when supporting parents in their parenthood using various teaching practices, that is how to organise and process the content during parent education groups in primary health care. The aim is to identify teaching practices used by child health care nurses and to analyse such practices with regard to Aristotle's three forms of knowledge to comprehensively examine child health care nurses’ use of knowledge in practice. A qualitative methodological design (...) alongside the analysis of video‐recordings was used. The results showed that child health care nurses used four teaching practices: lecturing, demonstration, conversation and supervision. Their use of episteme was prominent, but they also seemed to master techne in combination with episteme during the first three teaching practices. During the conversation teaching practice, the child health nurses rarely succeeded. Consequently, they missed opportunities to identify mothers’ expressed concerns and to act in the best interests of both the mothers and their infants by the use of phronesis. In health care, however, theoretical episteme is superordinate to productive knowledge or phronesis, which also became evident in this study. Nevertheless, more interactive pedagogical practices are needed if more use of phronesis is to become a reality in parent education groups. (shrink)

Inequitable access to health care, social inequities, and racist and discriminatory care has resulted in the trend toward poorer health outcomes for Indigenous infants and their families when compared to non‐Indigenous families in Canada. How Indigenous mothers experience care during an admission of their infant to the Neonatal Intensive Care Unit has implications for future health‐seeking behaviors which may influence infant health outcomes. Nurses are well positioned to promote positive health care interactions and improve health outcomes by effectively meeting the (...) needs of Indigenous families. This qualitative study was guided by interpretive description and the Two‐Eyed Seeing framework and aimed to understand how Indigenous mothers experience accessing and using the health care system for their infants. Data were collected by way of interviews and a discussion group with self‐identifying Indigenous mothers of infants less than two years of age living in Hamilton, Ontario, Canada. Data underwent thematic analysis, identifying nursing strategies to support positive health care interactions and promote the health and wellness of Indigenous infants and their families. Building relationships, providing holistic care, and taking a trauma‐informed approach to the involvement of child protection services are three key strategies that nurses can use to positively impact health care experiences for Indigenous families. (shrink)

Background: Paediatric nurses often face complex situations requiring decisions that sometimes clash with their own values and beliefs, or with the needs of the children they care for and their families. Paediatric nurses often use new technology that changes the way they provide care, but also reduces their direct interaction with the child. This may generate ethical issues, which nurses should be able to address in the full respect of the child. Research question and objectives: The purpose of (...) this review is to describe the main ethical dimensions of paediatric nursing. Our research question was, ‘What are the most common ethical dimensions and competences related to paediatric nursing?’ Research design: A rapid evidence assessment. Method: According to the principles of the rapid evidence assessment, we searched the PubMed, SCOPUS and CINAHL databases for papers published between January 2001 and March 2015. These papers were then independently read by two researchers and analysed according to the inclusion criteria. Ethical considerations: Since this was a rapid evidence assessment, no approval from the ethics committee was required. Findings: Ten papers met our inclusion criteria. Ethical issues in paediatric nursing were grouped into three areas: (a) ethical issues in paediatric care, (b) social responsibility and (c) decision-making process. Conclusion: Few studies investigate the ethical dimensions and aspects of paediatric nursing, and they are mainly qualitative studies conducted in critical care settings based on nurses’ perceptions and experiences. Paediatric nurses require specific educational interventions to help them resolve ethical issues, contribute to the decision-making process and fulfil their role as advocates of a vulnerable population (i.e. sick children and their families). Further research is needed to investigate how paediatric nurses can improve the involvement of children and their families in decision-making processes related to their care plan. (shrink)

The problem is pain. Patients and their families tell the story:He is your son. You love him. You want to help him in every way you can, but when he is in that kind of pain, you are helpless in a sense. Im his daddy. It was-what was I supposed to do for him? I felt, you know, helpless.It terrifies you. You want to run away from it. Pain is something you wish would kill you but does not. Agony results (...) from the pain that does not have the decency to knock you out.[W]e had a good family, but how much can you watch? How much suffering can you watch from your child, your 7-year-old child, and still keep your mind?I am a forty-six-year-old registered nurse who specializes in oncology care and education. I am also a patient who suffers from chronic nonmalignant pain, and this malady has been the most frightening, the most humiliating, and the most difficult ordeal of my life. (shrink)

Background: Compassion is the core of nursing care and the basis of ethical codes. Due to the complex and abstract nature of this concept, there is a need for further investigations to explore the meaning and identify compassionate nursing care. Objectives: The purpose of this study was to identify and describe compassionate nursing care based on the experiences of nurses, patients, and family caregivers. Research design: This was a qualitative exploratory study. Data were analyzed using the (...) conventional content analysis method. Participants and research context: Nurses, hospitalized patients, and family caregivers in different educational hospitals in an urban area of Iran were selected from February 2016 to December 2017 using a purposeful sampling method (n = 34). In-depth and semi-structured interviews, focus group interviews, and field notes were used for data collection. Ethical considerations: The study was approved by the University’s Ethics Committee. The participants were informed about the aim and method of the study, reasons for recording the interviews, confidentiality of data, and voluntary nature of participation in this study. Findings: Data from interviews and filed notes were analyzed and classified into three themes: “effective interaction,” “professionalism,” and “continuous comprehensive care.” Discussion and conclusion: Emerged themes of this study involved holistic care in the current literature on nursing with an emphasis on effective interaction and professionalism. Nurses can understand patients’ and family caregivers’ comprehensive needs through interaction skills. In addition, clinical proficiency, maintaining professional ethics’ standards along with holism, and continuity in care are examples of compassionate care. Education program about compassionate care can enhance the quality of nursing care. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:The Princess and the Philosopher: Letters of Elisabeth of the Palatine to Rene DescartesRichard A. WatsonAndrea Nye. The Princess and the Philosopher: Letters of Elisabeth of the Palatine to Rene Descartes. Lanham, MD: Rowman & Littlefield, 1999. Pp. xiii + 187. Cloth, $57.95. Paper, $18.95.Princess Elisabeth was an acute, persistent critic of Descartes's philosophy. Because he liked her and she was a princess, Descartes did not dismiss her (...) criticisms as he did those of Gassendi and Hobbes. How can an immaterial mind interact with a material body? How can God determine all our actions and yet give us free will? Elisabeth was dissatisfied with Descartes's answer that an all-powerful God can do anything even if we cannot understand how.Andrea Nye analyzes the correspondence between Elisabeth and Descartes to support the thesis that Elisabeth developed and defended a worldly philosophy of life in opposition to the unworldly rules Descartes offered for living a tranquil and happy life. Descartes said she should focus on the separation of the mind from the body to avoid disturbing the intellect with sensory matters. Think positively about such nice things as birds and flowers and not of bad things that happen to one. Descartes told Elisabeth that "there are no events so dreadful, nor so absolutely bad in the judgments of people, that a person of spirit cannot look on them with a bias that makes them appear favorable" (48). If we do our best to find out the right course of action and act accordingly, then even if the results are bad, we have no reason for remorse or recrimination, but can be happy that we have done the best we can. Descartes even says that a person who follows his rules can view everything that happens to him, even the worst, as though these events were taking place in a theatre, for in the end they do not impinge upon the ultimate happiness of one's immortal soul.Elisabeth, earnestly. sardonically, and sometimes with annoyance responds that this is perhaps possible for a single man of independent means with few civil and personal relationships, but for someone engaged in family affairs, royal politics, and social interaction with other human beings, Descartes's philosophy of life is both impossible and wrong. One never knows what is best; even if one did know, it is difficult to carry it out; and finally, if the results are bad, then one is after all responsible. One would be inhuman to deny fault, monstrous to deny moral responsibility. Above all, Elisabeth says, one should not view one's own life as theatre. One must be responsible for oneself and others.Nye casts this as a difference between Descartes's abstract and Elisabeth's particularist approaches to life, but also as a contrast between those who can live a disengaged life and those who cannot. Some of the amusement in Nye's perceptive discussions comes from her showing how Descartes's passions often run away with him, and how Elisabeth gently turns his own rules back onto him. [End Page 277]Nye's analyses of the correspondence are excellent, but she makes some mistakes about the lives of Descartes and Elisabeth. Nye explains Descartes's coolness by his having suffered from a "motherless infancy" (129), even speaking of "the mother's milk denied him as a child" and calling him an "orphan" (156), which he was not. His mother died thirteen months after his birth, but he had a wet nurse. Descartes may never have tasted his own mother's milk, but he was never deprived of nursing. Children were often sent to live with wet nurses for as long as four years, although Descartes is traditionally said to have been raised by his grandmother. In any event, such psychoanalyzing is off the mark.Nye also says that Descartes was asked by Queen Christina to write a ballet. She cites the wrong ballet and attributes a verse from the right ballet incorrectly, but beyond that, there is no evidence either that Descartes wrote verses for a ballet or that Christina asked him to.Then Nye speaks of Descartes's daughter Francine... (shrink)

Child abuse within the family is a highly sensitive issue and therefore difficult to research. This article is based on our experiences of a child abuse research project in Finland. Special attention is given to ethical considerations during the initiation of the study, and in the sampling procedures, data collection and reporting. Most importantly, all those taking part in studies on sensitive issues must be guaranteed full confidentiality and anonymity. There are also other ethical considerations that go (...) beyond the usual concerns in the research process. (shrink)

Two pediatric accidents in Jane Austen’s Persuasion and one in Margaret Oliphant’s The Doctor’s Family are examined from the point of view of trauma management with analysis of contributing risk factors, medical management, concerns of parents and bystanders, and course of recovery. Risk factors for injury are impulsivity, poor supervision, and parents who are unable to set limits. Medical attention is swift and competent, but no heroic measures are used; the management of the injuries, concussion with loss of consciousness (...) and dislocation of the collar bone, is consistent with the way these conditions are, for the most part, still managed today, and successful recovery depends on careful nursing and rest. Louisa Musgrove, who suffers a severe head injury, requires ten weeks of convalescence and undergoes a marked personality change, which we might today attribute in part to post-concussion syndrome but which may reflect contemporary debate about the biological basis of personality and behavior. A sudden traumatic injury to a child or adolescent changes the narrative abruptly, in fiction or in life, dividing a story into before and after, introducing grief and anxiety, and requiring that plans be rethought and personal relationships reshuffled with decisions about caretaking and nursing. (shrink)

The two cases presented here may at first seem very different: one patient was an adult, making autonomous decisions for herself and her fetus; the other was a child too young to meaningfully participate in the most significant decisions regarding his health. In both cases, healthcare professionals had to determine the extent to which the parents of a dying fetus or child should be permitted to make agonizing choices about how long to maintain hope and what that death (...) will look like; and in both, health professionals’ prognostications influenced their judgments about the patients’ best interests and whether they were candidates for certain interventions. While members of both healthcare teams questioned the patients’ and families’ ability to objectively consider the risks and benefits, the families were focused on the need to be able to live with the decisions made, regardless of outcome. Clinicians expressed unwillingness to perform physical actions they felt were more likely to promote harm and suffering than benefit, and experienced attendant moral distress in the face of conflicting values. In this regard, these cases are mirror images: only in the first case did the clinician, an obstetrician, have sufficient professional authority to refuse to perform the desired intervention. In the second case, the clinicians who expressed the most distress regarding the patient’s trajectory were the nurses, who largely lacked similar autonomy. Viewed together, these cases share a core question: What does paternalism look like in the contemporary era? (shrink)

Background: Frequent exposure to ethical conflict and a perceived lack of organizational support to address ethical conflict may negatively influence nursing family care in the intensive care unit. Research aims: The specific aims of this study were to determine: (1) if intensive care unit climate of care variables (ethical conflict, organizational resources for ethical conflict, and nurse burnout) were predictive of nursing family care and family wellbeing and (2) direct and indirect effects of the climate (...) of care on the quality of nursing family care and family wellbeing. Research design: A cross-sectional, correlational design was used. Participants and research context: Convenience sample of 111 nurses and 44 family members from five intensive care units at a Midwest hospital in the United States. Instruments: The Ethical Conflict Questionnaire-Critical Care Version, Maslach Burnout Inventory-Human Services Survey and Hospital Ethical Climate Scale were used to measure climate of care. The Family-Centered Care-Adult Version and Nurse Provided Family Social Support Scale were family measures of the quality of nursing family care. The Family Wellbeing Index was used to measure family wellbeing. Data analysis: Hierarchical regression and mediation analysis were used to answer the study aims. Ethical considerations: The study was approved by the Institutional Review Board at the study site. Findings: In separate regression models, organizational resources for ethical conflict (β =.401, p =.006) and depersonalization (β = −.511, p =.006), a component of burnout, were significant predictors of family-centered care. In simple mediation analysis the relationship between organizational resources for ethical conflict and family-centered care was mediated by depersonalization (β =.341, 95% confidence interval (.015,.707)). Discussion: Inadequate organizational resources and depersonalization may be related to family care delivery, and present obstacles to family-centered care in the intensive care unit. Conclusion: Further research to explicate the relationships among organizational resources, ethical conflict, burnout, and family-centered care is needed to guide the development of effective interventions that enhance the quality of nursing family care in the intensive care unit. (shrink)

Background:Moral distress is a significant concern for nurses as it can lead to burnout and intentions to leave the profession. Pediatric nurses encounter stressful and ethically challenging situations when they care for suspected victims of child maltreatment. Data on pediatric nurses’ moral distress are limited, as most research in this field has been done in adult inpatient and intensive care units.Aim:The purpose of this study was to describe pediatric nurses’ moral distress and evaluate the impact of caring for suspected (...) victims of child maltreatment on nurses’ moral distress, burnout, and intention to leave. Design and method: This descriptive cross-sectional correlational study was conducted in a mid-Atlantic, urban area Magnet pediatric level I trauma center that cares for over 1800 cases of suspected child maltreatment annually. An anonymous electronic survey was sent to all the nurses working at the hospital.Ethical considerations:Institutional Review Board approval was received from the first author’s university and the hospital where the study was conducted.Findings:Overall, nurses ( N = 146) reported low levels of moral distress with a mean score of 59.54 (SD = 49.22) and a range of 0–300 on the Moral Distress Scale Neonatal–Pediatric version. Although the frequency of caring for suspected child maltreatment victims did not affect nurses’ moral distress, caring for victims with fatal maltreatment contributed to nurses’ intention to leave, χ2(1) = 5.35, p = 0.02.Conclusion:The results of this study add to the understanding of moral distress in pediatric nursing. Caring for victims with fatal maltreatment impacts pediatric nurses’ intention to leave. (shrink)

This paper applies a relational and familial ethic to address concerns relating to nursing home deaths and advance care planning during Covid‐19 and beyond. The deaths of our elderly in nursing homes during this pandemic have been made more complicated by the restriction of visitors even at the end of life, a time when families would normally be present. While we must be vigilant about preventing unnecessary deaths caused by coronavirus outbreaks in nursing homes, some deaths of (...) our elders are inevitable. Thus, it is essential that advanced care planning occurs in a way that upholds the familial and relational aspects of elders’ lives that often matter to them the most. We invoke concepts from feminist ethicists like Hilde Lindemann and Eva Kittay and introduce Avery Weisman and Thomas Hackett’s concept of “appropriate death” to suggest better ways of planning for those deaths of our elderly that cannot be avoided. Our hope is to allow for deaths that are as meaningful as possible for both the elderly and the family members who survive them. (shrink)

A father brings his six-year-old daughter and her older sister to their pediatrician to be evaluated for a history of cough, runny nose, and low-grade fever. In addition to signs of a cold, the girl's nasal bridge is quite swollen and bruised. When asked how her nose was injured, she shrugs, and her father's only conjecture is that she sleepwalks and might have bumped into something. The father sits impatiently and as questioning progresses becomes increasingly defensive, at one point angrily (...) declaring, “We don't beat our kids, if that's what you’re asking.” Further complicating the situation is information from nurses that this family is “on the brink” socially and financially, and that additional stress is likely “to blow this family apart.” A careful physical exam identifies no other injuries, and a thorough review reveals no evidence of prior suspicious injuries, frequent visits to the emergency room, or bleeding abnormalities. The evidence does not point to abuse as the most likely explanation for the injury, but it clearly is not ruled out. Should one report this family for suspected abuse? Is one required to report? (shrink)

_What place do Anna Freud’s ideas have in the history of psychoanalysis? What can her writings teach us today about how to work therapeutically with children? Are her psychoanalytic ideas still relevant to those entrusted with the welfare of infants and young people? _ _Reading Anna Freud_ provides an accessible introduction to the writings of one of the most significant figures in the history of psychoanalysis. Each chapter introduces a number of her key papers, with clear summaries of the main (...) ideas, historical background, a discussion of the influence and contemporary relevance of her thinking, and recommendations for further reading. Areas covered include Anna Freud’s writings on: • The theory and practice of child analysis and 'developmental therapy' • The application of psychoanalytic thinking to education, paediatrics and the law • The assessment and diagnosis of childhood disorders • Psychoanalytic research and developmental psychopathology Nick Midgley draws on his extensive experience as a child psychotherapist and a teacher to bring Anna Freud's ideas to life. He illustrates the remarkable originality of her thinking, and shows how analytic ideas can be used not only in child psychotherapy, but also to inform the care of children in families, hospitals, classrooms, residential care and the court-room. __Reading Anna Freud__ will be of interest to child therapists, child analysts and psychoanalysts, as well as others working in the field of child and adolescent mental health, such as clinical psychologists, child psychiatrists and educational psychologists. It also has much to offer to those entrusted with the care of children in a wide range of settings - including teachers, nurses and social workers - for whom Anna Freud was always keen to demonstrate the value of a psychoanalytic approach. _Nick Midgley_ trained as a child and adolescent psychotherapist at the Anna Freud Centre, where he now works as a clinician and as Programme Director for the MSc in Developmental Psychology and Clinical Practice. Nick has written articles on a wide range of topics and is joint editor of _Minding the Child: Mentalization-based Interventions with Children, Young People and their Families_ and _Child Psychotherapy and Research: New Directions, Emerging Findings_. (shrink)

Research ethics is always important. However, it is especially crucial with sensitive research topics such as family violence. The aim of this article is to describe and discuss some crucial issues regarding intimate partner violence and child maltreatment, based on the authors’ own research experiences. We focus on and discuss examples concerning the definition of family violence, research design, ethical approval, participant recruitment and safety and data collection and processing. During the research process, the significance of teamwork (...) is emphasized. Support provided by the participants to each other and support given by experienced researchers within the team is very important for high ethical standards. (shrink)

This book examines the negative power that child maltreatment has on individuals and society ethically and politically, while analyzing the positive power that parental love and healthy families have. To address how best to confront the problem of child maltreatment, it examines several policy options, ultimately defending a policy of licensing parents, while carefully examining the tension between child and adult rights and duties.

SWORD W, CLARK AM, HEGADOREN K, BROOKS S and KINGSTON D. Nursing Inquiry 2012; 19: 51–62 The complexity of postpartum mental health and illness: a critical realist studyPostpartum depression (PPD) is a major public health issue that profoundly impacts the woman, her infant and family. Although it may be linked to hormone changes, no direct hormonal aetiology has been established. A large body of evidence implicates numerous psychosocial predictors of PPD. While a history of depression predicts about 50% (...) of cases of PPD, it remains unclear why some women with a history do not develop depression following childbirth, even taking psychosocial factors into account. The aim of this study was to identify the main mechanisms and factors associated with the presence or absence of PPD in women with a history of depression, and the presence of PPD in women without a history, using a critical realist approach. The findings indicate a number of personal and contextual factors that influence postpartum mental health and illness. In addition, and perhaps most importantly, women who did not develop depression identified goal‐oriented actions that were protective. These factors and processes did not exist in isolation and the interplay among them in influencing health was apparent. More research is needed to explore the effects of these mechanisms in different contexts. (shrink)